Long time since I've been here.

I can't believe I was so completely absorbed in taking care of mom that my world as I once knew it was obliterated for so many years. My apologies to all the wonderful people who faithfully read my blog; I not only abandoned myself, I abandoned you.

But I never abandoned mom.  Trying to catch you up on all these past years would take a post so long that I doubt the blog could hold. So let me just say that I sit here after reading bits and pieces of this blog finding myself in awe of how I used to write and all the great people who helped me during those days.

For those who don't already know, my mom's struggle with Alzheimer's ended June 15, 2014.  Yes, Father's Day. Just like I found my dad's death on the first day of Spring appropriate, I find my mom's death on Father's Day appropriate as well.  She finally got to be with him to celebrate his day.

It's been over a year since mom passed and I still find myself walking around her house wondering what to do; start renovating this 100-year-old home, take time to grieve (don't think I've done that yet); or get my act together and try to pick up a life I've forgotten how to live.

Guess I'll get to work on all three challenges. But first I need to figure out who I am again.

So, I guess I'll do what always came naturally to me: Write.

Labels: Alzheimer's, struggle, grieve, write

Nothing Ever Stays The Same

The frequency of my posts most certainly hasn’t increased and neither has my visits to other’s blogs to keep updated on what’s been happening in everyone else’s life. It’s sad. Sad, because I come back and find that Robyn lost her mother in January during my absence. I’m so sorry that I wasn’t there for you, Robyn. My thoughts and prayers are with you and your family.

I was finding it more and more difficult to find time to spend on the computer, but to come back and read the news of Robyn’s mom and find that many of my friends have quit blogging has saddened me even more. Nothing ever stays the same.

I’ve felt lost lately. During the whole month of January, I had bronchitis and pneumonia again. I placed Mom in the assisted living from January 5th through the 25th so I might be able to recuperate and gain a little energy to bring her back home to continue on this journey of Alzheimer’s with her. We were snowed and iced in the whole week after I brought her home. Unable to get off this little mountain, I spent the last week of January concocting ways to keep her and myself busy. We did everything from coloring to baking and I found myself exhausted again by the first week of February.

Once the driveway was cleared, Mom and I were back on our routine schedule—I took her to day care, spent the days trying to catch up on sleep, grocery shopping, preparing everything for taxes, and all the normal running that one does to keep two households afloat.

On February 11th, on the way to day care, Mom complained of a headache, nausea, and dizziness. By the time we reached the front door of the day care, her legs became weak and she had turned ashen white. The caretakers at the day care grabbed a wheelchair for her to sit for a moment. A few minutes later we had her back in the car and I was on my way to the hospital with her. At the hospital, after routine blood tests, chest x-ray, and CAT scan, the ER doctor said she had a very slight start of a UTI, a very slight start of pneumonia, and no indication of stroke. He prescribed antibiotics and sent her home. He said she could continue going to day care because the antibiotics would knock both the UTI and pneumonia out within three or four days since they were caught very early.

Mom seemed to be doing fine other than an increase in her confusion. Monday, February 16th when I arrived at day care to pick her up, the nurse greeted me at the door. Mom was in a wheelchair and the nurse said Mom was having a difficult time walking and her confusion had increased. It took three of the caretakers to get her to the bathroom during the day and two of us to get her into the car. I called Two Feather to meet me at Mom’s house and he helped get her out of the car, into the house, and onto a chair at the kitchen table. Her legs were very weak, she was out of breath, and she was complaining of nausea and a headache. I called her doctor to explain what was going on and told him I was going to call the ambulance to have her taken to the hospital.

More of the same tests that were run six days earlier came back negative—no UTI, no pneumonia, and no sign of stroke. Yet, Mom was increasingly confused and her legs were increasingly weaker. She was sent down to physical therapy each of the four days she was hospitalized. Her doctor suggested I have her sent to a skilled nursing facility for continued physical therapy. So, on February 19th, Mom was transported to the skilled floor above where she had been in assisted living while I recuperated when I was ill.

Mom’s been there ever since—in a wheelchair. She’s receiving speech, occupational, and physical therapy every day and will through the end of March.

It’s been three weeks since Mom has been home and I find it increasingly difficult to deal with. It’s not like placing her for a respite care where I know when she’s coming home. It’s heartbreaking. I visit her every day. Some days are good visits when I wheel her down to the daily activity, play bingo, or we sit in her room and talk. Other days are excruciating when she cries and begs me to take her home. Good visit or bad, I always come back home feeling empty inside except for the overwhelming feeling that creeps in that I’ve let her down.

I don’t know what will come from her therapy, what will happen next, or whether or not she will regain her strength, but I do know that walking into her empty house doesn’t prepare me for any of it. Everything in the house is the same—except she’s not here. I walk around glancing at her things and cry constantly. Visiting her every day is not the same as having her home. I miss her terribly.


I love you, Mom.

The Last Month of the Year

Here it is the last month of the year and I sit wondering where the year has gone. As I look back at some of my earlier posts, I become more and more aware of Mom’s mental and physical decline. She rarely knows my name. She sometimes know I’m her daughter, and even when she utters the word, she doesn’t comprehend that me being her daughter means that she is my mother.

Most of the time, Mom has no idea where she is, even when she’s home, and I’m just a nice, pretty lady who sits and talks with her and treats her very good.

We’re no longer living with a moment-to-moment memory—we’re living second-to-second. It is so heartbreaking watching Alzheimer’s take her mind.

The day care is decorating for Christmas. They already have an artificial tree decorated. On Friday, they said they wanted a small, real pine tree (a Charlie Brown tree) to set beside a cardboard fireplace decoration. I told them I could help them with that. Two and I will be cutting down a small tree and donating it to the day care on Monday.

Mom and I went to Angel’s house Saturday to watch Angel and Tim put up their Christmas tree. Their light strings were giving them problems, so we got to visit while they sorted through what worked and what didn’t. Katie was napping most of the time we were there, but we had the chance to visit with her when she woke up. She was putting together a puzzle of the United States just before we left.

I’m sure I’ll get to see their tree decorated sometime during the holidays. The tree they bought was beautifully shaped. I’m sure by the end of the evening it was filled with beautiful lights and ornaments as well.

Respite: Sort of Like Spring—A Breath of Fresh Air

Sorry to keep you all wondering and worrying. I'm back.

Spring has sprung. The daffodils are blooming and being forced to take a break from care giving was like a slap in the face but turned out to be a breath of the spring’s fresh air.

Mom’s doctor has been telling me for two years to take some respite time. “You’re doing a fine job of caring for your mom, but you need to take care of yourself,” he said. My answer was, “I take her to day care.” Being one of the better-known doctors in the Alzheimer’s and geriatric field in this area and knowing I’ve been living with and caring for Mom for more than three years he said, “That’s not enough. You NEED to take a few weeks every three or four months to recoup your strength and get some needed rest from sleep loss and stress.”

That is “the” one thing every caregiver tells another and we all nod our heads and continue to go on one day at a time, putting off our needs, burning the candle at both ends, and hoping for a better tomorrow.

I, like many of you, took/take much better care of our loved ones than we did/do ourselves. When energy levels became low, we pushed forward knowing that in another one or two hours we might be able to prop our feet up for an hour or so before the next need arises. Probably like many of you, I always take my showers when I hear Mom snoring the loudest. I know then she is in a deep sleep and I can rush through my shower and get dressed before she might awake or I’ll take clean clothes to my house and shower there while she is at day care. Never can I take a shower when she is awake for fear that she will get into something and get hurt or possibly fall. We all know that caring for a loved one with Alzheimer’s is more difficult than caring for a child. An elderly person who has been independent their entire life is much more difficult to handle than a toddler—our loved ones are bigger, stronger, more demanding, and vocal than a toddler. Let’s face it, it’s easier to tell a toddler they shouldn’t do something that may hurt them than it is to tell an 84-year-old they shouldn’t do something they’ve done for longer than we’ve been alive. Switching roles of child to parent is no easy task. We sleep with one eye open for wandering shadows and ears tuned for sounds of breathing. There is no body replenishing sleep for a caregiver and all too often the adrenalin runs out, nutrition is poor, health problems arise and the caregiver dies before the person they are caring for.

When my tests results came back, I wasn’t surprised—at least with most of them. My rheumatoid arthritis is worse and my fibromyalgia is grandstanding the arthritis. No surprise there. Cholesterol levels that my doctor had been amazed were always fit for a twenty year old suddenly changed to worse than Mom’s. Blood pressure that was normally always on the safe low side is now what is considered normal for others, but high for me. My nutrition level is…well…almost nonexistent. I have a ganglion cyst on my wrist and my knee. The quarter of a stomach I was left with 35 years ago after surviving stomach cancer has turned into an ulcer, and I’m anemic. There was something wrong in one of my blood tests, don’t ask me which one because I don’t know, but as a result I’ve been to visit my dear old oncology doctor who took care of me 35 years ago. I was given only six months to live back then. He also treated me three years ago when I had a blood abnormality. That was a few months after I moved in with Mom and the abnormality ended up being a tumor the size of a grapefruit and me having surgery to have it removed along with my ovaries. I drove to the hospital and Mom and Two Feather sat in the waiting room until it was over. After recovery, we waited a few more hours until I wasn’t in a fog and I drove home to continue taking care of Mom.

The good old doc was as shocked to see me then, as I was to see him. He looked as old as dirt when I was 20—funny how he looks exactly the same all these years later. LOL All joking aside though, he’s still testing my blood and trying to figure out what the abnormality is this time.

Needless to say, after all the test results, my doctor told me I needed to take a break from caring. He told me to take a month. I took almost two weeks. Even though I’d talked with Mom about it and finally got her to understand I needed a break and she was okay with it, the day I took her to the assisted living facility she was livid with me. She refused to speak to me, hug me or say goodbye. I knew that was going to happen and I’m glad I’d prepared myself for it.

I admit I was exhausted. I knew that before I set up the respite care. I just didn’t realize how exhausted I was until I woke up some 36 hours after I sprawled across my own bed at my house.

I kept telling myself before I took Mom that I could sleep without having to listen to the monitor, sleep without having to get up every few hours, sleep without having to get up early to take her to day care, sleep without having to watch the clock to make sure I picked her up on time—I could sleep without having to worry about Mom because I knew she was in good hands. My little talk with myself worked like a charm and I woke up feeling refreshed for the first time in three years.

All week I enjoyed the comforts of my own home and enjoyed the company of Two Feather. We’d wondered how different we would act being in the same house 24/7 again after three years of being separated. To be honest, we were concerned that we might not know each other anymore. It was a great relief to know that though we knew it was only for a short time we’d be together we fell right back into the pattern we used to have. It felt odd to go shopping at Wal-Mart after dark. Heck, it felt strange to be anywhere after 5:00 in the evening.

We didn’t do anything special or go on a vacation of any kind because I was too exhausted to drive any long distance. The time we spent together and the relaxation I enjoyed sitting on my couch watching the evening news together and sitting on our deck talking over morning coffee was worth its weight in gold.

We enjoyed a few hours at a Maple Syrup Festival at a local park with my daughter Angel, Tim, and Katie and we went out to dinner with them on another night. It felt strange, but wonderful, to have that freedom to just walk out the door spontaneously and do something—anything different.

I was told not to visit Mom while she was there because it would confuse her, she’d cry and beg me to come home, and it would defeat the purpose of the respite care. I did call to make sure she was doing okay and I talked to her mid-week to let her know I hadn’t abandoned her.

I called my brother to let him know I had placed Mom in an ALF so I could get some respite time. That turned out to be an argument with him thinking I should have consulted him first. When I asked why I should consult him he said, “maybe we could have worked something out. I could bring her up for dinner or take her for a weekend.”

I told him that a few hours for dinner wasn’t going to help me at this point, and neither would a weekend. Then he said he was shocked and I asked why. “Because you said you were never going to put her in a place ‘like that’,” he said. I told him the place was very nice and he shouldn’t be shocked that I’m finally taking a break after three years. He reminded me that all I had to do was ask and he’d try to work something out, so I asked him to take her for a weekend in May, from Thursday evening to Monday morning, because Two Feather was asked to set up his Native American art stand at the popular Nationality Days in our area. He said he’d let me know after he checked with his wife.

Angel visited Mom several times and reassured her I’d be there to pick her up last Sunday. My brother visited her several times as well.

Saturday was a beautiful day but a sad one as well. It was the last full day and night Two Feather and I would spend together and we both had a difficult time holding back our emotions. We agreed that the respite time was good for me and I did get somewhat refreshed and it was good for us to spend quality time together without having to stop what we were doing to take care of Mom. We also agreed that I needed to listen to Mom’s and my doctor and continue to take periodic respite in order to reenergize myself and get a small part of our life back.

After a week, I called my brother to ask if he had talked to his wife about the weekend I’d asked for and he said he could do it Thursday through Saturday, but not Sunday and he asked if he could take Mom to day care on Thursday and Friday. I told him that he was only going to have her Thursday after day care and he could take her to day care if he used his wife’s car, but since he couldn’t do it through Monday morning to forget it. Then he argued with me about the dates of the festival and repeated that he couldn’t do it Sunday. Geesh!!! That turned into another problem. Two Feather said to tell my brother to cancel his plans on Sunday. After all, Two has cancelled his life for the past three years. Well, needless to say that didn’t go over well with my brother and we ended up in another tiff. He said he didn’t ask Two to do anything and I’m the one who chose to take care of Mom. I said, “You’re right. Two does everything Mom’s sons should be doing at Mom’s and he helps me because that’s the kind of man he is, and I chose to take the responsibility of taking caring of Mom so I’d take the responsibility for that weekend too. I told him to forget about the weekend. Then he said he had to talk to a few other people and see if he could do it Sunday and he’d call me Monday or Tuesday. At that point, I said, “I don’t know what your plans are and I don’t care, but if you can’t make a decision about helping with Mom without asking someone else, just forget it!”

Granted my emotions were running high because it was the last day I would spend at home, but I either have a commitment for help or I don’t. I’m not going to change what plans I’d like to make to fit everyone else’s schedule.

When I picked Mom up on Sunday she was happy to see me. She had the biggest smile on her face and held her arms out to give me a hug. She helped me fold and pack her clothes and within 30 minutes we were heading out the door back to her house.

Once we were home, she didn’t recognize her house at all and asked how long she would be staying here. Not that she really knows the house is hers anymore anyway, it was just sad that she asked how long she’d be there. She told me all about the nice ladies she met and what a great time she had. One day they went to the local mall for Senior Day and another day they went to the local high school to see the play Annie. She fit right in once she was there for a few days.

Monday, my brother called me and told me he worked it out so he could keep Mom on Sunday, too. I hate to say it, but that led to the biggest argument we’ve had. We were on the phone for nearly and hour and half dredging up past garbage—me explaining why I feel the way I do about a lot of things and telling him things about my life that he never knew, and him not remembering 80% of the occurrences I spoke of, and not agreeing with the other 20% of what I was talking about. The stress caused by that conversation left me feeling like I needed another week’s respite just to get over it.

Tuesday morning, I called him and called a truce. I told him I wasn’t in the best of health right now and the last thing I need is stress from arguing with him on top of the caregiver stress. The discussion/arguments we’ve had were worth it. I was honest and open about everything whether he believed me or agreed with me or not. We’ve finally agreed that we have nothing in common, except Mom and we don’t get along. All I asked from him was to speak to me decently and quit using a sarcastic and combative attitude toward me about everything. When it comes to me, I know my brother always thinks the worst. I’ll never know why, but it’s nice to know that he was pleasantly surprised that his sister has a better head on her shoulders than he thought. He actually complimented me on the ALF I picked for Mom.

All in all, the respite was wonderful and it may have actually been the straw that broke the camels back with these petty fights he and I have been having. At least I hope so.

As for those who are still in the midst of care giving, please don’t be as stubborn and procrastinating as I was about making arrangements for your loved one to stay in an ALF for a week or two to obtain some respite care for yourself. You’re the only one who can take care of yourself. Respite is like a breath of fresh air! Please don’t just nod your head when someone says to take care of yourself and wait until your health begins to fail before you take that break. If you die before your loved one, who will step into your shoes?

The Water Gets Deeper

My apologies in advance for the lengthy post.

The week before Mom’s dilemma was filled with sad events.

On Wednesday the 13th, my close friend’s father died. On Thursday, Angel’s husband’s grandmother died. On Friday Two Feather’s uncle died, and we were told Two’s dad would be going in for heart surgery this past Friday. All of which we should have been there to show our respect and none of which we could be there for. All this while I was dealing with Mom scratching herself raw, it snowed and iced again and I couldn’t get off Mom’s hill. So excuse me if the later part of my post shows my intolerance of unthinking people and my post is a week later due to all that’s been going on. My rant is marked, so you may skip over that and get onto the other reading without hurting your eyes.

Well…just like I thought—it was not scabies!

When I got Mom up that Friday morning, the bumps were still there and Mom was still just as itchy as she had been. The Permethrin did nothing to take either the itch or bumps away. So we know for sure it wasn’t scabies. I got Mom in the shower, washed her thoroughly, and dowsed her and myself with the cream a second time, just to be on the safe side. One treatment is supposed to treat and eliminate the itching and bumps for scabies. Two treatments couldn’t hurt. I called the day care to talk with the nurse to make sure the note from the doctor was satisfactory for Mom to return on Monday, and she said yes because Mom was treated. She apologized for the inconvenience and said they had to be precautious. I told her I understood that. They did what they had to do and so did I. All worked out well.

I was sitting in the living room talking with Mom and noticed that she was moving her legs back and forth, unaware that she was moving them. I didn’t think much about it at the moment and chalked it off to yet another strange little habit Mom picked up—like the one where she runs her tongue across her teeth and it looks like she has something in her mouth. She and I sat and talked most of the day, mostly her asking what day it was and why she wasn’t at day care. By late afternoon Mom was still scratching, only now she was telling me, “I’m itchy all over. This itching is driving me crazy.”

That Saturday morning Mom woke up at 6:00 AM and I told her it was the weekend and she could go back to sleep for a while. She snuggled back under the covers and fell back to sleep almost instantly. When I turned to glance in her room before going back upstairs, I noticed the bed shaking. I walked closer and watched for a minute thinking she was just moving to get comfortable. The motion continued as she snored. Her legs were jerking back and forth under the covers. It was the same jerking movement of her legs that I noticed Friday while we were sitting in the living room.

As I watched Mom’s legs twitch under the covers, I thought about what might be causing her itch and rash.

The pharmacy always gives me an information sheet about new drugs Mom is prescribed. I read every one of them to make sure I know what to keep an eye out for when it comes to side effects or warnings. After watching Mom’s leg twitch while she was sleeping, I ran upstairs and grabbed the information sheet on Seroquel. I remembered reading that the doctor should be called immediately for certain side effects and one was if there is any unusual or uncontrolled movements of the face, lips, mouth, tongue, arms or legs. I reread the information and immediately realized Mom’s leg twitch was new since she began taking Seroquel. I continued to read the side effects and found that symptoms of a serious allergic reaction to Seroquel may include: rash, itching, etc., etc.

I immediately picked up the phone and called the pharmacy and explained about the day care sending her home, about her itching and rash, the treatment for scabies, and that the treatment did not help. I asked if Mom’s itching and rash could be an allergic reaction to the Seroquel and they said it could and to call the doctor to have him prescribe something.

Mom was back up by 8:00 and when I took her pajamas off to get her dressed I noticed the bumps by her clavicle were more pronounced and she was scratching just as much, if not more than she had been the day before treatment.

The next call was to the doctor’s answering service. He called back within 10 minutes. He said to take her off the Seroquel immediately and he was calling in an antihistamine for the itching and that I should use the same anti-itch Sarna cream I used when she had dermatitis.

I called my brother and asked him if he could pick up the prescription for me. He did. I appreciated it, and I thanked him. In conversation he mentioned a number of things that I know his wife read on my blog and I said, “if your wife is so interested in knowing what’s going on with Mom, maybe she and you should visit rather than read my blog to get information and see how she’s doing.” He responded with, “Yes, she reads it but she’s never commented on it.” Instant defense about a rude comment on my blog that I never mentioned to him. You know what they say about people who defend themselves before defense is needed. Immediately, he followed with bashing Two Feather—the person who does all the work around Mom’s house even though he’s “not accepted into this family” according to my brother. After that, the conversation went sour. There is no talking to him. He knows it all, he’s always right, and I’m always wrong.

Now I’m sorry I bothered asking him for anything.

The only reason I continue this blog is because it is my only outlet and there is a wonderful group of people here who know what dealing with Alzheimer’s is like. That group of caring people, who don’t know me from Adam, come here nearly every day to read, comment, show support, and treat me as if I were part of their family. One of the group had even offered warmth and shelter in her home during the furnace episode and offered to sit with Mom anytime I may need a break. Thank you, Betsy. You’re like the sister I never had. I appreciate you all so much, yet, I am sad to say that I have to admit that you understand and care more about my mom and me than some of our own family members. It’s sad that you can accept me for who I am and what I say; yet people who are supposed to be that support system, do nothing but lie and put me down.

**RANT

Since they want to read. Let them read the truth!

My brother told me, “all you have to do is ask if you need anything.” Yeah right! When I asked for him to watch my mom for one day so I could get my uncle moved from his apartment and into a nursing home in April 2006, I didn’t get help. I was asked where my cousins were? Why can’t they move his stuff? Why? Because they have about as much to do with my uncle as my brother does—little to nothing.

Mom has stayed at his house twice in three years. Once in July 2006, when I asked for a weekend, and I was held up from leaving on time for the weekend because my brother didn’t pay enough attention when I showed him how to take Mom’s blood glucose test and I had to go up to his house and show him again just as we were pulling out of the driveway ready to leave. The second time was when Mom asked him to keep her for a night on November 2, 2006 because Two Feather had surgery and she felt I should be at my house with him. Three times since then, when I asked for him to take Mom for a weekend, I got told, “I can’t. I’m going away.” I quit asking. Oh yeah, that’s right, some people can take several vacations a year—every year.

Here I sit knowing that his wife has been reading my blog all this time, and she knew about the power being out, the furnace being broke, me being sick recently, and all the other things I’ve written about here—where was their phone call of concern or offer of help? There wasn’t any. Oh, that’s right, I’m supposed to ask.

Since my sister-in-law has been so “accepted into this family” as my brother says—if she’s so interested in sticking her nose in Mom’s business and mine and wanting to know what’s going on, maybe she should visit! She hasn’t been here since Easter last year. Sticking her nose here is one thing—nosing into other blog links from my site and doing a Google search on Two Feather just makes her that much more pathetic. What exactly is the purpose of either? Just to instigate more problems?

All I have to do is ask?

Taking Mom for Sunday dinner is out because when I asked them to move dinner up an hour so she can still be in bed at her normal time I was told, “Oh no, that’s too early.” God forbid I ask for a little flexibility or for someone to go out of the way just a tad to spend time with Mom.

And of course they can’t take Mom for a week because they "work for a living" and "don’t have time," yet when my sister-in-law’s mom got sick it was okay for her to stay at their house. What’s good for one mom should also be good for the other.

How about picking up Mom’s garbage at 4:30 on Wednesdays and taking it down to the bottom of the hill.

How about calling to make sure we can get off the hill when it snows six inches.

Or, how hard would it be to bring dinner a few times a week, even once a week, for both of us? It’s called “thinking” of little ways to help out. It should be really easy right now since the fish fries are taking place on Fridays for lent. All that would need done would be to pick them up and drop them off. No cooking involved.

I guess all this upsets me so much because they are not willing to bend their schedule to help out, and everything is expected at their convenience instead of working around Mom’s schedule. Why should I go out of my way when they can’t be the least bit flexible?

All I’m asking for is respect to be shown to Mom. This is about her—not me!

**END RANT

The last week of February wasn’t much better. On to more important people and things--my daughter Angel, her husband and Katie came over for nearly two hours last Sunday before they went to Tim’s grandmother’s viewing. Angel brought lunch for all of us. Thank you, honey. I really appreciate you bringing lunch and visiting at the same time.

Mom did go back to day care last Monday with no problem. She still had the rash and we set up another appointment with the doctor for Wednesday afternoon. We had another snowstorm with ice rain overnight on Monday and we stayed in on Tuesday. Tuesday night we got more snow and we stayed in again on Wednesday. I had to call to have Mom’s driveway plowed and salted so I could get her out for the doctor’s appointment. We were back to Mom being up and down all night long after four nights without meds.

The doc said the rash didn’t look like an allergic reaction to meds but to keep her off the Seroquel just in case. He referred her to a dermatologist. She’s back on a light dose of Risperdal before bed.

Thursday and Friday she went back to day care. Friday after I dropped her off I went straight home. The weather report said we were expected to get another 2-4 inches of snow starting in late afternoon. The lower half of Mom’s driveway was solid ice, so I called for someone to spread anti-skid to give us traction. Between that and the new snow expected, I figured we’d be able to get up and down.

When I did get home, Two told me there was water coming in the basement. We couldn’t figure out at first how or why since there hasn’t been any melting with the low temperatures. He was shoveling the sidewalk and called me outside because he heard running water. I walked over to the side of our deck where the sound was coming from and found water flowing out of the top of our well. I called the well-drilling outfit to have him come and check it. In the meantime the water was getting deeper and the 30-year-old retaining wall beneath our deck collapsed and is blocking our basement door.

Two’s dad went in for heart surgery Friday and we sat at home waiting to hear how the surgery went since we couldn’t make the trip to be there. The snow was coming down harder, like a whiteout, and by 3:00 we had 4 inches. Two Feather rode with me to pick up Mom early knowing the roads would be bad. As we pulled up to the day care, I received the call back from the well guy. He told me to have Two call him when he got home and he’d tell him how to shut the well off until he got there on Saturday morning.

Had Mom at home by 4:00, Two walked back up to our house, called the well guy, and had the well shut off by 4:30. Two got a call at 11:00 PM telling him his dad made it through surgery okay. That’s a big load off our minds.

Saturday morning the well was fixed and Two Feather had all the water cleaned up in the basement and the dehumidifier was starting to dry it out. He walked down to visit after.
Stacey called and we talked for a while. Since Two was here she got to talk to him too. It’s always good talking to her. I miss being able to talk to her and Angel like I used to. Saturday was also my son-in-law’s birthday. Happy Birthday, Tim! Hope you got your card and had a great birthday.

Sunday was a quiet day. The lady from church came to give Mom communion. Two visited for a while. Angel called to say she was helping Tim’s family move his grandmother’s things so she didn’t think she’d be able to visit.

Mom and I spent the afternoon talking. Two saw a robin in the front yard. Maybe that’s a sign that better things are coming. I sure hope so, cause I’m sick and tired of being sick and tired.

New Medication Working Good So Far

I kept Mom home from day care on Wednesday again because the driveway was solid ice after the storm. Had the driveway plowed and salted and by afternoon the sun had melted some of the ice.

By Thursday, we were on the road again and Mom went back to day care. When I picked Mom up I was told there was an incident at day care. Evidently, Mom was sitting with Mr. N. and one of the workers walked up to her and said, “You don’t belong here. You need to move to another table.” I was told she grabbed Mom by the shoulders and nudged her toward the other side of the room. Mom complained to the supervisor about the woman’s action and supposedly the worker was reprimanded and made to apologize to my mom. I was glad they told me about it, but I wasn’t happy with what happened. I felt more than a bit let down because I know the woman and I never expected her to act or treat Mom in this fashion. It must have bothered Mom because she remembered it and told me about it on the way home. She said she was glad the lady apologized and she was going to forget it for now. But if it ever happened again, she wasn’t going back. I picked up Mom’s new medication, Seroquel, on the way home and she took it for the first time Thursday evening. It's a low dose before bed. The doctor prescribed 25mg tablets and Mom's only suppose to take a half tablet at bedtime. She slept sound. YAY!! So did I. DOUBLE YAY!! I can’t remember the last time I had two good night’s sleep in a row, but it felt wonderful! That was a Valentine’s gift all in itself. :)

Two and I went grocery shopping on Thursday and spent the rest of the afternoon watching Saw IV. All four of these movies were good. Of course, I’m a horror and thriller fan, so naturally I’m going to say I loved them. That was our Valentine’s Day together. Watching a horror flick.

Today, when I took Mom to day care, the lady who was gruff with her on Thursday pulled up in front of the day care at the same time. She was very pleasant and held the door for Mom to walk in. She said “good morning” to Mom and Mom answered as if nothing had happened. I did say good morning and talked with her, but I didn’t bother mentioning the incident. I figured the supervisor reprimanded her and I didn’t need to make a big deal about it. I’m sure she knows me well enough that if anything like that happens again that I won’t be as courteous the next time. She probably felt lucky that I didn’t say anything this time. I can be very nasty when it comes to protecting my mom.

Today was a do nothing day. Even though I slept well the past two nights, I still feel run down so Two and I just talked all day. Mom had a good day at club and I was happy there were no reports of any kind.

Mom was extremely tired while she ate dinner. She didn’t eat much again tonight. Her appetite has diminished so much. All she wanted to do was finish eating and go to bed. By 5:30 she was snoring.

Angel, (not my daughter) an old friend called my house and Two called to tell me she called. Angel and I used to pal around together in the 80s. We kept in touch for a long time and drifted apart due to life changes. I ran into her at a local store just before I moved in with Mom. She knew Mom had Alzheimer’s but we hadn’t seen each other or talked since so she didn’t know I’d moved in with Mom three years ago. It was really good talking to her after all this time. We were best buddies back then and it didn’t take but a few minutes on the phone to realize how much we’d missed talking to each other. Anyway, if you read this, Angel, thanks for calling. It was wonderful talking to you again.

I’m signing off for now. This new medication is really working wonders so I’m going to take advantage of the fact that Mom is resting peacefully. See you all soon. Joanne does a happy dance as she signs off for the night. :D

A Whole Bunch of Rambling

I haven’t blogged much lately because…quite frankly—I’m exhausted! After reading Robyn’s post about her mom getting up several times a night, I figured I’d finally talk about what I’ve been going through.

You all know about Mr. N. and how he and Mom have become such “great” friends. Well, this friendship and talking has turned to him holding her hand and kissing her on the cheek. The day care workers thought it was all cute and innocent and nothing indecent. Maybe not indecent, but still, he is a married man, Mom is vulnerable, and I told them I thought they should deter these kinds of actions because I didn’t want my mom to get hurt. I wasn’t only worried about Mom getting her feelings hurt when Mr. N. may put his attention elsewhere, but also I was worried that Mrs. N. may walk in and see this and maybe not be so understanding. I still don’t know if she knows about it.

It’s nice that Mom is enjoying the day care socially, but I spoke with the day care workers several times months ago asking them to discourage the hand holding and kissing. They all told me how Mom and Mr. N. would make plans to go out and how they thought it was so cute. Deep down I knew it was a catastrophe waiting to happen. I know my mom.

Now, another lady is paying attention to Mr. N. and Mom is not happy! For the past two months, Mom has been getting up nearly a dozen times a night talking to Mr. N. in her sleep, getting out of bed, thinking he’s in the living room, thinking this lady is here stealing him. Good grief. I’ve told the day care workers that he is on her mind constantly when she is at home and reminded them once again that they should have discouraged this type of affection between them.

The beginning of last week Mom became aggressive at day care toward the lady who is showing Mr. N. affection. Mom told her to move (in not so nice words) and when the lady argued with her, Mom told her to shut up! At the end of last week Mom became angry again when she saw this woman sitting by him. She clenched her fists and said she was going to go over there and punch the woman (also not in such nice language). The day care workers told me how she’s reacting and said something needs to be done. I said, “I’ve been telling you that for months. Oh, it wasn’t a problem until the snake came out and bit you in the face. I’ve been dealing with her up all night for a few months because of this situation. You are the one’s who thought it was so cute, so you deal with it here without being mean to my mother.”

I suggested that when Mr. N. reaches for Mom’s hand or kisses her on the cheek he be reminded that he is married, and suggested that Mom be reminded that he is married and these type things shouldn’t go on. If Mom didn't have Alzheimer's she wouldn't allow such a thing. She would be horrified if she were in her right mind and knew she was allowing a married man to show her affection. Dancing and talking is one thing, but she wouldn’t allow this. For crying out loud, my dad’s best friend who had been a widower for more than 20 years asked her out and kissed her on the cheek six years after Dad died and she told him off. Poor guy. That relationship would have been nice, but she didn’t want anything to do with it because he had been my dad’s best friend.

So…here I am, up nearly a dozen times every night with her cussing and yelling at Mr. N. and this woman because he’s cavorting with someone else. He’s still mainly interested in Mom but since the day care workers have been trying to change the situation (a little too late) Mom is becoming more and more angry.

Her anger wouldn’t change now even if they let them sit together because Mom would still carry on about the “other” woman. When something really matters to Mom, she doesn’t forget it. I told the day care workers they have to deal with it since they let it go on so long.

Angel came over on Saturday to sit with Mom from 1-4:00 so Two and I could visit a friend of his in Ohio. Nearly two hours driving and an hour visit. We were home by 3:30. It was good for Two to get out and see someone he hasn’t seen since November. The driving wasn’t much fun, but it was good for me to get out into different surroundings for a few hours. I realized how much my social skills are deteriorating. I barely talked and when I did, I stumbled over everything I said. Good grief, I need to get out and talk to people before I lose the ability to speak other than repeating myself all day long.

Sunday we had atrocious winds. The lady from church came and gave Mom communion at 1:00. When she came in the house, she said a tree had fallen over Mom’s driveway and was leaning on the power lines. The lines had been ripped off my neighbor’s house. My brother came at 1:15 and said the same thing. He parked his truck and walked up the drive because he didn’t think he could get under it with his truck. He told me I should call the power company. I said, “Of course, just one more thing for me to do because no one else does anything.” He was going into the hall to pick up the phone (which hasn’t been there for three years) and call the power company and said, “What’s the address here?” “You don’t even know your own mother’s addresss?” I asked. “Nevermind, I’ll call the power company.” He stayed until 3:15. I made Mom dinner and we chatted until 4:30. She was tired and wanted to go to bed. It was probably a good thing that she went to bed a tad earlier because the power went out at 5:00 and didn’t come back on until 7:00. Thank goodness the power came back on in such a short time. I was bored stiff for the two hours it was off trying to read a book with a flashlight. LOL Mom was up ten times during the night. This time she was whispering and telling Mr. N. she hopes he’s happy and then yelling at someone to get the hell away from her. I have no idea who she was talking to then.

Monday morning I had Mom in the car and down the driveway and had to back up all the way to the house. The power company cut the end of the tree off the power lines, tightened the lines, and called me at 1:00 in the morning to find out if our power was back on, but they left the tree on the driveway. I didn't know about the tree until I tried to leave in the morning. I called Two Feather to come down and cut up and move the tree so I could take Mom to day care. I called my brother too, figuring he should do something for a change and help Two, but he didn’t answer his phone. I didn’t bother leaving a message on his answering machine. He was home.

Mom’s medication needs changed because she’s getting the itching side effects from trazadone. The doctor took her off respiradol several months ago and I asked him if he would put her back on it but instead he said to try the trazadone. Mom's moods are worse and she's getting up at night more and more. Now, he’s going to order seroquel. They were suppose to call it in on Monday but the pharmacy said they didn’t. The office was closed by the time the pharmacy called to see what the doctor was going to order. The doctor’s office was closed today probably due to the snow, so I’ll have to call them tomorrow and find out when they will call it in.

I kept Mom home from day care today because it snowed overnight and she (and I) were up all night with her dreams, hallucinations, cussing, and wandering. She was a gem all day. She sat and colored while I went through stacks of receipts and got everything together for her taxes. Next, is getting my Uncle Joe’s paperwork ready and then I can finally get the taxes done. That will be a burden off my mind.

We got about six inches of snow today. Then it turned to freezing rain. I’m not sure what it’s doing out there now, but I can say that I’m truly looking forward to summer. Yes, I said summer. The heck with spring. Let’s just move onto the 70 and 80 degree days. I need a vacation!

Alzheimer’s—A Sad Journey Ends Tragically

Man, 75, kills ailing wife, then himself, inside hospital.

The local news aired this shocking story today.

A man and woman’s 52-year marriage ended tragically last night when Mr. Riddle, 75, shot and killed his wife, Shirley, in an intensive care unit of the UPMC Hospital in Cranberry Township, Venango County.

Shirley, 74, had Alzheimer’s disease and according to their daughter, Mr. Riddle had taken care of her at home until five days ago when she fell, injured herself, and was admitted to the hospital for surgery.

According to state police, Mr. Riddle walked into UPMC yesterday, killed his wife with a revolver and turned the gun on himself. He left a note at their home stating that he could no longer permit his wife to suffer.

The complete story is online at the The Post Gazette.

This is just so sad.

Busy Four Days

I haven’t posted since Saturday, so I figured I’d better catch everyone up to speed. Sunday Angel, Tim, and Katie moved their belongings into their new house just eight miles from me. I took Mom and Two Feather over about 11:00 AM so Two could help them carry things in. Mom sat on their couch and colored while everyone was walking by carrying furniture and boxes.

Angel asked me to bring my Pack N Play with us so Katie could lie down for her nap because they wouldn’t have time to put the crib together. Tim’s mom fed her lunch and I put her down for her nap. Within minutes of me singing to her, she was sleeping.

Shortly after that about 1:10 we had to leave because Mom was tired. Most everything was moved into the house by then anyway. They were going to get something to eat and go back over to Tim's Mom's house to watch the football game. Angel said they weren’t going to worry about putting things away yet because she was leaving to go back to Mechanicsburg to finish out her job and they weren't staying at the house until tonight. Probably just as well Mom got tired since I wasn’t feeling well.

Monday I had to run over to Angel’s house to let the water meter reader in, then I went back to my house and curled up on the couch still not feeling well. Two Feather moved more wood all day.

I picked Mom up from day care early to take her to her regular doctor’s appointment. It was scheduled for 3:45 but we didn’t get in to see her doctor until 4:00. She was tired and getting impatient waiting. He told me everything seemed to be going as well as could be expected and he wasn’t going to change or add any medications. He did say that if she was having a hard time swallowing that I could crush the pills and open the capsules and put them in her food. I told him I have been doing that for about a month already. He commended me for keeping her in her own home and keeping her active with the day care. “You’re doing a fine job with your mom,” he said. It felt good to hear that from her doctor. He told me I looked tired, asked how I was holding up, and asked if I had gone to any caregiver support group meetings yet. I told him I was doing okay, I hadn’t been to any meetings because they are all in the evening and I have no one to sit with Mom. I told him that I am involved with a group of caregivers online and we do quite well at helping support each other. He was pleased to hear that and told me if I decided to go to meetings personally to let him know and he would get a list out to me. “Without family help, Joanne, you need some type of support,” he added. He said when Mom starts to get weaker and I felt she wasn’t able to go to day care anymore that I was to call him. He reminded me that due to her weight loss hospice would do a re-evaluation and whenever I wanted to have hospice come in to let him know and he would write the prescription for it. I said thank you and would let him know when we get to that point. He wrote up a prescription for blood tests and asked me to have them done before we left, so we went down to the lab and waited an hour and twenty minutes before they finally took the blood needed for her tests. It’s a good thing I thought in advance and had a sandwich and snacks with me so Mom could eat while we waited. She was exhausted and fell asleep in the car. We got home at 7:00 and she couldn’t wait to get in bed. She went to sleep within seconds of her head hitting that pillow.

She must have been really exhausted because she never got up once during the night. I took her to day care on Tuesday and went home and curled up on the couch again because I still wasn’t feeling well. I have this horrible back pain, an aching pain between my shoulder blades that just won’t go away. Last night after Mom was in bed I planned to do some writing but I just didn’t feel up to it. I stretched out on the bed with a heating pad on my back and went to sleep. I have a chiropractor appointment on Tuesday and my PCP appointment right after, so I guess I’ll find out what the root of the problem is then.

Today the pain isn’t any better. The pain was so bad today I nearly passed out, I would have gone to the ER but I have no one to take care of Mom if they decided to admit me. Instead of worrying about it, I do what I always do--made myself busy to keep my mind off of things. I started getting things prepared for tomorrow’s dinner. I made two pumpkin pies and a cherry pie and I baked the green been casserole and candied yams.



Two Feather moved more wood while I was cooking at Mom’s house. He stopped in now and then to make sure I was okay. The house smelled so good with the pies baking we both said we couldn’t wait for Thanksgiving dinner because the aroma was making us hungry. He sat at the table and talked with me for a while and when he felt I didn’t look as pale as I had earlier, he went out to move more wood.

I also peeled potatoes, tore apart three loaves of bread, chopped up celery and onion and mixed the stuffing so it’s ready to stuff the turkey in the morning. All I’ll have to do is get up in the morning, clean, stuff, and cook the bird, put the potatoes on the stove to cook, and brown the dinner rolls. Everything else is done and will just need to be heated.

Today when I picked up Mom at day care I was called aside by the nurse. She said the clients were talking about Thanksgiving and their families and she wanted to let me know what Mom had said. Evidently, Mom told everyone that besides her daughter (me), who takes care of her, she has two sons, but they live out of the country and that’s why she never sees or hears from them. Funny how Alzheimer’s can cause them to make up something in their own minds that’s easier to believe or accept. Truth is her oldest son in North Carolina just called Sunday. It had been three weeks since he called, and her other son, who only lives a spit through the woods hasn’t been to see her since August 25th and hasn’t called since September 21. I guess for her it’s easier to say they live out of the country than to make excuses for them.

I’m looking forward to Thanksgiving dinner. It will be nice to have someone in the house at the dinner table besides just Mom and me for a change. Two Feather, Angel, Tim, and Katie will be there. I’m anxious to see how much Mom will eat. I guess I’m hoping Thanksgiving dinner and all the wonderful aromas will make a difference in her appetite. We’ll see.

The only thing that we’ll be missing at our dinner table is Stacey, Dennis, Deandre, Trinity, and Quenton. We’ll miss you!!! Love you all.

Wishing everyone a very Happy Thanksgiving!!!!!

To Stef

I was sad to read that Stef, at the young age of 20, lost her Nonna yesterday to Alzheimer's. Stef always spoke of her grandmother with such love and devotion. It was heartwarming to read Stef's posts about how close she and her grandmother were.

Know that your Nonna knew you loved her and she's proud of the close relationship you two had. My thoughts and prayers are with you through this difficult time, Stef.

Alzheimer's Plateaus and Declines

Alzheimer’s is the most puzzling disease I’ve ever seen. As loved ones progress through the stages of Alzheimer’s disease, they become more and more dependent on the caregiver to take care of their needs.

There’s a well known phrase with Alzheimer’s caregivers that reminds us that we can share our experiences, but each person with Alzheimer’s is affected differently than the next: “When you’ve seen one person with AD, you’ve seen one person with AD.” Every person with AD progresses differently and at his or her own rate.

There is no standard situation for each stage of the disease. One loved one may continue in one stage, plateau in that stage for years, and decline swiftly to the end stage within months. Other loved ones may never reach the end stage and are saved the progressive decline to the end.

I’ve learned to deal with any situation that arises in Mom’s journey with Alzheimer’s, however; the fluctuation of abilities (the back and forth) from one week to the next is always puzzling. For months Mom has been on a plateau where she’s been unable to dress or bath herself. She was unable to recognize what each piece of clothing was for, let alone figure out how to button buttons. She needs step-by-step instructions on how to wash, and even then she’s unable to muster the coordination to accomplish the task. Her long-term memory is gone and her short-term memory went along with it.

Yesterday, she actually remembered I had a headache over the past few days and asked if it was gone. She also buttoned her shirt for the first time in three months. If someone had come to visit her yesterday, she would have appeared ‘fine’ in the respect that she was able to hold a conversation as well. Her seemingly enhanced cognitive state continued throughout the day. She helped set the table for dinner, helped dish out her meal, and she even washed the dishes when dinner was over.

I sat in amazement as I watched her, knowing she was having a ‘good day’, and wondering how long it would last. When it was time to get ready for bed, she buttoned her own pajama top and said the words she used to say to me every night: “Thank you for taking care of me, honey. I love you and I don’t know what I’d do without you.”

As I sat in my room after she was asleep, I felt as if I’d been thrown backwards into this awful disease. I was thankful for the abilities she mustered for the day, but these back and forth cognitive scenarios can really screw up the ‘prepared’ mindset we caregivers try to maintain. We need to keep reminding ourselves to be prepared for the next decline, even though we cherish the good days our loved ones have.

This morning we were right back to where we were Friday; Mom didn’t recognize her clothes, her room, her house, and she was having a difficult time maneuvering from a sitting to standing position. Once she got moving, it was slow and shaky, even with the walker.

I truly hate Alzheimer’s and what it does to our loved ones. The only thing this disease has reinforced in my mind is the one thing I’ve tried to live by my entire life: Live one day at a time and live each day as if it is the last—because we just never know what the next day will bring, or if it will come.

On a different note: It’s Steelers Sunday. I think I’ll turn on the game and see how well they beat the Browns. :) Maybe I can even convince Mom to watch the game.

Furnace is on the Fritz

Mom's furnace is on the fritz. Sometime during the night it quit working. About 3:00 AM I woke up chilled to the bone. I went down in the basement and checked the circuit breakers. They were fine, so I pulled the cover from the furnace and pushed the reset button. The furnace kicked on but it only ran for about 10 minutes and shut off. When I pushed the reset button again, it did nothing.

I peeked into Mom’s room and noticed she had the covers pulled up over her head. That told me she was cold, so I pulled another blanket from the closet and put it over her. She continued to sleep peacefully until I woke her to get her ready for the day care.

Upon arriving home, I called the gentleman who maintains her furnace every year. He said he wouldn’t be able to come out until this evening because he had several ‘no heat’ calls before us, and a furnace installation to do. Tom’s been my mom and dad’s furnace maintenance man for more than 20 years, and since Dad died he always makes sure he takes care of Mom’s furnace at the beginning of his busy season. Last year, we had him put a new furnace in because the old one was on its last leg. Within a few minutes of my call, Tom called back and said he was on his way. He said he has a soft spot for widows and especially Mom because he liked my dad so much.

He arrived at 8:30 and performed the usual maintenance of changing the nozzle, the fuel oil filter, and the furnace filter. The furnace fired up, ran for about six minutes, and quit. He bled the line to get the air out and still the same thing. After a few more adjustments, the furnace fired up and ran even after he left at 11:00. I went to my house, Two Feather and I ran a few errands, and went to Mom’s around 2:00 to make sure the furnace was still working. When we walked in the house, we knew it had shut off after he left and not come back on. The thermostat was still at 62 degrees.

I called Tom again. He had just finished with a call and said he’d come right over. He was here within 20 minutes, pushed the reset button, and left again to go to his parts supplier to pick up a new module for the furnace. He was back again by 3:10, installed the new part, and wouldn’t you know it, that part was defective, so he left again to get another one.

In the meantime, I left to pick up Mom at day care and Two Feather sat outside on my mom’s porch waiting for Tom in case I wasn’t back in time. I told Mom that Tom had worked on the furnace most of the day and he would be back to fix the furnace by the time we returned home.

Turned out Tom called me on my cell phone just before I pulled up to the house. He said they didn’t have another module in stock and it would take two days to get it in. He was on his way over to drop off heaters to keep the house warm for Mom until the part comes in. For him to make my mom’s house his first priority was kind. To come back within hours pushing all his other calls later when I called again was kind. To bring heaters to make sure Mom was warm…that goes above and beyond in my book.

Tom knows Mom has Alzheimer’s and when he walked in with the heaters, he said, “Hi Mrs. Kiggins, how are you?” “I’m fine. I don’t think I know you,” she said. Tom was so sweet. He took his hat off and said, “Maybe with my hat off you’ll know me.” I could tell Mom still didn’t know who he was and so did he, but she said, “Yeah, I think I remember you.”

Tom set up the heaters around the house and left. The house was still chilly because the heaters hadn’t been on very long and Mom said, “It’s cold in here. You’d better call the furnace guy and have him fix that thing. I don’t think it’s working.” So much for Tom taking off his hat for her to recognize him, she didn’t even remember him being there two minutes after he left. LOL I told her the house would warm up as soon as the heaters ran a little longer.

I put an extra blanket on her bed just in case. By the time we ate dinner and she dressed for bed her room was very warm. It didn’t take her but a few minutes to fall asleep.

Tonight is Monday night Steelers football, and since Mom is in bed sleeping I’ll actually get to watch a game for a change. Haven’t watched one since I moved in with Mom because she’s not a real fan of football. She used to sit and read or crochet when Dad watched the Steelers. Everything time he’d yell and cheer when they got a touchdown, she’d jump in her chair and say he ‘scared the living daylights out of her’. I root and cheer just like Dad used to, so I figured it’s best if I don’t turn the games on when she’s in the room. We need all the living daylights we can get. ROFL

Don’t think I’ll be getting much sleep for the next couple nights. I’m not a fan of electric and oil heaters running, so I’ll be up and down all night checking them to make sure they’re not heating anything except the rooms. Never can be too careful.

To Betsy

This morning I was happy that I was able to visit my Uncle Joe yesterday, Mom enjoyed the visit, and I actually found some time to finish writing a book review that’s been long overdue.

I’ve been busy with Mom all day; dressing her for the day, helping her with her bathroom needs, making meals, and keeping her busy. Weekends she tends to get anxious if I’m not sitting and talking with her or doing something with her. I managed to get the laundry finished and she helped me fold clothes, put them on hangers, and fold towels. She said she felt good helping with things because she doesn’t want me to have to do everything. I told her how much I appreciated her help and we sat for the rest of the afternoon working on word search puzzles and coloring.

Dinner is finished and Mom is tucked safely and warmly in bed and I thought it was time for me to catch up on my blog reading.

I went to Betsy’s blog first and found myself in tears when I read that her mother passed away over the weekend. I haven’t met Betsy personally, nor have I met Lori, Nancy, Terry, or Shirl, and many of the other caregivers I link to on my blog, but the relationships we’ve made through our writing about our journey with Alzheimer’s has been a rewarding one. We’ve become family to each other.

We’ve experienced similar drawbacks in our care giving, shared our concerns, even passed our phone numbers on to each other, yet we hesitate to make that call because we know how busy everyone’s day can be.

Each of these wonderful people have shared their journey right through to the end and it’s the end that saddens me so much. Shirl’s Bob died on April 27, 2007. Lori’s Helen died on Monday, September 17, 2007. Nancy’s Russ died on Thursday, September 20, 2007. Terry’s dad died on Friday, September 21, 2007. And now Betsy’s mom died on Friday, November 2, 2007.

Each have become very important to me and hold a very special place in my heart. Each giving of themselves in a way no other could. Some of us have common interests, some have common lifestyles, and some even have common superstitions. Thank you all for being the special people you are.

Betsy ran across my blog on August 20, 2007 and commented, “It seems we share many common traits: full time caregiver for an AD mom, freelance writer and Pittsburgher. I'm delighted to "meet" you!”

Besides being caregivers for a loved one with Alzheimer's, Betsy and I do share common traits, even past those things she mentioned. I was delighted to meet her as well and she’s held a very special place in my heart since. We’ve kept in touch through our blogs, and she was so kind to take time out of her busy day to send copies of the Reminisce Magazine. I thought it was very sweet and thoughtful for Betsy to share with my Mom something that her mom enjoyed for so long.

Today when I read Betsy’s words, “Those were our last words to each other,” I knew without reading any further her mom had passed and my heart broke for her. Through tears I continued to read her post about how she listened for her mom’s sleeping sounds through the baby monitor and my heart ached even more. So many of us caregivers can relate to the feeling of not getting comfortable until we hear our loved one’s soft steady breathing. We know the sounds of the bed, the different types of breathing, and when our loved one’s are sound asleep. Then we know we can relax for a short time, and maybe catch a bit of sleep until they call out to us during the night.

Silence through that monitor is something none of us want to hear. I could feel the numbness Betsy felt as she stood outside on the porch trying to gain the strength to check on her mom in the morning when she heard that silence. I can only imagine how difficult those moments were and how long they must have felt to her.

Crying, I reached for the phone and called Two Feather. He knew immediately that another of my friend’s loved ones had passed. He’s received several of these calls in the past six months. Two Feather understands the heartbreak we go through each day; he watches me hold back tears as I watch a part of my mom disappear as the days, months, and years go by. He hesitated for a second and asked, “Who?” “Betsy’s mom,” I said choking back the tears. He said, “She lives near here, doesn’t she? Tell her I said I’m sorry.” Then he hugged me and said, “I’m sorry. I know you’ve become friends.”

I must have had a distraught look on my face because he asked me what was wrong. Betsy’s post mentioned that the viewing was today and the funeral would be tomorrow morning. She’s so close, yet I realized I wouldn’t be able to be there for her during her time of need.

Betsy, please know that I’m thinking of you and your wonderful family and I am keeping you in my prayers. I may not be able to stand beside you, hold your hand, and give you that comforting hug you deserve, but I am there for you, my friend.

You were the template your mom used when she made those craft angels. ((Soft hugs)) I love you!

The Greatest Love of All

It’s been a long time since I’ve listened to some of my favorite songs; songs with heartfelt words that have helped me through some of the most difficult times in my life. I remember my childhood and my life very well. I’m not perfect and I’ve never claimed to be as such, but I know all my decisions came from my heart and my heart has never led me down the wrong path. With each trial and tribulation, no matter what the adversities, I’ve picked myself up, brushed myself off, and continued on; hoping the experience gave me the wisdom and the strength to be a better person and share what I’ve learned with others—to help others.

I have my parents to thank for that piece of wisdom. No matter what I’d been through, my parents were there for me, and through the years, they know I’ve always been there for them—just as I am today with my mom in her battle with Alzheimer’s.

Thank you, Dad and Mom, for showing me the greatest love of all.
Greatest Love Of All

I’d like to think that I raised my children with the same morals, respect, and love in which my parents raised me. Some people may say I was spoiled and that I spoiled my children, but I look at things differently; I look at everything as an experience and give honor to my parents for allowing me to be myself and experience life, make decisions, while helping me meet my dreams by their words of encouragement.

As my parents encouraged me, I encouraged my daughters. In 1992, my daughter Angel decided she wanted to enter the Miss Teen Of Pennsylvania Pageant. I encouraged her along the way and my parents did as well. They made the trip to Altoona to watch the pageant and share in what would be just one of her many decisions and journeys in life. All week before the pageant, Angel seemed very distant to me. I remember thinking at the time that she was nervous and staying in her room with the door closed was her way of sorting out her thoughts. It was, but it was also her way of keeping something from me that she didn’t want me to know. Our family had gone through some hard times for a few years; I’d had a stroke, my dad had a stroke the year after mine, among other things that seem so far in the past now that they don’t require a mention. Again, music and the meaningful words of those songs lifted my spirits and reminded me how important life is and how somewhere out there is someone for everyone.

During the talent section of the pageant, Angel walked on stage with the brightest smile, looked at me sitting in the audience and said, “This is for my mom.”

Somewhere Out There

The tape that she’d had the background music on stopped just after a few notes. The pageant coordinators tried restarting the tape again, but it didn’t work. The second time the tape was started and stopped, Angel stood proud, and sang Somewhere Out There A Cappella. When the song was complete, she received a standing ovation for her song and her ability to continue on without the use of the music. She dashed off the stage, in tears, and ran into the hallway. I met her there with the brightest smile I’d smiled in years. She said, “I’m sorry, Mom. I wanted you to be proud of me and surprise you.” As I wiped her tears and mine, I said, “Honey, I am proud of you. You stood there and sang your heart out despite the problem.” I was surprised that she’d picked that song to sing for me, but I wasn’t surprised as to how she handled the situation. She picked herself up, brushed herself off, and she kept going. She did make me proud and she continues to make me proud everyday. Thank you, Angel, for being you and learning that being stubborn and gracious can go hand in hand.

I’m not sure why so many memories are flooding my brain lately. Despite the fact that some memories are a bit hard to swallow I still know that I wouldn’t change anything in my life. Everything I’ve been through, and every person I’ve met along the way, has made some type of impact on my life. Whether good or bad, those impacts made me who I am today.

Friendships come and go, but for some of us, we treasure them forever. Thank you to all my friends who’ve been an important part of my life and made those impacts. You all know who you are! My mom has always been my best friend my entire life. This song goes out to her and all those I hold close.

You've Got A Friend

There are many songs that have come and gone yet the words seem to have so much depth for so many. I can’t think of how many times my daughters’ Angel and Stacey have stood beside me through thick and thin. Angel, though we are so much alike and have butt heads in the past, you’ve never needed to try to make me proud, pride is a natural instinct that is built in the heart of mothers. I think you know that now that you have your own little girl. Stacey, who always kept to herself and still pretty much does, has always been my sounding board and still is. “Beaches” has always been one of her favorite movies, and its theme song became one of my favorite songs. I want you both to know that I love you very much and always will and you both make me very proud. This song is for both of you because you are the wind beneath my wings.

Wind Beneath My Wings

Through all the years, through all the good and the bad, I’ve listened to the words my dad once spoke to me during one of the most difficult times in my life. He said, “No matter what, don’t let anyone ever use you as a doormat. You deserve more than that. I don’t say it often, but always remember I love you and I’m here for you.” My dad didn’t say “I love you” often. He didn’t need to, but through the years he was always there for me as was my mother. They never let me down. In many ways, my dad is still there for me now. This song is for Mom, Dad, Angel, Stacey, and Two Feather. Thank you for being there for me. I’d like to think I’ve been there for you too.

Through The Years

And just to throw in a real oldie, for old time sake, here’s one that’s always been special to my heart, not because of the words, but because of the memory. My oldest brother, Bob, and I were very close at one time. He and his friends had a small band and would practice in my mom and dad’s basement. He’d practice before the guys came over and he'd let me sing the background music for him. When the guys were there, I knew not to bother him. I’d sit on the steps and listen; smiling the whole time, knowing that he’d let me sing with him when his friends weren’t around. Yes, I do remember, Bob, even though those times happened in the spring of our years. By the way, did you ever finish that book? Thanks for those memories, Bob. I’m still pretty good in the background.
Come Softly To Me

Hope you’ve enjoyed my trip down memory lane. There’s plenty more to come. Get ready, because I spent Friday going through all my old pictures and my uncle’s albums. I’m sure I’ll be able to piece together a beautiful new memory album for Mom. As soon as I have time, I’ll share some pictures from the good old days.

Have a great day everyone, and remember finding love inside yourself and sharing it is the greatest love of all.

Another Good Day

This morning Mom woke up and complained of being tired and wanted to go back to sleep. I made her breakfast, but she didn’t eat much. Her appetite is less and less these days. After breakfast we went into the living room and she looked through a few magazines that my friend Betsy sent to us. She loved looking at the old pictures. I read her a few of the stories and she decided she wanted to color a picture. Before Alzheimer's, you'd only find Mom coloring when my daughters were young, but she sat for about two hours coloring while I ran back and forth doing the laundry and checking on her.

It was such a beautiful day today I couldn’t resist talking Mom into sitting on the porch for a while.

Mom enjoyed sitting outside talking in the fresh air and warm breeze. Her dog and cat stayed close beside her feet. The cat is an outside cat, but always comes around for attention when we come outside. Mostly he comes to the porch when he sees us because he thinks he’s going to get fed. When he sniffed his empty bowl and flopped down on the porch by Mom’s feet, he looked a bit disappointed, but his ears perked up when Mom reached to pet him.

Angel, Tim, and Katie came over again today and visited for about an hour. They sat outside with us and told us about the houses they visited and decided to make an offer on one of them.
Katie was as cute as ever playing with her Elmo doll and walking over to pet Mom’s dog and giggling when he licked her hand.


Mom ate a fairly good dinner tonight. It was the most she’d eaten all weekend. Katie loved the roasted chicken, stuffing, baked sweet potato, and broccoli.

After the kids left, Mom said it was time for her to go to bed. She said she was “full and tired” so we went through our bedtime routine and by the time she was dressed for bed she was exhausted. She said she was looking forward to going back to “club” tomorrow. Club is what she calls the adult day care. Mom’s never been an early riser, but she never seems to complain when it’s time to get up for club. She enjoys the activities they have there. I’m so happy that she thinks of it as a senior club and doesn’t realize it’s a day care for the elderly. On days she’s at day care, when I’m not running errands, grocery shopping, or cleaning the houses, it’s the only time I’m able to get any restful sleep or relaxation. Both Mom and I benefit from this respite care.

Visits and Smiles Are Priceless

My daughter, Angel, her husband Tim, and my granddaughter Katie came in again this weekend. Third visit in four weeks. It’s great seeing them when they come in. Mom always enjoys their visits. They stay for an hour or so and leave when they know Mom looks and sounds tired.

They’re looking at houses this weekend because they are planning to move back to this area. Their camper will be parked here at Mom’s for a while until they find a house and move it to their new home.

Seeing her camper sitting in the yard makes me think of camping and the last trip when we took Mom to a Powwow over Labor Day weekend 2006. We’ve always included Mom in everything we do, and wanted to continue taking her places for as long as we could. We found out that weekend even short trips for a few days only added to her confusion and frustration from this horrible disease Alzheimer’s. Staying in a camper only confused her more. It took a week for her to realize she was back home and things were never the same after that; Alzheimer’s was stealing her mind bit-by-bit, memory-by-memory.

Now, we enjoy each day here on our wonderful piece of heaven in our own backyard. It’s peaceful, quiet, melancholy, and beautiful. Mom is quite satisfied staying at home, even if most of the time she doesn’t realize it is her home.

This weekend would have been a lovely weekend to go on a camping trip. The cool soft breeze, beautiful changes in the color of the trees, and sitting by a small brook or river sounds so inviting. We all look forward to the day when we’re able to load up the campers and meet for a weekend rendezvous again, but we’re all quite content enjoying the time we have with Mom in our little slice of nature here at home.

Katie is learning all sorts of new words. She's now asking, "What's that?" and "What's this?" as she points to different things. She says, "GG" and points to my mom. My grandchildren have called Mom 'GG' since they learned how to talk. It's much easier than saying great-grandma. My other granddaughter, Trinity, couldn't get out the "grandma" for me; it ended up coming out as "Bammaw" so that's the name that's sticking for me. Katie hasn't mastered it yet, but she's getting there.

None of us would trade the time we have with Mom now for anything. Just seeing the smile on her face when her granddaughters and great-grandchildren come to visit is worth the time we spend with her. Her smile is priceless and it will be imbedded in our hearts and minds forever.

Longer Nights, Shorter Days

Today seemed to fly by more swiftly than Friday. Mom was up and down a dozen times during the night, rummaging through her dresser drawers, trying to pull off pajamas, going through clothes in the closet and trying to put them on over her pajamas, and using the potty chair.

She finally settled down about 3:00 AM and slept. Since she was up and down most of the night, I let her sleep until 11:00. She still seemed exhausted after eight hours sleep and ate very little breakfast.

The occupational therapist called at 11:45 and said she had one more visit with Mom and wanted to know if she could come by then. She was here by noon. She worked with Mom on arm exercises for about 45 minutes. Amy was very sweet. She left her cell phone number and told me to call anytime if I had any questions or when Mom’s situation changes and she needed more care. She’s a very sweet and caring person. All of Mom’s therapists and nurses have been wonderful. This was the last visit today. Mom’s been discharged from home care because she’s reached her full capability.

After Amy left, Mom and I sat in the living room and I read her the recent letter from her friend. I put Mom’s writing tablet and pen on the snack table in front of her so she could write a letter back. For the past several months, I’ve had to give Mom ideas as to what to write. She’s not been able to think or concentrate enough to figure out what to say in a letter. I’ll jot down a few notes on a piece of paper, tell her to write about those things, and I’ll come back in the room a few minutes later. She’s asked me to read the letter over to make sure it sounds okay, and I told her it’s fine. It took her two weeks to finally finish a letter to her friend the last time.

I called her friend to let her know that Mom has Alzheimer’s because I’m sure by now she’s realized that Mom’s letters are not the same as they used to be. She used to write long flowing letters about everything she did for the week and apologize for the length of the letter. Now, her letters are a half page to one page long, with repeated sentences, and apologies for her messy writing.

She said that she thought that might be what was wrong because Mom had written the same sentence over and over in several letters. She felt bad that Mom has Alzheimer's but she said she gathered that when Mom asked when her birthday was. Mom and her share the same birthday and began writing to each other more than 30 years ago through an ad in Workbasket magazine about birthday pen pals. She said she would continue to write, wished me and mom the best, and thanked me for the call.

Mom’s mind is deteriorating more and more. The few things she loved to do, reading books and writing to her friend, have become burdensome to her. She no longer reads, and she’s struggling to write.

Alzheimer’s robs her of a bit more each day. It steals her memory, her abilities, and it’s slowly stealing her pride in the lucid moments she has when she realizes she’s not able to do what she used to do.

When she finished her short letter today, she said, “I’m going to quit writing letters. I don’t know what to write anymore.”

She was mentally exhausted after two hours of trying to write 15 sentences. She finally finished her letter by saying, “Hope you have a real nice summer.”

Yes, I needed to call her friend before mailing this letter. I’m not sure how much more Mom will be writing, but at least her friend will know that Mom cares and is doing her best. I so much appreciate her continuing to write to Mom.

Mom wanted to go to bed at 3:00. She ate very little dinner today. I kept her talking and coloring until 4:00 when she began to doze off during our conversation. She was in bed and asleep by 4:45. The days are getting shorter. :(

Weekend and Half the Week Gone--Sincere Sympathies to Caregiver Friends

This past weekend was a nightmare, because of nightmares. Saturday night Mom was up 15 times. She’d no sooner get to sleep and she was awake again because of a dream she kept having about someone chasing her and trying to hurt her. Then, the person in the dream was trying to hurt both of us. I felt so bad for her because each time she awoke, she thought she’d been awake and thought the dream was real. She asked me to walk around the house and check all the locks.

It’s amazing how she can be up most of the night, catch a few winks in between, and only show the normal tiredness she shows after a good night’s sleep. Normally when this happens, she gets exhausted around 2:00 and I have to keep her interested in different activities, forcing her to stay awake at least until 4:00 so she can eat dinner and sit up a while for her food to digest some before she goes to bed.

Sunday morning between 8:00 and 9:00 she was up and down 20 times thinking she had to go to the bathroom and feeling like she was going to vomit. Neither of which came to fruition. Each of those 20 times, before trying to get out of bed, she yelled, “Joannnnne, help me!” She’s not running a fever, she was just checked for a UTI, so that’s not the problem. She’s always had an overactive bladder. Her brain is simply malfunctioning and she doesn’t realize she’s been up and down so many times.

Those who care for someone suffering with Alzheimer’s know that a person with AD will get up and wander or roam the house, or think they need to go to the bathroom, when they don’t, or they simply want to go home, not realizing they are in their own home. Some caregivers are up and down with their loved ones 30-50-70 times a night, with no exaggeration, for various reasons. My heart aches for them.

There is no predicting whether or not your loved one will have a good day/night or bad one. You take one day at a time, and one moment at a time. Everything and anything can change from one instance to the next. Just when you think you might have something figured out, it all changes.

Since the weekend, we’ve had the physical therapist and occupational therapist in two more times. Wednesday, the social worker from the hospital came and talked to me about resources available through their office and she discussed getting things in place for hospice when it is needed. She’ll be coming back with more information on Monday.

*** In Memory of Those Who Have Passed ***
I’d like to extend my sincere sympathies to my caregiver friends who have recently lost their loved ones. My thoughts and prayers will be with you during this difficult time. For Lori, Nancy, Terry, Shirl, and so, so many others who have been down this path, please take care of yourselves. Know that I’m thinking of you and keeping you in my heart.

***
For all caregiver friends who continue on this path with their loved ones, know that I also keep your loved ones, you, and your families in my thoughts and prayers. While you care for your loved ones, please take care of yourselves as well.

((HUGS)) to all. Thank you for being you!!!

Happy Birthday, Mom!!!

I got Mom up at 9:30 as usual to begin her day. Instead of the normal, “Good morning, Mom, it’s time to get up,” I began her day with, “Good morning, Mom. Happy Birthday!!”

I’d been telling her all week that her birthday was Saturday, they even sang Happy Birthday to her at the Adult Day Care yesterday, but she didn’t remember. She started her birthday off with a bang. Three trips to the bathroom and before she even had the chance to eat breakfast; we’d already cleaned her up and changed her clothes three times. I felt so bad for her. She becomes angry with herself, then becomes embarrassed, then feels bad that I have to clean her up. My heart wrenches when she has those few lucid moments and realizes that she has no control over her functions. I truly hate this disease Alzheimer’s and what it is taking from my mom. If there is anything good about Alzheimer’s disease, it is the fact that our loved ones don’t remember the embarrassment; the next moment is a new moment and it’s as if what happened before never happened—because it’s lost from their memory.

Breakfast was scrambled eggs, fried potatoes, juice and coffee. She loved her breakfast and ate nearly half of it.

Two Feather came down after breakfast and gave her a card he’d made and picked wildflowers for her and gave them to her. She loved both the flowers and card.


She kept telling him what a nice person he is and how she’s so lucky to have him in her life. He was thanked at least a half dozen times for the card and flowers. Mom just loves Two Feather so much. He always makes her smile and brightens her day.

While Two was there, I gave Mom the four new pair of pants we bought her. I’d written a poem for her, but she had a hard time reading it. It wasn’t just the size of the type; she was having a difficult time figuring out the words. So I read it to her.

Happy Birthday, Mom © Joanne D. Kiggins 2007

Mom, when the Creator gave you life,
I’m sure he had a plan.
For you to be a mother and a wife,
and mainstay of this clan.

Through the years,
you’ve taught me right from wrong.
Through good times and tears,
you’ve helped me to be strong.

You’ve given me joy in my heart
and made my life so full.
I’m so thankful for being just one part
of your wonderful world.

You watched me grow from a little girl,
to the woman I am today.
Through your eyes I’ve seen this world
and we continue on our way.

Through the years you’ve listened, loved and cared,
showing me what was in your heart.
I thank you for all we’ve shared
and giving me that precious part.

I only hope over the years,
I’ve been the best I could be.
Making you laugh more than giving you tears;
being as good for you, as you’ve been for me.

So Mom, through the years and on this special day,
you’ve been led through the Creator’s plan.
Over all the years, forever, and today
you’ve been the most precious part of this clan.

Yes, Mom we’ve laughed, we’ve cried, we’ve made time fly.
Best friends are we, you and me.

HAPPY BIRHTDAY MOM!!! I love you!

Mom listened to each word as I read and with each word more tears flowed. Knowing that she understood even part of what I’d read touched us all deeply. She reached for me and hugged my neck and said, “Thank you so much, honey. That was beautiful. Thank you for everything.”

She thanked Two Feather again for the card and flowers, told him she loved him, and he excused himself to go off to work chopping wood again.

After all the tears were dried, I placed all the cards in front of her that she received in the mail. There was a card from her neighbors, her pen pal, my daughter Stacey & her family, a card from my oldest brother with pictures they’d taken of him and Mom and his wife and Mom during their recent visit, and a card from my other brother and his wife. We placed all the cards on the dining room table as we always do and we leaned the pictures against candleholders in the living room where she could see them everyday.

My daughter Angel called about noon and asked if they could visit about 1:30 or 2:00 and I told her that would be fine since the OT nurse would be gone by then.

The OT nurse came about 12:45. She asked Mom to show her how she gets up out of her chair in the kitchen and living room. Then they went to the bedroom for a demonstration of how she gets in and out of bed. Then, she was instructed to go to the bathroom to show the nurse how she gets in and out of the bathtub for a shower. Mom chuckled and asked, “With my clothes on?”

We all chuckled about that and the nurse explained she just wanted to see how well Mom does with her daily needs around the house. Of course, since Mom had been up for three hours, she was a bit more limber and performed all the transfers fairly well. The nurse asked if she was always able to move this freely and Mom said, “No. Not really. But I’m awake now.”

The OT nurse said she’d be coming back a few more times but would have to call the insurance company to find out how many times Mom was allotted therapy and she would call to schedule her next visit next week sometime. She was finished and left at 1:25.

My oldest brother called, as I was ready to walk the nurse to the door. He and I talked for a few minutes, I told him how Mom was doing with all the therapy, and I gave the phone to Mom.

Angel, Tim, and Katie came at 1:30. They gave her a card and a new shirt.


Alzheimer’s is such a thieving disease. It not only affects our loved ones, it affects the family members as well. We never did take Mom out for dinner because she was still having bathroom problems while Angel and Tim were there and she was worn out from the OT nurse being there.

We even managed to talk Katie into sitting on Mom’s lap for a picture. Angel, Tim and Katie left about 3:15 when Mom said she was tired. We’ll see what tomorrow brings. Maybe we’ll take her out for lunch if all goes well.

Stacey called, but her cell wouldn’t hold a signal so she said she’d call back tomorrow.

I heated up one of the meals I’d made on one of my “all-night” cooking sprees when Mom was roaming through the house a few weeks ago after nightmares. Those prepared meals made it really convenient to pull out two stuffed chicken breast dinners, with carrots. I had a package of sugar free cupcakes and put a candle in one for Mom’s birthday treat. She thought that was a great idea. She was only able to take a few bites of the cupcake after eating dinner, so we wrapped it up to save it for tomorrow.

All in all, Mom’s birthday went very well. She enjoyed the cards, and the visits from Two Feather and my daughter and her family, but in between each she still didn’t remember it was her birthday, even immediately after opening her cards and gifts.

Mom was in bed and loudly snoring by 5:15. She’d had a busy and happy birthday!

Oh yes, Laura, I did tell Mom you said, “Happy Birthday.” She said, “Tell your friend thank you.”

By the way, yesterday, Two Feather spent the entire day working on the Mule and got it fixed. No need to call for service! And no, Laura, it's not a "live" mule. LOL