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.

November Update

I’m gaining some strength back and feeling better and Mom is doing well health wise, but she’s losing strength in her legs and has had a drastic decline in her memory and ability to comprehend things.

November 7th was my 56th birthday. This year was much better than last. I heard from both my daughter’s early in the day. Two took me out for lunch and I received a few surprise calls. I also had a very nice surprise when I picked Mom up from day care. Angel had called the day care and asked if they would help Mom make a birthday card for me. Mom handed it to me in the car and when I opened it I broke down in tears. Mom was so proud that she remembered my birthday and made a card for me. The envelope had a flower on it made with foam and my name in foam letters. The inside of the card had more foam flowers and Mom’s handwriting. “To my beautiful daughter, Joanne. I love you, Mom.” Inside the card was a small wooden apple with a heart and my initials in the center.

Thank you, Angel. That did mean a lot to me. I will treasure this card from Mom for the rest of my life.

Angel, Tim and Katie came over on the 8th and brought a delicious chocolate birthday cake with strawberry icing. Katie was playing on the couch and fell. She smacked her lip on the edge of the coffee table. I felt horrible that she got hurt. She’s a tough little bugger, though. She barely cried and the ice Angel put on it helped to keep it from swelling and bruising too much.

November was pretty quiet the whole month, but not without mention.

On the 18th, Gail, the nurse at the day care called me to the side. She wanted to let me know that Mom’s perception of things is getting much worse. I knew it was, BUT, the way Gail showed me was a true eye-opener as to how much worse. An artist from the local art center visits the day care on Tuesdays and works with the clients. This art project was to draw an owl as they saw it from the picture the artist had displayed. Gail showed me the pictures of the owls all lined up on the counter. They were actually very good drawings. Then, she asked if I’d like to see Mom’s and she handed it to me. “Wow” was all I could muster before the tears started flowing. Mom’s drawing of the owl was a few circles for eyes with scribbles all around them, but in her mind, it probably looked just the the artist's picture.

I knew there had been a drastic change in Mom’s perception and understanding, that's normal with Alzheimer's, but seeing the pictures of the owls and the difference between her drawing and the other drawings truly made me realize how drastic the change was.

It made me realize I need to at least consider placement as an option, possibly before she becomes too weak and while she is still sociably aware, to help her adjust to a different environment. I even went as far as to visit a few ALFs beside the one I’ve used for respite care.

I nearly had my mind made up to make the change the weekend before Thanksgiving when Mom’s knee began to bother her and she couldn’t put weight on it. But I couldn’t bring myself to do anything so close to the holidays. She's back to using her walker.

We’ll see how things are after the holidays—or maybe we’ll see what this winter brings. I don’t know. I just know there are times when I don’t feel like I can do this anymore. Watching her decline is killing me, but I can’t bring myself to take her out of her own home. She may not remember it as such anymore, but my gut tells me that me being here with her is the only thing that she hangs onto. Maybe the same goes for me.

Some Fun, Some Not So Fun, Some Sad--July Update

July began with me not feeling well. I was aching from head to toe. There was no cold or sneezing, just a deep congested cough coming straight from my chest. I knew immediately the weather in June made a home in my lungs with bronchitis. An appointment with my doctor and a chest x-ray on the 15th confirmed it. I was put on antibiotics for two weeks.

My daughter, Stacey, and her family came up from Alabama for a visit on the 24th. They visited with us all day on the 25th while Mom was at club. Two Feather was cleaning up the branches from the big oak that was left lay by the loggers in the lower yard.



Stacey’s husband, Dennis, was throwing the small branches onto the wagon and Stacey drove the Mule behind the house where we threw the branches and brush over the hill in a large gully.



Trinity and Quenton helped throw branches, too. Tux, Stacey's dog, had to get in the action, too. They were having fun helping Pap Pap and Bammaw clean up GG’s (great grandma’s) yard.

On the 26th, Stacey, Dennis, Trinity, and Quenton came over and spent the entire day visiting with Mom and on the 27th they came back again with Angel, Tim and Katie and visited most of the day.



I managed to get everyone in the picture. Of course, there are two people missing in the picture; I was taking the picture and Two Feather ran up to our house to bring Ricky the raccoon down to meet the family.

Angel and Katie met Ricky in June. This is a picture of them.


The kids loved petting him.



Mom thought he was adorable and held him on her lap for a while. Her eyes lit up when he crawled onto her shoulder and squeaked.



She thought it was great that we nursed him back to health and that he was so small, cute, and cuddly. She just loved him.



I snapped of shot of Angel and Stacey playing ring-around-the-rosy with Katie, Trinity, and Quenton. Shortly after, the girls announced they were leaving because they knew Mom was getting tired. They planned to go out for dinner and left so I could get Mom something to eat and keep her on her schedule. It’s times like this that I miss being able to get up and go and spend more time with my kids and grandkids, but I’m very thankful that they recognize the signs of Mom growing tired and understand the need to keep her on her schedule. Mom is only able to take so much out-of-routine and more-than-normal crowd around her for so long. You caregivers know what I mean; anything and anyone out of the ordinary seems to mentally fatigue our loved ones that much more.

Monday the 28th I took Mom to day care and I went to my doctor because my bronchitis wasn’t much better. He gave me another seven-day prescription and insisted that I take care of myself for a change. I wasn’t getting the rest I needed for the antibiotics to work properly. It was either place Mom in the ALF or I would end up in the hospital and have to place her anyway. I called the ALF to take her in the next morning. After I dropped her off, I went to my house and slept and rested the rest of that day and all of the next.

Angel and Stacey wanted to go to the local amusement park, Kennywood, on the 30th. Angel, Tim, and Katie were meeting us there after work. I told them Two Feather and I would go along and watch the grandkids while my daughters and their husbands rode rides that the munchkins were too small for. After all, I’d only be walking around and the temperature was in the high 80’s so what harm could it do?

Two and I took the kids to Kiddieland to ride the kid’s rides. Trinity, Quenton, and Katie had so much fun riding the rides. I rode a few of the rides with them.

While Angel, Tim, Stacey, and Dennis rode the roller coasters, Two and I bought the kids drinks and a funnel cake with powdered sugar on it. Between sharing the funnel cake and talking with our grandchildren, we kept them occupied until my daughters were off the rides.



I thought it was cute that Angel kept calling me from the cell phone asking if we and the kids were okay and letting me know where they were in line and how long it would be before they came back.

The day was beautiful. I even road a few of the rides, too. I rode on the King Kahuna, which swings up in the air and upside down. There was a harness that came down over the shoulders and locked in position and it had handgrips to hold onto. It wasn’t too bad.

I love amusement parks! I love roller coasters and thrilling rides, but I can’t go on those type rides anymore since I have a plate in my neck. I’ve never been afraid to go on any ride…ever.

The last ride of the day, before we left, was the Phantom’s Revenge. I’m thankful Angel had gone on it prior to her convincing me to go on one last ride. She said I’d love it and she went on it with me. She hadn’t bothered to tell me there was no harness or handgrips. It was a long panel of seats in a row—something like movie theater seats. The only difference was it had a skimpy seatbelt and it swung high up in the air. Not too bad, I thought as it started swinging. Then, Angel said, “It’s not over yet!” When I asked, “What do you mean?” She giggled and said, “You’ll see.”

The ride swung higher and higher, and my heart felt like it was in my throat when the next swoop took us so high that we were facing the cement beneath us. I couldn’t wait for the ride to be over! Never in all my years of riding amusement park rides has there ever been a ride I wouldn’t go on again. There is now! I won’t even repeat what came out of my mouth as my heart jumped in my throat with each swing. When I walked up to Two after I got off the ride, I said, “That was terrifying! There was nothing to hold on to. Never again!”

Angel asked someone take a picture of all of us before we left the park. I'll have to get that picture from her.

It felt good to get home, take a hot shower, and cuddle up on the couch. I was tired from walking all day, but we had a wonderful time.

On the 31st I asked everyone to meet us at a Mexican restaurant for dinner. I wanted to take them all out to dinner to celebrate Angel and Tim’s wedding anniversary (which was on the 29th)
and Stacey’s birthday (which would be on August 3rd). Stacey was leaving on Friday morning and I wanted to be able to spend time with everyone before she left.

All in all, July wasn’t too, too bad. My bleeding ulcer is being treated with two medications. The abnormality in my blood was diagnosed and I had another small surgery at the beginning of the month. There are a few other things I need to take care of that I wouldn’t mind telling my friends about, but I really don’t feel comfortable putting it out here for nosey eyes to read. Let’s just say, things are going as well as can be expected and I will persevere!

On another note, a dear friend of ours passed away, another friend’s daughter had a gorgeous baby girl, our loving cat, Coffee, died this month, and the logging was completed on July 7th.

Be back as soon as possible with the next update. I’ll try to cram August and September into one post so I can get back to regular posting. Keeping all of you in my prayers.

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?

Spring! Snow? Happy Easter!

Hello, my friends. Didn’t mean to worry everyone. Just been very busy taking care of a few things around both houses. The last three Fridays we had fish dinners from our local fire hall. Two Feather sat with Mom while I went and picked up the dinners the first two Fridays and on Good Friday Angel and Tim bought dinners for all of us and brought them to the house to eat dinner with us. Good Friday marked the tenth anniversary of my dad's death.

My doctor has put me through a battery of tests and I’m still waiting on the results from those. He’s not happy with my weight loss and it’s time for my annual tests anyway. We’ll see what comes from that. I’m not really worried. Whatever comes, comes. I’ll handle it.

I’ve been up to the nursing home to visit my Uncle Joe twice since I posted last. He had the flu but seems to be doing better now. His dementia is progressing and his lack of concentration was very evident this past week.

Mom’s appetite is getting better and she’s abandoned using her walker. She’s getting around pretty good and her legs seem to be getting stronger as long as the walking distance isn’t more than ten feet. The time change confused her for nearly a week and she’s back to getting up and down during the night. Seems lately her Alzheimer’s is taking a few steps back instead of progressing. That’s a good thing, it’s just you never know from one moment or day to the next which way it’s going. Memories are coming from nowhere at times and conversations are forgotten within minutes or seconds. I hate this disease and its back and forth, ups and downs and plateauing.

Happy Spring and Happy Easter to all who celebrate. Though I’m not sure spring has sprung with 20 degree temperatures here and another inch of snow. :( The sun has melted all the snow finally.

I’ve missed reading what’s going on with everyone. I’ll try to get caught up on my blog reading this week. Hope all are well. Have a great week everyone!

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.

When It Rains, It Pours

This post was held in queue.

Thursday, February 21

As I said in prior postings, Mom’s doctor took her off trazodone because the increased dosage resulted in her getting one of the side effects of the drug or an allergic reaction—itching. She scratched and scratched until she scratched her skin sore, and in places broke the skin. She had a bout with dermatitis last year, so her doctor recommended I apply lotion a few times a day. I’ve been applying lotion on her entire body everyday ever since, but with this itching, I’ve been applying it more often. The few places she had scratched raw were healing nicely and she had very few spots compared to what she’d had before. The spots were on her forearms, between and just below the clavicle bone, and on the back of her hand, and a few on her cheek.

I told the day care facility more than a week ago that Mom had the itching side effect or allergic reaction from meds.. Symptoms of an allergic reaction include: rash, itching, etc. She started with an itch here and there once in a while and then it stopped until he increased the dosage. The itching came back and a rash started. That’s when her doctor took her off trazodone and put her on seroquel. The seroquel is working wonders for Mom’s sleep and mine, but the itching and slight rash is taking its good old time subsiding.

Thursday I got a call from the day care asking me to pick Mom up. Mom was scratching her hand and the nurse noticed she had a spot / bump / rash on the top of her hand and supposedly on her belly that she suspected might be scabies. I told the nurse (who was standing in for the regular nurse and was aware of Mom’s med reaction) that Mom had been itchy from a reaction to meds and she said I had to pick up Mom and have her tested for scabies. Naturally, I called Mom’s doctor and asked that he fit her into his schedule that day to have her checked. The appointment was scheduled even before I picked up Mom from day care at 11:00 in the morning.

When I arrived at the day care, I said I had an appointment at 3:15 and they were shocked I was able to get her in so quickly. They told me they called the health department and I had to have Mom get a skin test and she wasn’t allowed to return until they had proof of the skin test from the doctor. Then I asked if anyone else was sent home with this same thing, and was told “yes, one other person.” Okay, no problem. I at least knew to tell Mom’s doctor that two people were sent home due to a “rash” and to be extra cautious with a diagnosis.

From my extensive reading over the years, I did know a few things about scabies. Yes, it does show in the form of a rash; it is an infestation of the skin caused by mites; it is contagious; and it is usually spread by personal close skin-to-skin contact between people in child-care facilities, nursing homes, and by sharing the same bed or clothes. I also knew that scabies normally appears in creases of the skin, between fingers, genital areas—none of the areas where Mom’s bumps are—with the exception of the small bump on the back of her hand between the knuckles of her ring and little finger.

I had nearly four hours to waste before Mom’s appointment, so being the conscientious person I am, I took her home, and sat her in the living room. First, I went upstairs and grabbed my magnifying glass and went back downstairs. Mom probably thought I was nuts when I took off her sweatshirt and began examining her forearms with the magnifying glass. I asked her to turn her head this way and that and checked the “bumps” on her cheeks, then got in close and looked at the “spots” on her hand. After inspecting Mom from head to foot, finding nothing that looked like these pesky little mites or tunnel-looking areas on her skin, I figured I’d take precautions anyway and ripped the sheets off her bed, threw them in the washer with the hottest water setting, added detergent and Clorox and disinfected her bed. Then, I went straight to the computer to research this nasty little parasitic monster that might have found its way into my mom’s skin.

The website for the PA Department of Health states that scabies is “pimple-like irritations, burrows or rash of the skin, especially the webbing between the fingers; the skin folds on the wrist, elbow, or knee; the penis, the breast, or shoulder blades.”

Other sources also mention scabies can be found “on the sides of fingers, armpits, inner thighs and around the waist (belt line).”

According to all the websites I checked (nearly a dozen), all the information I read and pictures I found, I felt confident that whatever it is making Mom itchy and causing her to scratch—it is not scabies. None of Mom’s bumps are in any of these areas and none of her rash-like bumps looked anything like the pictures on the websites.

Off to the doctor we went anyway armed with all the information I never really wanted to know about this little parasitic infectious skin irritation.

Mom’s appointment went well. I told her doctor that the day care said they wanted a skin test and she couldn’t return until they received written documentation of the test and he cleared her to return. He looked at the small bumps on her forearms and shook his head “no”. He said, “it’s highly unlikely that she has scabies and it doesn’t form on the face.” He looked at her clavicle area and said it looked like the dermatitis she had last year. Then, he said, “I’m not going to test her for scabies. It takes longer to get the test results than it does to treat it. So I’m just going to treat her for it.”

“So we don’t know if she has it or not?” I asked.

He said, “She’s had this itching and bumps for a while. As close as you are with your mom, if she had scabies, you’d have it by now, too. You’re not showing any signs of itching or rash.”

“No,” I said. “I don’t have a mark on me, and I wasn’t itchy until we started talking about this. I already washed her bedding before I came here.”

He laughed and I did, too.

“You realize scabies doesn’t mean a person or their surroundings are dirty, right?”

I said, “Yes, I know that. It’s just the old-fashioned ideas of scabies bother me, and I’m not real thrilled with having to be treated for something I know I don’t have.”

“Yes, I understand,” he said. “Everyone acts like it’s a big epidemic and gets so alarmed by the word, but it’s really quite a common thing.” Then, he said, “It’s very evident that you take very good care of your mother, Joanne. Knowing you, and seeing the report from the social worker who went to your mom’s house when you wouldn’t place her in rehab several months ago, you wouldn’t need to worry about it anyway. They noted that you kept your mom’s house spotless.”

He added, “If it hadn’t been that you said another person was sent home with a rash, I wouldn’t treat her, but we’ll treat this as if it were scabies just to protect your mom and you. I’ll write a prescription enough for both of you. You treat yourself as well. As long as it’s treated, she’s not contagious and if the day care were open on weekends, she could return by Saturday.”

I reminded him that the day care wouldn’t allow her return without the test. Mom’s doctor is well known in our area for working with nursing home residents. He said, “When there’s one person diagnosed with scabies in our facilities we treat that person and everyone on the floor just as a precaution, including the staff. The day care can’t stop your mom from returning if she’s been treated. A person who has been treated is non-infectious to others on the day after treatment.” He added, “I’ll write a note that she’s been treated and is non-contagious. If that’s not good enough for them, you tell them call me directly.”

He wrote a prescription for Permethrin, enough for two people, and wrote a note on his prescription pad that Mom was treated for scabies, was non-contagious, and he wrote on his prescription note that the day care should alert their clients and suggested they and the day care workers in contact with Mom be treated as well.

He handed me the prescription and said, “If this is scabies, this will stop the itching in a day or so. If the itching doesn’t go away, call me and we’ll get your mom set up with a dermatologist.”

I thanked him for fitting Mom in between patients. I stopped at the day care and gave them the note from the doctor and said Mom would be back on Monday. I was told that the doctor’s note on the prescription might be a problem. They said, “We were told to tell you that she had to have the test, we have to have proof of the test, and she can’t return until then.”

I said, “Mom’s doctor said it takes less time to treat the supposed problem than it does to get the test. By Monday she’ll have been treated and non-contagious. If treatment and his note aren’t sufficient for your nurse, she can call him directly. We’ll see you Monday.”

Mom and I stopped at the pharmacy to pick up the medication and went home to dowse ourselves in Permethrin.

Oh joy! Are we having fun yet?

Hit Me Like A Brick

Today I decided to get off my lazy butt and start cleaning MY house. I’ve not taken very good care of it since I moved in with Mom. Being so tired all the time, I don’t give my house the attention or the thorough cleaning I used to. I manage to swipe a feather duster around the corners of every room and all the shelves and knick-knacks every few weeks and mop the floor once a week, but it’s not the same.

I gave both bathrooms a thorough cleaning—the down-on-my-hands-and-knees-type cleaning like I used to. I scrubbed the walls and took the shower curtain down and cleaned it. The bathrooms looked so nice when I finished that I decided to move into the bedroom and start working on it. I opened every drawer of the dressers and neatly rearranged all the clothes, cleaned the dressers with Murphy’s Oil soap, and gave them a good waxing. I put clean sheets on the bed, ran the sweeper, and started the laundry.

Then, I decided to tackle the bedroom closet. When I moved to Mom’s most of my clothes moved with me, but the floor of my closet was piled with clothes I’ve been hauling back and forth. It was time to get them out of the piles and hang them or put them in drawers. It took me 30 minutes to pull all the clothes out and set them on the bed to go through and decide where I was going to put what. There were things in that closet I knew I’d never wear so I put those items in a box to take to Good Will.

I sat on the floor of my bedroom looking at the room, clean and fresh, and felt strange looking at a bed and cleaning a room I haven’t slept in for three years. That strange feeling turned to sadness as I glanced at all the wall hangings that had once been so neatly dusted and cared for. I turned my attention back to the closet as not to cry and arranged the half dozen pair of shoes on the shelf and pulled out another pile of things I had no idea what they were because I hadn’t been in the closet for so long.

Still in the bag, was an Indian blanket Two and I purchased at his reservation in North Carolina when we were there four years ago. Beneath that was a pillow heat/massager that would have come in handy the past few years had I remembered I had it.

Then, below that was what hit me like a brick! It was a treasure I’ll never forget nor one I’ll ever get rid of. My bed caddy! What’s a bed caddy and what’s so great about it you ask? A bed caddy is what you keep your book, eyeglasses, TV remote, and other essentials close at hand. It tucks easily under a mattress and hangs on the side of the bed. This bed caddy is special. I made it from a pair of my dad’s carpenter jeans.



After Dad died, I made one for Mom, both my sister-in-laws, and me. I’d taken it off my bed just before I moved to Mom’s since I wouldn’t be using it. When I pulled it out from the closet, all those strange feelings I’d had while glancing at the room boiled up inside and spilled from my eyes. I sat, on the floor of my bedroom, hugging my dad’s jeans and cried. The book I was reading when I left to live with Mom was still in the pocket with a bookmark Mom made me still holding the place. The pockets also still held my body lotion, reading light, extra pair of outdated glasses, and that darn TV remote Two Feather hasn’t been able to find for three years. I thought finding the TV remote would bring me to my senses when I chuckled, but the tears continued to flow. I held Dad’s jeans against my chest and ran down the hall to Two’s workroom, tears still streaming down my face.

“What’s wrong? What’s that?” he asked. Between sobs I managed the words, “My dad’s jeans.” The shocked look on Two’s face didn’t help stop the tears and neither did the bear hug he gave me when he realized what I was holding. I buried my face in his chest and sobbed, long and hard, whispering, “I miss you. I miss my dad. I miss my mom. I miss cleaning. I miss everything!”

I wiped the tears from my face, walked back to the bedroom, placed the TV remote on top of the TV, and put the bed caddy back in the closet. Two came in and asked why I didn’t put the caddy back on the bed and I told him I wasn’t putting it back until I could use it again.

He laughed and said, “In that case, you didn’t have to change the sheets on the bed. I haven’t slept in it since you left. I sleep on the couch.”

It was then that I realized how difficult our separation has been for him. In these three years I had no idea that Two didn’t sleep in our bed. All this time I thought he was sleeping comfortable and instead he’s been stretched out on a tiny couch in our living room. He’s always called it the “Joanne couch” because it’s only four foot long.

It’s strange how much our life has changed during this care giving journey and how little things like a bed caddy made from my dad’s carpenter pants can send me to tears. Dad died of Alzheimer’s and will be gone 10 years on the first full day of spring. There isn’t a day goes by that I don’t think of him. Losing a loved one is one of the hardest things to deal with. We caregivers tell each other it gets better, and it does eventually, but there are always those unexpected little things that take our breath away and reduce us to tears. Today, for me, it was my bed caddy and Dad’s jeans. Even after 10 years. Love you, Dad. I miss you.

Mom has been sleeping better with this low dose of Seroquel. Friday, Saturday, and Sunday night she only got up twice to use the bathroom each night. YAY!! I slept pretty well on Friday night, but Saturday night I woke up five times. I think my body and mind had been so used to reacting these past three years that it doesn’t know what to do when it’s not called to duty—so it did what it was used to—woke up. It didn’t take me long to get back to sleep once I realized that there was no need to run to Mom. Sunday morning I did feel the effects of not sleeping sound, though. I felt like I was dragging.

It was a dreary day and Mom was having a difficult time deciding what she wanted to do so I decided to pack her up in the car and go visit my Uncle Joe. I normally visit him twice a month, but with everything that’s been going on lately, I hadn’t been to see him since Christmas. I called him in between, but that’s not the same as a personal visit.

He seems to be doing well at the nursing home. He still says the food is lousy but the nurses are good to him. We visited for a few hours and when Mom used the bathroom Joe said he’d follow us to the elevator when she came out. He looked tired and I guess he had had enough visit for one day.

When Mom and I got home, she wanted to eat and go to bed. I tried to keep her up until 5:30 but she was dozing off at the kitchen table after dinner. By the time I got her dressed for bed she was exhausted and fell right to sleep.

Monday was a nothing day. I did absolutely nothing. Guess I’m entitled to that once in a while. :D

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!

Daughter Without a Name, Ice Storms, & Wishing for Spring

Last weekend was a bit crazy and the week that followed wasn’t much better. I posted book reviews instead of talking about the goings on here at Mom’s. Last Sunday when the lady from church was here, she and Mom were talking about family. Mom told her that she had a sister and two brothers and her two brothers were still alive and work together. Alrighty then. Truth is, Mom had one brother and he’s been deceased for more than thirty years. Sunday, I also realized that Mom does know that I’m her daughter, but she had forgotten my name. Every day when I pick her up at day care and she sees me, she says, “There’s my daughter.” Sunday, after the lady from church left, Mom and I were talking. I figured I’d do the little memory quiz that I used to do once every couple weeks. I haven’t quizzed Mom for about two months. At least once a month I would joke with her and ask if she knows who I am and she always said, "You're my daughter." Never thought to ask her if she knew my name. I asked her birthday, address, phone number, all of which she didn’t know the answer. She did remember she was born in October, just not the day and year. I asked her how many kids she has. She did say three. That’s correct.

“What are they?” I asked.
“I think I have three boys,” she said.
I giggled and said, “If you have three boys, who am I?”
“You’re my daughter,” she said.
“Okay. So you can’t have three boys if you have a daughter, Mom.”
“I guess you’re right.”
“What are your kid’s names?”
“I think they are Bob and Ray.”
“What’s my name, Mom?”
She looked at me with such shockingly sad eyes and said, “I don’t know. What is your name?”
“Joanne. My name is Joanne, Mom.”

I knew one day Mom wouldn’t know who I am and I prepared myself for it. I guess it just shocked me that she knows I’m her daughter, but has forgotten my name. I tried to think back to when and how long it’s been since she’s called out to me by name, and I pinpointed it to mid-October when Mom was up and down half the night looking for Mr. N. She would call out to me by name back then, yelling up the steps, “Joanne, are you up there?” She hasn’t called me by name since. Mostly, I’m “her daughter” when she talks about me, and when she talks to me, I’m “honey” or I’m not addressed at all before asking something or looking for me. Wow! It very well could be that she hasn’t known my name for more than three months. We've gone through a few moments at times when she wasn't sure who I am. I've already mentioned those times. Strange, but I think I accepted the fact that she would someday not know me at all more than I accepted her not remembering my name. The two just seem to go together, but I never imagined she’d remember who I am and forget my name. Then again, she can’t understand how my daughter is her granddaughter, so I don’t think I want to ask if she understands what a daughter is. LOL

After realizing Mom didn’t know my name, the whole darn following week just kept getting worse. It was all sort of depressing, actually. I did log in long enough to post a “Happy Birthday” to my dad. That was part of the depressing week. The other part was that I felt lousy. I’m not running a fever and I don’t have a cold. I just felt tired and worn out. My muscles ached more than usual and my legs and knees are killing me. Mom may have Alzheimer’s, but she can certainly pick up on my emotions no matter how hard I try to hide them. She knew I wasn’t feeling well and she kept asking me if there was anything she could do for me. I didn’t have the heart to tell her that if she would sleep all night long it would make a world of difference in my longevity.

By the end of the week, I still wasn’t feeling any better. Thursday I just curled up on the couch and slept after taking Mom to day care. Two and I watched a movie and I trudged through the day as if I were a zombie. The weather report showed an ice storm coming through and we were supposed to get hit after midnight. Two and I prepared for not having the day together on Friday.

Friday morning I got up at the usual time. I went downstairs, let Mom’s dog out and he slid off the porch and onto the sidewalk. The porch and sidewalk were solid ice. I got the salt out and sprinkled it over the porch and sidewalk and tested the gravel drive with my foot. It was like an ice rink. These pictures don't show the ice as well as I would have liked. The bushes, power lines, absolutely everything was iced over. Nothing like you guys had in the northwest and central part of the states last month, but still scary on this hill just the same.




I called the day care and they said they were open but I had to tell them that Mom wouldn’t be coming in because we couldn’t get off our hill.

I’ll drive in a foot of snow on Mom’s driveway, but there is no way I’ll drive on ice. You’ve seen pictures of my Mom’s driveway. It’s steep and winding. It’s a beautiful site when the leaves are changing colors and the sun is shining through the clouds, but there’s no way to stop on ice, unless of course you want to slide over the 50+-foot embankment and crash to the bottom. Nope. Not me. When it’s ice, I stay home—and so does Mom.

The ice didn’t thaw from the porch, the sidewalk, the drive, the power lines, and the trees until 4:00 Friday afternoon. Then everything that thawed on Friday froze overnight and left an icy mess this morning, too. I think we may get out of here on Monday morning as long as it doesn’t rain and freeze again.

Am I wishing for spring? You’re darn right I am!

Back to reading and writing my book reviews.

Oatmeal and Dogs Don’t Mix

Or at least they shouldn’t!

I’ve had my hands full this past week going through files getting everything ready to prepare taxes. I should have known better than to try to do anything remotely time consuming while Mom was still up and awake. It just goes to prove that even though you “think” you know all there is to know about the sounds of the house, walker, Mom, and the dog, there is always a sound you don’t hear or one you haven’t heard before.

I was upstairs sitting on the floor in the midst of a pile of paperwork when I heard Mom’s walker rolling along the carpet. No problem. She was heading to the kitchen most likely to get a drink of water. Correct. I heard the water running. Then, I heard her say, “I’ll let you out in a minute.” Heard the door open next and her cussing because she was having a hard time getting the dog hooked to the chain on the porch. Less than a minute later, the dog’s tags on his collar are tingling, the door closes, and he starts barking, so I know he’s back inside. The reason I know this is because her dog only barks when someone comes in the door and he barks at the door after it’s closed. Strange, I know, but he’s done this for as long as I can remember.

Next I heard this strange sound I hadn’t heard through the monitor before. I had no idea what it was so I figured I’d better go check out what was going on.

Mom was in the dining room and headed for the living room by the time I got up off the floor and made it down the steps. I asked her if she needed anything and she said no and was very proud of herself for letting the dog out to do its business.

Two Feather was on his way down to get the mail, so I headed for the bathroom before he had a chance to come back up the hill.

You’re going to love this one.

When I went into the kitchen to let Two Feather in, I noticed a powdery substance in the dog’s dish. I looked closer and realized it was oatmeal. I turned around and saw an empty package of instant oatmeal on the kitchen counter. Once again I was brought to tears from laughing. I realized the sound I’d heard earlier was Mom laying the dog’s dish on the counter and back onto the floor. She hasn’t fed her dog for the past three years so naturally it wasn’t a sound I’d heard in a long while. With Alzheimer’s we can never be certain what is on our loved one’s mind. I’m not sure if she was thinking she was feeding him or giving him a “good boy” treat for going potty, but either way, he got oatmeal. ROFL

Guess I don’t need to tell you what else I hand my hands full with for the next two days. :)

Hint: Don’t give dogs oatmeal for dinner or a treat. It cleans them out as well as it does we humans. LOL

Anyway, in between getting paperwork sorted, and cleaning up dog doo-doo, I’ve been working on getting my “to be read” pile of books down to a more reasonable level. I’ve become so far behind. I send my apologies to the authors. I may be a bit behind, but I am reading in the order received and will complete them and give each book the attention it deserves.

So, anyone who’s not interested in books, you may want to skip the next few posts. Yes, I’m at it again—book reviews!

Power Outage and No Day Care

When I pulled up to the day care this morning, there were no lights on inside. Evidently, high winds intermittently knocked down trees and power lines and the day care was within that power outage. They were on the phone calling to find out how soon power would be restored when we walked in. Their battery emergency power unit kicked in so there was heat and emergency lighting. I had second thoughts of leaving her, but figured Duquesne Light would have them up and running in no time being that they are a care facility. Well, that time didn’t come. I received a call at 9:00 requesting me to pick up Mom because Duquesne Light told them they probably wouldn’t have the power back on until 6:00 PM. The day care’s battery power died after two hours and they had no way to make breakfast or lunch and the building went dark when the emergency lights went out, so they called everyone and requested them to pick up their loved ones.

I wasn’t feeling well when I got up this morning and was looking forward to getting a few hours sleep. If I felt better, I was going to suggest that Two and I go out and do something—bowling, movie, anything to get out of the house and do something different. After I received the call to pick up Mom, I burst into tears—not because I had to pick her up, but because I realized how much I cherish my time with Two and because I realized how totally exhausted I’ve become. The way I was feeling, the last thing I wanted and needed to do was jump back into the car and drive. I needed rest—even if that rest was only to lie on the couch and relax.

It was strange walking into the building when I picked up Mom. There wasn’t the normal hum of conversation, chairs moving, and faces glancing toward the door to see who was being picked up first. The room was dark and quiet. I was filled with an uncomfortable and eerie feeling seeing only the silhouettes of all the clients huddled at the one large table in the front of the room waiting for their loved one’s to show up. The usual smiles were replaced with worried lines and wonder. I could hear one of the caregivers reassure a client that their loved one would be there soon and s/he wouldn’t be stuck there in the dark. I could only imagine how strange and frightening the stillness and darkness felt to them.

Naturally any change in our loved one’s routine muddles their thoughts, so when Mom walked in the house she wasn’t sure where she was; yet she headed straight for the bedroom to change clothes because that is normally what she does. I guided her away from the bedroom and into the living room to sit in her chair explaining that it was only 10:00 AM and we had the whole day ahead of us.

And indeed we did! My head was throbbing, my stomach and chest felt as if someone had beaten me with a baseball bat, my legs felt like rubber, and Mom was all ready to go to day care. She didn’t remember that she had been there and sent home because the electric was out, so we went through the “what day is this?” and “do I go to club tomorrow?” questions all day. Each time, I explained that she was at club for a few hours, but the power was out, so they sent everyone home, and she would go back tomorrow.

Mom knew I wasn’t feeling well, so after lunch she sat in her chair in the living room and colored while I stretched out on the couch where she could see that I was resting and knew I was OK.

After she was in bed for the evening and I knew she was sleeping, I went upstairs and fell asleep across the bed and hence a later post. Three hours rest and I’m going back for more. Night all...

Just Another AD Sunday

It’s Sunday! Just another AD Sunday on our little mountain. Though I repeated that today is Sunday numerous times, as I knew I would, and was able to tell Mom that she goes to “club” tomorrow, she wasn’t anything like she was yesterday. Today, she talked all day about her mom and dad and my dad. She told me stories that I’d heard years ago and I sat listening to her tell them as if it were the first time I’d heard them.

The last time I heard her tell those types of stories was five or six years ago. I was amazed at how she was able to recall the detail from those stories. If I didn’t know she had Alzheimer’s I certainly wouldn’t suspect it from her recall today. Her trip down memory lane was as spot on as the first time I’d heard the tales when I was a child.

I’m always amazed at how Alzheimer’s plays with our loved one’s mind. One day or moment it allows shards of light from the past, and another day or moment it steals every memory they have. It’s truly a mind-boggling puzzle to we caregivers never knowing what may or may not be in or on their minds. It’s scary. I can only imagine how it must feel for them.

The more I thought about it, the more I wondered if I may have short circuited those plaques and tangles in her brain with the short stories I read to her yesterday. She may not have recalled anything of what I was reading, but I wondered if it triggered her to remember her childhood and earlier years. I think it did because she hasn’t talked about her mom and dad in several years.

It was good feeling that I may have triggered some fond memories for her from her past in a round about way. I never knew her mom; she died before I was even thought of, but I’d always felt like I knew her from the stories my mom told me about her. Mom talked about when she first started dating Dad, and I had to button my lip to keep from finishing the story. I knew exactly what she’d told me before; I knew the story by heart, and today the story came out exactly as she once told it. Today, as she used to before, Mom spoke of her mother with such admiration. She started to tear up as she spoke of her and said, “She was such a lady.”

Mom said she wished I would have had the chance to know her mother and I said I wished I had, too. Then I said, “Mom, if she was half the lady you are, then I guess I know her through you.” Mom smiled and then laughed a long, hard belly laugh and said, “I’m not near the lady she was. I don’t hold a candle to her.”

“That’s funny,” I said. “I feel the same way. I’m not near the lady you are and I’ll never hold a candle to you.”

Mom got up out of her chair, pushed her walker over to me, hugged me, and kissed me on the cheek.

“You are my candle,” she said.

How do you respond to a compliment like that other than to say, “Thank you, Mom! I love you.”



*** I would have ended this post with that wonderful ending, but…

This little candle’s flame is nearly flickering out with all the imaginary visits from Mr. N. lately. Four times since 7:00 I’ve had to go downstairs and guide Mom back to bed after her thinking Mr. N. was in the living room. I asked Mom what she would do if Mr. N. were here? This is the part where I think I needed the walker to hold me up and keep my balance. She said, “I’d bring him back here in my room and take him to bed with me.”

Oh boy! Am I going to have fun tonight! ROFL This is getting to be a bit awkward.

As I explained to her that Mr. N. was not in the house and she should get some sleep, she looked at me strangely. Before I had the covers pulled up and tucked her in, she asked, “Who’s this Mr. N. guy you’re talking about?”

I burst out laughing and she laughed, too, as I said, “We’ll talk about it tomorrow, Mom. Let’s get some sleep.”



Here’s hoping. :D


PS. Oh, yes, I can't go without mentioning my mom's and my neighbor turned 102 today!
Happy Birthday Mrs. E.

New Year's Eve

The last day of 2007, New Year’s Eve, was a quiet one. I took Mom to day care for their New Year’s Eve party and Two and I went to Wal-Mart to buy a few movies to add to our collection. Stacey called to wish me a Happy New Year because she was having company for New Year’s Eve and she knew I was, too.

I picked up Mom at the usual time, brought her home, made dinner, and got her ready for bed. I learned a long time ago that it’s always easier to get her ready for bed before dinner because she’s always exhausted and less lucid by the time she finishes eating.

Mom received a piece of mail and I had her open it before dinner. When she looked at the envelope, she asked, “Who’s Sheila?” I said, “Ray’s wife.” “Oh,” she said. “Why’s she sending me something?” Mom asked. “I don’t know, Mom. Open it and see what it is,” I said. Mom opened it to find a picture with a post-it note on it. She couldn’t read it and asked me to read it to her. So I did. When she looked at the picture she asked, “Who are these people?” I told her the people in the picture were her grandson, his wife and their two daughters. Mom was seated in the middle of them. She recognized herself. “When was this taken?” Mom asked. “That was taken at Ray’s house when you went up there on Christmas,” I said. “I went there for Christmas?” Mom asked. “Yes, Mom. You went there for Christmas." “I don’t remember,” she said, as she put the picture on the table. She glanced at the picture several times while eating and I could tell by the wrinkles in her forehead that she was still trying to figure out when she’d been there and trying to figure out how the people in the picture were related to her. I tried to explain that Ray’s son is her grandson and Toby’s kids were her great grandchildren, but she didn’t comprehend the relationship at all. She just said, “If you say so.” She’s not able to comprehend how this all relates to her anymore. It is so, so sad. Even sadder is that she didn’t realize Christmas was here and gone.

During dinner I could tell she’d had a busy day. The lines on her face were more prominent and her eyelids were drooping. She was exhausted and as usual wanted to go to bed shortly after dinner. She was snoring her loud nasal snore within 15 minutes of being in bed.

Two came down to spend New Year’s Eve with me and spend the night. It was one of five times he’s stayed in the three years I’ve lived with Mom. Three were on New Year’s Eves and two were because Mom asked him to stay because she was afraid and wanted a man in the house.

We watched one of the movies we bought earlier in the day. Yeah, I know, on New Year’s Eve, it’s sort of odd to watch Halloween, but it was something to watch and we enjoyed it. Angel called to wish me Happy New Year and said she and Tim were staying home for the evening and watching Shrek 2.

Two and I snacked on a meat and cheese tray his dad brought us on Chritmas. It was delicious. The movie ended at 11:00 and I turned on the news to watch it and then planned to watch the ball drop at midnight. Two fell asleep during the news and I watched the countdown for the New Year. He woke up long enough to look at the TV, wish me Happy New Year, kiss me, and went back to sleep. LOL All in all, New Year’s Eve was a nice day and evening.