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?

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

Someone Took Over The Dance Floor

I didn’t get the presents wrapped as I planned after I logged off last night. Instead, I spent the evening, and most of the night, sitting in a chair by my mom’s bed calming her down. Apparently she was dreaming of this Mr. N., again. Not such sweet dreams this time, though. She was already to get dressed and go to “club” to fight the new lady who’s making moves on this guy. I guess this woman was dancing with Mr. N. in Mom’s dream and Mom wasn’t happy with how the whole dance went. “She shouldn’t be acting like that with him,” Mom said.

Mom’s totally forgotten that Mr. N. is married. She wouldn’t give him the time of day, other than friendly talk, if she didn’t have this mind-stealing disease Alzheimer’s. I told Mom it’s nice to have friends at club, but she can’t very well get angry at another woman when, in fact, Mr. N. shouldn’t be acting that way with either one of them because he’s married. That didn’t matter; according to Mom, the new woman is married, too. Mom has no concept of marriage anymore, either. Oh brother!

I finally got her calmed down when I said, “Mom, you’re 84, you’d look pretty silly fighting with another woman over a man.” I think some part of her “old self” snuck back into her head for a few seconds because she said, “yeah, I don’t want to make an ass of myself.” I’m not sure whether she thought she’d make an ass of herself because she was considering fighting, or because he is married. Either way, it was a long night. She was up every hour angry with this other woman who’s taking over the dance floor. On the brighter side of this whole night without sleep—she didn’t remember any of it in the morning.

It’s been a cold and blustery day. First it snowed, then it rained, then it snowed again. The ground is covered.

This morning when we ate breakfast, Mom mentioned how tired I looked and I simply said I didn’t sleep well. :) I didn’t mention anything of what went on during the night and I didn’t mention that there was a pot in the middle of the dining room floor catching water either. Yes, just one more thing to FIX. The house has a new roof, so I can’t imagine where the water is coming in. Must be a slow leak or loose flashing near the dormer. As soon as the temperature changed and it started snowing, the leak stopped and I was able to remove the pot before Mom got up. Guess we have a spot on the roof that will need fixed and a dining room ceiling that will need spackling and painted soon.

Mom colored in her coloring book for a good portion of the day. I sat in my chair near her in the living room trying to strike up a conversation. Even tried to get her to play with dominoes but she was having a difficult time with how that game goes. We ended up with tiles stretching from one end of the table to the other with no specific end. She won, though, because she was the first to use all her tiles. We colored together the rest of the afternoon until it was time for me to make dinner.

I watched the wind pick up snow and twirl it off the barn roof and blow it onto the ground. A chill went through me each time I looked out the window. As a writer, my imagination can sometimes make me literally feel the things I see. I’m looking forward to crawling under warm blankets tonight and hoping for a good night’s sleep. I hope that’s not in my writer’s imagination, too.

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.

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. :(

Therapy, Nurses, Mom's Exhausted

I woke up Mom at 9:00 yesterday morning and got her into the shower. Showers are so difficult because she fights me every time the word is mentioned. She hates water on her face. She hates water, period. She never learned to swim because she does not like water.

Showering was finished in 45 minutes, then she was dressed, ate breakfast and sitting in her chair waiting for the entourage of therapists and nurses. The first came at 10:30 just after Mom sat down. Of course there was no time for me to do anything because I had to be in the room, answering questions, filling out paperwork, listening to what the nurses said and did so I would know what I was supposed to do. The first nurse left at 11:40.

I had twenty minutes to get Mom lunch and ready for her next visitor.

The next in line was the home health respite person. She arrived at 12:05. By the time she went over everything with me concerning Mom’s needs, filled out paperwork, and explained the program, it was 1:45.

My daughter had called Monday and said she was coming to visit this weekend. They were coming in for the Steelers game and she wanted to visit Saturday since she wouldn’t be able to visit Sunday. We’d made tentative arrangements for 1:00.

She called at 12:45 but I didn’t answer the phone because I was busy with Mom’s nurses. Called her back around 2:00 and said she could visit for a little while, but I wasn’t sure how long Mom would be in a visiting mood. She was already tired and agitated from the nurses being there.

Angel came for a little while and soon realized how tired Mom was. Angel talked with Mom while I made dinner. She didn’t stay long because she understands the disease and how it affects Mom.

By 4:00 we ate, Mom was even more exhausted and she was ready to go to bed. Once again, when Mom's asleep, I’ll grab whatever sleep I can. It didn't take me long to drop off.

This morning I got Mom up and started another day. Her home health nurse was coming at 11:30.

She was here until 1:00.

The rest of the day was a fiasco!

Nightmares and No Sleep

I didn’t get any sleep at all last night. When Mom finally fell asleep, she woke up every half hour with nightmares. I asked her what her dreams were about and she told me that there were strangers in the house and they were trying to hurt her. I kept telling her that there was no one in the house but us and no one was trying to hurt her. An hour later we went through the same thing. Every thirty minutes to an hour she was screaming for me again. Each time, she said she thought there was someone in the house who was trying to hurt her or me.

Alzheimer's is horrible. Tiny things will stick in our loved one's mind, sometimes good things, sometimes bad things, but we never know what is going through their minds. It's hard to tell what caused her nightmares. It could be a simple schedule change. It could be the smallest memory that aggitates her. It could be my brother's visit. Any number of things could trigger her aggitation. Regardless of what it was, we still deal with the aftermath.

By 7:00 AM she finally fell asleep and she only slept until 10:00. She was exhausted from not sleeping much and I was exhausted from not sleeping at all.

After our morning routine of showering, dressing, and eating breakfast, she complained of being tired. I kept her busy all day to keep her awake and active. I did the laundry and had her fold the clothes and towels. I did the dishes and had her put them away. I had her coloring, working with word finds, hidden picture puzzles; I even had her looking through old magazines pulling out recipes and coupons. We tried anything and everything that would keep her busy and awake.

There was no talk of visitors or dreams. She didn’t remember either.

While I was making dinner, I had her break up lettuce for our salad. She was so exhausted by 3:00, I had to keep talking to her to keep her awake while she ate. She ate very little and wanted to go to bed by 4:00. After dinner we started our bedtime routine. It was earlier than the normal 5:00 bedtime, but there was no sense in trying to keep her up any longer. By 4:15 she was in bed and asleep within minutes.

I can always tell by the level of her snoring how exhausted she is and how much sleep I may get in between her calls for help. This evening I might get 2-3 hours before she wakes and has to use the potty chair. We’ll see. Goodnight, all. I’m grabbing the zzz’s while I can.