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?

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.

Alzheimer’s Disease Progressing—Mom in Hospital and Home Again

I know I haven’t been here for a while. Things have been hectic to say the least.

A few weeks ago Mom was able to get up out of bed and dress by herself with very little help. One morning she woke and seemed very different to me. She didn’t know what her clothes were and couldn’t figure out how to put them on when I placed them on her bed. She had no clue what to do.

Her smile was still full, she was still able to stand and walk, she had use of both arms and hands; she just seemed weak and confused. It was like she came off her plateau and dropped down suddenly.

The rest of the week she still needed help dressing, and still seemed more confused than she had been.

So here we are in another stage of this horrible disease called Alzheimer’s.

She was complaining of being dizzy when she stood up. At Adult Day Care they said she also complained of being dizzy, but also when she was sitting. Each time she complained of being dizzy, her blood pressure and blood glucose were checked and they were normal. The Day Care attendants checked them too and said the same thing.

I called her doctor, explained the situation and he told me to take her to the ER. When we got there, I insisted that a neurologist be brought in and insisted she be admitted for observation. After four hours in the ER, they finally called her doctor and she was admitted.

A CT Scan done while in the emergency room showed that she had an older Lacunar stroke. They stated that it could have happened anywhere from a week to a few years ago. They told me that there was nothing I could have done because these type strokes show little to no difference. It most likely happened in her sleep, they said.

When I’d heard this, I could pretty much pinpoint when it happened. One day she was dressing herself, when she woke up the next morning she was different as I explained before; unable to recognize her clothing, unable to dress herself, totally confused, and a little weaker.

For the next day and half I was running to the hospital, talking with doctors, neurologists, social workers, nurses, physical therapists, occupational therapists, and working out some kind of schedule to have all these people come to her house for the therapy she needed.

Her doctor suggested I place her in a skilled nursing facility for rehab in order for her to get her therapy and for me to have some respite care. I told him I would rather have her home because a facility would confuse her more. He totally understood and commended me for the decisions I was making in the best interest of my mother. He told me I was doing a wonderful job and encouraged me to continue to keep her home, in her environment. His encouragement and thoughtfullness was all I needed to give me that extra ounce of strength to continue doing what I'm doing. Caregivers don't hear much encouragement, and when one hears it from a doctor, it affirms that what we are doing is the best for our loved one.

Her doctor and the neurologist stated that she was in the severe stage of Alzheimer's. I'd already known that, but at least I now know for certain that I was correct in my thoughts of her progression and it was verified by doctors. It doesn't take much to understand the disease when you watch it's progression and you're dealing with it everyday. Even the slightest change is noticeable.

Today I brought her home from the hospital at 3:00 and we were back in our routine. Just a little slower now because she’s walking with a walker. She was once again exhausted and in bed by 4:00. I knew I needed to get all the rest I could because the team of therapists and nurses were scheduled to start tomorrow.

When she fell asleep, so did I.

Then the phone woke me up. Nevermind about that. I won’t even get into it here. It’s not worth it!

The End of My Respite Care Weekend

I slept in again this morning, which not only delayed but also put a halt to the idea Two Feather and I had for today. We thought about going to an open-air flea market in Kirwin Heights where we used to set up his Indian art. We haven’t been there for three years. It’s an early market, though, most vendors are set up at 6:00 AM and leave by 1:00 PM, so it was senseless for us to drive the 45 minutes knowing most of the vendors would be packing up to leave.

Two Feather and I spent the morning talking about how odd it felt to sit on our deck and enjoy our morning cups of coffee together as we did every morning before I moved in with Mom. We reminisced about the powwows and gatherings we had enjoyed and talked about what we might do with our time when the day comes that we’ll be together again.

That discussion didn’t last long because we both felt it was somewhat wrong to discuss a future when the alternative meant that Mom would no longer be here. Yes, we miss our life together, but neither of us would wish for the inevitable to come sooner in order for that future to happen. Our life together was and is precious but having Mom around is too.

We also talked about something that disturbed me on Saturday evening after I called to check to make sure things were running smoothly with Mom and Angel. My brother has been given specific instructions to call and arrange a time for his visits. He’s been told that if I don’t answer the phone we’re either not home or I’m busy with Mom. “Busy” could mean I’m giving her a shower, cleaning up a soiled bed, cleaning accidents on carpeting, or cleaning up Mom after an incontinent accident.

Lately, if I don’t answer the phone and call him back to his immediate satisfaction, he’s been showing up at the house unannounced. He’s found no one home and drives back to his house. I know this because he left a message saying that he stopped by and for us to call when we got back home. When he has shown up during one of the above mentioned busy times, I’ve called him when I’m finished and asked him not to just show up. He accusing me of “not letting” him see my mom. He tunes out what he doesn’t want to hear and exaggerates what he thinks he hears. His response has always been that he doesn’t have to listen to what I say, and his attitude is that he can do whatever he wants, whenever he wants, with no regard to anyone but himself.

The last thing Mom or I need is for him to push his weight around after dealing with one of the situations that I mentioned above. Each of those situations changes Mom’s mood and the mood that results from them is seldom easy to deal with. It takes her an hour or two to get over her anger of incontinence and her anger that she has to take a shower. Most Alzheimer’s patients despise getting in the shower. Any caregiver can tell you that performing daily hygiene is no easy task.

Saturday evening when I called Angel, she told me my brother “showed up” without receiving a call back. Needless to say, this put a damper on the only respite care I’ve had in more than a year. Mom isn’t comfortable with him visiting when I’m not around. I was a bit disappointed in the events that took place and unfortunately expressed that disappointed to my daughter. If I had paid a home health nurse to stay with Mom, that person wouldn’t have known my brother from a rock, and therefore would not be obligated to open the door. I did however understand that Angel was put between a rock and a hard place trying to enforce the simple request I’ve made to my brother, over and over again. She didn’t want to deal with him any more than I do. She’s heard about the outrageous nonsense I deal with from him, and sometimes it’s better to totally ignore people who just don’t get it.

Rather than cause a scene, in front of my mother, and her grandmother, she told him he could visit for a little while, but he’d have to leave soon because she was getting ready to make Mom’s lunch.

Not only did he not comply with my request of him not just showing up, but also he infringed on the time my daughter took out of her busy life (driving four hours from her home) to share with her grandmother. Both, in my opinion, were just more representations of the rudeness and lack of consideration my brother shows. It never ceases to amaze me why some people think they aren’t obligated to comply with the guidelines set forth by the caregiver for the comfort, health, and welfare of a loved one.

I returned to Mom’s house at 3:00 PM so Angel could drive the four hours and be home before dark. She didn’t leave until 4:00 due to the frustration I showed and the discussion we had over this matter. Even leaving an hour later would have put her at home before dark and before Katie’s bedtime at 8:00 PM.

When I didn’t receive a call from Angel by 9:00 to tell me she arrived home safely, I became concerned and called her cell phone. She called back about fifteen minutes later. I could hear the frustration in her voice. Some of it may have been from the conversation we had, but most of it was because she was still driving and hadn’t made it home yet. She’d gone through Pittsburgh, instead of taking the turnpike from Cranberry, and she hadn’t realized one of the Pittsburgh tunnels had been closed. It took her two hours to drive the long way around Pittsburgh to get back near the turnpike. She missed her daughter all weekend, and she missed getting home on time to put her in bed for the night. Her frustration turned to tears and I couldn’t help but feel horribly guilty that I’d taken her away from her daughter and husband for a weekend.

The conversation she and I had before she left wasn’t important now. We both agreed that things should be different with my brother, but regardless of how anything is approached with him, he puts up an automatic defense attitude that gets in the way of any conversation, especially when it comes to me.

Mom had a fairly decent weekend while Angel was there. No accidents. No messes to clean up. Angel got a small taste of what I deal with each and every day taking care of Mom. She also got a taste of what it’s like to miss her own normalcy too. She told me she doesn’t know how I do what I do, and I told her I do it because I love my mother. She reminded me that I should take more time like this so that I live long enough to enjoy a life after Mom. And I reminded her that sometimes it’s easier just to continue what I’m doing rather than deal with the added problems resulting from leaving Mom for a day or so.

It’s difficult not feeling guilty for wanting a day to spend with my significant other, or just a day to spend on my own. The repercussions that result from me being away add to the already difficult task of care giving. Two nights and one day without my presence set Mom back a few notches. All evening she asked if I was going to stay the night and she cried. She said, it was nice visiting with Angel, but she didn’t want me to be away from her again. She was afraid I wasn’t going to come back. She told me she wasn’t comfortable with my brother visiting when I wasn’t home. All evening, after she was in bed, she kept calling out to me to make sure I was still around and to make sure no one else was in the house. Each time she called out for me, I’d go downstairs and reassure her that I’m home and wasn’t leaving again and the only people in the house were us. Five hours, every twenty minutes or so, I’d repeat the same thing: go downstairs, tell her I’m here and staying, we’re the only people in the house, and I’d go back upstairs. She finally fell asleep, exhausted, around 10:00 PM.

Going away for a weekend is just not worth it to me if it’s going to affect Mom this way. I care more about her than I do myself and the anguish caused to her by me being gone for a few days does me no good either. We’ll see what tomorrow brings, but I can place bets that tomorrow I’ll be asked if I’m staying the night again. This is just one more perfect example of how changing the schedule or routine of an Alzheimer’s patient can throw them into a more confused state.

Health care workers tell caregivers to take time like this to relax and recoup some strength. The nurses at the Day Care keep telling me I need to take time for myself. They say, “It may confuse her or make her angry, but she’ll get over it. She’ll forget.” Granted I need to keep up my own health in order to take care of Mom, and respite time allows the caregiver to relax and unwind. But whether Mom forgets within a few days that I was away or not, I just don’t know if I agree that it’s worth adding to her confusion and causing her unneeded anxiety. I’d rather her feel comfortable and secure and her know that I’ll be here until her last day on this earth. She knows she can depend on me and I can’t take that security from her, ever again.

Great Trail Festival--Our Day of Respite Care

Two Feather and I never plan anything because when we do, nothing normally goes according to plans. We did have an idea for our day together, though. We were hoping to enjoy something we’ve missed for a few years—The Great Trail Festival. It’s a combination of a woodsy craft show, rendezvous, and time period encampment.


The last few times Two Feather and I attended the festival we dressed in time period clothing along with all those who set up their wares. This year we decided to enjoy the festival in street clothes rather than regalia and we thought about getting there early in the morning so we could spend the entire day perusing the makeshift shops.

Early didn’t come. It felt strange sleeping in my own bed. I can’t remember the last time I’ve had such a relaxed, comfortable, full night’s sleep. I slept so comfortably and sound, Two Feather didn’t want to wake me, so he let me sleep until 8:00. That’s late for me since I’m normally up at 6:00 every morning. By the time I drank my second cup of coffee and pried my eyes open it was 9:00.

We left at 9:30 AM and arrived at the festival at 11:00. I stopped near the entrance and took a picture of the buffalo on the hill.

As soon as we walked through the front entrance we knew there was a huge change from the years we’d been there before. There were fewer vendors, fewer attendees—fewer everything. It took only an hour and a half to walk around the entire festival, twice. The four vendors whom we were looking forward to glancing through their wares were not set up this year. It was a bit disappointing, but we still enjoyed the atmosphere and we did spend some time with our friend Dave.

We left at 12:30 and were home by 2:00 PM. So, what to do, what to do? We suddenly have all this time on our hands without having to watch a clock to be back or end our day together by a certain time, and we were at a loss as to what to do. And because we have no life other than taking care of Mom, we really have nothing new to talk about. That’s terribly sad. Even the saddest situations Two Feather will find the good and nurture it into something better. He either will give you something to think about or he’ll leave you smiling. Normally, for me, he leaves me smiling.

We’re both movie buffs, so every time we go to Wal-Mart we buy the newest release to add to our collection and watch during the winter months when there’s not much to do. Recently we bought a few movies, and there wasn’t much else to do, so he tore off the plastic wrap on the first DVD and stuck it in the player. For the next two hours he sat in his chair and I sat on the couch and watched Hills Have Eyes 2. When that movie was over, we took a short break, went outside and walked around the yard, grabbed a cold can of Coke, and went back inside to watch the Zodiac Killer.

During both movies, we glanced at each other, smiled, and returned our attention to the show. It felt strange for both of us to be doing some of the things we so much took for granted before I moved in with Mom. Sitting across from each other in our living room hasn’t been a normal site for quite some time. Sitting across from each other and smiling at each other, enjoying each others presence, and knowing I didn’t have to get up and leave gave us both a serene feeling, yet an uncomfortable feeling. We enjoyed our time together immensely but we didn’t want to get used to it; had to keep pushing the thought in the back of our minds that it would end soon and I’d be back at Mom’s house and he’d be alone in ours.

Time together like this is wonderful. It’s sort of a renewal of our commitment to each other and renewal of our energy to fulfill my commitment to Mom.