Home

Here it is Tuesday night. The weekend brought deeper decline with Mom's inability to deal with the symptoms of the disease, and even with the extra help from my sister and our friend Chris, today we came to the point of going with the suggestion from our primary nurse Corrin to admit Mom into the hospice house provided by the agency. The main reason was for more acute regulation and stabilization of Mom's medications in order to moderate the erratic and exhausting behaviors culminating from the disease, and the secondary reason was to provide much needed respite for Dad, and me.

While I struggle with deep feelings of guilt and sadness and grief, I believe that, at this point, it was an action-based decision that needed to be stood behind in this stage of the journey. Our Hospice agency provides this amazing facility, and many of the patients admitted, we found out today, are on a similar path. People are admitted from home, after care givers have given all their all and become depleted. Thankfully, guidance has been given from this thoughtful team and we have followed, because we have gotten very close to the end of our coping rope.

This is all coming straight from my heart - I don't edit these posts (except for spelling and accuracy, and even there, I miss a lot, too), and though Dad and I work close together and share a lot of opinions in this journey, these posts are from my perspective. I am feeling emotional tonight, the echoes of Mom's plaintive wails still fresh in my head. I knew this would not be easy, but to really live through it is much more agonizing than I could have ever predicted.

However, this is about Mom, and right now, I know she is in good hands.

She will be there from one to three weeks, as the doctor evaluates and readjusts her medications. Mom was very cool and calm, considering, all day, right through the ambulance ride, the check in, the waiting in her new room, and even through the nearly two hour consultation with Dr. A. Normally, she would have been tweaking out as we talked about her in her ear shot, but today, she rested and snoozed in the comfy recliner in her room as we three discussed all kinds of things in her presence.

May 3, 2011

Dr. A. has decided to take her off the two "Alzheimer's drugs," Aricept and Namenda, as well as her high blood pressure/hyper tension drug. He will, first, increase the Haloperidol up to three mgs. a day. It is in line with simply treating the symptoms, not trying to "cure" the disease, I think (in a simple way of explaining, not that I really understand.) If there is no hopeful results from that, he may try giving her the old stand by anti-depressant drug Thorazine (too tired to check spelling.)

The team will try to regulate her so that she can become more manageable at home, keeping in mind that a residential facility in the near future may not be such a horrible evil thing, based on the difficulty of the disease, but by no means was he telling us what to do either way. Only that we also have to keep in mind the financial side of the puzzle. We have to try and get out of this Medicade (or is it Medicare? I always get them mixed up) as much as we can. All of this is covered, but our window of opportunity is limited. Gulp.

Mom was calm until our meeting with the doctor ended, and it was time for us to go and get our respite. That was when Mom "came to" and all of my old instincts kicked in to ease her..... however, the nurses and aides there where so great, and the best thing for everyone, especially Mom, was for us to leave her. But shit, that was hard.

I cried most of the way home, sort of like the day we drove home from the vet after putting Bunky (the cat) down, because that was the best thing to do for him. This mixed feeling of relief and guilt and sadness. I came home and had a glass of wine, gathered wood and made a small campfire outside, talked to Dad two or three times on the phone (he had called the HH and they reported that she was calm again), had dinner, cried. The hospice home is an hour and a half away. We can visit or call anytime, day or night.

Tomorrow we will decide if it is best for her mental state to go for a visit or stay home. Because, after all, all she wants to do is GO HOME.

Dreams And Reality

Wednesday night Mom's disease took a strong hold on her and she was a "terror" all night. Dad had to give her a "calming pill" (Ativan) at quarter to seven. Then she had her usual Ativan with her bedtime pills at bedtime at eight. She was sleeping when Dad retired at nine forty-five, then she began to stir and moan, so he gave her a .5 mg. Haloperidol. About an hour and a half later, she was agitated again, so he gave her a third Ativan. Finally she settled into sleep.

Which made for a very groggy, sleepy lady all day yesterday. By the time I arrived, she had risen, taken her pills with some juice, had a small b.m., and was working on a banana. She ate two pieces of the hard boiled egg Dad had prepared for her, then it was to the couch for a long morning slumber.

When the HH aid, Michelle, came around eleven, Mom pulled out of her groggy sleep enough for a little sponge bath and cleaning up, and she even spoke pleasantly with the aide and smiled a little, too. Then, it was back to the couch. At lunch time, Dad snapped her out of her sleep for a second with a slice of bacon.

Later, she began to stir, and I was able to get her up a couple of times for some wobbly walks around. When Nurse Corrin arrived at about three-fifteen, Mom stayed fairly alert for a while in the chair, answering questions and listening to us discuss the last twenty-four hours. She had eaten a couple of crackers with peanut butter and a scone and a couple of glasses of Ensure just before Nurse C. arrived.

At one point, Mom broke into our discussion and wanted to share a dream she remembered from the bad night before. Corrin encouraged her to tell us about it, and asked if there was anyone she knew who appeared in the dream. Mom described something like this: that a whole bunch of people came to the house, mostly strangers, or "types," and Mom was stressed because she was supposed to run a lecture or a panel of sorts. When asked, there was only one person she recognized in the dream, and that was the minister who's memorial service Dad had attended last Saturday. Mom had known him, too. Corrin asked what Dad could do to make her feel better when she awoke from a scary dream like that. Mom's reply? "He could help me line up the chairs."

Dad realized that he should try harder to make Mom feel more secure if she wakes up from a scary or stressful dream like that.

We've been encouraged to continue keeping notes and writing down anything significant (or not) so that perhaps we can find patterns that trigger the agitation days and nights. I left a little after four in the afternoon, with Mom calm, and told Dad to promise to call later in the evening if Mom was too much and I would come over and stay the night. But he never called, and this morning he sent out the email report that she slept like "a baby" all through the night.

Today, some of her gal pals are visiting at ten, and Dad is leaving at ten fifteen for a day down in the city. I'm heading over soon. At least the sun is shining, and it's Friday, and tomorrow we have extra help with the arrival of my sister for an over night visit.

April 29, 2011

Poor Mom. It's amazing to see how she snaps in and out of her "real" self and the personality created by her damaged brain.

Crazy Day

It's late, I should be going to bed.

She was so agitated, all day, and into the night, too, according to an email I just received from Dad.

I nearly lost my mind with impatience today, and poor Dad did, too. This job as caregiver is so damn frustrating and hard sometimes. I, at least, have relief, I can walk away at some point, come home, try to forget. Dad can not. It's exhausting.

Facing Fears

Yesterday, Mom was very groggy in the morning hours. Dad had had to give her one extra Haldol and later, one extra Ativan, in order to get her to settle in and sleep all night.

A home health worker came at around eleven-thirty and gave Mom a little sponge bath and change. Mom skipped lunch all together, opting for more sleep. I read a lot to her, though I'm not sure how much she really heard.

The hospital bed arrived around twelve-thirty, and the man very quickly and efficiently set it up and showed us how it works. An early email report from Dad today reports that Mom slept fairly well in it last night (Friday night), and he had no need to give her extra medications.

A little after one-thirty, I think it was, the sun was beaming and warm, and I was able to convince Mom to go sit outside on the side porch off their bedroom. Just as we settled down, I saw our next appointment drive up. Lissa is a chaplain who works on the team at the agency, and she joined the three of us outside on the porch for awhile, and explained her part of the network of supporters.

After about twenty minutes, we went back inside and Lissa sat close with Mom and asked her if she was afraid of dying. Mom began to cry and said yes, that she didn't want to not go on living. It was heartbreaking to see Mom express herself so, but it was really good that Lissa broke the ice a little. She got Mom to "face" the fear and Mom yelled out the big scary word DEATH. Then she became very upset and asked to be helped to stand up. Dad got her up and walked around with her, giving Lissa a chance to ask me about a few things. Then she mentioned that if I got a chance, to ask Mom if she was afraid of dying or afraid of being dead. I said I suspected it was the former, but I said I would ask her if the opportunity came up.

Lissa left, leaving us her phone number so that we could call her any time to make an appointment to talk, and promised to call next week to check in, either way. Then Dad went down town, and Mom was calm again on the couch. I continued to read aloud from Little Women (it's one long book.) When Dad came back, it was my turn to go down town. Back home, I went back over to Mom and Dad's at five.

I had purchased an Easter Lilly and brought it over, and Mom enjoyed that. Dad had to run back down town to get some pills (they weren't ready earlier), and so I stayed with Mom for another thirty-five minutes or so. Mom asked me how I liked "the woman that came earlier today." I said I liked her.. then we were able to talk some more, and I was able to ask Mom the question, and she answered as I thought she might. That allowed me to assure her that, if she should pass away before any of us, we would all be very sad but okay, as she has surely left her mark on all of us, and she would still be alive in our hearts forever. She seemed to hear that, and she did not get upset again.

Well, a little later she did, but that was just the usual old sundowners cropping up.. but I got her up, offered her a glass of wine, and before we knew, she was calm again, in her chair, watching the news and sipping on her wine. I was happy to have Dad come home to that scene.

I left while the getting was good then. Another emotional day to mull over.

Scrambled Emotions

Yesterday was a tough day for all three of us. Mom, she's, I think, pissed that she's dying, or maybe still thinks she can get out of this mess, and all the "extra attention" is getting on her nerves. Dad, struggling himself with this mortality stuff and trying to squeeze the most out of his life, which is really hard to do when you're not getting enough sleep. Me, burning out. All day over there, reading aloud, worrying about her every move, not living my own life, really. In the afternoon, when she starts up, "home, home, home, home..." I lost it, tears streaming down my face, the look of desperation on her face so heartbreaking. I made Dad take her out for a drive around the "block," just to get her out of the house for a few minutes. It seemed to help.

We were expecting the hospital bed yesterday afternoon, and it never came. We had already stored the twin bed upstairs under the eaves, and so by six o'clock, after a phone call or two with the agency, it was clear they were not delivering the bed and so we had to bring the twin mattress, box spring and frames back down the stairs, and make the bed again for Mom. It didn't take too much time or effort, but added up with the whole stress of the day, the situation, it was really aggravating. We should get the bed today.

Mom had a visit from Michelle in the morning, then from our Nurse Corrin at one in the afternoon. We discussed more sleep management action plans, and I think Dad feels even more support in that area. Nurse Corrin stressed how vital it is for Dad to get good sleep, because he is Mom's primary care giver.

This Saturday and Saturday night we should have a bit of respite with my brother and SIL, and Sunday my gig has been cancelled. I'll have my gig on Saturday night.. I think I need to get away for a minute.

Today, we meet with a chaplain provided by the agency.

Email Morning Report From Dad

I got her into bed at 10 of 8pm, kind of early but she was dozing off in front of the TV.  As usual, I had given her her five pills: namenda, aricept, remeron, aspirin, and ativan.  The other ablutions are using the toilet and brushing the teeth (she brushes but not too efficiently; the home health aids, incl. Maria, do this for her).  

At about 10:05pm I heard the moaning or toning.  I had been in bed for about a half hour.   I found her kneeling on the floor beside her bed.   So I lifted her up, got her into bed somehow, covered her, and went back to bed myself.   Would you believe the toning (or moaning) suddenly stopped?  Yes, it did!

But about 20 of 11pm, the musical tone started again.  There she was with the covers off and half out of bed.   So I got her the rest of the way up and walked her slowly to the toilet where with difficulty I got her seated.   She did a little wee-wee, and when I got her up from the toilet she said "pills".  So I asked her, "Do you want a calming pill?"   She said, "Yes", so I gave her a 0.5mg Haldol instead of an Ativan, something recommended by Dr. N.  This means she had 1.5mg of Haldol yesterday.   She is still asleep now and never moaned again after getting the Haldol.

I got up a lilltle before 6am, unable to sleep through no fault of the Mom's.  But that's me.  

Friday

Yesterday, Mom was pretty groggy in the morning. But she ate a decent sized breakfast and lunch. We had a visit from Jackie the home health aid, who gave her a quick sponge bath and pampering. During lunch, we had a delivery of a portable commode, which we have placed over their toilet. She's seemed to learn how to use the handrails, though she's not totally happy about it.

Just as I was about to leave for a break at home at two in the afternoon, I saw their friend Nancy drive up. We had forgotten she had arranged for a short afternoon visit. I had promised Mom that she had the rest of the day free... oops. Nancy stayed for about an hour, and later Dad told me that after a little "chatting" with Nancy, Mom got tired and began to moan, so Nancy left.

Mom's sundowners wasn't too too bad while I was there, until about four-thirty. Dad emailed me this morning and reported that she slept fairly well last night, after one false start at bed time. He found the remains of a pill in a little drinking glass this morning, assuming it might have been part of a Haldol.

The extra Haldol dosage seems to be keeping her a little less confused.. She seems to have a sense about what is going on, to an extent. She's heard the word "hospice" enough times. She's been very dependent on me lately.

Dad is being very patient and gentle with her. Tomorrow he has church then a concert from two until a little after three. Chris has volunteered to come at noon and stay with Mom until Dad gets home, probably around four. I hope it goes well.. I missed my gig last Sunday, so I hope to get to it this Sunday. However, if need be, I can skip it again.

I'm having trouble getting my worries out of my head at sleep time. Dreams, imagery. Worries and concerns. Mulling over what else I can possibly to do to make this transition more comfortable for Mom and Dad, and prepare for the inevitable. Not that anybody knows when that is.

Care Plan, Distraction Tips

Our friend and nurse, Deb, who so kindly stayed over on Wednesday night, was still there on Thursday morning until around noon. She switched over to "working nurse" mode and facilitated the initial care plan. She did not get much sleep that night.. Mom was up and down many times.. I believe one of the last things they ended up doing was having a "glass" of wine at two in the morning! Dad slept on the single bed in the basement, though he reported that he didn't get the best night's rest either.

When I arrived late morning, Nurse Deb was just finishing up feeding Mom some apple sauce. I assisted Mom to the toilet where she did a good sized b.m. (with some effort), but I think the stool softener helped.  Then we settled her into the couch while Deb and Dad and I discussed what we'd need and the care plan.

After Deb left around eleven forty-five or so, I stuck around for a couple more hours, helping them with lunch and sitting with Mom. Mom insisted in having wine with her lunch.. At first, we refused, and she began to cry. Then I said to myself, wait a sec? Why not? I got her favorite glass out, added two ice cubes, and poured a quarter cup of the white wine in it. After all the fuss, she didn't really want to drink it anyway. It's just the act of doing it calms her down.

I left for about forty-five minutes around two. When I went back, they were sleeping upright in the little couch together. Dozing like two little kittens. I waited around, but they didn't wake, so I went back home again. At a little after four in the afternoon, they were up. Mom was showing signs of her usual confusion, but I do think the double dose of the Haldol is making it a little more tolerable.

She was laying comfortably on the couch. The phone rings. Dad speaks to the person (it was Nurse Deb this time to let Dad know about a woman who lives in our town who could come for short respites), he hangs up, Mom asks who it was. Dad goes into detail. Mom gets upset, begins crying and moaning. I look at Dad and say "hush," I get her up, walk her around. She forgets about it. I have her help put the dishes away. I've noticed that walking and counting helps. Just counting to any number. Doesn't matter. It's the repetition, something she can grab onto.

She's back on the couch again. The phone rings again. A home health care worker, setting up a visit for today. Again, who is that? Is she coming today? Tomorrow? OH GOD!

But she soon forgets, she calms down. I kiss her goodnight, hope for the best.

Dad calls me at nine last night. He had a good feeling about the night. He thinks she'll sleep all night through, or mostly, anyway. I haven't heard yet how it's going.

It's strange now, I'm in a daze kind of. Just have to keep the action going. Keep moving.

** Just got an email from Dad and he reports that Mom slept solid all night through. He got a good night's rest, too. Not me, though. My mind didn't ever fully shut down much.. oh well.

Sleepless Nights, Confusing Days

Saturday my sister came up for an overnight, and later my brother stopped by after skiing. My sister went with Mom and Dad to my Aunt's house down the road for dinner. Sis reported back to me later that Mom was very difficult the whole time. Mom's "sundowners" was peaking when my sister arrived at four-thirty, and apparently, it continued on through the whole night. Dad got very little sleep that night as Mom rose from bed several times, wandering around the living room.

Dad got to church and I went next door at about eleven-thirty on Sunday morning to see how it was going. Sis was a bit overwhelmed - Mom was still undressed and sleeping on the couch. We got her up and dressed and fed her an egg and juice and Ensure and a little fruit. Eventually, she ended up back on the couch. Hearing of the bad night before, I decided to stay home from my gig that afternoon so that I could assist Dad, knowing he was exhausted. He was grateful for that. I stayed until about six, then went back over from seven until eight-thirty, after we put her to bed. That night, she stayed in bed and Dad got to catch up on a little sleep.

Monday I went over at one in the afternoon, after I did my down town errands. Mom was okay for a while, dozing in her usual spot, and I read to her from "Little Women" as Dad ran off to do his errands. But then around two in the afternoon, she started up again.. restless, wanting to go home, moving from couch to chair to bed, moaning. She settled down a little when Dad got back around three-thirty, but that didn't last too long, even with a short jaunt outside, up and down the driveway a couple of times. At pill time, she was still agitated, but eventually, she settled back down, and I, somewhat reluctantly, left around four-thirty. I did feel guilty, but I kept my fingers crossed that she wouldn't be too much trouble the rest of the night.

April 11, 2011

April 11, 2011

Naturally, this morning at eight I received an email from Dad saying that she was, once again, up and down all night. He had a tough time getting her to settle into bed.. and once again, lost a lot of sleep.

I'm about to head over there now at eleven and try and keep her up and moving as much as possible so that maybe she'll be more apt to sleep through out the night tonight. I know I'm feeling like pulling my hair out, so I can only imagine how tired and frustrated Dad is.

Hopefully today or tonight we'll get a call from the evaluating nurse for an appointment on Wednesday to see if she'll qualify for long term hospice help. This would, in theory, I hope, provide more assistance. Wednesday night, their friend Debra (the hospice nurse who works for the agency servicing us now) has committed to an overnight (as a friend, "off the clock," God bless her!) so that Dad can get a full night's rest in another bed. We'll see how that works out!

Home

Yesterday I got over early, and once Mom was "up" and dressed, I told Dad to take off for a while and do what he had to do. I read some to Mom, got her up and outside a couple of times, fed her what foods I could get her to eat, and kept encouraging her to drink the high calorie drinks.

April 8, 2011

She has been more confused and whiney than ever. This is especially true by the late afternoon. After Dad got home in the mid afternoon, I ran down town to bank and thought I'd stop on the way back and pick up a shrimp cocktail. I had had some success with her eating appetizers the day before - making a big deal about it with her watered down wine, so I thought she'd enjoy some shrimps. And she did! She ate about six of them, plus a couple of crackers with spreadable cheese.

However, her confusion is devastating. Before "cocktail hour," she and I were sitting in front of the tube, and an ad for chocolate came on. This made her want a square of chocolate, so I got up and brought her one. She took a bite of it and said, "Here," and pointed to the television with the half-eaten piece in her hand. I replied, "You mean me? I had a bite, I'm all set, thanks." And she said, "No, for the girl!" "What girl, Mom?" "The girl in the t.v.!"

Well, I told her we couldn't give it to the girl in the t.v. because, well, she was in the t.v., and then I added, plus, she just ate a square, so she was all set, too. "Oh."

At another point, when she began to get fidgety in her chair, I asked her if she wanted.. oh, I don't, something like, me to turn on the television. "No!" she said, "I've got work to do!"

Sometimes, I'll try and distract her by having her "help" me with small tasks. They say this is helpful, and I do find it works, though the limited use of her arm still makes it frustrating for her.

The worst part is her confusion about "home." This concept of home, what does it mean to her? I still think it's a cry out to "get her out of her own head." Home means being normal again. And it hurts to not be able to get her back to that.

She cries out for Dad a lot, too, even if he's not there. I have to remind her that he's either out or downstairs or taking a walk or on the phone or in the bathroom taking a leak (like he just said to her a minute earlier.)

Our patience is tested constantly. Our hearts are heavy with her agony and our minds our cluttered with all of the things we are encouraged to do for Mom's comfort and health. Their are small moments of lightness, when her confusion does make her say something funny, or when she does have a tiny moment of clarity. She still has razor sharp hearing, and she does respond well to gentle touch. Just holding her hand or caressing her head or neck is soothing to her.

But the painful reality is that it is so frustrating to be unable to take away her confusion, discomfort and fear.

Another Day With Mom

Yesterday (Tuesday) morning, I went over a little before ten, and Mom was still sleeping in bed. Dad told me that she had awoken a little after midnight the night before, and was twitching a lot and having a hard time falling back asleep. He asked her if she'd like to take some calming pills (Ativan), and she agreed to that. So, he gave her two, and it did the trick. Naturally, it carried over to the morning, and when we roused her from her slumber, she was very groggy, wobbly and dry-mouthed.

I helped her to the toilet and put on her socks, pajama bottoms and a bathrobe, then helped her get to her chair. She drank a whole glass of cranberry juice and took her two pills, nibbled on some banana and sipped on some Ensure. She slowly came out of her fog, and Dad went out to run an important errand, and pick up a few things at the store.

While he was gone, I played manicurist, and trimmed and filed all of her fingernails. She was very good during this, and seemed to enjoy it. I finished it off with some moisturizer, and then I took a damp cloth and wiped the "sleepies" out of her eyes and applied moisturizer to her face. Then I took a damp comb and ran it through her hair, and just for fun, I put a pale yellow bandanna over her head, peasant style. It complimented her lilac bathrobe. We just let her stay in her pajamas and bathrobe all day. Sometimes it's too difficult for Dad to get her sweaters on.

We've noticed that when we give her a Tylenol pill, which is fairly large, she often ends up chewing it, which leaves a bitter taste in her mouth. I suggested to Dad that he try and find a liquid version or a children's Tylenol, and he came home with a bottle of adult strength liquid version. We didn't end up using it yesterday, but I'm glad we have it on hand now.

I whipped up a quick lunch of organic black bean soup (canned) and a small grill cheese sandwich and grapes, and when Mom was done, I settled her back in her chair. As I was cleaning up the dishes, Dad and I were talking in the kitchen. I kept checking on Mom while this was going on ("eyes in the back of my head" syndrome), then I'd go back to cleaning. Then I heard her grunt, and I looked out to see her up, but half-fallen on the back of the chair. "Hang on, Mom!" I called to her, and managed to get over there and support her before she fell completely. Oy, scary. She said she was okay. She said she had wanted to come into the kitchen to hear what we were talking about (a wee bit paranoid). We fussed over her, then helped her over to the couch and settled her in.

I left for an hour, then went back for the rest of the afternoon, until about five. Towards the later afternoon, her confusion set in, so we kept allowing her to get up, move around a little, sit or lie in a new place, until it wore off again (after her four o'clock Haldol pill), and she settled back down on the couch during the Oprah show.

Today, the great Maria is bathing her and giving her extra loving attention. At least the sun is shining, unlike the last two days of overcast and rain, although it's still too windy and cold to take her out for a walk. I think the next two days are going to be warmer.. Maybe we'll take her out for a little drive later.

Sunday Afternoon In Early April

Another short post. Mom has been sleeping a lot, eating little, but still drinking fluids, walking a little, and in the afternoons, mostly, still has her wit.

Thursday a friend of theirs from the church, who just also happens to be a professional hospice nurse and works for the very agency that has been giving us interem help, offered to give Dad and me a break and stayed with Mom from ten in the morning until nearly five in the afternoon. Amazing, and she was happy to do it. During that time, I was able to learn more about how hospice (long term) works, and meanwhile, Dad visited a nursing home facility in the town where their doctor and their church is, and learned more about that. He stressed that they did not pressure him to admit her, in fact, they gave him a lot of information on in-home, long term hospice care, too.

This is where we are at right now.. sort of waiting.. and then we need to get an evaluation as well as the okay from the doctor to see if we can qualify for this hospice service. I'd like to keep Mom at home as long as possible, though it's taking a toll on Dad.

Today, another friend, Chris, came at noon. She is a ball of sunshine and good vibes, she brought a meal of rice and chicken, and Mom is in good hands while Dad and I are away.

As crappy as it all is, things could be a lot worse.

Random Observations

The pattern the last few days, from my perspective, seems to be: Mom rises, has her pills and juice and nibbles on some breakfast. Dozes in chair most of the morning. Has lunch. Dozes some more. We try and get her to participate in little activities (a walk, some exercises, yesterday we took her for a little drive in the car), then more dozing, then at four she takes her pill, then she becomes agitated and confused for a while. This is when I usually go home.

March 28, 2011

Dad has been amazing. We still need to work on creative food ideas. Somebody needs to write a recipe book for people who are caregivers of people with A.D. Don't look at me, I have a hard enough time coming up with ideas for my own meals.

When Mom gets agitated (which she was very much yesterday, she was depressed and snappy), I believe it boils down to this: she's pissed that she can't communicate or do anything, and she's pissed that she is suffering from this disease.

And I don't blame her one bit.

Short Entry

I didn't spend a whole lot of time with Mom over the weekend.

Dad's been writing down journal-esque entries in the spiral bound notebook I brought over... jotting down random things like what has happened over night with sleep (or lack there of for him) and trips to the bathroom, as well as what Mom may or may not have eaten.

From what I can see, Mom is back to a "baseline" of sorts, where she can walk fairly well (though I still tend to aid her, as she can be wobbly), her confusion is lessened, and she eats sporadically. Two things she does do a lot of is drink fluids and sleep. Yesterday, she slept throughout most of the day, while snow fell all afternoon. Finally, I got her up and had her walk around the house a bunch of times.

Yesterday, we had a short visit from a home health aid, Linda, and today we should see Nurse M.

I wasn't feeling well yesterday.

Better Today

Mom was better today.. Turns out, Dad informed me this morning, that she ended up sleeping on one of the couches in the living room all night. She called for him at six-thirty in the morning, and he helped her into their bed then, where she slept some more until about nine-thirty, I think.

When I got there, she was dozing in her chair, having just had her juice, pills, Ensure, and a banana half, and later, I helped her eat an entire hard boiled egg and drink a glass of orange juice. We were expecting visitors today, but everyone showed up later than expected and our nurse M. ended up rescheduling for Monday. I took off the bandage on her ankle with the pressure wound and let it air for a few hours, then when the P.T. Brian arrived, I applied a simple band aid, her socks and sneakers, and we three went outside for three loops up and down the driveway in the windy but warm late winter air. Then we sat her down on one of the chairs on the front porch in the sunshine, and Brian had her do some leg exercises. After a good half an hour in the sunshine, we went back in, and he had Mom show him how she used the bed bar. Then he let her rest, promising to call next week.

After another forty-five minutes -and by this time, Mom and Dad had already eaten their "dinner" lunch of salmon, rice and green beans - the home health aid Linda showed up and gave Mom a light sponge bath, moisturizer and a fresh shirt. It was a short visit as Mom was tired from her "work out," and we let her settle back down, up right, on the couch with her feet up. Dad had retired to the basement for awhile, and I read aloud from the Cuban travels book.

Four o'clock came, and Dad took his pills and we gave Mom her Haloperidol pill. She was less confused today, and even asked us if it was just the one pill she was to swallow. One more bathroom break later, I settled her back up right onto the couch and went home.

On my walk back, I saw my brother's car at the top of our driveway. He's up skiing with friends and is staying over night with us. He zipped over to spend some time with Mom, and I think it's good for everyone to have more visitors, as tired as Dad is these days.

Another Bad Day

So, this was what they call "a bad day" for Mom. When I got over there at nine forty-five in the morning, she was still in bed, and Dad was rushing around trying to get his stuff together for another trip down town for an eye appointment and other errands. He got her out of bed, then I took over from there. Before I joined her in the bathroom, though, I read some notes Dad had wrote down in the notebook, both last night and early this morning.

Last night, she had moments of restlessness, then she ate fairly well at dinner and eventually settled down and watched television with Dad. By twenty minutes past eight, she wanted to go to bed. Around four in the morning, he was awoken by her trying to get up. He said she got up and down several times, eventually ending up on the toilet to pee. She had trouble wiping herself, and at one point, he wrote, she tried to put the toilet paper in her mouth. Back in bed, she began to babble, asking to "Go home," "Were the children okay," and even, "Where is my husband?" He finally gave in and gave her two of the Ativan pills (the mild sedatives), but they didn't seem to work, he thought.

After awhile, they fell back asleep, but naturally, it was harder for him to get back into a good sleep. Armed with this new information, I helped her at the toilet, then got her dressed. She moaned horribly about pain in one of her left toes, so once I had her settle in her chair in the living room and gave her her two morning pills and juice, I went and got a wash rag and soaked it in warm water and applied it to her toes. She said this made her feel better. I went on and made her a hard boiled egg, of which she ate three quarters of, plus most of half of a banana and a glass of Ensure. She stayed in the chair for a while with her eyes closed, listening to the music from the movie "Finnegens Wake," which was playing on Turner Classic Movies.

By this time, Dad was gone, and I just sat with Mom, eventually moving her to the couch. Around noon, the occupational therapist, Gwen, arrived, for her third visit with us, and I filled her in on the depressing events of the day. Gwen came and sat with Mom and asked her a few questions, one of them being, "Do you know where you are?" and Mom replied, "I'm home, in Maine." When I asked her that same question yesterday, she replied that she was home in Massachusetts. Go figure.

There wasn't a whole lot Gwen could do today, so I think just having her there, sitting and chatting, made it enough of an event to say something happened today. Mom's eyes were closed most of the time and she was much grumpier and short tempered then usual. Gwen reminded me that their are going to be good days and bad days, and this was one of the latter. We also managed to discuss my concern for Dad's health and sanity, like his inability to get a good night's sleep. She suggested I might consider sleeping over some night, so that Dad could sleep elsewhere in the house. I told her I had already considered that, and when I brought that up with Mom, I asked her if she thought that would be fun, and she said, "No, I don't think so."

The O.T. left, Dad came home, and I left to run some last minute errands for our planned afternoon dinner. When I got home, Dad called and admitted that he was just too tired to pack Mom up and come over here, so we agreed to pack up the meal and haul it over there. I was hoping Mom would perk up a little at the prospect of a little celebratory dinner, like she did last Saturday night with the rest of the family, but she remained kind of cranky and groggy. She did sit at the table with us, though, and ate a decent amount of the corned beef and veggies, and seemed to enjoy it. But soon enough, before any of the rest of us where finished eating, she wanted up, so I helped her up and back to her chair. She got up once or twice more as we finished eating, even coming back to her plate and eating another bite of food with her fingers, and then we cleared the dishes and I put out dessert. I had received a package in the mail yesterday with four speciality cupcakes shipped from California, with a card in the box that said "Thinking of you," from a wonderful friend and her husband up here. My friend just lost her mother to Alzheimer's Disease early last month, so her empathy for my experience is profound. I thought it appropriate to share these treats with my parents today, and they were delicious and unique.

I did the dishes and then stood in the hallway, while Mom was on the couch, and Dad began to share some day to day stuff with me. Soon enough, however, we were interrupted by Mom, who was disturbed by our conversation. So, Dad and I went and sat with her, turning off the television and quietly conversing for a few more minutes. Mom stirred then, and I helped her use the toilet. I was sitting on the bath tub in front of her, waiting for her to finish, and when she was done she said to me, "Tell the girl I'm ready now." "That's me, Mom, here we go," I replied, and helped her pull up her panties and pants. I settled her back onto the couch, and Dad said he thought he'd like to lie down on their bed for a nap, as much as he didn't want to mess up his sleep routine. Mom seemed content, so I decided to go home.

Back home, my partner and I discussed the situation some more. Mom was really confused a lot today, sometimes saying things completely out of context. At one point she said, "Come on, it's time to go." "Where?" I asked. "Next door! To our apartment!" Other times, just stuff that made no sense at all. Is today just a bad day? Will she be better tomorrow? How much longer can Dad go on without seriously jeopardizing his health? We know for a fact this is only going to get worse.

And then you begin to get pissed off about all the drugs. What's the point, you wonder, in "slowing down the disease," when it's only prolonging the confusion and suffering? How long do you try and keep them home, where they are loved and cared for, though they don't even know where they are anymore? How do you make decisions for people who can no longer make decisions for themselves?

My partner and I concluded that there simply is no "right" answer to the multi-faceted questions involved with this disease. Everybody reacts differently to all of the drugs and methods to alleviate the symptoms, and meanwhile, there is no cure and worse, the person continues to suffer a miserable existence until they die. On top of that, the care givers sacrifice and suffer, too. Have we done all we can? Is there more we could do? Who has the answers? Nobody, that's who.

Hopefully, tomorrow we'll see a brighter eyed Mom.

Communication And Eating

Yesterday it snowed all day, a warm, big fluffy flaked snow, totaling by the end of the day to nearly four inches. Dad left at ten in the morning, bound for a southeastern town an hour and a half away, check book in pocket. He was off to trade in his 2005 car and come back with a newer (2010) one. This was advise from the lawyer he met with earlier this month -  "spend your money on yourself!" No need to twist his arm. Off he went, and knowing this,  I allowed myself another forty five minutes at home while Maria was with Mom at the house.

When I arrived, Maria had Mom sitting quietly on the couch, and she was working on Mom's toenails and feet. She is so attentive. Mom's toenails were getting long. I sat with them as Maria changed the bandage on the ankle bone. Then I helped Maria strip the bed sheets on their bed and put fresh sheets on. Maria also quickly cleaned out the bath tub. She always stays later than we pay her for and does extra things. Her standards are high for such an under payed, under appreciated job!

After she left, all Mom was interested in was to lay on the couch with her eyes closed. I settled her in and let her do that as I put in a load of laundry and tidied up around the house a little. Dad called a few times through out the day to let us know where he was at in his process. When he'd call, I speak with him first, and then I'd pass the phone over to Mom, and she'd speak with him in her disjointed, overly loud speaking voice, sometimes stumbling over her words. Damn disease, taking away a person's ability to communicate.

Around one in the afternoon, I sat her down at the dining room table for a plate of brown rice and chicken, with a few heated up carrots on the side. She ate a few bites but quickly lost interest. She does love her cranberry juice though, which she has taken to calling the brown stuff. When she wants to stop, her breathing picks up and her eyes begin to wander. She starts to push the plate away from her and tries to get herself up out of the chair. She usually hasn't even finished chewing the last bite of food she had in her mouth while this is going on. I ask her to finish chewing and to swallow, then I put another bite of food on her fork and encourage her to take one more bite. Sometimes she accepts the food, but when she's done, she is done. She reels her head back and yells out, "I don't want anymore!" So, I drop it.

The rest of the afternoon, she rested on the couch. Towards the last hour or so before Dad got home around four, I read from the Cuba travel essay book. When Dad came home, we got up and went to look at the new car parked in the garage. We said that maybe tomorrow she could go for a ride in the car.

Mom is more confused, some moments are worse then others. Yesterday, when Dad got home, he took his pills at four o'clock, and we gave Mom her Haloperidol pill, too, after a two day break from it. We've started trying to keep better notes in the notebook.

I've bought some corn beef and cabbage and we plan on cooking that up today. The plan is to share that with Mom and Dad, either at our house or at theirs. We'll see how she's doing today. Dad has another appointment this morning, but hopefully, it won't be too long.

Tuesday

Yesterday I arrived about nine-thirty in the morning. Dad went off to get some stuff done, and I had a calm morning with Mom. She stayed in her chair most of the time, dozing off and on. We watched a movie and then I did some more reading aloud from the travel essays of Cuba. I made her an egg salad sandwich and she ate three or four bites, plus a few Sun Chips and a couple of carrot bites. Then I fed her a medium sized bowl of butter crunch flavored ice cream. I managed to talk her into going outside on the side porch for five minutes to sit in the early spring sunshine. Dad got home around two in the afternoon, and I took the rest of the day "off."

She's had two days off from the Haloperidol, and last night Dad called me after their dinner to say that he noticed Mom was getting antsy that afternoon, so we will start her back up on it this afternoon, probably at four, when he takes his pills.

Dad I discussed a few more things regarding the future. Not easy stuff to talk about.

Busy Weekend And A Mix Up

Okay, so I don't remember much about Friday, so it must have been fairly normal. I had a gig that night, so I left shortly after Dad returned home from his doctor's appointment and food shopping.

Saturday, my brother and my sister in law arrived around three in the afternoon, bearing gifts and wine and foods. About five, my sister arrived, and she brought fixings for an entire birthday dinner. We were celebrating my birthday (last Monday) and my sister in laws birthday, which is on the sixteenth. They all prepared some appetizers and the fantastic meal, and Mom had a lovely time. She ate well, enjoyed her glass of Riesling wine with ice cubes, and even giggled some, here and there. We ate cake and opened presents, then four of us retreated back to my house. My sister stayed over night at Mom and Dad's, and my brother and sister in law slept over at our house.

Sunday morning, brother and sister in law left early, while my older sister stayed until two in the afternoon. Dad left for church a little after nine, and I checked in next door around noon. All was calm - Mom was mostly dozing on the couch - and we were expecting a friend from church to arrive by one to stay with Mom so that Dad could attend a meeting after church. Before I left, I remembered that Mom was due for a dosage of her Halperidol at two, so I showed my sister where the pills were and she left them out so she wouldn't forget. What I forgot to do was to tell her to leave Dad a note stating that she had given Mom the pill.

This morning, Monday, I got over there by nine thirty so that Dad could run his car down to the mechanics place for an oil change, and then go down town to run some errands. When I got there, he told me that Mom was really lethargic this morning, and only ate half of a banana along with her pills and juice. When I looked at her, she did look groggy, and also pale. He left, I got Mom up and had her help me make their bed. I had her drink a whole glass of orange juice, then I settled her back down to the couch, swept up the kitchen floor and did their breakfast dishes.

When Dad got back, we discussed the weekend and the coming week a little more, and then I brought up with him if he thought we might be able to get away with giving her the Haloperidol pill at four every afternoon, so that it would be easier to remember, as he takes his pills every day at four. He agreed, and then began to tell me that he didn't give her that pill until three thirty in the afternoon on Sunday.

"Wait a minute," I interrupted him. "You gave her a pill on Sunday, too? SHIT! I had my sister give her one at two in the afternoon! I forgot to tell her to leave a note for you! Damn it!"

Needless to say, we understood now why Mom was extra groggy and pale today. She had also complained about feeling "sore all over" and that she couldn't understand why. Trying hard not to feel too guilty about this miscommunication, Dad and I agreed to give her extra slack for today, and also to skip her dose this afternoon. When the home health worker, Linda, showed up just as I was making them up a lunch/dinner, we told her about the mix up, and she advised to get a notebook to keep better track of things. Naturally, our main case worker, Nurse M., had advised us of that, as well, but we let that slip. Today, I brought one over from my house, so we will now keep better track of things.

Mom did get up, though, sit at the table, and ate a good amount of her meal. Then she agreed to let Linda freshen her up with just a little sponge bath and some other pampering. After that, we settled her back down onto the couch, Linda left, and we waited for our visit from Nurse M., who had called to say she would be a little bit late. I waited around for awhile, but then decided to leave, so I could get home to shower and go food shopping and other errands.

When I got back around four, Dad told me that Nurse M. said we could just skip the Haloperidol today, and that we could probably start back up on it tomorrow, if we thought Mom would need it. She seemed to think it wasn't too big of a deal. Phew~!

Mom got a little anxious around four thirty, wanting to start dinner, but when we said it was still a bit too early, she said she just wanted to take a nap then. No problem, Dad and I said, and settled her back into the couch and turned the Oprah show on quietly in the background. Dad and I discussed plans for the next few days, as well as plans for a meal tonight, and then I left. I'll head back over in the morning so that Dad can go back to the hospital for some blood work.

Support All Around

When I arrived yesterday morning, Maria was kneeling by Mom, who was sitting in a chair, and plucking a few hairs off her chin. Mom was all cleaned up from her bath, and the two were very quiet and peaceful. Let me just say here that I think Maria is very special. She has empathy and genuinely cares about the well fare of others, especially seniors with dementia and Alzheimer Disease. She goes above and beyond, and for that, I am inspired and grateful.

As Maria was finishing up, Dad came up and expressed his concern about Mom's lack of spunk, but Maria did not think we needed to worry. She did think, though, that we needed to bring up the rash on the front part of Mom's leg, just above the ankle, to the nurse again. Nurse M. had told us to apply Cortezone on it, which I have been doing once a day, but Maria seemed concerned that it was still not better.

After she left, Mom sat quietly for awhile, and Dad went to the post office. When he came back, he was excited to show us the giant box he received. It was the bed bar he ordered, and perfect timing, because Brian, the physical therapist who suggested we get it, was due to arrive at any moment. Dad and I took it out of the boxes, and when Brian showed up, the first thing we did with his help was strap it on the bed. Once it was on, Brian showed Mom how to use it. He then did a bunch of exercises with her. She really seems to respond well to him, and she seems to enjoy doing the little routines, counting out loud. It is really cute how she sometimes skips numbers ahead. Well, cute might be trivializing her condition, but sorry. It just is.

After the P.T. finished his exercises with Mom, he wrote up his report on his little computer, and told us that the next time he comes, he'll have a little routine and sketches to leave with us so that we can help Mom with strengthening exercises in the future. Then I left and drove down town to the little community center to attend the care-givers support group. Their were seven other women in attendance, in addition to the woman who runs the group, and almost everybody is a caregiver for somebody with Alzheimer's or dementia. The session involved a lot of sharing, a little bit of crying, and plenty of empathetic support.

I stopped at the store on the way home and picked up a few groceries for my household, as well as some cans of organic soups, bananas and a little potted spring plant for Mom and Dad, then went home to rest for a couple of hours. At five forty-five, I drove back next door and stayed with Mom so that Dad could attend his board meeting at the church. Mom was real mellow and sat in the chair while I did their dinner dishes and a few other little things, then I helped her get settled on the couch around six forty-five, and that was were she stayed until almost nine at night, when Dad got home. She slept for most of the time.

Just before Dad got home, I roused her from the couch and suggested we start getting ready for bed. I wanted to get as much done as possible before Dad got home, because I knew he was tired. However, he got home before we could begin the ritual, so I let him take over, for her sake. As I was putting on my boots, I could hear them in the bathroom, and Dad lamented, "How am I going to take this sweater off?" (It was a thick blue turtle neck sweater, but still fairly loose.) When I entered the bathroom to assist, Mom was so tired and defeated, she just started crying like a little baby. No tears, just whimpering. It was so sad. We told her it was okay, and somehow, Dad and I managed to pull the sweater off her head. I kissed her on the cheek and told her it was okay, and that I'd see them both in the morning. She stopped crying and said good night.

Dad just called, and we'll have a visit from the occupational therapist, Gwen, within the hour.