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.

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.  

Harmonious Long Day

Mom was not perkier yesterday, at least not until later in the afternoon/early evening.. Then, I wouldn't call it "perky!" She rested on the couch all morning as we switched the beds around. It went very well and smooth, and after the guys left, I spent the rest of the day finishing up the details. Mom was cool about the whole thing, and seemed to like the more opened-up feel to their bedroom. Dad has ordered the hospital bed and it will arrive here on Thursday.

We had a visit from a home health aid, Linda, at around twelve-thirty or so. I told her about what had been going on all morning, and that it was best to just let Mom rest. She was fine with that, and she assisted me move a few books upstairs. She suggested that we order a bed side table to go with the hospital bed. She thought Mom looked pretty colorless that day.

After I went home for an hour for some lunch, I went back around two, and sat with Mom while Dad went out for a walk. I read a chapter or two from "Little Women." Once in a while, she still corrects me when I pronounce a word wrong. Despite how she looks like she is fast asleep, I know she is listening.

Later, after Dad came back and they had taken their four-o'clock pills, I had a chance to finish up the details in the basement from the move. I re-arranged some of the things brought down from their bedroom, both in the guest room down there and in the area of the basement where Mom had her drawing table. On her table and in the drawers are dusty pens and unused paper, old landscape plans rolled up and forgotten, photos of dirt, bushes and plots of lands to be landscaped. I just finishing up when I heard Dad and Mom at the top of the stairs. She wanted to come down, but Dad thought she seemed a little frightened at the top of the steps, she hesitated. Left me just enough time to come up with a basket of old photos, and avoid having her go down the steps.

The basket of photos were mostly a huge collection she took during the time the house they live in was being built. From the foundation, to the framing out, to the detailing, to the painting, to the first few days with minimal furniture.. We showed her one or two, she said she didn't remember. I showed her a photo of her on a landscaping job back in 1993. She said she didn't remember. Then she got a little upset, so we stopped.

At one point she became agitated. I settled her into the couch. After two minutes, she became upset again. She didn't know why. I offered to get her up. "yes!" She hummed the word "home" over and over again. I joined her, quietly, as we walked, then at times I harmonized with her. Then she moved her hum to match my note, then we went up another note together. Then back down again. Then I'd harmonize with her again. And then, just like that, she stops and says something "perfectly normal."

Back to the couch again. At five-thirty, I kissed her good night. Dad was starting dinner. I wished them good luck and hoped they would be comfortable in their new sleeping arrangements, all was calm. At home, I started a small campfire, an activity I've found to be very relaxing. Burning wood from the fallen  branches in the woods. Back inside, I was working on some video transfers. Dinner would be ready in ten minutes. The phone rings, it's next door.

Dad hands the phone over to Mom. Mom wants me to come over. Be right there! She was still in bed, Dad trying to console her. She was crying and "toning" and her knees and arms were sticking up. "Do you want to get up? Put on your bathrobe, go in the living room?" "Yes."

April 19, 2011

So, we did that, and she calmed down. And I left about twenty minutes later, Dad cradling Mom on the couch. I could only hope for the best. It was a long, tiring day, and I was in bed earlier than usual.

It's raining today, and it's bath day.

Changes

Today, my friend and fellow musician Stephen is driving down to assist Don, Dad and I in the bed switch. We've decided, in order to get a hospital bed (provided by the hospice agency), we first need to move the two twins beds from an upstairs guest bedroom down and the queen sized master bed up in their place. With this, we hope to provide more comfort for Mom and Dad.

This will require a big change over in the way things have been.

The last three days, Mom has been very subdued. The usual afternoon "sundowning" has even seemed less brutal. Sunday afternoon, I felt comfortable leaving Mom in the loving care of Chris, who made a quiche for their supper while she was there. Chris also has an interesting theory about why Mom makes these odd humming noises, especially if we have to get her up and walk her to the bathroom. She thought it might be something called "toning" which is something she had done to help alleviate labour pains just before she gave birth. I say that that makes perfect sense. The humming, which sometimes, when I join her, turns into a sort of melody that we improvise as we go along, is a way to cope.

Monday, Mom was very very groggy and sleepy all day. Dad had had to give her a second Ativan over night, to keep her in bed and sleeping. She woke up for a while when the home health aid came to give her a little sprucing up, then back to the couch she went. Dad ran out to do errands, and I began to read from the "Little Women" book, but it wasn't long that I could tell she was really asleep.

Then the phone rang and it was the social worker from the agency, calling to try and get a first meeting in with us. I told her to come on by, and the timing worked out well. Mom stayed in the couch, half awake, half asleep, while the three of us sat at the dining room table and had a very good and eye opening discussion. One of the things I'm glad we decided was to cancel the six month follow-up appointment with the neurologist, Dr. D. I was dreading the thought of dragging Mom into the car and driving an hour there and back, just so that he could talk with her and see how much she has deteriorated. Also, now that we are officially under hospice care, we are no longer trying to "save her" life, so to speak. He may have wanted to prescribe another drug, in his dual interest in learning more about what works for this disease, as well as helping Mom to be more functional.

Just after the social worker left with a promise to come back in about two weeks, our primary hospice nurse, Corrin, showed up. She agreed that canceling the neurologist appointment was the right thing to do, so Dad went down and made the call and that was no problem. Then she checked Mom's vitals, all good, looked at Mom's healing (finally!) ankle bone and her elbow scrape. She wanted to ask Dr. N. of it was okay if Mom started using Robitussin for her extra mucus, which is making her a noisy sleeper and also cough a little bit more, but Mom heard that and flat out refused! It was funny, the old Mom rearing her head. Corrin, being a sweetie, respectfully agreed that she would not bring it up with the doctor after all.

She also spoke with the doctor about any other ideas for helping Mom to sleep through the night. She called back later in the afternoon and Dad was told that if Mom was still restless at bed time, he was allowed to give her one more .5 mg. of the Haloperidol.

Yesterday, Mom did exhibit three of the signs that the hospice agency uses to help determine if a person's body is beginning to die. Lack of appetite and food intake, sleep almost all day, and lack of interest in what is going on, or a withdrawal. Now, some days are more like this than others, and sometimes I do wonder if it especially on the days when she's had a lot of the "mild sedatives." Plus, she's on more Haloperidol, too. Maybe we've just sedated her so much that it looks like she's dying.. I sometimes wonder about that. It takes a lot for a person to die. How much fight Mom has left in her, I can't say. It's all very mysterious, and as the social worker reminded us, each journey is different.

I will be interested to see if Mom is perkier today, and how the night went, too.

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.

Bittersweet Acceptance

Yesterday, the evaluating nurse from the long-term hospice section of the agency that has been working with us came at ten-thirty in the morning. Dad and I were able to speak with her for about thirty minutes while Maria kept Mom occupied with her weekly bathing ritual, then Mom came out and the new nurse, Corinne, met Mom and checked her vitals and asked her questions. Eventually, Mom got agitated, so I walked her around a bit, then offered to help her into her bed. After a few minutes, Mom moaned again, so I helped her up and back into the living room. She really hates it when we talk about her, around her, but we had no choice. Corinne kept it short though, and promising to call later, she left within the hour.

I read to Mom for another half an hour or so while Dad ran down to the post office. Then, I split and went down town to the local monthly care-givers support group. Their were only three other participants in this meeting, as well as a different facilitator than the last two times I've been present. There was much discussion about coping, frustrations, support, nursing homes, dying. I found it helpful, only in that the other people there could relate, even the facilitator, who had lost her father the Alzheimer's last year.

I raced home after the meeting, unwound for awhile, then went back next door at five. Dad was leaving at five forty-five for his monthly board meeting at the church, and I was concerned that Mom was taxing him. Well, when I arrived, they were sitting at the dining room table, eating dinner of lobster and shrimp stuffed ravioli. Mom seemed relatively calm to me... Dad informed me that he got the call and that we had been accepted into the hospice service. I believe it was based mostly on the fact that Mom has lost more than ten percent of her body weight within the last six months, plus, well, she has Alzheimer's and they all know it doesn't get better.

Dad was told by Corinne that Doctor N. approved of us doubling the dose of the anti-psychotic drug, Haldol, up to 1 mg. a day from .5 mg. a day. Dad did give her a second dose that afternoon, and she did seem a little less nutty, though still very confused. After he left, I quickly washed up the dishes and Mom settled into the couch for awhile, but she still seemed agitated, so I finished working, turned off the television, and got down to reading aloud to her.

This always seems to soothe her, and soon she was snoring away. After another trip to the bathroom and a little walking about, we settled back into the couch, and I read some more until Debra showed up a little after seven. She had offered to come and stay over night so that Dad could sleep in another bed in the house. A SAINT!

Also, she will be on the team of nurses with our new group of providers. She and our lead nurse, Corinne, discussed the "conflict of interest" (she's a friend of Mom and Dad's), and they agreed that it was okay with them if it was okay with us. Of course, I said, no problem!

We will be offered some equipment, some of the meds will be paid for, and we should receive even more home health help, almost daily, I believe. We were told to buy some stool softener for Mom to assist in her eliminations. I'd like to get a "baby gate" for the basement stairs assembled as soon as possible. Dad told me last night that he took a shower at three in the afternoon, told her where he was, and she was settled on the couch. When he came down, Mom was in their bed, all by herself. Later, he found a blanket down on the bed in the basement, meaning she walked down and up there by herself while he was showering! Can't risk her falling.

So, that's where we stand today. Bittersweet.

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!

Waiting

I didn't get over there in time to see Maria yesterday, but I could tell she did her usual great care on Mom. When I showed up, Nurse M. was just finishing up with Mom. She began to tell me what she had been speaking about with Dad, which is the possibility of long term hospice care. She wanted to be sure that I understood the criteria, one major one being significant and drastic weight loss, and that the doctor estimates that the person has six months or less to live. There are more, but I'll spare myself writing them down here.

This was being said in front of Mom, who was in her usual position on the couch, listening but unable to really comprehend what we were saying. At last, however, she began to moan (which she has been doing more and more lately.. a moaning whimper), so I helped her up and took her away from the conversation. As we rounded the corner near the front door, she cried out to me, "I don't want to die!" and cried some more. Naturally, that made me tear up, but I told her we were planning for long term help for her care. Which we are.

So, Nurse M. said that it may be as early as next week that we meet a new person (nurse?) to do the "evaluation" for the long term hospice part of the service. She left, and I hung around. Dad went for a walk. Mom was napping. I picked up the handful of brochures on the dining room table that Dad brought from the residential home he visited last week. I read about the services provided from two different hospice agencies. They offer on going care, equipment, counseling before and after death of your loved one. The agency we work with have a home in a city an hour away that we could bring Mom to for a period of time if we needed to.

April 6, 2011

The I picked up a brochure that went more into what to expect when the person is dying. When Dad came home from his walk, I made sure he read that. Reading that reminds us that these very well could be the last few months of Mom's life. She is showing signs of shutting down and preparing to die. I reminded Dad of this, that these could be times to treasure.

Of course, I could be wrong.

We've also discussed the idea of bringing the two twins beds from the upstairs guest room down to their bedroom, and bringing their double bed upstairs. This way, not only would Dad maybe get better rest without Mom's "twitching" in bed, but also it would make it more comfortable if, say, I or somebody else volunteered to sleep in the bedroom for a night, so that Dad could sleep in another room. Mom has been getting up a little more frequently in the middle of the night, sometimes wandering out in to the living room. I'd like to prevent any future falls. At first Dad was against the idea, but now I think he might be warming to it. We can't do it until my brother comes up to help, the large mattress and box spring look pretty heavy.

Mom has been bringing up "wanting to go home" much more frequently. She wants to go home. I'm pretty sure it means she wants to feel normal again. It's so fucking sad.

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.

Morning Update From Dad

An email of morning updates from Dad, received a short while ago. I'm heading over now. Dad has to drive a half an hour away to pick up a rental car so he can have his car repaired.

She ate all but 4 pieces of the fried egg I chopped up into pieces, finished a glass of cranberry juice, took the 2 pills and finished a glass of Ensure (half bottle left over from yesterday).

I threw away the depends and gave her a second pair yesterday.  She took off her black shirt last night before I could stop her and I had to put it back on again.  That green t-shirt I got out might be a good replacement?

Maria actually called last night and I told her a little about the "new team."   Mom was agitated in bed when she called so I put the phone in front of her and she said to Maria, "I've been shouting!".  She said she had pain, like she often does, so Maria said to give her a Tylenol with apple sauce which I did.  About a half hour prior I had given her an Ativan but it didn't seem to do much.   I had to get her up after the Tylenol and let her sit in her chair.  About 9:30pm I got her back in bed.   She was still agitated off and on during the night.

Snowy Friday

I trudged back through the falling snow after I had some lunch, arriving back over around twelve thirty. Dad still hadn't had lunch yet, so I put on some of the chicken soup I had made and brought over for him. For Mom, I took a cup of the soup and put it in the blender and pureed it. Then I put it in the microwave and heated it up. She did eat about ten or fifteen small teaspoons of the pureed soup. 

She was snotty. We worked on that. She went back to dozing. It was fairly quite there, with the snow falling and the wind howling. The phone did not ring like it had all the day before. I picked up a book of essays on the season of winter that I found in her bookshelf. One of the essays, by John Updike, had notes in it. Dad told me she had recited this essay at a church service a few years back. I could see where she had changed some of the words and lines to fit her message. I read the essay aloud to her, Dad listened in, too. Later, I read another essay on winter by a woman named Anne Dillard, I think it was. We got through most of that essay, when towards the end, Mom began to stir, and we knew it was time for the bathroom.

Through out the afternoon, when she did speak, her voice was very soft. Some of the things she said made sense, other things it was hard to know what she meant. The phone did ring one time in the mid afternoon, our neighbor giving Dad an update on things, and she managed to ask about that. This happened while we were slowly walking back from a bathroom break.

Dad and I were both impressed with her walking yesterday. It was stronger, her legs a little straighter. It still took a while to get going - her head is slumped down, her eyes will not rise, but it was less tottering. We were able to let her go for short moments and she was able to stand alone. But not for long. She peed several times, sometimes she was able to wipe herself, other times, not quite. Her confusion sometimes leads her to put the used toilet paper in the basked next to the throne instead of dropping it in the bowl.

She ate a few slices of canned pear in the later afternoon. Drank some more water. Spoke a little here and there, mostly with eyes closed. As I got ready to leave for the evening, around five, I was feeling kind of hopeful that Mom was getting stronger. Dad and I discussed what he could try and give her to eat, and I told him to call with a report later, if he wanted to.

Around six thirty, he did call. I had just sent a little hopeful email out to my siblings (we had all been emailing throughout the day), and was just beginning to relax a little, when he called sounding exasperated. He had tried to give her some food and drink and she was refusing everything. His back was getting sore from sitting in the little stool by her chair, trying to spoon feed her. By the time we hung up again, he had decided to try and give her some ice cream with perhaps, some sliced pears. He didn't ask me to walk back over on in the dark and snow, but after a few minutes, I decided to go back over. Mostly for moral support for Dad, really.

When I got there, he was proud that she did eat some of the ice cream and pear. I greeted her and asked if she would like any of the drink. NO. After a few minutes, we moved her to the couch. After another fifteen minutes, I helped Dad through the ritual of putting her to bed. The long slow walk to the bathroom. Toilet (nothing). Teeth brushing (she still does it herself, somehow.) Four pills (a little confusion, probably because I was there, but she did get them down.) And finally, into bed. The look on her face for those few moments when Dad has to lift her to get her in position, heart wrenching. We left her with kisses and good nights, on her back in her bed, asleep right away. 

I said goodnight, walked back out into the dark and snow, and felt numb. When I got home, my partner said, "How was it, grim?"

"Yep. It's grim." I replied, not for the first time.

Today is another day. Siblings appearing at some point. I have to decide if I want to go to play my gig tonight or not - I have a great friend willing to sub for me at last moments notice. Most important, Mom's well being. Food, drink and comfort. Saturday seems like such a long way away from Monday, when we can finally talk to her doctor again. Dad's post on the message board had quite a few good responses by late last night, and now I'm wondering if she does indeed have a urinary tract infection, or some other kind of infection, after all. She probably needs electrolytes. 

Our neighbor is pushing snow around in our driveway now. He'll go down and do Dad and Mom's driveway next. The sun is out. It's only nine in the morning. Got a lot more to do today. I'm okay, though.

Celebrating The Small Wins

Heading over for a night time stay with Mom so Dad can attend a board meeting at his church.

Stayed with Mom in the afternoon so that Dad could attend the Alzheimer's support group. I wished I could have gone, but it was no use upsetting Mom and dragging her down there. She's pretty "on" sometimes, despite her obvious suffering.

Dad has been amazing with his care giving, I just would like to reiterate. Patience and humor. He shared that he's learned from today's group that we need to try and create more "activities" for Mom.. though it is hard when all she wants to do is lie down and close her eyes. Can't wait for spring so we can at least take her out for walks and sunshine.

Can't come soon enough. It's hard enough, the winter here in Maine, without also trying to care for a paranoid, fearful person with Alzheimer's Disease.

Every day is another challenge. Everyday we celebrate the small wins with her. There really isn't too much time for anything else at this point.

Off I go then. Maybe I can convince her to watch some "American Idol" with me, but I'm not holding my breath. I'll be eating supper when I get home tonight, sometime around nine p.m. I'll survive.

More later...

Fighting Off Sadness

I'm not going to lie to you; I am fighting off the weepies this morning, thinking about Mom's suffering.

This is, by far, the saddest thing I've ever had to witness, personally. Watching my beautiful Mom fall deeper and further. It's agony.

And Dad.. what must he be feeling? A huge sense of loss. Depression at losing his so vibrant and alive wife of forty seven years. Anger. Frustration. Physical and mental exhaustion.  It's all there.

I went over there yesterday after the second phone call, confirming what Dad and I were not surprised would happen.. Mom canceling the ladies dinner at the restaurant. He and I were very supportive with her about her decision, and tried our best to let her know it was alright. Mom was calmer once she proclaimed her decision, but she also spent a great deal of the day napping.

And when I went over a second time, late in the afternoon, with the December darkness closing in on her like a blanket, her restless mind controlling her body like a robot.. sit down, stand up, sit down, stand up, walk somewhere, walk back, sit down in the chair, get up, walk to the couch, lie down, get up.. Dad and I acting as anchors in our chairs, gently speaking with her and riding her waves.

Dad brought up in that time that he wanted us to attend an Alzheimer care givers luncheon and discussion being held at the community center in the next town over, next Wednesday at eleven-thirty in the morning. Mom reacted surprisingly positive about the idea, remembering back, I suppose, to the days she tirelessly worked with the Council On Aging. She assumed it would be a holiday party, and Dad and I did not say much to correct that. As long as we can get her to attend with us, for it is open to both care givers and those suffering with AD. If all goes well, she will have her bath in the morning, then we could drive down to the luncheon and discussion. Hopefully, she won't be too tired and refuse to go.

Day time is always a lot better than night time.

We had a light blanket of snow last night, but today the temp is fairly mild and a light haze of sun.

Last night, Dad suggested that he and Mom switch sides of their bed. He's hoping to get better sleep. I am curious to go over and see if that helped.

More than once, Mom has said to me, when obviously distressed or uncomfortable, "I can't help it, it's the symptoms." At least she's acknowledging it, but it still doesn't take away the symptoms and the agony. I told her yesterday we are all empathetic to her suffering, and we can't imagine how awful it must feel. I also told her it is affecting us, too. Then she says she feels guilty. And we reply that it's not her fault.

And around and around we go, spiraling down. Somewhere, in the middle of that spiral, is a thin line of white light, to which we hold on to with all of our strength and will. But it is so slippery, and I hope we won't ever lose our grip.

If you haven't already, look at this tour of the brain with AD. This is what is happening with my Mom, and millions of other people, as well.

Phone Calls And Soup

Today's first phone call was from Mom again, around eleven thirty in the morning.

"Hi, this is Mum. Do you still want to go to that dinner with the ladies with me tonight?"

"As long as you want to go, I will."

"Oh, okay. We have to be there at (what time is it honey?) ('five thirty') five thirty, so we have to leave at (what time?) ('five or ten minutes past five') five or ten minutes past five. Five or ten past five."

A pause. Then, "I'm feeling pretty shaky right now thinking about going."

"It's up to you Mom. If you don't want to go, we won't go. But, if you do, we will. Just try not to think about it right now, it's still many hours away. Just try to relax and enjoy the day."

"Oh, okay."

"We will talk later, and you can decide then."

Dad got on the phone and together, we confirmed that to her.  There is a chance of snow tonight, so this could seal the deal. Snow plus driving at night plus being around a bunch of chatty women = really scary and confusing for Mom.

"No pressure, Mom, no pressure. What ever you want to do."

Yesterday, sunny and not too too cold, went fairly well. Only one "disaster," when I foolishly gave her a pretty full bowl of hot soup on a tray in her chair and, naturally, the minute I turned my back, she spilled a good portion of it on her lap and sweater. She was pretty upset with herself, but somehow, miraculously, I managed to convince her to change her pants and sweater. She blamed herself, I blamed myself, we managed to put it past us.

Earlier, I got her to go out for fifteen to twenty minutes, walking around the melted driveway. She agreed to let me bring down her collection of fir trees to decorate the windows. She even helped arrange them. She was pleased with the look. Slowly, I am decorating the living room area with her Christmas decor.

She received a phone call from one of her oldest, dearest girl friends. She spoke with her for about ten minutes, early in the conversation telling her, "do you know that I have Alzheimers?" Of course, her friend knew, that is why she called, and after Mom got too antsy to talk anymore, I chatted with her for a few minutes, too. Later that night, I felt sad, thinking that that could be the last time they speak.

Later, Mom's sister called, and Mom spoke with her a bit longer, confirming their dinner engagement at her house this Saturday night. Though, who knows with the weather, it may have to get cancelled.

After lunch and the soup spilling fiasco, I read some more to her from the Wharton book. Again, she closed her eyes and lowered her head, resting her chin on a big pillow in her lap, and occasionally, she'd surprise me and blurt out and correct one of my mispronunciations.

Eventually, she wanted me to stop, so we put on HGTV for awhile until Dad got home from his doctor's appointment. I complimented her on a very busy morning, and she agreed with me.

Later, I stopped back over on my way back from grocery shopping, and gave her a little juice box sized plastic sip cup. She said she had just woken up from a nap. Sleeping is the best way to escape her frustration.

She mentioned yesterday that she was embarrassed about how she speaks. Understandable. Maybe I'm getting used to it, but it's not that bad. It's worse when she's upset, but when she is speaking of the deep past, it's not as noticeable.

It's hard for me not to think about her and her moment to moment struggles.

************
Was just about to post this when I got a call from Dad. "Hello?"

"Hi, here's Mom."

"Hi, I'm sorry, but I just can't go tonight. I'm shaking like a leaf thinking about it. I'm sorry, but I just can't go."

"That's okay, Mom. I'll be over in a little while."

"Okay, thank you, and I'm sorry."

"That's okay, Mom. Bye."

"Bye."

Wednesday Evening

Wednesday night I went to stay with Mom so Dad could go to a concert. He had purchased the tickets a while ago, not realizing at that time that Mom wouldn't want to / be able to go, but he still wanted to make an appearance, so we compromised and he decided that he'd leave half way through the show.

Surprisingly, Mom handled the whole thing pretty well. She had had a bath in the morning, and was all fresh in clean clothes and clean hair. I was too tired myself to do much other than just sit with her (which suits her fine), and we watched a couple of episodes of "Two And A Half Men." I turned her on to the silly sitcom and she seems to enjoy it!

She had been sitting in the same chair a lot lately, and she complained a little about her sides aching a bit. Maria thought it might be time to give the heating pad habit a rest, and Mom didn't seem to mind. I gave her a gentle back rub, then asked if she'd like to try laying down on the couch for a change. She was up for that, and after a little bit of negotiating, she got settled onto the couch and liked the change of view. She even kicked off her shoes.

She asked me to bring her a small bowl of trail mix (it has chocolate bits in it.. she's got a mad sweet tooth these days), and she ate the entire bowl! I switched the channel over at seven thirty p.m. to the basketball game.. She used to be a big fan but hasn't watched baseball or football or basketball games in a while now. So, I thought this was promising. She switched to a new location (the couch) and watched something on television she hadn't watched in a long time (the basketball game.)

Though she checked her watch a few times and asked me what time it was a few times, she wasn't too stressed when I explained to her how long Dad had been gone, and what he was probably doing at that particular moment. Like, well it's seven p.m. now, so he just got there and is settling into a seat. The concert starts in half an hour. Mom would roll her eyes, then at seven thirty five p.m. I said, well the concert has just started.. etc.

Dad called around eight thirty five p.m. and said he was sneaking out and on his way home. He got back a little before nine p.m., and sure enough, shortly after he sat down to share his experience, we looked over at Mom and she had her eyes closed. We had a little giggle over that, then Mom woke up and said she wanted to go to bed. I left them to themselves and their nightly rituals, which now include Dad reading aloud from a book to her. So sweet.

Today the sun is finally shining and I hope to get over there after lunch so we can go out for a walk. I wonder if the new drug is having a positive effect?