A Bit Lost

Today I woke up early after retiring early (with a throbbing headache from crying), and got dressed and tried to decide if I would drive up to the Hospice House or not. I did have some errands to run in town, so before I left, I stopped over to consult with Dad, and he had already decided to stay home today, and due to appointments, he will stay home tomorrow, too. He had called the facility at eight in the morning, but Mom was still sleeping, but the staff was reassuring and promised to let Mom know he had called and that he loves her.

It was then that I decided I was too emotionally drained to be of much use, and because it is a long drive, and I'll need to spread my visits out, I, too, will stay home today. Dad did just check in with me to let me know he did speak briefly with Mom, and she sounded okay. She was very sleepy, but she did hear his voice. Then the staff told Dad that she did complain of neck pain and pain in her sides last night. They also reported that they gave her a bath this morning and washed her hair.

I continue to feel weepy and sad, yet I also admit there is a sense that it is out of my hands, at this point, but the hands she are in now are better than what Dad and I could be providing, we both admit. I just can't help feeling worried that she may feel abandoned by us.. but I hope to remedy that by calling her in a couple of hours, and hopefully, I'll be able to speak with her for a minute. And perhaps it's worse for me than it is for her right now.

Dad and I both feel a bit lost at the moment. When I went next door earlier, I was okay until I saw the living room and all of the residuals from our recent "battles;" the pillows strewn about, the blankets a tossed every which way atop the couches, the footstools askew. The books and magazines piled around, half-read in desperate ploys to appease and distract her from her woe and angst. The vase of wilted daffodils Chris brought on Sunday. Seeing it all, and hearing how quite their house was, brought a fresh swell of tears. The indent in the cushions of the couch, nearly still warm from the many hours her body has lain there. It was a bit much for me, and I decided it was best to leave and tidy it up on another day.

So, I am home now and mucking about best I can, like a child reaching around in the dark with out the routine of keeping eyes and ears out for Mom. For now, she is safe and cared for, and Dad and I have the room to breath a little and work on some of our own problems.

But the thought of Mom is always there. It is still too early to speculate, but we will continue to hope that the plan carries through and the team at the House can stabilize Mom so that caring for her again, back home, will be a little bit less overwhelming. We will just have to wait and see.

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.

The Calm And Winding Road

Well, as of right now, Mom has been calm all day. The last three nights, there has not been any dramatic over night episodes.. it appears that she is very comfortable with the hospital bed with the special gel mattress. She has been sleeping a lot during the days, too.

Dad and I both got some respite with the arrival of my brother and my S.I.L. on Saturday at noon. He was able to attend a memorial service in the afternoon, and I was able to take my weekly walk with my neighbor as well as have extra time to prepare for my gig that night. They left Sunday morning, and I stayed with Mom until Dad got home from church, around one forty-five, and then I went home for a couple of hours.

A little after four, my S.O. and I walked over with a basket of dinner fixings, and by five we four were seated at the festively decorated dinning room table and indulged in an Easter Sunday dinner of lamb, mashed potatoes and asparagus, with a little salad. Mom ate fairly well, really enjoyed the lamb (always has been one of her favorites), then began to get antsy as we finished our plates. We managed to convince her to stay with the mention of dessert (a simple lemon cake with fresh strawberries slices), which I quickly served to her and kept her at the table for another five minutes or so. After that, I settled her back onto the couch, and, with Dad dozing off in the chair and the television quietly on, I cleaned up the dishes and the kitchen and left by six.

This morning Nurse Corrin arrived at nine, and she examined Mom right in the bed. Though her vitals were all good, Dad expressed concern about how much Mom is sleeping, and Corrin reminded us that this is part of the progression of the disease. She explained that right now, she is sleeping a lot, only perking up a little at some parts of the day (the afternoons, in our case), but that she may snap out of this phase and begin to be awake more again, too. Of course, there is no telling how things will shift, but I mentioned to Dad later that at least it's not as exhausting on us at the moment. It is much easier with her sleeping a lot, and if it doesn't effect her night time sleeping, which it hasn't in the last three nights, let's not stress about it.

I left today at around two in the afternoon, after having sat with Mom while Dad did some errands down town. In that time, I read two more chapters from "Little Women" to her, got her properly dressed, gave her some more Ensure, and did a load of laundry. When Dad came home, she got up and had a little tiny bit of soup, then it was back to the couch. I cleaned up the dishes and came home.

Just a few minutes ago, Dad called me to say that Mom wanted to go out for a little drive in the car. I just saw them go by.... I had a little flash back to all the times in the past when they were always busy, running off to engagements and parties and dinners and concerts, leaving me free not to worry.

Well, just now, I heard the car beep. They've been "on the road" for about twenty minutes, now they are back home. I guess I'll head back over now and see how bumpy the road towards "crazy hour" is today.

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.

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.

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.

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.

Even Steven

No news is good news, right?

That's how it has felt the last few days. We seem to be at an even keel right now, with the sunnier, warmer days (though a few snow showers here and there), and Mom just kicking along, nibbling on foods here and there, sleeping a lot, and some little walks thrown in for good measure. Looking forward to warmer days so I can get her out for more sunshine and exercise. We had our last visit from the occupational therapist, Gwen, yesterday, and right now, the physical therapist is visiting while I am still at home. I suspect we may see Nurse M. later today, too, but maybe not. I'm heading over there within the hour so that Dad can run down town and get his hair cut and go food shopping. I think my sister is coming up tomorrow for the night and hopefully to stay with Mom on Sunday.

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.

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.

The Last Few Days

Just a quick recap for the record.. what I can remember, that is.

I didn't spend a lot of time with Mom on Saturday, as brother was up. He stayed with Mom for awhile so that Dad and I could both go out and run errands during the same time.. a rarity. Naturally, we ran into each other at the market, anyway! This day, too, we started her back up again on correct .5 mg dosage of Haloperidol.

Sunday morning, brother got over there early so Dad could go to church. I was able to have some free time in the morning, then went over and hung with both of them for a couple of hours. Mom was still fussy with food and wanting to sleep a lot.

Monday was my birthday. I visited around eleven-thirty. Mom was okay, a little bit perkier than a week ago, although still fussy about foods. She's also taken to lashing out (verbally) at Dad, very impatient and short with whatever he says. Monday morning, a home health woman came by, Jackie, and gave Mom a sponge bath, washed her hair, and brushed her teeth. I hung around while Dad ran errands that afternoon, and Mom and I did a little reading from a book of travel essays about Cuba. I left around four in the afternoon.

Tuesday got over just before noon. Dad said that Mom was very sleepy the night before, but not too bad behavioral wise. That morning though, he expressed frustration with her "being ornery." It's mostly about her lack of appetite that makes him annoyed, I think. He also mentioned that she had had an "accident," but we think it was just from lack of getting to the bathroom on time, versus incontinence. He cleaned her up and she continued on on the john with a regular bowel movement. She didn't seem too upset by the event.

Nurse M. showed up a little after noon, shortly after Mom nibbled on a couple of pieces of toast and grapes. Nurse M. immediately recognized that Mom appeared to exhibit less anxiety with her arrival, noting Mom's brighter eyes and smile. Though Mom still expressed confusion about Nurse M.'s name, as well as "what road do we live on," she really was less anxious. Her restlessness at the consultation was notably less, I thought, too. Halfway through their meeting, Dad told me he was tired and went downstairs to grab a little nap. Nurse M. checked Mom's ankle and her vitals, after interviewing about the medications and reactions. We decided to maintain the level of the Haloperidol for at the very least a few more days. After next week, Nurse M. will visit less often for a week.

I read more from the Cuba essays to Mom, and encouraged her to drink and eat a little more. Dad came up from his nap and went out to run errands. When he came home, after settling in, he came and sat on the couch and Mom laid her head in his lap. She does seem to get more sleepy in the afternoon, probably because of the drug, but her confusion about where she is seems to be a little bit less.. or, at least, she's bringing the subject up less.

Today, Wednesday March ninth, Maria comes to work with Mom at ten. Dad and I decided that I will got to the monthly Alzheimer's support group at one, down at our local community center. Tonight, Dad has a board meeting, so I will stay with Mom until he comes home. More snow coming later tonight, unfortunately, but switching over to rain by Thursday night.

****
Okay, just got a phone call from Dad now, a little before ten. He was worried because Mom was very groggy this morning and out of it, and she was very wobbly when she first got out of bed. She did eat most of her breakfast, but then had a loose stool, which he had to help clean up. He said she fell back asleep in her chair after all that. I asked if she was drooling or speaking softly, but he didn't think so. I told him to call Nurse M. about all this.

Damn drugs and their damn side effects.

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.

In Like A Lion

Yesterday, Tuesday March first, Mom slept the whole day, in between bathroom breaks. I got there just as Dad was getting ready to leave for his appointment. The phone rang, and it was one of the occupational therapists from the agency, offering to come to bathe Mom, so I put her on the phone with Dad and they agreed to put it off. Not that Mom doesn't need a good cleaning up, but Dad was going to be gone for most of the day time, and this being her first time up, we decided it would be better to wait. Maria is still coming this morning, as well.

March 1, 2011

Shortly after Dad drove off in his car, the nurse we met on Sunday called, returning the call Dad had made the day before. She asked how Mom was and I told her she was just resting and not too bad. I thanked her for calling, and we will be seeing her later this afternoon.

I visited with Mom, and immediately she indicated that she wanted to use the bathroom. She is getting up better, though not without help. She's even able to stand alone, too. She strained a little to produce a decent sized bowel movement, then I watched her to make sure she wiped well. Dad has put on a pair of adult diapers on her, and she doesn't seem to notice.

The rest of the day was like that. Small drinks of water or juice, no eating, bathroom breaks, sleep. On the couch mostly, but once she wanted to sleep in bed. I helped her into that for a while, then she called out for me. "Do you want me to close the curtains, Mom?" "No, just make them straight!" When I closed them she was content.

Later she wanted me to lay next to her in the bed. I agreed to do that for a few minutes, but when I realized it created even more confusion for her (she started getting confused about where she was, where she lives, where I live, all kinds of stuff), I suggested we get up and go to the couch, that it would be less confusing for her. She agreed to that.

At one point I was able to get her to eat four sliced grapes. When Dad got home around three, she ate some peeled and sliced apple. "Do you want some cheese, Mom?" "NO!"

Two things we've noticed. She'll only eat when we feed her like a baby. Some of that is her sore hand, but how much is it the Alzheimer's and how much is it her? Oh, I don't know. The other thing is she has started to moan and howl when she wants attention. This is a sign of losing words, which does indicate she is slipping into Stage Seven.

We anticipate some improvement with the extra help, which will really get started in the next few days. They will help us decide when we can try the correct dosage of the Haloperidol, which may help with some of her obnoxious behaviors. I used to read to her, but now all she does is sleep. She used to watch movies a little. Her sleeping patterns are getting all turned around, too.

Let's see what today brings.

Somewhere Outside Of France

Despite our excitement over the prospect of professional help coming to the house with the Hospice agency, as well as Mom bouncing back a little bit from the over-medication incident, let's face it - she's deep into this disease and it's only getting worse.

As Dad reported in his comment on my post from yesterday, Mom rose early today and went out to the living room for juice and pills, but refused food, except for one or two bites of an egg. Soon after that, she wanted to go back to bed, and that's where she still was when I arrived a little after eleven in the morning. She called out, "Who is that?" when I entered the house, and once I took off my boots and coat and hat and entered the bedroom, she babbled quite a bit. She mentioned something about feeling like she needed to get back home, and finally I just went along with it, asking, "Well, where are you then?" And she replied that she was somewhere outside of France.

After a while, we got her up to the chair, but it wasn't long before she wanted to be on the couch. She would not eat, but she did drink Ensure and water. There were many trips to the bathroom for peeing through out the time I was there, and a little bit of walking around. She did want to have the beautiful bouquet of flowers my sister brought up moved to the dinning room table. She seemed intent on cleaning off the marble table that is next to her regular chair today. Usually it's cluttered with tissues and napkins, toothpicks and water glasses.

She was very cranky and verbally combative today. She complained a lot about her right arm. She continued to say things that made no sense, only to her. We try our best to understand what her true meanings are. It's difficult.

Dad was depressed today. The snow was falling all morning into the afternoon, switching over to a light freezing rain for the last hour or two. We couldn't go anywhere. He's worried about getting enough sleep tonight (and he didn't sleep very well last night), because he's got the appointment with the elder care lawyer tomorrow in the city an hour away. I'm a little worried about being alone with her for the three or four hours he will be away. It's possible we could have someone from the agency come up to assist me with her tomorrow, but it's not confirmed yet. I can probably handle it alone, but you never know where the disease may make her turn next.

And she's not eating. We weighed her during one of the bathroom breaks, and the scale stuck at one hundred pounds. Perhaps the coming week will feel more hopeful, but all in all, this disease blows, and it  hurts like hell to see such a beautiful, intelligent woman become so helpless and pathetic.