One Week

Today makes one week that Mom has been in the Hospice House. It's also her birthday today. Seventy nine.

Dad and I met with Minister B. at the church and were kindly driven up to the House to visit with Mom. We arrived a little after noon. She was sleeping. We greeted her, she seemed to slightly acknowledge our presence.. a little bit of (closed eye) movement, her mouth moved a little, sometimes her brow furrowed. I kissed her and spoke with her, told her we were there.

I had grabbed a hymn book off of her piano before we left, and Dad sang a few hymns to her, Minister B. singing along, too. We spoke to her. I read a little bit from another book I brought up.

The nurse and CNA on duty, new to us, checked in with her and us several times. We spoke with the doctor, too. He admits he doesn't know why Mom is so unresponsive, except that I suspect he's gently trying to tell us what we already know. They are doing their best to keep her as comfortable as possible.

Just before we left, around two, the CNA and nurse shifted her in the bed. She grimaced while they did it, maybe even moaned a little bit. Before we left, we told her goodbye, we kissed her. Driving home, I realized I forgot to wish her a happy birthday, but in retrospect, it didn't feel very appropriate anyway.

We have decided to stay home today, to take care of some business. This still could change.. we feel like we are on call. I have an appointment tomorrow at eleven-thirty, and I'm trying to decide to keep it or not.

My cousin from Maine called me last night, offering any help needed, as well as condolences.

I read back some of the earlier posts of this blog late last night. It has given me more perspective. It feels like it's been a long goodbye, but it still doesn't make it any easier.

Me and Mom in 1966

Brief Phone Call

Called the facility and spoke with Mom for about one minute at five tonight. She sounded a bit whipped and weak, but she knew who I was, and I was able to tell her I was thinking of her and I loved her. Dad has changed his mind and he and I will head up tomorrow morning to visit, and so I was also able to tell her that as well. While we are there, we may also have a chance to meet with a social worker, the chaplain and perhaps the doctor.

Then the plan is to visit again at least by Saturday, with the rest of the siblings, in laws, and my nephew. They were all planning on coming up for the weekend anyway to celebrate her birthday (May 10, age 79) and Mother's Day. We'll play it real cool and try and visit with her in shifts.

I am hoping to get up there about every other day, at least for the first week or so.

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.

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.

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.

A Long Day

Last night, Dad called me twice. The first time to tell me that he got her to the table and she ate a little bit of her dinner. The second time, at about nine-fifteen at night, he said that he got her to bed alright. We were both tired, but feeling a little hopeful that she would come out of this slump.

This morning I awoke early (for me) and got ready to head over before ten, when Maria was to show for Mom's bath time. I got there at nine-thirty, and Dad had managed to get her in the chair and she was drinking a glass of cranberry juice and taking her morning pills. Dad was holding the glass with the straw in it. Then I sat with her and tried to get her to eat half of a banana (which she ate only half of) while he went and fried up an egg. We put the tray on her lap and started helping her get the little pieces of egg to her mouth. She moved slow. She chewed slow. She didn't swallow very well, kind of like she didn't remember how to do it. Plus, she kept her eyes closed most of the time, and seemed to be nodding off in between bites. We finally gave up, her egg barely half way eaten. She nodded off.

Maria called, running late. She had called the night before to let Dad know that she did have a cold, but would be willing to come up and wear a face mask so she could work with Mom. Dad was able to fill her in then about what had happened in the last few days. Maria recommended we get some adult diapers, and to keep her drinking fluids.

Maria arrived just as we were finishing up with Mom on the toilet. She took one look at Mom and suggested we bring her to the bed. She planned on giving her a sponge bath today in the bed. She took her blood pressure (we had done that earlier, too, after Maria had called), and both times it was okay, over one hundred. Then she took her pulse, once on the wrist and once on her neck. Mom was lying with her eyes closed, sleeping, I guess. Maria quietly motioned me to come out of the bedroom with her. Dad was downstairs on the phone with the doctor's aide, making his check up call.

Maria came right out and said she thought it was time for us to call for hospice. I was shocked for a minute, but realized she was right. Maria admitted that she could be wrong, and that she did not want to sound dramatic, but her experience around very ill and dying people makes me trust her instinct. She told me about some of the details involved.. about how we could get a nurse in once or twice a week, how they would check all the vitals and do other work with Mom. Maria said we could take the special bed and commode and pads from our neighbor up the street, who lost his partner to dementia early last year and who Maria had worked with (that's how we found her.) She asked me if we had a large tee shirt around that we could cut up the back so it would be easy to get on and off. I found one at the bottom of her drawer that said "Ireland" on it. I cut it up the back.

Then Dad came up the stairs, and reported to us what the doctor's aide had said. That we should just hang in there, keep doing what we are doing. Finally, I was able to tell Dad what Maria had told me. We three discussed it some more, quietly, trying not to alert Mom. Mom and her razor sharp ears.

Dad agreed to look into it. We had a number of a reputable place already. He called them while Maria gave Mom a sponge bath and cleaned her all up, in her bed. He found out that they don't accept patients until we have the doctor's permission. He called the doctor's aide back. She said they would okay it, even if our Dr. N. was not around (vacation until next week.) Dad said he could wait until Dr. N. came home. I'm not sure what he's waiting for, but I guess nothing happens fast anyway.

Maria suggested we let Mom stay in bed for the day, maybe later she could get up. She showed me how to prop her head up and to give her a drink. Mom moaned and complained. We realized she had a cramp in her thigh. We gave her a Tylenol, I ran home and got my heating pad for her leg. Maria left, saying to call anytime. Mom fell back asleep. I went home for a quick lunch.

After an hour, I went back and Dad had just helped her to the bathroom. She was sleeping. Dad decided to run down town to buy some adult diapers, some medicated talc (for her underarms, Maria noticed redness), a blender so we can mix a banana up with the drinks (bananas are high in potassium, help with leg cramps), and some fresh bananas, strawberries and juice. While he was gone, I let Mom rest in her bedroom alone, while I sat and read in the living room.

After a while, I went in to see her. I offered her some water, she accepted. I laid on the bed with her, stroking her hair a little, answering her questions which made no sense. I just go with her reality, what else can I do? At last she stirred and she said she had to go to the bathroom. I lucked out again, Dad had just got home. He was able to help me get her out of the bed and onto the toilet. She moaned and wailed when we lifted her out of the bed. It was painful to hear.

She peed. She got up. She wanted to go back to bed. Dad was beginning to worry that she would sleep too much during the day and not sleep at night. We got her back into the bed, and I asked her to drink some more water. I put the straw to her lips, and she blew hard, bubbling and spilling some water on to her tee shirt. "You little rebel, you!" I said, and so we gave up on the water. She can be such a bad patient.

I put in a load of laundry, then Dad said he wanted to lie down for awhile, too. So, as he laid down next to Mom on their bed, I went home for awhile. Later, I went back to check the laundry. Dad had already put it in the dryer. I went back home. Then I went back over for (I hope) the last time, bringing chicken that my partner cooked that afternoon, for Dad's dinner. I made up a shake with protein powder, a banana, strawberries and milk, and put that in the fridge for her dinner. By that time, Dad had convinced her to sit in her chair for awhile, and she had drank a whole bottle of Ensure. But, she was sleeping in the chair by the time I got there.

I helped Dad get the rest of his dinner together, gave Mom some kisses goodnight (even though she was asleep) and left.

Mom may be heading into Stage Seven now. Or not. Hard to say. But probably. We'll see how she is tomorrow.

I Hate It When The Stars Don't Point

Just when we thought things were getting better, today was another set back.

Going back to Sunday, after our weekend house guest and my brother left for home, I went next door while my sister was staying with Mom on Sunday morning. Dad was off to church, and my sister was staying close with Mom, who was still in quite a stupor. However, when Mom did speak, her utterances where fairly lucid. My sister showed me how she was doing some Reiki on Mom, and showed me a couple of simple techniques to try on my own. I left Sunday early afternoon for my gig, feeling dubious, but  knowing there was not a lot I could do. I decided to take advantage of the extra help and tried to enjoy the rest of my day.

Monday morning I went over before noon. There appeared to be some improvement. Dad mentioned that Mom had "snapped" at him a few times, and was walking better. We were feeling hopeful, even though she still preferred to lay on the couch. She even snapped at me at one point in the afternoon. I was tired, so I left after several hours there, feeling confident that the worst was over.

Today, Dad had a hearing test planned for eleven in the morning. It was to take him an hour to drive there, so I was all set to walk over there before ten. Just before I left, I checked my email, and found he had written me about nine in the morning to inform me that he had cancelled his appointment. He wrote that Mom was still in bed. He had helped her use the toilet at six in the morning, and back in bed, she began babbling and acting out. He made the decision to give her one of the prescription mild sedatives. Well, two actually, but he thinks she spit the first one out, in a fit of defiance.

When I arrived at nine-forty five, she was still in bed, and as I was taking off my coat and boots and Dad was coming up the basement stairs, I could hear her moaning and babbling. When he and I entered the bedroom and told her we were going to get her up and dressed for the day, she complained. The sentences coming out of her mouth made no sense. She was cross referencing things and the words she said made no sense.

We somehow managed to get her out of the bed. Her legs were like jelly. She couldn't keep them straight. It took forever for the both of us to walk her to the toilet. Finally, she was on the john, and she peed. We switched out her panties for some fresh ones. She's been kind of smelly down there.

With a huge effort, we got her dressed and together we all wobbled into the living room and got her in her chair. I propped her head up with pillows the best I could. Dad brought her out her two Alzheimer's pills and some juice, as per their usual routine. She moved very slowly. The first pill, she ended up chewing. The second pill she swallowed. This took a long time. Then Dad fried her up an egg, and cut it up in tiny pieces. Very slowly, and with us feeding her, she ate. But she seemed to not remember how to swallow. I kept having to remind her to chew, then swallow. She ate about two thirds of the egg, plus a couple of bites of a Bosc pear I had brought over and cut up. Then she nodded off.

Dad called the doctor's aide and left a message. She finally called back and Dad told her everything he could remember, speaking for at least twenty minutes. Usually Mom is very aware when we are discussing her (in front of her), but she didn't seem to care today. The aide was going to talk to the doctor on call (our Dr. N. is on vacation this week), and get back to us.

Dad and I decided it would be okay if I left so I could do my grocery shopping. I was gone for about two hours. When I got back at one-thirty, Mom was napping in the chair, Dad was napping on the bed. I wiped some drool from Mom's chin, propped her back up a little, and then let her be. The aide called back and I answered, Dad never waking at the sound of the phone ringing. She told me that the doctor suggested we not give her anymore of the mild sedative (Aviton I think it's called, I'll double check the name), and if she's still drowsy tonight, then to skip the Remeron (which is the appetite stimulant / anti-depressant drug she's been on for a while now.) She reminded us to keep her drinking, especially high caloric drinks, and then she told me that we were doing a good job, to hang in there. She said to call with anymore concerns and to check in tomorrow.

We hung up just when I saw Mom stirring. I asked her, do you have to go to the bathroom? "Yes," she said. I hated to do it, but I went and woke Dad from his slumber, so he could help me get her out of the chair and onto the toilet. When it was time for Mom to get up from the toilet after peeing, I realized she hadn't wiped properly. I wiped for her. We changed her panties and her pants. We got her back to her chair. She went back into her stupor.

Dad left to do some banking and shopping. While he was gone, Mom managed to drink a glass of Ensure with a straw, and then rested. After a while, I saw her stir again. She had to go. This time she had to poop. Oh oh, I thought.

Somehow, I got her up from the chair. For a second there, I thought she was going to go in her pants. I begged her to hold it until we got to the toilet. Luckily, this time, once she got walking, she walked fairly fast. She sat and did her thing. This time, I took no chances. I put on a pair of latex gloves and did the dirty deed. Another first for me.

Dad got home just then, luckily, so he was able to help me get her off the toilet, pull her pants back up, walk her to the chair and settle her back down.

All through the afternoon, she said many things that made no sense to us, only to her. I wrote down one of them. "I hate it when the stars don't point." If only I knew what she meant.

I left around four, telling Dad to be sure to call me if he needed help with anything. I had asked her if she would eat dinner tonight, and she said she would. I could hear her stomach growling in hunger, but I couldn't get her to eat. She also had a drippy nose.

A crappy day. Hopefully, things will get better again.

Mystery Solved

Arriving at the house about eleven-thirty in the morning on Friday, I could see Mom was still in the same state as the day before. As I entered the living room to greet Mom, Dad came up the stairs and was eager to tell me of his phone conversations with the doctor's office and the pharmacy. After investigation, it was discovered that the pharmacy was at fault for giving the wrong dosage of the Haloperidol. I was correct in remembering the amount was .5 milligrams.

She ingested 5 milligrams. Once on Tuesday afternoon after the doctor's appointment, and once on Wednesday afternoon after the ladies luncheon.

Short of fantasizing about getting restitution from the pharmacy (who were very embarrassed and apologetic, and naturally, will replace the drug at no cost..), the important thing is we were right, this time, about the drug having that effect on Mom. It's been decided that we will wait several days for the strong dosage to get out of her system, then start back up again with the correct dosage. Because we noticed a remarkable difference in her manner on this drug.. Moments of the "old Mom" showed through, although she could hardly stand up and walk on her own.

Relieved to have made that discovery, I helped Dad get Mom settled at the dining room table so they could eat some soup. Mom was very weak, so I spoon fed her a little bit to get her started, then she ate a few spoonfuls on her own. After lunch and a bathroom break, she settled back into her chair, and eventually, Dad ran out to the market.

While Dad was away, I read a short story out of The New Yorker to her ("Axis" by Alice Munro), and she enjoyed that. Then I turned the television on real low, and helped her settle into the couch. She drifted in and out of sleep. I worked on a crossword puzzle.

The phone rang once. Dad had a question about the grocery list. Mom smiled at the misunderstanding. Later, the phone rang a second time. This time it was Dad informing me that he had just had a fender bender, he was okay, but would be a little bit longer filling out the paper work.

Great, I thought. Just what we need, more stress. But, Mom was either asleep during the phone call or too tired to care, because she never asked me what Dad wanted, so I didn't bother telling her. He was able to drive home in the Suburu, with the whole front of the vehicle's bumper jammed in the back seats. When he got back, he was able to call the insurance company. Mom was still in the dark about the car. Good, no need to worry her any more.

So, I left to go shopping myself. My brother and a friend came up to visit and play music. My sister is arriving this afternoon for an over night and to stay with Mom on Sunday while Dad is in church. So, more respite, a little fun, problems getting worked out, mysteries getting solved.

Experiment Over

Monday morning, I stayed with Mom from nine-thirty until around noon, when Dad got back home from the church. For the first hour with her, she was fine with watching a movie while I quietly read and did a crossword. After that, I picked up the "Sister Anna" book, and before we knew it, Dad was back home. He heated up the chicken noodle soup and I left them to their lunch. I went down town to market and picked up supplies for the next couple of days, in anticipation of another snow / freezing rain fall on Tuesday and Wednesday.

Later on Monday afternoon, I went back over and finished up "Sister Anna." I was a little nervous reading the second to last chapter, because oddly enough, the story turned a bit dark. When we talked about that part the next afternoon, she didn't really remember it anyway, so I lucked out. She was just happy that we finished the story.

I had read until four-thirty, which gave Dad time to do stuff on his computer and what ever else. When he came back up to get wood from the wood shed and start the wood stove, Mom began her usual "sundowners;" getting up, pacing about, sitting back down, lying down, getting back up. She complained about a lot of things.. we got her to sit at the chair by the wood stove, and Dad offered to get her her nightly glass of white Riesling with a couple of ice cubes in it to water it down. She slowly agreed to that. Her hand was shaking as she sipped out the glass. She continued to act anxious. It was quite.

Then, I remembered music. With not enough time to quickly figure out how to switch the television's receiver over to the stereo, and find an appropriate music CD to put in the disc player, I suddenly remembered that the electric piano in the living room had demos on it. Hesitantly, I turned it on.

Mom perked up instantly. At first she thought I was playing the piece, some classical piece in the "Grand Piano" mode. It's the longest one, and as the piece went on, she began to hum along, then even sing out loud. The music was working; it soothed her in the face, it took her mind away. Something clicked in her (undamaged?) sub-conscience mind, and she was calmed, at least more than before. I was quite pleased with that.

As the demos kept playing in their different piano modes and sounds, Mom relaxed, finished up her wine and chewed on her ice cubes, and almost "looked like the old Mom" for a little while. Dad was able to start their dinner and I was able to finally go home without feeling too worried. What a life saver.

Tuesday it snowed all day, a good six to ten inches. I ambled over there in the afternoon, and Mom spent the afternoon between the chair and the couch, mostly watching the old movies on television. She didn't complain about too much, and I left before "crazy hour," but she seemed okay enough to do that. Though I know it's not easy on Dad, still. Later that night, when we had a moment to talk on the phone, he thought that she had had a pretty good day.

Today, Maria showed up for Mom's bath. Our neighbor had cleared our driveways out by nine, a huge gift. I went over a little before noon, greeted Mom, who was on the couch watching HGTV shows, and I told her I was going to do some clearing around their doors and walkways. This took me about forty-five minutes, then I went in just as they were sitting down to some Cream of Mushroom soup and crackers. Mom ate a little, then Dad told me (aloud) that he had checked in with Dr. N. and told him that Mom had not changed much. She is still panting during movements and anxiety, and shaking. So, with that, Dr. N. told Dad to put her back on the Namenda starting tonight, back to 10 mgs. two times a day.

Maybe because we were talking about her, or who knows, but Mom got up, not finished with her soup. She "was done." We tried to get her to finish, but she was too frustrated. Then Dad said, "Well, it must be hard with your right hand so weak and shaking. Why don't you let me feed you?" Mom agreed to that, and I said, "Let me Dad, so you can eat," and so that was what I did. And she actually finished most of her soup that way. Another first for me - spoon feeding Mom.

After lunch, she complained of being tired, so I helped her settle back down onto the couch. As she nodded in and out of sleep, the HGTV programs went on for another hour and a half. I sat quietly on the other couch, and Dad went down stairs for a nap.

When he came back upstairs, he got some wood, then joined us in front of the television. He has a habit of commenting out loud to the things he sees on the programs, and his comments upset Mom. She yelled at him and decided to get up and go to the bedroom. We tried to get her to stay, Dad offered to leave the room, but she insisted, so of course, we obliged. I tucked her in with a throw over the covers. Dad came up and we chatted quietly in the kitchen for a few minutes. Next thing you know, she's up, saying "What about Saturday night?" (She had overheard me talking about my concerns with a gig this weekend.)

Arg. So, we explained what we were talking about, and back to the bedroom we went. I tucked her back in again, and explained that I was going home now and Dad was now in the living room.

"What's the living room?" she said.

"That's the room you were just in, the one with the television in it."

"Oh, yea, okay."

So, perhaps getting her back on the Namenda is good..  Dad and I have noticed little lapses in her cognitive reality the last few days as the drug wore down to nothing (well, today was the first morning of zero Namenda, but the experiment is now over and so back we go.) Dr. N. explained that if there was going to be a change, we would have noticed it right away. We have noticed no change in her behaviors, as well as a drop in her ability to think right (on Monday after lunch, Dad had mentioned to me, she asked him "When were they going to get picked up to go home?" They were home.) And then this question about what the living room was..

Hopefully, the reintroduction of the drug will alleviate some of that again. Naturally, we can't expect much.

This Whole Thing Sucks

Yesterday, a frigid morning, I got over to stay with Mom a little after ten, so that Dad could go to the church to do some treasury work, get his blood test at the hospital, and do a little shopping on the way back. Mom was sitting with her book, reading away. I had wanted to try and start cleaning up some of the Christmas decor, and I got started on that right away.

The phone rang, and it was one of Dad's dearest former colleagues, who is aware of the situation. I spoke with him for a minute to explain Dad was out, then he asked to speak with Mom. She agreed, and stood with the phone in her shaking hands and spoke with him for about another minute or two. She was shaking like a leaf. I could see this was not a good day for Mom.

Soon, she asked if I would read aloud to her from the book. She was very impatient and seemed only to want to get back to the story. Like it is the only thing her damaged mind could follow. I read to her for awhile, then took a break. She went back to reading herself, trying in vain to read aloud to me a little while I quickly zipped around and tried to do more work.

I made her a simple lunch of organic chicken soup and grapes and a couple of chips and a small glass of Ensure. I had us sit at the dinning room table so that she wouldn't spill the soup on her lap. She complained a lot about this and that, and rushed through eating. She finds no joy in eating anymore. It's distressing. I don't know how Dad stays so composed day after day.

I cleaned up the dishes after lunch and then went back to reading to her aloud. Dad rang to let us know where he was at, and I continued to read aloud until he came home, sometime around two in the afternoon. While he distracted her with the groceries he brought home, I was able to zip upstairs and grab the box for the little porcelain lighted Christmas tree and as quickly as I could, I disassembled it and packed it up, not before she wandered over and moaned a little about the whole thing. Luckily for me, Dad was there to tell her it was alright and diffuse the event.

She is so worried and sad all the time. I kind of dread hanging out with her this morning, while Dad goes off to his annual physical with Dr. N. However, it's my job and if it weren't for me, who else? I can't stop thinking about her misery. Perhaps when this book she is reading is finished, she'll go back to sleeping or watching television.. but even television seems to be too confusing for her. It's way too frigid out to convince her to go outside for a walk. She's only really happy when Dad is in her view.

This sucks. And that's just me. Imagine how much it sucks for her?

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."