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.

Extra Help Is On The Way

Running off to my gig now, but so excited just wanted to post this.

Hospice nurse came today for initial evaluation, and I am feeling one thousand percent relief! Quality help is on the way, two to three times a week for a while!

Mom is much more like her pre-haloperidol over-medicated self today!

Phew.

Saturday's Small Improvements

Perhaps the drug in her system is finally getting out of her blood stream?

All I know is, she was a lot more alert this morning, in between dozing in the chair. Just got back from lunch with them. Dad ran down town and got some pre-made frozen lobster bisque, along with a few other foods. We had discussed it with her earlier and she said she would like to have some of the bisque. When he got back with it, she was anxious to eat it. It took a while to heat it up. She complained of a headache, so we gave her a Tylenol.

She had a small bowel movement in the morning, and peed a few more times. One of those times was a false alarm. Just before lunch, she thought she needed to go poop again, but nothing came out. She wanted to sit at the table, but the bisque wasn't ready yet, so Dad gave her a small plate with some cheese and crackers and a couple of sliced grapes on it.. and she ate them! And swallowed them!

Then she got anxious, so I helped her up again, and we walked around a little, and finally the bisque was done. She gobbled up a good portion of it, then proclaimed she was done. Back to her chair and napping.

She's still frail as hell, speaking and walking feebly, and confused about stuff, but still, there does seem to be a bit more oomph in her today. I've decided that I can play my gig tonight, especially because my brother and sister will be around tonight to assist Dad in her moment by moment care. She is still a little sniffly off and on, but I managed to sneak a packet of Emergen-C vitamin C powder into a glass of cranberry juice, and she drank all that up.

I left her dozing in the chair, post lunch, and Dad sorting mail. I just saw my brother drive by, heading for their house. I can rest for a little while myself now.

Snowy Friday

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

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

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

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

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

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

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

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

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

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

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

Waiting

Just got back from being over there for a couple of hours. Dad had got her in her chair, she drank some juice and took some pills but that's about all. She's been dozing in her chair this whole time. We put on the light classical music, and I also read a few poems to her, even though she did not respond.

No word yet from the hospice people. Snow is coming down hard today. Dad is hanging in there. He posted on the Alz.org forum, in the caregivers section, about our experience with the over dose and the decline into what appears to be Stage 7. A few people replied, saying to keep her hydrated, keep in touch with the doctor, and that nobody knows for sure if this leads to the end. Sometimes they bounce back, other times they don't.

So, we are in a waiting zone for now.

Quick Update For Thursday

Just a quick mid-day check in. Mom is still pretty out of it, not eating solid foods. She drank a whole glass of Ensure, a small bowl of applesauce and a bite of banana in the morning. She's had a whole glass of cranberry juice and a small bowl of chicken noodle soup. She chewed on the chicken bits but later spit them out. She has a drippy nose. She's been sleeping, propped up in the chair. We did have her walk to the front door after her third bathroom trip. She stood there for a while, even took a few breaths of fresh air with the door open in the sunshine.

We've got the ball rolling on hospice. We're expecting a call back to set up an evaluation. Naturally, the snow storm due tomorrow may push a visit from a hospice worker back to Monday, instead of Friday.

Our kind neighbors are planning on helping us get the hospital bed, pads, and commode from our other neighbor, hopefully this afternoon.

I've been over there twice already today, heading back over in a few minutes.

Mom did crack one joke on one of our walks back from the bathroom. We like to recite while we walk "Left, left, I had a good job but I left. First they hired me, then they fired me, then by golly I left... left, left, etc." When we got to the last line, she said, "First they hired me, then they fucking fired me..."

Still has her humor.

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.

Puzzling

Yesterday, Mom had her bath and was game for the ladies luncheon. I offered to go, but we all decided that I could stay home. I jumped on the opportunity of having their house empty and cleaned for four hours.

They got back around three, and I checked in with them around four. Mom was alert, but calm. It was quite noticeable to me. She was able to respond to my questions about her experiences at lunch well, and though she yawned a bit, she seemed bright eyed and mellow. I was hopeful, and left them alone after about an hour.

This afternoon, just after lunch, I stopped in to pick up recyclables to bring to the transfer station. When I walked in, Mom was in the chair, partially slumped over. Dad came up and said she had been like that all morning. When I looked at her, it was remarkable how different her face appeared from yesterday. Her eyes seemed dull and her affect was flat. She told me she slept poorly, that she had vivid dream activity all night and also that her body felt "achy." "Like a fever achy?" I asked. "No." She replied. Hmm.

I ran out to drop off the trash, then went back over around one-thirty in the afternoon. She was in her chair, slumped and sleepy. The television had been on all morning. Dad said she ate very little of her soup for lunch, but ate up her egg and a whole bottle of Ensure for breakfast. Before Dad went downstairs to take a nap, he and I discussed whether or not he should call the doctor. When he came back up around three in the afternoon, it was coming up to the time she was supposed to ingest the new pill, but we opted out. She just seemed way too sleepy and dull. Though, again, when I looked her the eye, she did smile and "see" me... I don't know.

I got her up for a bathroom break and some short walking. We went downstairs when the phone rang and Dad was talking.....she wanted to know who it was. When he hung up, he told us that it was the woman who runs our local Alzheimer's support group, informing him of the care givers training sessions starting up in early March. Six weeks, two hours, four-thirty to six-thirty, once a week. Not a very convenient time.. We are still considering it. If we both go, we'd have to find somebody to sit with Mom for three or more hours once a week at night.  Gulp.

When I left at four, she admitted she was super tired. Yet, she did speak quite coherently when questioned, and she did not act strange.. except for her extreme tiredness. Puzzling.

Is it the new anti-psychotic drug? Or is it that she's just burnt from three days in a row of going out? Or is it that she's tired from a bad night's sleep? Or is it just the Alzheimer's Disease pushing down on her?

We'll see how she is tomorrow, then take it from there. Probably not good to take her off the prescribed drug, but it just didn't seem necessary today. If need be, Dad will get in touch with Dr. N.'s assistant tomorrow. He's supposed to check in with her about Mom's reactions to the new drug on Tuesday anyway.

Follow Up Doctor Visit

Mom's follow up appointment with Dr. N. went as well as could be. We got there at just the right time, so there was no waiting in the waiting room. We did have to wait in the exam room for about ten minutes, but at least Mom didn't have to undress, so we managed to pass the time in the little room until the doctor arrived.

He's a wonderfully patient and observant doctor, as all doctor's should be, and the consult was fairly short. After mentioning to him that the "sundowners" is still one of the more disturbing "side effects" of the Alzheimer Disease, he prescribed a new drug for Mom called Haloperidol. This drug is actually an anti-psychotic, often prescribed to people afflicted with schizophrenia. It's a very tiny dosage (I think it was .5 milligrams, but I'll have to double check), and we were told to give it to her everyday around two in the afternoon.

The side effects? The usual. I'm not crazy about all these drugs going into her system, and I'm quite sure the "old Mom" wouldn't be either, but if they help her from experiencing moments of complete and utter confusion and hysteria, I suppose it's worth using them. At least Dad and I still practice the most effective "treatment," which is support, guidance, love and understanding. Mom wants some chocolate at four-thirty in the afternoon, just before dinner? Fine. Mom wants to lie down on the couch at ten-thirty in the morning? Fine. Mom wants to get up and walk around the table? No problem. As long as we keep her fluid and without fear and anxiety, this seems to be the best treatment for this nasty, unforgiving disease.

So, with the new prescription in hand, a promise to check in by phone with the doctor's aide in one week, and a new appointment set for three months from now, we got back in the car, escaping the frigid February air, and quietly drove back to our town. We stopped at a bank, then at the drug store, then Dad ran into the market to pick up a few things. All this time, Mom remained calm and quite. She had her sunglasses on, and I'm quiet sure she had her eyes closed. I didn't push her to talk while we were waiting in the car. Best to let her rest.

Back home, we helped her take off her coat and mittens and scarf and shoes, and all she wanted to do was get back to her couch and rest. I left them while Dad was preparing their lunch, and a couple of hours later, I went back for an hour or so. Mom lay quietly on the couch the whole time, and Dad told me he gave Mom her dose of the new drug around three in the afternoon. At four, when it was time for me to leave, she was still fairly calm, but I don't know what happened after I left. Probably too soon to know how much of an effect the Haloperidol will have on her behavior yet.

This morning she has her bath with Maria, and then she's been invited to the ladies luncheon. I'm assuming she'll go, and perhaps I should go, too, but neither one asked me to. She might be okay, but all I know is, everything is tiring to her. Just being awake is tiring to her.

You just want to hug her and kiss her all over, anything to take away her suffering. Once in a while she still smiles, sometimes she "cracks a joke." Sometimes the "old Mom" says something, sometimes the confused Mom says something you can't quite understand. Often she yells at Dad, kind of "blaming" him for her suffering, which is only natural, and he continues to be strong. He doesn't take it personally. He is always aware that her brain is injured and she can not help her behaviors.

Dentist Visit

Yesterday Mom and Dad had appointments with the dental hygienist. We got Mom settled in the car and Dad drove us to the office, which is nearly half an hour away. We took our time, we were early. Dad brought along two of the mild prescription sedatives just in case, but we never did need to use them.

We parked in the icy parking lot of the office, and with Mom holding each of our hands, we walked with her to the door. The office is in the basement of a large brick building, and the entrance way to the office includes a set of steep, carpeted stairs down a dark, wood paneled passageway. Once in the waiting room, a low-ceilinged, fluorescent lit space, drab decor and soft pop rock playing just a little too loud coming from an old radio on one of the tables, we scuffled about undressing Mom from her coat and mittens and hat, finally settling her in to a chair to wait for her appointment. While Dad went to use the bathroom, Mom saw another waiting patient reading a soft cover book, and she asked aloud, "what is that you're reading?," but the woman pretended to have not heard, and I hushed her down. Waiting is the hardest part, and Mom always wants to chat with other people in the room.

Finally, Dad reappeared and the very friendly hygienist called her in for her appointment. Dad was able to go along, and I was alone for forty minutes or so with my book, the a-little too loud soft pop rock (playing requests for Valentine's Day, no less), and one or two waiting patients. I buried my nose in the book ("Lost In Translation," Nicole Mones) and the time went by easily.

Mom's appointment then was finished, and Dad proudly told me that "she did pretty good in there" and that she had no cavities. That was a relief. Then we had to wait some more. We stalled by putting on Mom's coat, as it was a little chilly in the waiting room, and at last, the friendly hygienist called out Dad's name and we said good bye to him and then it was time to wait some more.

I tried to show her a magazine, she was not interested. She complained about the music, that it was bothering her. I was able to reach over and turn the radio down. Their was an older woman sitting to my left, and she was chatting with another woman friend who had just come out of an appointment. Mom listened in. "Did you hear what she said?" Mom whispered to me. "No, not really Mom."

More time passed, Mom started getting antsy. "Want to walk around a bit?" "Okay." We got up, circled the room. She looked at the older woman who was still waiting, her friend had left and so she was quietly reading a magazine. She had a large shiny gold purse, unusual for an older country woman from Maine, and Mom walked towards it and started to try and say something, looking at the woman and the purse. The woman smiled, picked up her purse, and remarked to Mom that, "Yes, many people are drawn to this bag for some reason." Mom wanted to communicate, but wasn't really able to, but thankfully, this woman had a sense and quickly summed up the situation. As I encouraged Mom by the hand to continue to walk around the room, the woman said aloud, "Are these your parents?"

"Yes they are," I replied, proudly.

"Enjoy every moment with them. You are an angel."

Mom said, "Yes, she is an angel, a God send!"

And I thanked the woman as we circled back around and said, "Oh believe me, I do. It's a blessing."

And she smiled knowingly and said, somewhat softer towards Mom, "You are very lucky to have a daughter like her."

Then I felt bad that I couldn't be her daughter, too, right then, but naturally, I was distracted with keeping Mom from walking into the work rooms of the dentist.

Finally we were alone in the room, and we took a new seat at the large couch. Mom complained of being tired. I told her to shut her eyes. She did for a few minutes, then I distracted her for another few minutes with a magazine on birds, featuring hummingbirds. We looked through that, looked at the glossy photos of birds and flowers and gardens, her attention wavering after a few seconds, so I'd move on to the next page to keep her down and distracted.

"What time is it?" she'd ask.

"Um, let's see..." stretching time as long as I can, reaching into my coat pocket to grab my little cell phone, checking the time at last, "it's two twenty-five."

"Oh God!!"

Like it's the end of time, the end of the world. I'd rub her back then, tell her to close her eyes, it won't be too much longer now. However, Dad's appointment was a bit longer than Mom's.. he had an issue, and it was dragging on. Finally, Mom called out to one of the receptionists... "How long? Can you find out how long it's going to be?"

The two receptionists had been witness to our entire time there, of course, so with a smile, the one she asked said, "No problem, I'll find out," and was back shortly with the answer, "Just a few more minutes now."

I couldn't have said it any better myself! Welcome to my world.

Mom was in agony, she started saying out loud, "Oh God, Oh God!" She almost lost it. We got up and walked around the room a few more times. Finally, Mom started pulling me into the patient room area... I looked pleadingly at the friendly receptionists.. "Is it okay if we take a quick look?"

"Oh sure, go ahead!" And no sooner did we turn the corner when we saw Dad standing up, folding up a piece of paper. He didn't see us. Mom quickly pulled me back. She did not want Dad to see her looking for him.

At last, he appeared. Dad checked out. Back up the dark, carpeted stairway we went, out to the icy parking lot, buckled into the car, and on the road for home. The hardest appointment of the week is over, I think. Today, we visit the primary care doctor.

Hitting Close To Home

I have an extra hour this morning. The choir director at Dad's church is on vacation this week, so they are not rehearsing. Dad will just go in for the service, and I can go over a little later. Of course, he offered to take her to the service with him, but she said something about not being able to get up to "dress code." In other words, she looks pretty crappy, compared to usual. It's hard enough to get her to bathe once a week with our helper, Maria. Towards the end of the week, her hair and clothes get pretty messy. So, she'll stay home, but a couple of the lady's from church are coming over a few hours after church to hang with her, and that should be nice.

This is going to be a tough week. Monday (with some snow coming), Dad and Mom have teeth cleaning appointments at the dentist. Dad has called ahead to let them know of her condition, and they said it would be okay if Dad sat with Mom while she gets her teeth cleaned. I will come along, too, and sit with Mom in the waiting room while Dad gets his teeth cleaned. That should be interesting. We may bring along the mild sedatives in case she gets too wound up.

Then, Tuesday morning, she has her appointment follow up with Dr. N., her primary care physician. I'll go along with them for that, as well.

Wednesday morning, Maria comes for bath day, and then Mom has been invited to a lady's luncheon with the gals from church. She has said she would attend, but who knows, by then, she may be too exhausted and refuse to go. Actually, she's exhausted all the time, even though all she does is rest. She's tired because of her brain.

We finished reading "Sons And Lovers." The end was sad when the mother died. It dragged out for pages and pages, and when I was finishing up that chapter, and we were heading into "sundowners" time, Mom was getting really agitated and upset. But the next day we finished the book, and it was actually me that was tearing up while I read aloud the burial of the mother. Hitting damn close to home, there. Mom stopped me and said, "Are you crying?" And I said, "Yes, so sad. The mother has been an important character in the whole story, it's sad to see her go." "Yes," she replied, and then I quickly read on and finished the book.

I took all of Friday off, as we had to put our old cat to sleep that day. It came up quickly and as a surprise, with two vet hospital visits, the second visit to have him euthanized. I was pretty teary-eyed and sad and tired from all that, so I thought it best Mom didn't see me like that. She was very sweet on Friday night and called to offer to have she and Dad take us out to dinner that night. That's the kind of thing she would have done in earlier times, my partner noted. Of course, we declined, thanking her for being so sweet. Honestly, we were too emotionally drained, and going out to dinner with Mom would have been even more tiring!

Yesterday afternoon, as her "sundowners" kicked in, she once again made a comment about feeling like it was "time to go home, to Mom and Daddy's house." Dad calmly replied, "No, Kate is going home to her house and we are staying here in our house." Then Mom said, "Oh, it must be the disease." She goes in and out of the two realities.. the one we know, and the one that the Alzheimer's presents to her.

A girl friend of mine just lost her mother on Friday to this disease. She was with her right up to the end, and she is full of love and humbled by her mother's strength. Her mother's death hits close to home for me, too. I am constantly reminded of how lucky I am to have these moments with my mother and my father, the good and the bad.

Celebrating The Small Wins

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

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

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

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

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

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

More later...

Exhausting

We've survived the big snow storm.. two days of snow, really. Four inches or so on Tuesday, then the big fourteen inches or so yesterday. I spent some time with Mom yesterday. She spent most of the day on the couch, as usual. Seeing the snow swirling outside of the window made her anxious. Many times she repeated questions. "Is he going out?" "When will he come back?" And I'd have to reply that he wasn't going anywhere, that he is home.

Dad told me today that he broke down and gave Mom one of the prescription mild sedatives last night. He just could not get her to settle down. Then she retired very early, before eight, and though he tries to keep her up a little later, in a way, I'm sure, it's a relief when she goes to bed, because she is so demanding and tiring to be around.

This morning, we awoke early to begin the big snow clean up. Our angel of a neighbor had done the bulk of our driveways last night, which made our work much lighter, though still, there was a lot. We walked over next door, and while I cleared around the porches and walkways, he skimmed off the top of their driveway with the big scoop. Dad had taken off early to get money, pills and food. When I was done, I went inside to wait with Mom for Maria, who was coming today instead of yesterday during the storm. Once she arrived, I said goodbye and went back to my house to do more snow clearing, then I cleaned up myself and gathered up my redeemable bottles and got my grocery list together.

After running my errands, I went back to sit with Mom for a few hours. They were both napping in front of the television when I got there. Poor Dad. He's got to be exhausted.

Mom asked me if I could read to her from our book, so after I moved the washed load of towels and sheets to the dryer, I settled her into her chair and I began to read. Within ten minutes, she asked me to stop.

I resisted, and continued to read a little more. But then she asked me to stop again. So, we got up, walked around a little bit. Then she wanted to lay on the couch. So, I settled her into the couch, and sat quietly in another chair looking at a book. Five minutes later, she called for me.

"I'm here, Mom."

This was when she said something like,

"I just feel like I need to get going."

"Going where, Mom?"

"Home. I need to get home."

Instead of trying to correct her this time, I just said, "Oh, okay."

So, I went to her, she had half risen from the couch, and she said,

"It's getting dark out."

It was two o'clock in the afternoon, and the sun was shining brightly.

Then she laid back down, and I tucked her in again.

"Read to me?"

So, I took up from the book again, speaking as softly as I could. We got through a few pages, when she wanted to get up again. She repeated the comment about feeling like she needed to get home. She began to arise again, so I offered to take her downstairs so we could see what Dad was doing (though I suspected, correctly, that he was trying to nap on the little bed in the basement.) We waddled down the stairs, and she complained about how cold it was down there. Then she wanted to lie down with Dad on the little bed.. so I helped her settle into the bed next to Dad, and threw a blanket over them. I went back upstairs.

Not even eight or ten minutes later, I heard her panting as she came crawling back up the stairs. I suggested maybe she was resting too much, maybe she'd like to walk around a little. We walked around the table, through the kitchen, into the bathroom, through their bedroom, back around the table. All the while, she is lurching, panting, with a distant look in her eyes.

Finally, she wanted back to the couch again, this time switching directions and facing me while I sat in a chair. I picked up the book again and I was able to read uninterrupted for a good thirty-five to forty minutes. She had her eyes closed the whole time, but I knew she was listening. Many times, I have to explain again to her who was who in the story. Finally, I stopped, getting tired, and remembering that I needed to retrieve and fold the laundry out of the dryer. She wanted to help, so I told her to stay there and I would bring it upstairs and we would fold together. Even this is a big, confusing deal to her, but we did it.

Dad came up again. I tried turning on the television again, but then Dad suggested we turn it off. Dad laid down on her couch, I suggested to Mom that she tuck him in, like he's always doing for her. She got a little snippy about that, but she did it. Then she sat in her chair, and Dad and I tried to engage her in a little light conversation. Mom kept bowing her head, keeping her eyes closed.

By the time I left, Mom was back on the couch. I said my goodbyes, and I asked her to "be good."

"I will."

Like that means anything. Sigh. Oh well. At least I can leave, Dad is twenty-four seven. It is exhausting. Tomorrow is another day.