Home

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

April 8, 2011

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

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

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

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

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

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

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

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

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

Another Day With Mom

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

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

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

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

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

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

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

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.

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...

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."

Paranoia

Thankfully, Mom was less depressed yesterday (Monday.)

She was in her usual chair with the television on when I got there at about ten thirty in the morning. First, I suggested we take a little walk around the half melted driveway, and we did that for a good twenty minutes, the sun shining and no breeze to speak of.

After Dad went out to run his errands, I asked her again if she would like me to read to her. I had asked her on Sunday, but she refused. Yesterday, however, she agreed to it, so I shut off the television, she slumped down in the chair with her eyes closed, and I took up part way through the Edith Wharton book she had given up on weeks ago.

The writing in the book is filled with fancy words and long sentences and many parenthesis and asides, but eventually, I got into a nice rhythm with my reading aloud, and occasionally Mom would blurt out the correct pronunciation or stop me to ask for a clarification on who was who. This was one of the calmest I have seen her in a while.. she closed her eyes (and even said to me, "excuse me for closing my eyes," and I replied that that was quite alright with me) and seemed to follow the stories. We even had a laugh or two, but she did say that it hurts her to laugh.

Dad returned home with a few things from the store, and I helped them prepare lunch. I went back home for a couple of hours, thinking I could get some things done for myself, but in reality, too spent to do much but laze about on the internet. Monday's are always a sleepy day for me.

Around two thirty in the afternoon, I went back over so Dad could take a walk. Mom asked if I could read to her some more (yeah!), so after I prepared a small pot of tea and gave her half a cookie, we settled in for some more reading aloud. She was once again enjoying herself when the phone rang, and I got up to answer it.

She overheard me take the message and the woman's name. I wasn't sure who it was, but Mom was convinced it was somebody calling about "Mom sitting," a very touchy subject at this point. Earlier in the day, Dad had spoken on the phone with a woman he was referred to by our neighbor who could possibly do some respite for Dad and me, and Mom overheard this and became very upset by the whole thing, yelling angrily and no doubt, howling.

After I took the message from the woman, I tried my best to distract her from the call, but she was clearly agitated again. I went back to reading for another twenty minutes or so until Dad came home. We told him that the woman called and would be calling back, and he said that she was a woman from an expensive respite house in a fancy town an hour away from here... Mom's sister had slipped a piece of paper with the info on it to Dad at Thanksgiving, so he followed up on it, only to recognize that it was not the right place for them.

However, this did not stop the woman from pushing for another "sale," and Dad, being polite, took her second phone call and went down stairs to speak with her. I wanted Mom to stay upstairs, but she insisted that she go down to listen in. Paranoia is at it's peak here. I walked down with her and asked her to be quite so Dad could politely tell the woman it wasn't right for them, and I managed to distract her for a few minutes in the downstairs bedroom ("Oh, look how nice and neat and clean your eldest son left the bedroom before he went home!" "Mom, where did you get this dresser, anyway?" "Where did this little mirror come from?" and she'd answer me, however...)

She went back out to where he was speaking on the phone at his desk and yelled out a few nasty things, and eventually he hung up and asked her not to do that... then he told her he needed to do something...

She went back upstairs, distraught, and I made Dad hush for a minute and wait, then we both came up. I gathered Mom in my arms, I had Dad come over and we hugged, the three of us, as I explained to Mom, again, that we are on her side, we are trying to take care of her, we won't do anything to hurt her, we won't do anything that she doesn't want.

Of course, I had to lie a little. We don't know what will happen in the future, and at the rate her mind and body are failing, we just can't say for sure what we will have to do. But at that moment, in the three way hug, and the reassurances from Dad and me, her agony and anxiety were again temporarily eased.

We three sat for a few more minutes, then we made a big salad together for their dinner, and finally I went home to my ever understanding boyfriend and my big glass of merlot.

Later that night, Dad called and asked if I would be willing to escort Mom to a ladies group dinner she was invited to this coming Friday night. The ladies know what's up, and she had a ball having a luncheon with them at one of their homes a few weeks ago.. despite the drive over being a nightmare for Dad. Once she was in the presence of her friends, however, she did have fun.

Naturally, I agreed to do it, as long as Mom would still be up for it by Friday. One can never know. Flexibility...  I over heard Mom speaking in the background as Dad and I made the plans, and she seemed happy that I agreed to go with her.

Sigh. Which leads me to this morning, when I just went over to pick up their trash and recycling to make a dump run. Dad was in the basement at his computer, Mom was on the couch looking at a New Yorker magazine. This morning, we all lost power on our road for about two hours... Luckily, they had already had coffee and breakfast when it went off, and perhaps this was why Mom was still "reading" even though the electricity was back on.

She seems bound by worry today. It's Tuesday, and it's been six days since she's bathed. She refuses to change her clothes all week, and she dreads bath day with "Marena" (Maria), but she did admit that she does feel better after her bath and fresh clothes. She looks so frail, her hair is disheveled and needs to be trimmed and washed, she smells. And I can't do anything about it.  She won't let me.

I am heading back over there shortly. I am going to try and read to her some more. Every word I write, every word I read, gets us closer to the end of this god awful, sad, sad story.