Friday, February 25, 2011

Toothpaste

Something as simple as toothpaste can become a really big deal to an Alzheimer's patient.
I bought some new toothpaste for Mom that was in a pump, not thinking it would totally confuse her. I was simply thinking what nice toothpaste it would be for her, since it wasn't strong, would be gentle on her teeth and even foams when she put it in her mouth. But I should have known better.
When she finally used up her old tube of toothpaste, I unwrapped the new pump version and even put some on her toothbrush. She seemed to like it. I put it on the counter conveniently located close to her toothbrush, or so I thought.
The next day I asked Mom if she liked her new toothpaste and she looked confused. We went into her bathroom together and instead of her new toothpaste, there sat a tube of Vaseline. I was so upset, not at Mom, but at myself and the thought that it could make her sick. I removed the Vaseline into a small basket on her bathroom counter and replaced it with the new pump toothpaste.
That night, I again asked about the new toothpaste and Mom seemed confused again. So I checked it out, and sure enough, there was the tube of Vaseline. I couldn't believe it. I replaced it again with the toothpaste pump.
The next day when our caregiver was here, I asked her what I should do. She reminded me that the fewer choices Mom has in the bathroom, the better, and pointed out that Mom can't remember anything with a pump, except perhaps hand lotion, which I think she also used as toothpaste, and that I should get her a tube of toothpaste. She also suggested that I go through her entire counter and remove anything that might be harmful to Mom if she ingested it. I cried because this was once again, so not like my Mom.
That day, I bought Mom a tube of toothpaste and replaced the Vaseline with it. I even put some on Mom's toothbrush and placed it next to the toothbrush. Thinking I had this whipped, I relaxed a little, only to find out that I relaxed too soon.
I went into her bathroom today, and to my shock and horror, there was the tube of Vaseline where the toothpaste should have been. The toothpaste was tucked neatly in her little basket. I removed the Vaseline to a drawer under the counter and then sat down with Mom to talk to her about it.
Mom hasn't been feeling well the past couple of days and I just couldn't figure out why. Now I believe it was her using the Vaseline for toothpaste that made her feel ill.
I talked with Mom, whose reaction was much like that of a small child. At first she denied it, then said she was sorry and would try to do better. I explained that her actions scared me because I am so afraid she will make herself sick.
We agreed that when she gets ready for bed and when she is doing her morning routine, that I will be in the bathroom with her to make sure she uses everything properly. She hesitated when we were talking, but eventually agreed that she would let me in the bathroom with her. I also found that she is locking one of the doors to the bathroom and when I asked her why she locked the door, she said she locked it when she was alone. I reminded her that she was never alone, but she acted like I wasn't telling the truth.
I feel so selfish because I thought, "Great, now I will have to give up part of my evening to help Mom even more," and then I just want to slap myself because it's not that I mind helping Mom, it's that I like to have some time to myself and that seems to be getting less and less frequent.
And this was yet another lesson I learned about Alzheimer's patients. How I HATE this disease.

Saturday, February 19, 2011

Declining little by little

I am so frustrated. Why can't our most intelligent doctors in the world cure this awful disease? We live in  the most medically advanced country in the world, and there still is no cure for Alzheimer's. WHY NOT?
I see Mom decline a little every day and there's nothing I can do about it. Now she can't tell toothpaste from hand lotion. Most mornings, she must ask me how to take a pill. She can't remember a conversation from the time she hangs up the phone until she tries to tell me about it seconds later.
I see her get so frustrated because she can't communicate with me she starts crying. And cries and cries until her eyes are red and puffy. My "old" Mom never cried like this.
And yet this is the new norm.
Almost every night right after supper, Mom cries. When I ask her what's wrong, she can't tell me, or says she doesn't know. It breaks my heart to see her like this. I want to comfort her and I don't know how.
And yet, just when I think I've lost Mom completely, she says something that my "old" Mom would say.
I was feeling really bad about Martha not letting me help plan her birthday party and Mom came up to me, patted me on the shoulder and said, "Sally, there's no one with a bigger heart than you. You would do anything for anybody." I was so touched, I almost cried, but instead I said, "Thank you, Mom."
I had a good day today because I got out of the house on a bright, sunny, although chilly, day. I bought flowers that will bloom this spring and summer and even a pink jasmine plant. And while I was shopping I realized I didn't need to hurry because a friend was with Mom.
But then I came home to the same old crap. Mom started going through the mail and I asked her what she was doing as she opened an envelope. She replied she was opening her mail. I asked her to not move it off the table until I had a look at it and she became indignant and reminded me that after all, it was her mail. I told her I understood it was her mail, but I paid her bills now and I didn't want any bills misplaced. Then she started crying, which made me feel guilty. And she left the room.
I had to leave the room too, because I just can't take this at times. Even though I had a break this afternoon, I don't feel like it. I hear all these voices in my head saying I should be ashamed of myself for not being more patient and to just work around these situations. But I'm tired. I am so damned tired. And yet, when I try to go to sleep at night, I can't. I worry about Mom and what the future holds. I worry about money and if we can get along. I worry so much that I'm not getting to sleep much before midnight.
I know I must trust in God because He is taking care of us. He has already seen us through some very tough times and I know He will carry me through all this.
It's just that I get so frustrated because I can't physically make this better. I can't take her to the doctor who will give her a shot and, "Poof!" the Alzheimer's is gone. It's not the flu, it's not a cold, it's not that simple.
God help me and those folks who have Alzheimer's. Pray for a cure.

Sunday, February 13, 2011

My sister must be really scared

After two days of not knowing what my sister, Martha, was thinking about our joint counseling session, she informed me tonight that she isn't going. I'm really not surprised.
But when she actually said the words, my feelings, along with my hopes, were dashed.
After praying and talking with two friends who listened to me ramble on about how I felt, I decided not to confront Martha about her actions yesterday. It's just not a battle I want to fight. And after her decision tonight, I don't think I'll talk to her about any more counseling.
I told her that not going to counseling was her choice, more of my "psycho-babble" as she calls it, and that maybe some day she might change her mind.
This is the second time I've offered to go to counseling with her and the second time she has turned me down. I don't think there'll be a third offer on my part.
The first time I offered to find a counselor and schedule some sessions was after Martha's messy divorce from a real lunatic. She accused me of having an affair with him and all kinds of nasty stuff, all of which were untrue, except the part that I absolutely abhorred her ex-husband. After a horrible argument on Christmas Eve of all times, I asked if she would go to counseling with me and we could work on our relationship. After making all kinds of excuses, she finally refused and I hadn't offered until now.
Because of the choices she's making about handling Mom's condition, when it finally hits her, I'm scared of how she will cope. But, you know, she's going to be 50 years old in about a month and I think she's old enough to make her own choices.
In the meantime, please pray for me that I don't become bitter toward her and don't resent her.
And I still need to choose my battles, because I know there will be more.

Saturday, February 12, 2011

Picking my battles

I just can't get a grasp on what Martha is thinking or doing or feeling.
For the first time in a long time, she was actually nice about my birthday. She even presented me with an iPod, quite a surprise.
As I waited for the other shoe to drop, it eventually did.
I called her last Wednesday to discuss a couple of things: her 50th birthday party and going to a counseling session together. After going over details of her birthday, I got up enough courage to ask her about the counseling. After making a couple of excuses, she hesitatingly agreed to attend. But then, she said she probably couldn't come over this weekend to give me some time away from home because she had all these other things going on.
First I wanted to ask her if this meant she wouldn't see Mom at all this weekend because it would be a week since Martha has seen her - at her house during my birthday party. Then I wanted to scream at her that giving me time away from home should be a priority with her because it's the only time I get out of the house to relax. But I didn't say either one. I think I just sighed and said something like, "OK."
By Friday, after my morning session with my counselor, I was ready to call her and ask her to make time to come over here for a couple of hours. Just as I was about to call her, Martha called me. She said she was going over her weekend schedule and decided she could come over about 10 a.m. Saturday, which would give me about three hours to do some errands. Marvelous! I was so excited. I got my grocery list out, decided I would go to a couple of garden shops just to see what they had, I could donate a couple of used file cabinets to Goodwill, and then have lunch somewhere, depending on where I had a coupon. I was really looking forward to Saturday morning, when I could actually take my time to enjoy myself a little. Then one shoe dropped.
During our conversation, I told Martha that my counselor made arrangements for us to meet with her next Saturday afternoon and that a friend had agreed to stay with Mom during our session. Martha said she had been thinking about it and decided she may not go. My heart dropped down to my knees. She continued by saying that I already had a relationship with the counselor and she just didn't feel comfortable. I asked her to think about it anyway and she said she would.
Is she afraid of what the counselor might bring up? Is she afraid of being confronted about something she would rather just ignore? Who knows. I think she is afraid.
But it made me angry and hurt that at first she would say she was willing to go to the counselor with me and then say nope, changed her mind and probably will not go. I think I am more hurt than angry.
And then the other shoe dropped this morning.
Martha said she would be here by 10 a.m. I slept in, and then hurried around here to get everything ready. I took the dog outside, made Mom's breakfast, made the dog's breakfast, took a shower, got clothes out of the dryer and was ready for Martha by 10:05 a.m., a miracle. And then I waited. And waited. And waited. Until 10:30 a.m.
Martha finally arrived at 10:30 a.m. with a latte in hand. I asked her about being here by 10 a.m. and she said, "I told you 10 or 10:30." I said I had made plans and, since she had a hair appointment at 1:30, that only gave me two-and-a-half hours to get all my errands done. All she said was, "Oh, sorry." I got out of here at 10:40, because I had to tell Martha about finishing Mom's breakfast, how many pills she got in the morning, etc.
As I pulled out of the driveway, I was so hurt and angry. She just doesn't think that I make plans if I ever have a free moment. I got my grocery shopping done, got rid of the file cabinets that had been banging around in the car for almost a week and went to a local drive-in because I didn't have time to actually sit down to have lunch anywhere. I barely made it home by 1 p.m. Martha did help me unload the groceries and then she was off to do her social outings for the weekend.
I am thinking about calling her tomorrow to talk to her about this. I miss going out in public. I miss going out to shop, even though I don't have any money, it's nice to look at things. It's just nice to have time alone and not think about Mom's condition for a while. But Martha seems oblivious to that and I need her to recognize that. The more she doesn't, the more hurt and angry I become and I don't want to feel that way.
I just don't want to fight, but this might be one battle I might have to fight anyway.

Friday, February 4, 2011

Crazy? Not yet

I had my second of six personal counseling sessions today. The counselor comes to the house, so I don't have to find someone to be with Mom. She comes early in the morning while Mom is still sleeping so we can talk freely.
The main thing is that she is reassuring me that I'm normal. That all the emotions and feelings I'm going through are OK. That is huge for me because at times I feel like I'm going absolutely crazy. And I might some day, I'm just not there yet.
Today we talked a lot about Martha. I told her I hesitated asking her to talk about Mom because I don't want to fight. The counselor agreed to be the intermediary, IF Martha agrees to come to a session. That's a big IF. I have asked Martha before to attend counseling to work on our relationship and she refused. But that was some time ago and perhaps she has changed to the point of being willing to go now.
I also celebrated my 55th birthday yesterday. I had to tell Mom that it was my birthday. That was really weird. And, in a complete act of unusual kindness, Martha offered to stay with Mom while I went out to dinner. I really don't like to go out at night any more, but I took her offer and enjoyed some delicious Chinese food. Mom wanted to go with me and couldn't understand why she had to stay with Martha.
Today (February 4) is my cousin's birthday and Mom has always called her in the past to wish her happy birthday. This day, however, she didn't recognize my cousin's name and absolutely refused to call her.
Alzheimer's is such an illogical disease. I just can't figure out how Mom's thought process works and that process varies from day to day.
Tomorrow we celebrate my birthday with some friends at Martha's house. I hope Mom can interact socially OK with the other people. Sometimes she's OK with them and sometimes not, so we'll see.
My birthday this year was just weird. I really don't want to celebrate another birthday like I had to this year. I guess I'd really like to celebrate it for real. Maybe next year.
I know this is where God wants me to be and I am supposed to be with Mom. It's just so damned hard.

Wednesday, January 19, 2011

Decisions

Mom is declining daily. I know this because I see little things that she never used to do and now they've become her standard.

She always says goodnight before retiring to her bed, but one night she just turned out the light. I couldn't figure out what was going on, so I asked her.
"Mom, aren't you going to tell me goodnight?"
She came out of her bedroom wearing jeans and a t-shirt. I asked why she wasn't in her pajamas and she said she couldn't find any. I had just washed her pajamas and couldn't figure out what she had done with them, so I began searching. I finally discovered them in a plastic garbage sack inside her bathtub. I opened the bag and an awful odor came from it, like poop and pee. I retrieved the pajamas, which Mom exclaimed that she just couldn't wear now, put them in the washer and got her some clean ones. And she still wasn't undressing to get out of the jeans and t-shirt. I finally got her to bed a few minutes later.

Immediately afterward, I called a friend, who's Mother has dementia and lives in a small adult home. She said I should make arrangements to take Mom to Canterbury Gardens, a local place that specializes in Alzheimer's patients. She said she took her Mother there when she refused to bathe and it worked out very well. So I talked to my sister, Martha, and we agreed to give it a try. But then God stepped in.

Mom also is refusing to take a shower. It's not that she's afraid of the water, she just simply doesn't want to do it. I talked with our caregiver and she talked with her supervisor, who changed her schedule to come three times a week now instead of once a week. The first time we tried to get her in the shower, it took a lot of cajoling, but Mom eventually gave in. Second time, not so well, she just flat out refused. So last night, I told Mom the caregiver was coming today and that she was going to take a shower and wash her hair. Period. Mom just looked at me and said OK.

After thinking more about taking Mom to Canterbury, I realized it wouldn't work and she would get more upset than I could imagine. When I talked again to Martha, she agreed and said she thought Mom just might keel over. So, we'll try it with the caregiver and see how it goes.

In all this process, though, I began thinking that this might be the beginning of Mom leaving me to live in another place. When I found out how ill she is, immediately I decided to have Mom home as long as I could. With this latest phase, I wonder how long that will be and when that time comes, how will I make a decision like that? How could I send Mom to one of those homes? I HATE them, even the nicer ones. And I know I will get absolutely NO support from Martha because she was no help when we had to put Grandma Dora in a nursing home. Of course, I'm not getting much support from her now anyhow.

Mom has been hoarding her disposable underwear. If I see them in the morning, I nab them and tuck them into the garbage, but sometimes Mom gets ahold of them first. I discovered another hiding place. When I got her clean underwear and socks, here were, tucked neatly in her underwear drawer, six to eight used disposable panties. I grabbed them and told her gently that she shouldn't put dirty underwear in with clean ones and disposed of all of them. The caregiver said this was normal behavior, along with putting tissues EVERYWHERE, which she does.

In our last conversation, Martha cried as I talked about Mom's latest declines. She said that she tells her friends that Mom's basic personality is still intact. That's how much Martha is in denial. She doesn't realize that Mom is really gone and she is nothing like our "normal" Mom. But Martha has to handle it her own way and I'm really trying to let her.

I begin one-on-one counseling next week. I hope this allows me to air some things I can't talk about with anyone and I think it will. Under this state-funded program, I can have six sessions and I bet I take up all six!!

In the meantime, when I read my Bible every night, I read about God being my Rock. At this rate, He'll have to be like the Rock of Gibraltar.

Sunday, January 2, 2011

O Christmas Tree

Taking down the Christmas tree every year usually makes me melancholy, but this year it just made me downright sad.
Maybe because I can't shake this feeling that this may be Mom's last Christmas. Maybe it's because Mom really didn't realize it was Christmas and didn't seem to want to participate in any festivities. It could be that I'm just feeling tired and sad these days.
Whatever the reason, I'm sad tonight because the Christmas tree is gone, leaving an empty space, kind of like the one in my own heart.
It is so difficult for me to realize that I will never have my Mom back again. Although I get glimpses of her every now and again, those glimpses are getting few and far between. I cry for my Mom, because I'm missing her already. It's like she's already gone from me. And in many ways she is.
The Christmas tree this year was huge and regal, shaped perfectly from limb to limb. All the lights and ornaments did was enhance its natural beauty. It was the biggest tree we've ever had in the Ousley household. I was encouraged to take photos of it, but I just couldn't do it. I felt like taking a photo would somehow be violating the tree, taking something from it. Instead, night after night, after Mom went to bed and it was just me and Gigi, I would just look at the tree from top to bottom, memorizing each detail: where each ornament was placed, how the lights twinkled amongst the branches, how the limbs were perfectly shaped and supported even the heaviest ornaments. If I close my eyes right now, I can see it perfectly.
I often do this if I really want to remember something. Like being at the beach and listening to the sound of the waves roll in. If I quiet my thoughts, I can hear those waves, soft and then loud, sometimes crashing against the shore's rocks. I don't visit the beach often enough, so I want to make the memories last. And it usually works.
So in the months to come, when I have difficult days, I will close my eyes and remember our beautiful tree and I know that will help me get through those days that I wonder if I will survive.
Thank you, Lord, for making such a perfect tree and allowing us to share it.