Sometimes you just have to admit defeat. And that's how I've been feeling for the last couple of months. Defeated. Burned out, depressed, over it...those are some other phrases that come to mind. When you're with someone 24/7 who has AD it can wear on you like a wet pair of jeans on a hot day. You get to the point where you don't think you can stand another day of it and the next day comes and somehow you just keep on plugging along. But inside you just know that the quality of the care you give suffers because of it. You go through the motions of the day. Coffee, shower, toast, pills, indoors, outside, grocery store, department store, sandwiches, puzzles, TV, music, dinner, pills, bedtime. And through those same actions every day, day in, day out, there is conversation. The conversation is also very similar from day to day. The stories are the same and have been told over and over and over. So the defeat and the burn out and the depression ebb their way in like slowly rising flood waters. Each activity we do during the day is like throwing a sandbag down to fend off the flood waters.....it works for a while but the waters still come and eventually the white flag goes up....and you begin a search for a nursing home.
I've been to four nursing homes so far. The first was no help. A waiting list and private pay deterred me from asking much more than a couple of questions. The second had a director/saleswoman who seemed bent on nothing more than filling her "beds". The third one (the third time is always a charm, isn't it?) gave me a TON of information that will be extremely useful in the future. I sat in the office of that one for about an hour and learned a lot about what I needed to look for, what kind of place Mom needed to meet the demands of her disease. They had a place in their building just for Alzheimer's patients. After hearing all about it and the steps needed to get Mom in, I was pretty sure I had found the right place. But when I toured it and watched the AD patients in that unit, I thought to myself, "this may be the place, eventually, but she's no where near that stage right now." All of them seemed to be so much more advanced in the disease. I told the girl what I thought and she told me if Mom wasn't ready for their AD wing, their facility was just one of several places in the area who were affiliated and had the Auguste's Cottages (this is the name they gave to the AD wings, named after the person who had the first documented case of Alzheimer's). She encouraged me to check on more places to find the right one for our needs. Then she told me that maybe day care was all she needed right now and gave me information about an adult day care facility on this side of town. I was just tickled to leave there and have so much more information than I had going in.
A week later I went to another nursing home. It had the Auguste's Cottage also, but it was brand new and had a beautiful courtyard, nice rooms. But again, the stages the people there were in were a lot more advanced than where Mom is. I talked with one of the admissions councilors at length about this and she proceeded to tell me that maybe what she needs now is just adult day care. She gave me a brochure on the same center I had already heard about. So I went there.
The adult day care calls themselves the Day Club. I like that. It makes it so much easier to tell her where she's going. My first visit was just me of course, and the girl I spoke with used to work in one of the Auguste's Cottages on the north side of town. They make sure everyone is busy most of the day. They do activities like crafts, exercises, devotions (it's in a church), one of them was going out to buy a Wii when I was there to get the Wii fit and get them moving...I thought that was great. And they had them making vinegar pie that day, too.
The second visit was with Mom and Stan happened to be off that day so he went along with us. The plan was to leave mom alone for a while with the rest of them and let her visit and see what she thought about it. This place also has a beautiful courtyard and she sat out there and talked with some of the other ladies while Stan and I sat inside and kind of watched through the window. She seemed ok with it. I had been telling her that I need to find her somewhere to go while I went and looked for a job. She hates to be alone and I thought this would be the perfect thing for her. I kept talking it up and just hoping she couldn't tell that I was a nervous wreck about it. I think she wasn't really understanding though because every time I said, "this will be a great place for you to be while I go back to work!"
She'd then say, "oh, you're going to be working there? That'll be great! I can see you all day."
And of course, I'd say, "I'm not going to be working there. I need to go out and find a job and you can stay there while I'm gone." And that seemed to be ok with her.
The next step was a TB test and then she could go in if that came back ok. It did and she started yesterday. The first day was only a half day, though, to make sure she would be alright. There just seemed to be so many steps to ensure her well-being and that was fantastic. But nobody was worried about mine. I was a nervous wreck. Call it Day Club all you want, I was taking my Mom to daycare. I was leaving her with complete strangers. Oh my gosh, what if she thinks I'm not coming back to get her? What if she forgets me in four hours? Uhg. I never had a kid to go through all that with and for the first time ever I was glad about that.
There are two songs, that when I hear them, I think Dad must be close. One is You Are My Sunshine. It's one you don't hear often, but he recorded it when he was playing around with his first computer and sent it in an email to all of us girls and grandgirls on Valentine's Day one year. He also used to sing it to us and the grandkids every now and then. The other one is Green Day's Good Riddance. While I always hated the name of that song, I liked the message and some of the kids liked it, too. So we played it at his funeral. Ever since, my sister and I both feel like he's around when it plays, as it does play at the oddest times.
So yesterday I was a ball of nerves, wondering how Mom would do on her first day alone at the CLUB. When we left the house I was close to losing the breakfast I fixed for her and I on her last official day of freedom from incarceration in the CLUB. I was already getting tired of that little facade. So, a mile into the trip, Green Day comes on the radio with that song. Nervous, yes....close to tears, absolutely not. Until now. I bawled like a baby behind my sunglasses and don't you know I looked over and she was toe-tapping and clapping her thigh to that music! I was a blubbering idiot and trying to hide it from her because I didn't want her to be upset, too. I wanted this first visit to be as positive as it could be. My voice cracked when I tried to tell her, "we played this song at Dad's funeral."
She got serious and said, "awe...who was your dad?" That might upset a lot of people but I'm used to things like that coming out of her....and that was all I needed to make me laugh. Not at her, but just laugh inside and straighten up. And, yes, this was definitely the right choice to make.
I picked her up 4 hours later and they were making cookies. When she saw me she jumped up and was ready to go but I told her to go ahead and eat her cookie and I sat down at the table with her. I didn't really take that as a good sign, her wanting to jump up and leave. But as I sat there, two more people came in to collect their loved ones and both of them jumped up also and were quite ready to go. One of them was named Mary. Her husband came for her and she got up to go as soon as she saw him. They said, "Mary, don't you want to eat your cookie?"
"No," Mary said.
"Don't you want to give it to your husband?"
"No." And she was gone.
When Mom and I got to the car I asked her if she had a nice time and she said that she really did. She talked about how nice they all were. I said, "well, that's good. Now you're going to go back tomorrow, too."
She looked at me and asked, "do I have to go back?"
Today she is there for the whole day. She seemed a little disappointed at having to go again, but she was fine when we got there. She wore winter clothes in there. We had to break down and turn on the air yesterday and when she got dressed she was obviously cold, so she put her turtle neck on and her pant suit. She won't hardly change clothes for me, once she's dressed so I let it go. Some times you just have to let it go.
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