Happy Saturday morning to you. The cats just pounced on me to wake me up and feed them, so here I am. Damned cats. They literally jump on top of me while I am sleeping. Very annoying.
You may have noticed that I haven't written much lately about Florence, my mother-in-law. In April, we took her to a local Alzheimer facility, where everyone in the place has the disease to some extent. She is kept busy there with activities, medical staff is on duty 24/7, and the people get more one-on-one attention than they would in any regular nursing home environment.
She's been thriving there, returning to her more normal self, her posture has improved because she walks all along the corridors holding the railing, every day, for exercise, and she seems to feel at home. When a person has Alzheimer disease, it is wicked and evil, because it takes that person away from you. It leaves you with an empty shell of a human, someone who can no longer talk, think, or reason. It leaves you with virtually a vegetable, someone who has no clue about anything anymore. And for that to happen to such an intelligent, take-charge, proactive person, really is heartbreaking.
Flo used to be an OR Nurse, and for quite awhile she has been assuming that role once again in the facility. She helps push people in wheelchairs. She helps feed them if they need it. She keeps them company when they feel lonely, she told me. Florence needs to be needed, and this place gives her that. We have been amazed at her progress since being in the facility, and all the reports we receive have been good ones.
However, the other day, Flo's evil twin showed up for the first time. She was "the nurse in charge of this meeting," and became angry when someone wasn't paying attention, so she yelled, called people names, and started to hit people. This is NOT the normal Florence, this is the disease. She re-lives past situations in her head as though they were really happening now, and if the scenario she remembers does not go as it should, she becomes angry and upset. It's like a desperate attempt to remember a part of your life, and try to re-live it, only to have something go wrong from what you remembered it as being, and feeling upset when you realize that you'll never get that memory back exactly as it happened before. This happens constantly.
The hardest thing for us, was trying to figure out what the HELL she was doing or talking about, some memory that she had would pop up out of nowhere, and we had to play along with it as much as we could, while trying to figure out where the hell this came from and why. Something triggers it, and it changes every time so you can never really pinpoint it or plan for it. Every day is a brand new snafu.
So she was redirected by the nurse at the facility, taken to a quiet place and told to calm down while the real nurse "took over the meeting for a minute." She seemed fine with that. But the other big thing about Alzheimer disease is the short term memory is gone. It doesn't exist anymore. It has been killed inside the brain, and cannot ever be regenerated or fixed in any way. So whatever you say to her, is gone within a minute or two. And by "gone," I mean permanently and totally erased.
This is, sadly, the reality of it. Kinda funny, (the photo anyway), but the real disease most definitely is not. But here's the reason I'm telling you all this: I visited her yesterday, I had planned to take her out for lunch. I got there at 11:45 a.m., only to find her laying down on somebody else's bed. Lunch was being served for her already, so I spoke to her for a few minutes and told her I would come back later, after she ate her lunch and took a nap. Two hours later, I returned. She was being led to the activity room to listen to a singer/musician play music and sing old songs "Don't sit under the apple tree, with anyone else but me..." stuff like that. This was supposed to start at 2 p.m., I got there at 1:40 p.m., but they had already set up and were starting the program.
I walked in, and she looked exhausted. I walked her to her bedroom and suggested she take a nap. She apparently hadn't had one after lunch like I thought she would. She was all weepy and like a child, asking me "why her son threw her away like this," and "why nobody loves me anymore," and "what's happening to me," and begging me to come back later because she is lonely and scared a lot.
Now, like a child, an Alzheimer patient knows exactly which buttons to push, and how to tug at your heart strings, but they are deliberately manipulating at the same time, as part of the disease. The literally revert back to childhood in a lot of ways. One man was walking down the hallway, for instance, with his spring jacket on. It was 98 degrees here yesterday. The nurses' aide who walked by him asked where he was going, and why he had his coat on. His reply was, "I'm going outside to play and my mother wants me to wear my jacket." The nurses aide told him that it was very hot outside so he really didn't need his jacket, and maybe he should wait a little while before going out to play, or he might get sunburned. He took his jacket off and said, "Okay, I will wait a little while." And then instantly, that whole conversation is gone from his mind, and he's on to something else.
You can easily distract someone with Alzheimer disease, by redirecting their attention to something else going on...unless you run out of other things to distract them with, like I did. And if they are a tenacious person, like Florence, she picks up on stuff like that, and uses it against you. Ohhhh yes, she can definitely be evil and wicked, just like the disease is. Those "sweet old ladies" often turn into bitches on wheels, sadly.
So I hear her telling me that we've thrown her away, we don't love her anymore, and she wants me to come back and stay with her, because I treat her much better than they do. I scolded her and said, "Now Florence, you know we love you. You know we didn't throw you away. This place helps you a lot, more than we could, they have nurses and doctors available all the time, they keep you safe and busy, which is what you need. We live just around the corner so we can see you anytime. We come visit you a lot, but you probably don't remember. And you know they treat you VERY well here." She nodded and agreed, "Yes, they do treat me very well here."
But the rest of the afternoon, I was a mess.
I had been waiting for this evil twin, this bipolar of hers----oh yes, she has that too, and THAT is the lethal mix with Alzheimer disease that makes her nearly impossible to handle------to rear its ugly head and start accusing us of hating her, of "throwing her away," of leaving her in this place, etc., and that has been my biggest fear since day one. Her mood swings of bipolar mix with the confusion and upset of Alzheimer disease in such a way that you actually feel HATRED towards that person, even though RATIONALLY you know you don't hate her, you don't blame her, it's the disease....you still cannot help but HATE her sometimes, when she gets all bitch-mode-evil-twin like that. Then the guilt sets in for hating someone who cannot control their behavior or moods. It's really a vicious cycle of doom.
I guess the honeymoon period of living there has now ended officially, because she had never displayed the combative behavior before, nor had she ever told anyone there that she felt abandoned or thrown away by her family.
Pete and I talked about it, and he was annoyed. He was annoyed moreso at his mother than at my reaction of what she said to me. He knows her much better than I do, you see, and when she starts in with the manipulative stuff, he bristles and gets an attitude. I guess he's like every other kid whose parents do that kind of thing. I do the same thing when my mother is passive aggressive. I hate that. So I told him we really should go visit her, we should take her out more, we should spend more time talking with her because she's fading fast into the disease and we'll lose her. I want to have our photo taken together as a family with her, because she may not be around much longer to do that with.
He says, "Call the nurse there, talk with her about visiting tonight. See what she says." So I did. I think he knew what her answer would be. The nurse (with a smile in her voice), told me that the conversation was gone out of Flo's head, she woke up from a nap and seemed to be a new person, happier, more relaxed, and that, like any child, she knows how to push my buttons and play on my guilt. She said I shouldn't let her get to me. She said that she's busy with activities, she'll have dinner soon, then bedtime, and she won't remember that I promised we would come visit tonight, so I shouldn't beat myself up about it, let them take care of her and she'll be fine.
It was like a huge weight taken off my shoulders. I asked her how often we should visit, what was good for her and what was too much or not enough. She said, "Play it by ear. Just call ahead and get a report on how she's doing first, and you'll know." But it just feels like we're helpless about the whole thing, you know? You don't really KNOW what's best for her, whether what she said is absolutely the truth of how she feels, or if she is just repeating something that someone else said in a conversation, or if she's just making it up to cause my buttons to be pushed and make me feel guilty. You just don't KNOW what's real and what's not, and that's the hardest part of figuring out the disease.
Part of me wishes she would just pass away in her sleep one night, to avoid anymore awful Alzheimer progression, because it gets worse from here. Is that awful of me to wish such a thing? I want her to be peaceful, and not endure the confusion and the helplessness and the fear of it anymore. She knows something is happening to her, she knows she's not who she used to be, she doesn't know how to get that person inside of her back out again, and she feels overwhelmed and confused by it.
During those times, when she asks me what is wrong with her, I talk to her like she's a nurse. I tell her, "I am going to explain it to you as a Nurse, okay?" and she clicks into that mode to some extent. I tell her that she operated with many doctors on the brain during the 1950's, when brain surgery was brand new, and she should know that some parts of the brain go through changes as a person gets older. I explain it to her like she's a child, but I am direct, succinct, and she understands. I tell her that her memory section in her brain is no longer functioning properly, her short-term memory is damaged, she has a disease called Alzheimers, which causes her to feel confused and overwhelmed and scared a lot.
I tell her what she needs to feel better, keeping busy, being stimulated, remembering things as much as she can, working on memory games, doing puzzles, etc., to keep her brain engaged. I tell her that the disease will progress, and at some point, she will lose the ability to talk, and eat, and reason, and think. She gets more upset at this, obviously, as anyone would, but I don't sugar-coat it because she's a nurse, she is NOT a child, and she can take it. She wants the truth. She then tells me she doesn't want to progress in that direction with the disease, and I tell her we are doing all we can to prevent it from happening, technology has come very far since the 1950's in this area, and the medications she takes and the activities she does really helps her a lot to avoid such a fate. I do NOT tell her that it is unavoidable.
She sometimes asks me if surgery is needed to fix this problem in her brain, and she knows several doctors (from the 1950's) who could do it, that she trusts. I tell her that she is 90 years old, and would she ever operate on a 90 year old person in the brain back then? "No, it would be too risky," she'd say. So I would explain that it's too risky for her, they won't do it, because they have other ways of making her life better and this facility she lives in now provides her with more quality time with people all around her, WHO ALL HAVE THE SAME DISEASE SHE DOES. She thanks me, afterwards, and says, "I wish everyone ELSE around here would tell me these things more often, like you do, because it helps me understand." So, I make sure I tell her these things over and over, when the subject comes up.
But, as you can imagine, it drains the energy right outta me. It leaves me feeling hollow inside. I'm trying to do the right thing with all this stuff, but it's hard to know what is right and what isn't. Some Alzheimers patients probably couldn't take that kind of conversation, it's too real, it's too scary. But she was an OR nurse and has seen some pretty scary stuff in her day, in the operating room. I just reassure her that we are there to help her, to take care of her, and this facility is an extension of our care for her. We hired them to help us with her care. She seems at peace with that explanation.
.....I just don't know how often I can go through that. I don't know how often I can visit her without being a total mess myself. I don't want to abandon her. I don't want to leave her feeling all alone and scared and "thrown away." The tug of war between my own limitations and her needs, is the hardest thing I have ever had to deal with in my entire life. I mean, sure, 9/11 sucked hairy sweaty balls and THAT was the hardest thing I have ever had to deal with in my entire life, but THIS...well, this is something you can't really get over...and it took me a very, very long time to come to terms with 9/11. I'm STILL not quite over that. I don't know if I ever will be "over" that.
But I hope and pray that you will never have to deal with Alzheimer disease. Glenn Campbell was just recently diagnosed with it, and he already cannot remember some lyrics of his own songs. Ronald Reagan had it, and was a basket case by the end of his life. The myriad ravages of this disease are difficult to comprehend, deal with, and handle emotionally. I hope you'll never get it, Stephen. But apparently it's affecting one in every four or five people in our world, I think I read somewhere.
Sooooo......here's my suggestion....you're 63 years old, you've still got a lot of time to PREPARE for such a thing, by scoping out facilities near you that are Alzheimer-ONLY facilities. You wouldn't function well in a regular nursing home if you had Alzheimer disease, so skip those completely, because they are just glorified babysitters. Call around, go take tours of the facilities--in the EVENINGS, when the "car salesmen" administrators are not there and you see the REAL caregivers at work, and choose a place that specializes in Alzheimer care and treatment. You can also contact a social worker who will help with your needs, and find the right place that fits you. Once you find the place you prefer, be sure to have it specifically written in your will, in case it should ever happen to you. And if you have a "living will," make sure that people close to you have a copy of it.
Maybe your daughter will care for you....for awhile. That would be ideal, sure, with your grandchildren around you to talk to and remember things with. But it would only be temporary. It would be very difficult on your daughter, though, and eventually you will have to be placed into a facility. Flo was always worried that she was "a burden" on us...again, to push our buttons and play the guilt game, I'm sure, but it worked on me like a charm. I love Flo, with all her craziness, but it does get to me, I do take it literally and to heart, and it drains me emotionally as well as physically.
I'm just letting you know these things because it COULD happen to you. We just never know. If you are noticing some memory loss, if you're not able to remember lyrics to the songs you've written, or how to do something simple that you've done a million times before, go get yourself checked out at a doctor, a specialist, who deals with Alzheimer disease. Find out if you're at risk for it, and what you can do to avoid it as long as possible.
If I ever get it, I told Pete already, to JUST SHOOT ME. I'll pardon him, forgive him, and write up anything in a court of law that can be used to get him out of jail for doing it. Just SHOOT ME.
You have an advantage that most other people don't. You could simply pick up the telephone and call Glenn Campbell directly, to talk to him about the care he is receiving, which is probably the best care that money can buy. He may not know who the hell you are, though. He may not even know much about the care he's receiving. His wife and children would, or whomever is there doing the care for him. Find out how you would deal with such a thing, if it should ever happen to you. Prepare for it.
I don't ever want to know if you have it though, so keep it private, like you do most everything else.
You would break my heart worse than just about any other human being on this planet if you ever came out to say you have Alzheimer disease. My husband, my mother, my sisters, my best friend...they would all kill me if they ever had it. You, though....you would seriously break my heart in a huge way.
Anyway, I just felt like writing about it today. I hope you have a good weekend, and I love you lots.
Bye for now.
---Rebecca (the serious-minded person once again). My moods change quite often, huh?! Well, it's a crazy life I lead, that's for sure. On one hand, I'm all serious. On the other hand, I need to be wacky too....I guess it's finding that healthy balance between the two extremes that keeps me going.
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