I haven't been writing much, lately, here, there or anywhere. Truth is that taking care of Mom is burning me out a bit. Lately I feel like I am tired every minute of every day. I'm not sure if we're going through a temporary phase or if we're entering a new stage of Alzheimer's, but Mom has been particularly, ummm, quirky lately.
Where I have previously been able to anticipate her next move and prepare for it, she lately takes me off guard.
- I go to put lip balm on her lips, and she bits the end of the chapstick off.
- I let her smell a candle, and she licks it.
- She breaks into dance at the most inopportune moments--more often than not when we're surrounded by displays of glass.
- Her fixation with her hair and hairbrush has returned, she brushes her hair constantly, and calls me on the phone to tell me how much hair she's recovered from her hairbrush.
- I looked up this evening to find her combing her hair with her fork, while we sat eating in a restaurant.
- She wants to tell you that you are beautiful, or handsome. This sounds endearing, but strangers are very put off by it. I run constant interference, worrying that she'll some day approach the wrong person, and end up with her feelings hurt, or worse.
- She wants to constantly shove a blanket in my face while I'm working in her house. "Here! This will keep you warm."
- She cannot find the toilet tissue or flushing handle in any bathroom besides her own, so needs assistance everywhere we go.
- I've mentioned before that the slightest discomfort brings forth a response of pure agony. I'm supposed to take her blood pressure every day, and each time she screams "Why is this happening to me?"
- She rarely puts the phone back on the hook, and if I do not call her intermittently throughout the day, I arrive to find her sobbing, telling me she thought that I no longer love her.
We have then, a giant Catch-22. She is lucid enough to not want to be sequestered. She wants to get out, go shopping, go do something. But taking her out is getting to be more than I can handle, alone. Getting and keeping her attention requires a certain amount of sternness. Holding the car door for her, and telling her to get in doesn't work. "Mom! Get in the car! We have to go now!" will get her attention. It also, often, hurts her feelings, and we come back to "I know I bother you."
I've written here before that I have gotten some in-home help with her. Daily help has been a Godsend to be sure, but her condition advances, and I seem to fall further behind. I have enlisted the help of medical counselors to start shopping for assisted living in Alzheimer's facilities after the beginning of the year.
I feel incredibly guilty. I feel like I should shirk off tired, and continue to do everything I can. I scold myself "It's not about you! You don't even have this disease! You have so much to be thankful for! Stop feeling sorry for yourself!" But I also feel like I'm exhausted to the point of making myself sick. I'm too tired to do what i need to keep myself physically and mentally healthy. Meal planning? Exercise? When, 10 p.m.? I find myself answering every question addressed to me with some story about my mother. Things I do, I just do not do any more. I don't even know what things I do.
I have no tidy way to finish this post up, I'm too tired to think of anything clever. My mother, she is precious, and I do love her.
Alzheimer's sucks.
The end.
9 comments:
Wish I could give you a hug. Sometimes that's the only thing that helps. You're in an impossible situation. I know you won't hear this, but you have nothing to feel guilty about. Just do what you can and remember: when you were little and your mom was taking care of you all day every day, she was doing it because she wanted you to have a good life. Deep inside, that's what she'll always want for you.
I can't improve upon what Larry said. Amen.
I can't begin to imagine what you're going through, but one thing is certain, you have no reason to feel guilty. Making yourself sick will be no help to your mother. Assisted living is becoming the only viable solution - for both of you. Hugs to you (wish they could be real).
- Jazz
You know how much I feel for you. One of the hardest things to understand...or at least deal with...is the progression. Just when you get used to handling things and compensating for what needs to be compensated----they take the next step into the disease and all the balls are in the air again. And that is why is really makes sense to be looking at options now. When you're in the middle of this it just feels as though it will never, ever end. But it does end and the way you're caring for her---exhaustion or no exhaustion----will console you. Love to you.
The truth is, caring for an Alzheimer patient in later stages is a full time job. Unless you can afford to quit your job and become a 24/7 caretaker, it is time to look at a professional setting. I have had numerous clients break down sobbing in my office from the stress of fighting the inevitable. You can be a better daughter (healthier, more cheerful, more relaxed) knowing she is in a professional setting, and your time together will be better spent.
I wish I could give you a hug.
You are a powerful, mighty, kind and energetic woman - and a loving, generous, attentive daughter.
You are doing all the right things and more. I hope you give yourself permission soon to leave that nasty guilt trip behind and trust fully that the time has come to locate a suitable assisted care home for your momma. It seems that she does this so quickly and surprisingly now - things you can't anticipate - that it now truly concerns a matter of her safety.
You are a good daughter.
Thank you all, more than words can say. I begin to lose myself, but putting out there and getting reinforcement HELPS. I heart you all.
I thought I left you a comment already, but I was in a rush and somebody walked up and asked me a question and I must not have typed the password right or something, but I meant to leave a comment. I truly did. It was all about your wonderfulness. Have faith. You've moved mountains before and you'll do it again.
If you could somehow go back in time to before your mom got sick, what advice would she give you?
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