When I was a young adult, my family visited my grandmother who had Alzheimer’s. I was going out for a drink with a friend. Every few minutes, my grandmother noticed that I had my jacket on and asked what I was doing. I’d say I was going out with a friend, and she’d escalate about how unsafe the city was and how I can’t go. Eventually, fearing all this revving up would give her a stroke, my parents suggested I take off my jacket and hang it out of sight by the door. I did this, and after my friend arrived and I left, my grandmother forgot entirely about me going out (and as far as I could tell, about my very existence).
I know the insurance approved her for MC, and it’s a good idea to get her there for a few hours so it won’t be so strange to her–though really, with dementia she probably won’t remember she was there. The thing is, even with POA and a qualifying letter from the doctor, I doubt the MC place can keep her against her will. That’s how it worked for my BIL (Louisiana) and my friend’s wife (WY). A POV doesn’t mean your mother has no legal autonomy, and as I understand it, docs cannot commit someone to an MC unit. (See my earlier post for the route we took. The alternative was a long, expensive process of getting conservator status.) This is why you should talk to an eldercare attorney and/or counselor ASAP.
All this is VERY stressful, and it’s interfering with your grieving, which is not good. I hope you’ll get counseling or join a support group. You can’t help your mom if you’re broken,.
Depends on the degree.
Right. And AIUI, it varies by person and can vary somewhat from day to day. That’s why I said "probably."I’m assuming that if the OP’s mom is at the point where she can’t live alone, drive, etc., she’s probably not in the early or mild stages, and the likelihood is greater that she won’t recall having been there. But I’m sure not a doctor, and I don’t know the OP’s mom, so point taken.
I get that, and I’m sorry I put it that way. My meaning was for you to solicit and/or accept any offer of help you can get. No matter what short period of time it may be. Definitely respite care for a week (two if you can swing it) for the wedding.
Medicare will approve a rehab facility (nursing home) for max of 30 days after a 3 midnight hospital stay. She must also be willing to participate in Physical therapy and Occupational therapy. Just something to think about.
You can take care of yourself by being gentle and undemanding and accepting of your emotions. If this were a friend going through what you’re experiencing, you wouldn’t expect them to be looking for joy or feeling it. So don’t expect it joy from yourself either. When my father passed, I’d get flickers of joy now and then, but for months my main emotion was sadness and loss, and I’ve heard this from other people who’ve lost parents. It really takes weeks and months and even years to process the loss and recover.
Re: her not remembering if she was there or not:
She didn’t know where she was after 3 days in the hospital w dad. She didn’t really know her way around my house for a good 3 days or so but has a pretty good handle on things now. She recognizes the neighborhood when we get near.
I think after a few days there and after working with or dealing with the same people a few times, it will become more familiar.
I got my first call back from what they are calling Private Individual Case Workers. They would meet us at my folk’s home and assess the living situation and assess her abilities and just figure out where everything is and what we need to do to move forward. It sounds very open ended and they charge for mileage and $70/hour just for the initial assessment, and she ballparked it between $500-$1000 to be assessed.
I will make a few more calls but as I understand it they are the care manager…? Mom’s ER bill and some of dad’s medical bills are starting to come in. Money is being spent quickly. It’s frighteningly expensive and we aren’t even into the care giving part.
Please don’t be too quick to pay the bills. Many times you just have to write the insurance info on the back and return it. Medicare should cover most of those bills, if not all of them.
You may want to ask the first doctor who sees her if it is still a good idea for to continue the hydroxyzine. It might present a fall risk for her now that she isn’t in her own home or with your dad there.
From MedlinePlus drug information:
…. * talk to your doctor about the risks and benefits of taking hydroxyzine if you are 65 years of age or older. Older adults should not usually take hydroxyzine because it is not as safe as other medications that can be used to treat the same condition.
- you should know that this medication may make you drowsy. Do not drive a car or operate machinery until you know how this medication affects you.
- ask your doctor about the safe use of alcohol while you are taking this medication. Alcohol can make the side effects of hydroxyzine worse……
If she’s likes to sometimes have a drink in the evening, I’d hold off on the hydroxyzine on those evenings. Older women (like me, I gave up several medicines and alcohol recently at a psychiatrist’s behest) clear both alcohol and drugs like hydroxyzine much more slowly than either men or younger people. Ain’t fair, who needs it more, right?
Your neighborhood pharmacist can be a wonderful resource. She or he went to school all those many years just so they could educate you about your mom’s meds and how to medicate her safely and for best effect.
Sounds like you’re doing well by her. A ‘room of her own’ sounds like just the ticket.
I missed the edit window, but the place who contacted me today about assessment said they are geared towards aging at home, and tend to want to do that at all costs.
I don’t think that’s much of a viable option, especially if we’re going to have to liquidate the estate. So I will for sure hold off until I talk to some other companies.
I spoke w my cousin re: our family history of the disease and she confirmed my grandma’s house had to be sold, assets all spent down before they could qualify for care facility supplemental… $$$…whatever I’m trying to say.
I’m very mentally and emotionally exhausted. Mom is sundowning, I have to go lay in bed and talk a while. I’ll check back with the thread tomorrow.
If one of you could email me a hug or a spare hour of sleep, I’m accepting donations.
Goodness, you are carrying an overly full plate. The only suggestion that I have that I haven’t seen mentioned (or I missed it), is to check with Social Workers at your local hospitals to see if they know of any specific group meetings in your area for the sharing of grief and/or being the primary caregiver for an Alzheimer’s patient. At the very least, they will understand exactly how you are feeling.
I wish you the very best.
Sending hugs and some rest. I’m glad she’s settling in.
I have little to report about today, but today was insane busy and proactively productive.
First of all, you have all been indispensable and invaluable. Sometimes I have to appeal to “authority” when I quote this thread, so I just refer to you as this online help group who knows how to navigate all this.
Mom loves her new room. The light switches are easy, she’s within ear shot, she can see me and the TV and I have a radio with her gospel music going in there. I’ve busied her with putting the pics back in the photo album (I provided all new photo album pages) and she’s agonizing over how to group them (in a fun way) and she’s so dug in I have to call her off at night for wind-down time (shower, P.J.s, medication, sun-downing and late dinner. Ok she’s on my pretty unhealthy super late dinner schedule I know it’s not great but perfect is enemy of the adequate). I made my fiancee this crazy fun rose cut out from a map, and serendipitously, I found these old maps in my dad’s drawer so I am going to help my mom make map roses for all the women in the wedding party. She’s so stoked she can’t NOT remember it. She’s like “let’s put this photo album thing on the side.”
We went home today to just let the house breathe and she did OK about not insisting on staying. She did say “better look for clothes, you’re not going to let me stay here.”
I told her we had all the clothes she needs at my house…and after some contemplation, I said “mom…it hurts my feelings a little when you phrase it that 'I “WON’T” ‘let’ you stay here. “Won’t Let” you makes me feel like you are in prison. Mom, we love having you over and for right now we have to fix all the utilities with the house.” She agreed, then said she was sorry for phrasing it like I was keeping her away. “I know you can’t let me. I know you are talking to the doctor.”
I have been doing this thing where I explain this recent article I read about plaque on your brain. I told her your brain shuts down when you sleep in phases and a fluid rushes in to clean the plaque off her brain.
I tell her to rub her teeth. “See how it feels fuzzy? That’s PLAQUE. Your brain gets that, too. When you sleep, your brain gets all the plaque rinsed off. But when you have ALZ, your plaque doesn’t wash off.”
I don’t know shit about shit. But then I say, with total authority:
“Mom, do you know how you can’t remember your dreams? Mom, I think you don’t get the plaque washed off your brain.”
I do this motion thing with my fingers, where I aaaaaalmost make them touch, then go "mom, this is what memory is: Watch my fingers, they aren’t touching but then they baaaarely do touch. Mom, when they touch: you’ve made a memory! They connect!
…now slide a small slip of paper between them. Mom, this is PLAQUE. It keeps them from touching.
Mom, that’s your memory. There’s a barrier. You can’t make the connection."
Every time we do it, she says it makes more sense.
Tonight, --not a joke. She came in where I was sitting after going to her bed for the night. She said “sorry, I just want to ask some questions.” So I turned off the TV. We spoke.
Round and round we went, as we do, but at the end, she just said “I just hope there’s something the doctors can do about this…I guess “plaque” in my brain. It’s like I’m in a haze.”
OMG. YES, mom. YES. It’s not your fault! We are GOING to get this figured out!
It feels…like progress. SHE KNEW THE WORD PLAQUE.
She is so much work. So complicated. But, there are so many memories getting made that I would have otherwise never got…
So they live over an hour away round drive. Not a bad drive, but like today going there we had to take my little silly designer dog who my mom ADORES because she’s a dollhouse version of a dog. The dog gets crazy about the windshield so at the gas station when I was squeegeeing the shit off, little dog went wild…my sweet Keebler mother bounced her on her knee like a baby and tried to avert the little dog’s eyes and SANG AT THE TOP OF HER LUNGS to distract her interjecting “That’s your daddy!” and my GOD my heart.
God I am in hell but man is some of it fun.
Just keep remembering that and you’re a lot of the way there! And FWIW, nothing bad about late suppers, lots of cultures do dinners late. If she isn’t complaining, no harm, no foul. Also, there’s no law that you have to get out of your pjs and robe if you’re not leaving the house that, for either you or your mom!
Have we told you about the Dope pet rule? If you mention your pet, you must as soon as possible post pictures of said pet. Thems the rules. Ignore at your peril.
Aww, that warmed my heart from a thousand miles away. Keep these stories coming. Have you though about keeping an informal journal of these days? Just a sentence or two day of these moments? Nice to have when fate stubs your toe, ya know?
I’ll join this mantra in emphatic agreement! You can’t work or live anything resembling a normal life if you try to deal with this on your own. She could just wander out of the house and walk away at any time. You need professional help, ASAP! It’s not just better for you, it’s better for her also because she will get the level of care she needs on a steady basis.
This is a good example of things you need to address vs. things you should let go. The choice of words about you “letting” her stay home is important, she needs to understand that living alone in her home simply isn’t possible. It’s unsafe, and will almost certainly lead to disaster.
But the clothes? So what if she has a more than she “needs”? If she wants to pack a bag, go with it. It gives her a sense of still having some control over her life, which she probably really needs, since she’s lost so much control over other things. Let her have this “win”, and you’ll both feel better.
I did something similar with my father. He and my mom were stressing out every evening trying to sort out his pills for the next day, because every week the doctors were adjusting something. It was causing lots of stupid little arguments, and I knew that wasn’t a good thing. So I went out and bought several pill organizers, and told dad, “Hey, look, we can sort out pills for several days in advance, so you don’t need to do it every day.”
Dad grumbled a bit, then said, “Well, okay, do a few days and let me look at it, then we’ll decide!” Sure, I could have told him I’m more than capable of counting pills, but I knew he just wanted to still have some influence on his life, and “supervising” me to make sure I “did it correctly” was the only way he could do that. So I rolled with it, showed him what I was doing, and then when he approved the plan, went ahead and sorted his pills for the rest of the time he was staying at home before moving to hospice care.
Finding that balance can relieve at least some of your stress. You’ll have more than enough stress no matter what you do, so no need to go borrowing more that you don’t need.
It sounds like both you and your mom had a nice day! How great is that? Cherish the good days…and remember them when you have a not so good day.
You really have a lot going on, but you seem to be handling it well. Your Mom is so lucky to have you take care of her. She sounds so sweet. Good for you for explaining things to her in a way she can grasp.
That’s so important. Continue with your long range plans for her, as you know this is progressive and you will not always be able to manage.
In the meantime, enjoy her the best you can. You are a good son!