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Anybody coping with living with a parent with Alzheimer's?

Posted: Jun 28, 2013

I moved mom in with me about a month ago. I work second shift full time in my home. Even before I moved mom in, I would see her daily in her home, see she was eating properly, setting her pills out, etc. She recently had cataract surgery and recovered fine. We've put her home up for sale and she's none too pleased but I thought she would adjust to living with me. Our homes are similar, and I made her bedroom in my own look exactly like hers, bathroom in the same place, etc. Long story short, I never realized how badly she was sundowning, and this begins almost daily now around as early as 2:30. I'm not sorry I moved her in with me, just wondering if any of you have coped/are coping with the sundowning thing. She is fine one minute and is sobbing the next, wandering my hallway, asking to go home;I "talk her down" but she's back in my room 15 minutes later. Will this get better or will I probably have to hire somebody to sit with her so I can work? Or the next step, put her in an Alzheimer's unit? How have you coped with this??

;

Not personally, but - please sm.

[ In Reply To ..]
my very close friends/neighbors went through this. In their case, I am sorry to say, no, it did not get better. Their friend and I volunteered to stay with "Mae" a couple hours so her hubby "Al" could run errands, etc. He eventually did have to put "Mae" into a secure facility because she started wandering outside in the early morning hours. Please see if there are any Alzheimer's or dementia seminars at your local hospital. They hopefully can provide you with resources and ideas.

I am so sorry you and your mom are going through this.

Had MIL with us - For 5 years

[ In Reply To ..]
Oh, hubby and I went through this with his mother. Only difference was, she tended to be violent when she had a "spell." We found a doctor who put her on Seroquel and allowed us to adjust the dose (within parameters) if she was having a particularly tough time.

As to sundowning,she would get extremely agitated at night. We would literally have to have her in her sitting room, shades drawn, lights on, Animal Planet playing before she noticed it was dark out.

No, it does not get better. Her new environment caused the reaction, but she likely won't really totally adjust. All you can do is get a good doctor, get some good medication, and do the best you can. Some hospitals offer "classes" for caregivers---my husband went and it helped.

If your life is extremely disrupted even after medication, the sad truth is, you may need to place her. It is not easy to place someone, unless they agree to it. Even if you have conservatorship, the other party can still have some say.

I hate to say it, but we had to keep MIL "drugged." She was awake, but just sat and watched TV.

Find a doctor who will allow you to make minor adjustments in the meds, if they choose to put her on meds. Our first doctor---what a pain. We had to call him every time we felt she needed a little extra dosing. By the time he called us back, all heck had broken loose. The new doctor allowed us to up her Seroquel if we needed to, within guidelines.

Very best to you. It is a horrible experience, stressful. I was sick to my stomach half the time, but putting her on Seroquel did wonders for her agitation. We also had her on Exelon which helped with the cognition.

I was thinking Seroquel myself... - betsy

[ In Reply To ..]
Yep, when the agitation starts, it's rough. We see the neurologist this week and will ask for something like this. We are very active during the day but once home, things seem to kick up with the "I don't belong here, where's my children," etc. You'd think she'd be tired and could settle in front of a movie most days, and yep, caught her trying to go outside a few times, so it's getting more serious. I knew it probably would not be easy. She's been on Aricept and Namenda for a few years now plus citalopram.

Thank you both for the suggestions.

You have my sympathies and support - Poster with MIL

[ In Reply To ..]
Definitely speak to your doctor about the Seroquel. For us, it was a miracle drug. Not that MIL didn't have some "moments," but it made a huge difference.

When they're agitated, they don't tire. It's like their adrenaline is on full force or something.

I tried to engage my MIL in little projects. She had always like doing crafts, so I would set up dried flowers and a non-breakable vase and have her do dried or silk flower arrangements. She would go for hours doing that. Her memory was so bad, that I could go in and mess it up when she wasn't looking, and she'd just re-do the whole thing, picking and poking and making everything perfect.

If you can find something she likes to do (even if it's folding laundry!), have her do it. I had MIL folding the same 2 towels for about 2 hours. Help her feel useful in some way that is safe (like the laundry) or cleaning a counter. Keep all glass away.

Best of luck to you. FYI: They have daycare activities for people with Alzheimer's where you can leave them for a few hours to give yourself a break. That wasn't an option for us, because MIL was paranoid we would put her in a nursing home, but if your mom is not paranoid like that, it would be something good for her and something good for you. They know how to keep them calmly stimulated and relaxed at the same time.

Folding laundry. - Please sm.

[ In Reply To ..]
Ah, you brought back a good memory of "Mae." She also would spend lots of time folding laundry, and she was good at it, so I used to take my freshly laundered towels over. She would fold and I did their household paperwork, both of us (mostly me) chatting away for a couple hours. She also liked looking at magazines and pointing out her favorite colors.

I forgot about the daycare option. Excellent idea to try.

A Little Simple Creativity - Goes a long way

[ In Reply To ..]
Yup. Even if they're not good at it, it gives them something to do. Can be just about anything, as long as it's safe--no knives, scissors, breakable objects.

There is something that many, many Alzheimer's people have in common (whether they're the agitated, paranoid, violent type or whatever), and that is they can do something for hours and not even realize the time is passing.

Properly treated by medication, they really can and do sit for hours doing mindless things. My MIL would also pick lint off clothing--I would give her somethning that had lint on it, and she'd pick that off.

Since she was in our home, we tried to engage her so that it felt like her home, too. I'd say, "Ma, can you help me with...?" Made her feel useful.

Sometimes, you have to humor them. She would get mad at us and tell her she's "calling her lawyer" and is going back home. We'd say, "okay," and hand her the phonebook. She had no capacity to call anyone, but it made her feel better--like she had some control. She would just thumb through the phone book, and before we knew it, she didn't even know why she was thumbing through the phone book.

I forgot to mention - A Book for You

[ In Reply To ..]
The class hubby took provided us with a book called "The 36-Hour Day." I almost flipped when I saw the title, because that doesn't sound very encouraging, but there was some really good, helpful stuff in there. IT's designed for the caretakers of Alzheimer's people.

It's one of those books that you can kind of pick and choose the topic that most pertains to your situation. You really don't have to read it cover-to-cover. For us, it was the paranoia (which basically was the cause of her violence).

While your mom won't get better, she won't necessarily BECOME violent or paranoid if she isn't now. Hubby's mom, while she was never violent in her past, did always tend to have a bad temper, and with the dementia, it just sort of progressed to the violence. If your mom has always been sweet and calm, she probably won't become violent.

Reach out in your community so you don't feel so all alone. Find caregivers in the neighborhood with the same situation. We felt so all alone with this, as this all happened when we moved her to Florida, but we did connect with others in the same situation.

How is Betsy Doing with her Mom - She never came back

[ In Reply To ..]
Betsy- How's it going with your mom? Did any of our suggestions help you?

I'm here... - betsy

[ In Reply To ..]
...had no internet or power, local storms for a few days, took my state test to be an STNA when and if the transcription finally falls through and I can't keep working from home, and I passed, praise the Lord. Anyway, yes, am looking into some daycare, have tried a new med (depakote, don't see much difference), etc. Will keep the Seroquel in mind to ask about. She does get wrapped up in playing with her jewelry or her purses sometimes for hours. Not much for puzzles. Seems to want someone sitting with her all the time so might end up hiring somebody to just do precisely that for several hours in the evening. Thank you guys for your suggestions. Would love to be retired, I do believe I'd be less on edge and able to cope better.

Glad you checked in - see msg

[ In Reply To ..]
They may need to change the med. If the depakote isn't doing anything, then time for a change.

Good luck. Glad she's going into some sort of daycare and that you are looking for someone to sit with her in the evenings.

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