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AnneShirley Asked August 2013

Any caregivers of a live-in parent with Alzheimer's?

Hi,
Are there any caregivers of their live-in parent here? If so, I'd love to speak with someone as I'm in the same boat. Thanks!
~Elena

ElMa10r Jul 2017
My mom moved in with us about seven months ago. We've finally accepted that it has changed our lifestyle of being on the go because she wouldn't get ready to go out. My husband and I now takes turn to do errands instead of doing things together. So far we are continually adjusting to a new lifestyle.

ElMa10r Jul 2017
My mom moved in with us about seven months ago. She takes medication to enhance her appetite. In addition she takes multivitamins. She is 90 years old and suffers from dementia. The bathroom door needs to be left open all the time for her to remember the location and the hallway light to the bathroom has to be on all night. She needs reminders and assistance to take showers. We need to be vigilant in checking and cleaning the toilet she uses. 
 We've finally accepted that it has changed our lifestyle of being on the go because she wouldn't get ready to go out. My husband and I now take turn to do errands instead of doing things together. So far we are continually adjusting to a new lifestyle.

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NomadSE Jul 2017
LEK, my mom has only been with us for going on the 5th week. She has gone downhill steadily in that time to the point where I just don't know. The shower thing is becoming a "thing" now where I actually have to give her the shower or bath. I have to walk her through using wipes in place of the shower. She seems to have lost all interest in anything. She used to play pogo quite a bit and could be entertained on the computer for hours. Now if I can keep her interested in it for more than 20 minutes it's a miracle. She used to love Bingo. Yesterday we managed less than an hour before she started to meltdown so I got her out of there quick. Her hands shake now (because of that d*mn anti-psychotic they have her on!) and she was getting super frustrated because she couldn't daub the numbers her hand was shaking so bad. She also couldn't hear the numbers and was marking off 22 instead of 2 and things like that and if I said, " just 2 mom, not 22, she got irritated" So I'm in the same boat as you only I don't think I'm going to be able to last 5 months.

She was very agitated a couple days ago and was super abusive to me, calling me names, saying she wished I'd never been born, things like that. Had me in tears. Refused to do anything except walk around the house moving things from this place to that place, opening drawers, packages, etc. We are having our house painted outside and there were ladders and whatnot outside in the back yard, plus stones for landscaping and she insisted on going out back and while she shuffles around and moves like she can't walk most of the time, she was out that back door like a shot. I caught her on the stairs outside and told her she needed to come back inside and she had a full blown snit right then and there. Telling me I wasn't her boss and she wasn't going to move and that was that. I reminded her about the sun and the fact that she was on antibiotics and the pharmacist had specifically said not to be in the sun and she said she didn't give a damn and she was going to smash my face in if I didn't leave her alone. So my husband came home at that point and I left her with him so I didn't have a melt-down myself.

Well turns out he had a few choice words with her in response to her shouting that she was going to talk to my sisters and going to move in with them. He told her that she was welcome to talk to my sisters but she needed to know that we were her last chance before a "home" and that if she didn't stop being mean that I wasn't going to want to have her here either. That my sisters and brothers had all wanted to have her put in a home but that I was the one who insisted she not be put in a home, that we (my husband and I) would take care of her. So if she wanted to leave, she could but it would be to a hospital or nursing home. Well, not what I would have wanted him to say, but it was said so there it is. She was speechless and of course of all the things she would remember, that would be the thing.

On the other hand, she is being much nicer. Still being herself, but much politer and not abusive.

My sister who is financial POA almost had her accepted for Medicaid in another state, but when she had her crisis and was put in a psych hospital to even out her meds, and when everyone else wanted to put her in a nursing home, I went and picked her up and brought her to my state. Now mind you I was the last person my mother wanted to live with (before she was so far gone with dementia) so maybe I should have just let it be, but I didn't.

She had a little dog that my SIL didn't want to deal with (he peed all over the house) so they convinced my mother to have him euthanized when he caught a cold. Not saying that was the wrong decision, just it happened. So she doesn't even have him to keep her company. And while my dog is nice and she pets him, he isn't the same as her now gone dog. I thought only briefly of getting her another, but that isn't a reason to get a dog so there that is....

Anyway, so thoughts on your situation.... what is helping me is setting up an "end date". Maybe that would help in your situation as well? Pick a time frame that you feel you can handle and then make plans for placement after that time frame.

For me, I'm hoping to make it until January of next year. Then I take my mom to the other state and live there temporarily with her until she can be qualified for medicaid there and then help my brother find a place for her where she can be looked after the way she needs. (the rest of my brothers and sisters want her in that state) She won't like it, but it is what it is. She needs more care than I can provide on a long term basis. I feel I can do it for that set period of time, but the thought of forever has me in despair.

Of course I feel like doodoo at the thought of placing her in a facility but.... when you talked about the underlying stress of her growing needs, that is where I'm at, and I'm hoping that giving her these last few months outside of a facility is in some way helpful to her. It's all I can do though without jeopardizing my own health and marriage.

LEK7585 Jul 2017
Moved my mom in 5 months ago. She is in stage5/6. I never knew this would be so hard! Some days I feel as if she needs professional caregiving, more stimulation, more of everything!! She was a recluse and had no hobbies except TV when I was growing up. She has a dog that has become "her" and "speaks" for for my mom now. Her reliance on having her dog nearby is the only real concern she has anymore. She is down to wanting to wear the same Royals Tshirt everyday and nite and we nearly have to tackle her to get her to take a shower. Taking pills is a daily nightmare. I love that the our "circle" is finally being completed and we seem to have forgiven each other for past slights. Just don't know how long I can hang on?? My husband is supportive, but the underlying stress of her growing needs is constantly there. As long as she remembers her dog, I feel as tho they belong together. No memory care place here allows pets. I have outside help a couple days a week to get out and shop etc. Any thoughts??

Jinx4740 Sep 2013
AnneShirley - Isn't that the name of Anne of Green Gables?

Have you gotten to the attorney yet? How did that go?

AnneShirley Sep 2013
To answer Roxanne's question, Mom has always lived with my brother and me, or rather, we have always lived with her. Due to illness we never were able to move out on our own. I know, it seems strange in this day and age, lol.

AnneShirley Sep 2013
Glad to meet you all! I think we should start a group for just us caregivers at home too, Reverseroles. Great idea. It is different than having them in a facility, y'all are right. Not that there's anything wrong with a facility, it's just different caring for them 24/7. My mom is in the middle stages of AD, the doctor said. I'm so thankful I have my brother to help me. I don't know what I'd do without him! Again, so glad to meet others in the same 24/7 situation!

Roxanne627 Aug 2013
It is very stressful to live with a parent after all these years. I didn't realize how juvenile mom could be at times. I feel like I'm living with a petulant child at times. For example, she'll walk away from her walker, and when I've brought the walker to her, she'll tell me, none too kindly, "I was using it." We both know that's not true, but she just wants to argue about it. I've gotten to the point that I just walk away, as there's no point in trying to reason with her. What's really sad is that she knows what she's doing! One day, I'll be grateful for this time with mom...just not today!

anonymous144432 Aug 2013
It's been 4 months since I moved Mom in with me. Every afternoon or evening at some point, without fail, it comes to either "When are you going to take me home?" or "When are my kids coming to pick me up?" I just had no idea how bad she had been sundowning, either, or that I'd have to go through the whole explanation many times nightly of why she just can't live alone anymore. She talks to herself incessantly when we aren't in the same room together. That's alright unless it becomes what I call her "little girl" voice that tears at the curtains or the front door, begging for her mother or my dad to save her, which she stops pretty much when she notices me. The worst has been her not wanting to bathe or brush her teeth. But I'm in it for the long haul. Haven't had to hire an aide yet but will certainly do it when it has to be done. We're trying depakote; not sure it's doing much of anything but have to try what the nurse says. Thank God, at least she sleeps through the night. I work evenings in my home. Would give anything to be retired. I thought it would be easy, and some nights seem okay, others lousy till I can get her into her pj's and finally into bed. Days are better, she can still dress and feed herself, and we get out and about. But again, the evenings are long. Glad I found this forum and am grateful to all you guys!!

Reverseroles Aug 2013
I would love to start a group of just us that have our parents with us 24/7 ! Its so different than many that are in this group, to have them at home. We could help eachother through each stage. my moms at the hoyering stage and I have learned so much. Shes unable to say many words or understand anything like a tv, or anything, but loves music and wakes up laughing! Its so hard to know we can not just walk-out the door when we want to, takes a toll on us mentally and physically, But we are here for them. Even just to hold their hand or console them in times of teariness, is priceless to me. Hugs to all of you!

pamzimmrrt Aug 2013
I just moved my parents in,, we knew it was comming but not how bad dad was. Mom is still pretty sharp, but ended up in the hospital with pneumonia and CHF. she is depressed and dad is sometimes angry about not "going home" They cannot live in their house alone anymore (stairs, wtc) and we have room, but it;s been a real learning curve. We have a part time companion, but I am still stresses alot! I am so glad I found this site.

StandingAlone Aug 2013
Yup, 10 years for me, the last 5 24/7. Hardest road you'll ever be on.

Pixiegirl Aug 2013
I have my mother home with me for the last 8 years she was diagnosed in 2005. Like everyone else here, there have been good days and bad days. I do the best I can.

lily04 Aug 2013
I've had my mother here for 3 1/2 years. Seems like 300...

Marilee Aug 2013
my father lives with my husband & I. He has alzheimers - I think stage 6. It has been 6 1/2 years and it definetly is stressful. Some days better than others. I have 2 brothers that don't help much at all. They take him one week a YEAR. This site has been very helpful to me. Good luck - unless you are a caregiver you have no idea how hard it is.

tombutler Aug 2013
Hello. I moved back home with my Mom and Dad, eight years ago. Dad had vascular dementia and has since passed. Mom has Alzheimer's and is still going, ten years after her diagnosis.

There are three of us. We all do as much as we can to assist Mom in these last days. On the whole, she is very good to deal with. We do have our days, though. Can't say I'd do anything any different.

The love Mom gets (and gives) is amazing.

Roxanne627 Aug 2013
My mom lives with me as well. She has mild/moderate Alzheimer's and moved in with us about 8 months ago. How long has your Mom lived with you? What stage is she at? I hope you're doing well!

Reverseroles Aug 2013
Hello AnneShirley, I also have my mom at my house and she is stage 7. I can help you, been through it all, just send me a message. If you send a hug/private message I will get it sooner. I JUST got this message and its 4 days old, Hang in there, send me some questions. Hello to OneMoreDay also !!!!!

beecindy Aug 2013
My mom had dementia which is a form of Alzheimer's. She passed away July 27th but I can totally relate to what you are dealing with. Mom lived with me and my family for 6 years. There were the days of total confusion and days of frustration and some glimpses of the mom I used to know. Its not an easy road but I would not have done anything differently. I also found this website and got much support and advice. Hang in there and we will be here for you!

OneMoreDay Aug 2013
I am living with my Mom who is at stage 5 Alzheimer's Desease. Overall, I'm making it OK but then there are "those" days. You know the ones that make you really doubt whether or not the decision to be full time caregiver was the right thing to do.

Welcome to the message forum and come here often to ask questions, look for help, comfort or just to vent. I could not have even begun this journey without the encouragement and understanding I have found here.

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