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My mom is 81. All my life she was the one that had it all together. My dad had heart issues, diabetes and COPD. Mom knew all his pills, when his Dr. appointments were etc. Then in Sept of 2020 mom had a stroke. Dad said she got up out of her chair and couldn't remember where the bathroom was. Dad waited days to call me and let me know. A week later, I took her to a Dr. and they tested her for a UTI, it was inconclusive because I believe the sample was contaminated. We put her on antibiotics anyway. After this she seemed to be getting better, teaching herself how to use the computer again, etc. Then a couple of months later she lost all interest in it or learning anything again. Dad would call me and say mom didn't get dressed today, just stayed in her nightgown. She stopped doing dishes, feeding the cats, just didn't do anything.


The Dr.'s didn't do any other tests on her except memory type tests. The general practice doctor did a CAT scan and said it was okay. We went to a neurologist. They gave her more memory tests. I asked about an MRI and they asked me if I thought she should have one. I didn't know? I finally found another doctor, private pay, and had him look at her. He had an MRI and bloodwork done on her and came back and told me yes, she did have a stroke and there was other “TIA activity”.


He said he believes this is what caused her to stop learning and lose interest in everything. My grandmother (mom’s mom) also had what they then called mini strokes and had dementia. She was in a nursing home for years. After talking to this doctor, we determined that my mom is having the same issue my grandmother had. I think they call it Multi-infarct dementia?


My dad said he would take care of mom as long as possible. In January of this year, my dad died. My mom actually figured out how to call me and my brother that day. Since then I have been taking care of everything. I live in a different state, 4 hours away. I basically moved in with my mom for the first 6 months of this year trying to get things worked out.


My husband and I are currently living in a very small trailer while we build our house. We have been building it for five years now and are so close to being done, but now this. The house has come to a standstill and now mom is living in the trailer with us.


A few years ago, mom, dad and I did find a lawyer and drew up a POA, a Medical POA, living will and a will for both of them. They made me all the POAs. After dad died, I did find an elder law firm and created a trust for moms home and another property they own that my brother lives in. And we put the homes in the trust and as much of her savings as I could in it as well.


I have two brothers, one lives in the state my mom lived in and one lives 8 hours away.


I am mom’s caregiver, 24/7. I work from home full time in IT and take on-call every 4 weeks. This is the only way I am able to do this. I help mom with everything, incontinence, showering, dressing brushing her teeth, everything. Now she has gotten to wandering during the day and night. Her short-term memory is so bad, when she is on the toilet, if I ask if she peed, she can’t remember.


I am not getting sleep and still working. My brother is now watching mom for a week about every 4 or 5 weeks for me to get a break. I’m afraid to get in home care since our trailer is so small we would all be on top of one another. My brothers don’t want to put her in care but they don’t understand. When he watches her, it’s at her house and he just stay’s there for a week until I’m back. I have to incorporate her into my whole life. She is attached to me 24 hrs. a day. I feel so alone in my decision to want to put her in a memory care facility.


I feel like a failure to my mom and family. I'm so stressed. While working, I can’t spend time with her, my job is pretty demanding and my boss is not my friend. I feel a memory care facility could keep her occupied instead of bored watching TV. I’m afraid we are making her worse.

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Does she have money? If so, I would place her or find a Daycare to give u a break. Moms picked her up and dropped her off. Fed her breakfast and lunch and even bathed her for me.

The problem I see is Medicaid if needed in the next 5 yrs. Putting everything in Trust within the 5 yr look back maybe frowned upon and cause penalties.
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I will answer your title question of needing full time care. All of the other background is about paying for care. If she is not able to safely be by herself, then yes, she needs full time care. If you are not willing to place her in a nursing home, you can apply for Medicaid at home to at least give you a break. She can receive a few hours of care each week which will at least allow you to get a break and leave the house for some "you" time. If she has some funds available or if your local council on ageing has some care stipend available, then adult day care may be an option.
You should at least plan on how your mom will be cared for when something happens to you.
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Until your siblings have lived the situation as you have they cannot judge you for needing a different living arrangement. If mom needs memory care to keep her safe then that’s what needs to happen, using her assets to pay for it. Wandering often has a tragic end. Memory care prevents this. Plus you’re only one person, mom needs a team to provide for her, and she’d likely enjoy the company of others along with activities geared toward her abilities
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At what point? Short answer: Now.
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If you are asking this question, the answer is “now.” As far as expecting her to do better in memory care and not be bored, don’t be surprised if she doesn’t. She’s had strokes, she has dementia, and memory care can’t fix this. She needs to be there, though. It gets you off the hook and professionals will be caring for her. Win win.
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Considering the living situation something needs to be done now. :/ It's hard enough to move someone around when they're feeling "a little ill" (how my mom was when she first to to mine this summer), after she had.. whatever it was that really showed up in Sept/Oct.. I couldn't imagine moving her somewhere else. As it is, she thinks she was in a dozen different apartments, with a dozen couples, all who had three cats, until recently and now FINALLY she knows "I'm at my daughter's house." I'm just thanking any deity I can find she's had three weeks of continuous memory of being *here* in the apt with me now... (we started a new med in dec that covers a good # of the possibilities as why she might have mentally checked out this fall :/ A paper calendar has helped. Advent calendar weirdly also helped.)

Don't blame yourself. You are absolutely in over your head. You've kept her safe and sound, even if a little confused. And yeh my mom stopped toucinhing her computer too. I've noticed though if I remind her, she'll use it. When I ask her, she will insist she was on it "earlier". So you could try a gentle suggestion, it might get her back over there and engaged with it. Cause yeah. you'd think someone could only watch so much Hallmark but here we are. <3

I would try to get her settled *somewhere* cause it will prob only get worse, and if she decides to walk off somewhere oh sheesh :(((
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BurntCaregiver Dec 2022
@Caldinea

Place your mother. You don't have to give up your life and your home for your mother's care needs. You have a choice. Everyone does.
I remember once my mother tried quoting that total nonsense with me about a son being a son until he takes a wife, a daughter being a daughter for her whole life.

I told her that was true because men have never in all of history had to tolerate anywhere near the crap level women do. They say no. I told her that I did become a daughter for life though. To two wonderful women when I married their sons. Even after I was divorced from my husbands (I reconciled with hubby #2 now), my MIL's still thought of me as their daughter.

My actual mother never tried quoting that nonsense ever again with me.
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A facility can often be a better choice. My mom actually improved in a memory care in 7 months and moved to to an assisted living. She enjoys the social life and is soooo much happier. It did take a period of adjustment which was painful for all of us!
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BurntCaregiver Dec 2022
@Sadinroanokeva

It's nice to hear a happy story about placement. They are so rare. I'm glad your mother found a good life in AL.
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If she is wandering, then she needs a place that is secure so she is safe.
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swimmer,

It is past time to place your mom in care, regardless of what your fair weather, once every several weeks co-caregiver brother and the other sib think. You cannot do this any longer and she's poised to harm herself now that she's wandering too.

Save yourself, your marriage and your mom from erosive harm and have her placed. The wandering in and of itself is all the justification you need to provide to anyone and do not be convinced that alarms will serve any purpose; you cannot do this a second longer.

Start now in locating a MC unit with an available bed and get her placed, asap.

It's unbelievable that you've done this for a half year! have mom placed, save yourself and resume working on your dream home.

Be strong and unwavering.
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Dear rapidswimmer,
Determining when to place your mother in a care facility not only depends on her behavior, but also on your physical and mental wellness. The caregiving experience for a LO with dementia is different for each and every one of us. Her past strokes and TIAs are the hallmarks of vascular dementia. VaD is caused by lack of blood flow to the brain and, consequently, lack of oxygen.
 
When should you place her? Let’s start with you. You’ve put your life on hold: construction of your house is at a standstill; you help your mom with “everything, incontinence, showering, dressing brushing her teeth”; you are stressed out and not getting proper sleep; you feel alone. That’s a lot! These are all indications that you’re being overwhelmed with her care. This stress is certainly not good for your wellbeing.
 
As for you mom, she can no longer perform any ADLs on her own. You have to do it all for her, cooking, showering, dressing, hygiene, etc. Of most concern is your mom’s wandering, especially at night. It is very dangerous for her and, I’m sure, frightening for you. It’s a game changer.
 
You can’t cure, change or control your mom’s disease. It’ll worsen over time. Continuing to care for your mom at home can only lead to more stress and even bitterness. Your feeling of being a failure is truly misplaced. Every day you sacrifice part of your life for her benefit, not yours. And if you’re concerned about forfeiting your care of her, placing your mom in a care facility IS caring for her… and YOU!
 
Now is the time. It takes courage, but it also takes love.
 
I wish you well.
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I see so much "I failed my parents and family" on here, and it's so saddening. I understand why people can feel that way. But it's just not true. You want the best for her. If she were in her right mind now, would she want you to give up your job, your health, and your sanity for her? Hopefully not.

Failing your mother would be insisting you will care for her, no matter what-- at the expense of her life and yours. Because unless you can live on no sleep, and are a nurse, physical therapist, pharmacist, and security guard all in one... you can't keep doing this. No one person can. You'll die before your mom does, and I say that in all seriousness.

This situation is not safe for her or for you. It's making both of you worse.

If your brothers don't want her in care, then they have two options. They either move to be with her full time, or bring her to live 24/7 in their homes. If they don't like these two options, then a facility it is. You should not be the one who handles everything simply because you're the only daughter. It's maddening how many daughters on here were expected to give up their lives for caregiving, while their brothers could keep living life as they pleased (I am an only daughter too!).

I often say that caregiving is a job that people think they can 'love their way through'. That love will be enough to sustain their efforts. It isn't. If love alone was sustainable, there would be no need for this forum!
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Caldinea Dec 2022
"A son is a son until he gets a wife a daughter's a daughter the rest of your life" ...

I knew I was in bad shape when my mom said it, my aunt said it, and then a freaking actress in one of the ubiquitous Hallmark movies ALSO SAID IT within a week... o.o :D

At least my mother will, about once every two weeks, give me and my hubby heartfelt thanks for bringing her in <3 even thru all the mental ups and downs <3. If anyone needs a spare "thank you so much my daughter" I have more than I ever expected and can share some of them
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I have often said that you have to ask yourself if you want to sacrifice your life on the altar of their old age.

Because that is more accurate than asking if you should keep sacrificing for them. You are giving your life to something you can’t fix. That doesn’t mean you can’t love her.

But, as much as you want to, you can’t give her life back to her by giving her yours.

It’s a paradigm shift, but an important one for anyone in your position… definitely one I had to make as well, so I say it with kindness and empathy.
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Caregiverstress Dec 2022
Yes. This. So many people give up their own lives and lose everything they have worked for to care for their loved ones. Careers, relationships, finances, social circles, and mental and physical health all suffer or vanish when you sacrifice your life to get someone else to the end of theirs. Nobody wants to have to put their loved one in a facility. It’s heartbreaking. But when their care needs start to take over your own life to the point you can’t live a full life yourself anymore, it’s time for placement.
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In my world I would see if she is considered ready for a nursing home or a memory care. My moms dementia improved in a memory care and was able to move into an assisted room vs memory care after 10 month!! We can not give dementia patients adequate socialization at home! My mom loves her assisted living and her friends. It would be a gift to her…staff to engage her and you can visit on a schedule…I spend 15 hrs a week with my mom..Sundays I bring her to church and home for lunch.. Good Luck. PS: I chose to not listen to friends who thought she should stay at home. Life is soooo much nicer..for me and Mom.
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Your mother should be put into managed care now. That's what is best for her. If your brothers don't think she should be placed then they can come get her and move her in with one of them.
Placing someone you love is hard. Nearly everyone feels some kind of guilt or self-doubt when they have to do it. That's normal and you're not alone.
You can't manage the kind of care your mother needs. No one person can. She needs care from a full and professional staff.
I'll tell you that you're right in thinking that you may be making her worse keeping her with you. I worked as a caregiver for almost 25 years and have seen so many sick and elderly people kept "home" when they shouldn't have been. Their whole life was tv, eating, crapping themselves, and sleeping. No socialization and no activity.
Start looking at memory care facilities. Placement is what's best for your mother and everyone else.
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Do what is best for you. You don't owe her. It's the parents duty to set their children free. Be free.
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I agree with BurntCaregiver. Your mother requires full-time facility placement for her care. Sorry, but your caregiving duties should stop so you can work for your own financial security. You can just be your Mom's campanion.

Believe me that I've been there helping my late mother for 14 months until she was forced into a nursing home with medical problems and several falls at home. Kaiser would not send her back home alone.
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It seems you’ve already made a decision for the move, it’s just not everyone is on board.
You have done your best, yes?
Tell the others, this is what I’ve decided. Mom’s health will not get better. Reality is a form of true confession. Get tough with this foot stomping, and put your foot down.
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Why are the three of you living in the temporary trailer instead of living in your mother's house?
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Lymie61 Dec 2022
I was having a hard time following that too but re-reading I think maybe she took mom back to her house (trailer while it’s being built) in a different state about 4 hrs away.
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It seems your mother needs 24/7 care. This is hard for 1 person to accomplish. You might try getting her into an adult day care program (usually Monday through Friday days) to give you a break. Hopefully, that would create space in your schedule for work and rest. If she is up at night, ask her doctor about medications to help her sleep through the night - so everybody else can sleep too. If neither of these ideas work, placing her into a residential facility would be the next step. Find one near you, that accepts her insurance/finances. Ask family and friends to visit her throughout the week so she has somebody she knows see her daily (or every other day or so).
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Get into therapy and sort out your needs for self-care, and setting boundaries.
If your mom is at the point of needing memory care facility, she needs to go. Period. You have the power / legal authority to do this. Do it. This is up to you, not your brother(s). Gena / Touch Matters
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Please call "A Place for Mom" and see if they can tell you the nearest Assisted Living facility that can evaluate her for Memory Care. Please call Adult Protective Services to get assistance in placing her and applying for Medicaid, if that is what she needs. Make a group appointment with a Geriatric Psychiatrist is that is what will help enlighten your brothers. If they have further issues with placement, insist that they take her to their homes to learn more about what type of care is needed.

Please make an appointment for her with a Gastroenterologist to deal with incontinence (by Zoom?)

Make sure her new living situation is near you so that you can keep an eye on her. If you need help with that, you could consider Visiting Angels.
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When you are broke. Or can afford it because you are rich.
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Now is the time and this is exactly how it feels.
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Please give yourself permission to act responsibly as POA and, have your mother formally assessed for level of care needs, options available and, move forward with placement as you deem ready. It certainly sounds like a valid time to do so and,in fact may be safest thing to do as you would know that your mother was receiving 24/7 care in safe environment if you should become ill or otherwise unable to care for her.
The time it seems is, now, for both short and long term needs and care for your mother and, yourself.
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If you want to sacrifice all of your life & relationships, carry on as you are. I could NEVER do this & I consider myself to be a very giving person. There is only so much of you to go around! You have yourself: physical & mental well being, your Hubs, your job, Kids?, friends... This is too much.
Why do your brothers feel you should give up your whole life? If you have an Instagram ..go on "narcissist_nab" and watch her reels.. Time for you to take care of YOU!
YOU are NOT a failure! "It takes a village." You have done well & will continue to do well as her Daughter! Time to bring in assistants/relocate her to a better environment-situation. <3
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PS Just say NO to Codependency! Value YOU + YOUR Hubs, for starters! Over all!
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rapidswimmer: Now is the time for "full time professional care."
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