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I can't leave her because her care would end up in my daughter's lap and ruin her life. I hate every day of my life.

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If you hate every day of your life, then, I am sorry, but your wife needs to go into care.Truly, I am so sorry. You need to have an honest sit down with your daughter now. This is not her decision, it is yours.
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I just read your profile. You say that your wife has Alzheimer’s disease and that you are her caregiver for 20 hours a day.

You say that you are exhausted but you don’t want your daughter to care for her.

You claim that your wife is too stable for a nursing home or assisted living.

I don’t understand your feelings.

Please speak to a social worker to explain to you about the purpose of an assisted living facility or a nursing home.

Leave your daughter out of the equation. This is your responsibility to find the appropriate care for your wife and rest for yourself. You can’t continue to run on fumes.

I wish you all the best.
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Her stability has nothing to do with it-it's the amount of care that she needs throughout the day. Even small repetitive things add up when you have to constantly do them. If her need for care has reached a point where it is overwhelming you or will ruin your daughter's life too, then it's time for some assistance or assisted living.
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She is not too stable if she has Alzheimers. Your understandable mental state is hurting 2 lives. If you could ideally place your wife in a facility she might come to accept it. It sounds as though she would be suitable for Memory Care. If you visited you might feel less hostile as your burden could lighten. Otherwise perhaps you could look into some help at home.

If you come to this site and state you hate every day of your life people will take that seriously and tell you that the situation needs to change. It is a difficult choice but in time might improve. We have not been made aware of your financial situation regarding this. I think you have received strong responses from posters who have become well known and respected for their advice. I am a novice compared to most of them. I hope you can consider some choices that have been suggested for your very difficult situation.
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You can't leave her? You need to find memory care for her. That is not leaving her it is getting her the care she needs. Then you can visit as a husband, when you are ready and want to. Finding the care she needs is the most loving and responsible thing you can do.
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Don't be too proud or reluctant to ask for help. Caregiving is a full time job and my heart goes out to you. You mention your wife is too stable to be put in a facility, I'm assuming she doesnt qualify for skilled nursing care like a nursing home. You need help - even if its for a few hours during the day, so please check in with your church or super market bulletin board, or research local aide services and interview someone who can give you some respite and renew your spirit. I understand you don't want to involve your daughter in her care, but I think she will be willing to help you with the task of finding suitable part time help for your wife. Take it one day at a time and remember the journey beings with a single step - you can do this!
Also, I must say this site has been a wonderful way to vent, find comfort, and to obtain a wealth of useful information. Welcome and good luck!
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When you say your wife is stable, does that mean that she has not been declared incompetent?

I know that every state is different but I have seen on this forum there are at least several states (including mine- Florida) that require a JUDGE to declare incompetence in order to move a person against their wishes, even if the person has a legit diagnosis of dementia. The person with dementia is assigned their own lawyer. Therapeutic fibs would be illegal here!

So, it's not always possible to just place someone into care who doesn't want to go.

If OP comes back I hope he will provide more specifics. He might benefit from some care tips now, IF placement can not legally happen at this time.

I'm sorry OP, dementia really sucks. I want to tell you though I really give you credit for thinking of your daughter and her life. I hope your circumstances are such that you can arrange a good care facility for your wife. You matter too and you deserve to live your life.
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disgustedtoo Mar 2021
I'm not a lawyer and know nothing about FL, but is that just someone's interpretation? I ask because I know that everyone, including those with dementia, have rights and can't be "forced" to do anything they refuse to do, including move, but...

We tried the in-home help. She refused to let them in.
We tried asking about moving, to bros or AL. Nope.
The EC atty told me we couldn't force her to move. Well of course not, you're not going to take your mother or other LO kicking and screaming!
So, he tells me we have to go guardianship, aka court, judge, more lawyers, etc. Money and time to get that all done!
The facility chosen for her would NOT accept a committal. So no court.
The facility told me "just get her here, we'll take it from there."

NOTE: we did NOT have any formal testing done and no doctor ever "declared" her incompetent. She wasn't competent, but we didn't need that to make the move happen. We had to come up with a plausible fib so that she would go, grumbling, unhappy, but she went.

Again, I'm NOT a lawyer. If someone with dementia still has the wherewithal to dispute anything you say and still refuse to go, it may be the only way to get it done, but I would question whether guardianship is "always" needed, no matter what state. The lawyer is more likely to say it is needed, because that's some nice chunk of change for him and another attorney! There must be a place one can confirm this, outside of an attorney, who might bend the law a bit (note, this same atty told me to deposit the checks for mom in her acct and not tell the bank she is deceased! WRONG! I've opened an e-file with the courts to process the checks.)
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Anyone can go to assisted living if they can afford it. Many people sell their homes and move in to this type of living community when they no longer feel safe living alone or just don't care to manage a home any longer.
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You could call your health insurance company to see if they cover any caregiver hours per week. My friend's insurance offered this service for up to 35 hours per week but had to be a caregiver from an agency.
I would hire a friend or caregiver to help you, plus the companionship from another person would be nice your wife.
Can also call your local Office on Aging to see how they can help you and your wife (look online for the number in your county).
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You desperately need some in home help. Contact her primary care doctor and ask for a social worker. They will know what is available in your area and help you find a caregiver.
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Let your daughter help you find a memory care place for your wife. She'll do much better in memory care than assisted living, and you'll be freed up to just love her rather than be burdened by her.

"Nursing homes" aren't only for "nursing" anymore. They're communities with wonderful people to help your loved one, and they can take people who are perfectly healthy to people who need help with everything from bathing, toileting, eating, taking medications, and everything else.

Please don't try to do it all alone. Your daughter can help and should be allowed to.

Also use the Alzheimer's website as a resource -- alz.com
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I'm confused as to WHY your daughter would even be involved if you needed to move your wife to a memory care facility? If my DH ever had to do that for me, not one of our kids would 'fight him' on it, nor would they want me to come live with them

If you are 'hands on' caregiving for 20 hrs a day, then your wife is NOT ok to be living alone with you, w/o help.

You can hire aides, so minimally, you get some kind of break. Or you can move your wife to a MC facility, where they are much more used to/capable of giving care.

You really don't want to become one of the statistics that says that a large percentage of CG's die BEFORE the person for whom they are caring.

Good Luck to you--
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Have you ever considered that your wife doesn’t want to be a burden on anyone, especially you?

If I were in the position of causing my husband to care for me 20 hours of the day, I would rather that my husband make arrangements for an assisted living facility or nursing home.

You can still be a part of her life. You can advocate for her well-being.
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Harpcat Mar 2021
This is a very wise and heart felt reply
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I just put my dad in assisted living (not memory care). He has dementia but it has not been determined as Alzheimers and it seems to be pretty stable and not getting worse. Physically, though, he needs help with showers and some help getting around. He has been in assisted living for only a few days and he loves it! I watch on the camera and people are coming and going and checking on him all day long. Down the hall there is a couple living in a two bedroom. He was in a one bedroom because of his issues and the wife decided to join him after she saw all the other abled body seniors doing fun activities. They are very happy in their two bedroom. She still drives etc.. but she now has built-in activities and friends and can be with him full time. And, for the second person in a room, the cost isn't really that much... basically, it's food, utilities, and a smaller amount of rent because they know they won't have to provide as much care for the person who is there who needs help.
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You must hire some outside help to assist you or place her in the appropriate facility, as you cannot continue on with the way things are now. The fact that you say that you "can't leave her" tells me that the thought has actually crossed your mind to leave her. Do you not love her any more, or is it just that caring for her has just gotten to be too much? Whichever way you answer that, the most important thing here is that you are taking care of yourself, and doing what is in the best interest of your wife, and yourself. You and your daughter need to work together in finding the right solutions for your wife's care. Be up front and honest with her, and tell her what you told us, that you just go on caring for your wife, her mom anymore. Together you can make decisions that will not only help your wife, but will help you as well. I'm sorry you are under such duress, but there are answers for you out there. You just have to be willing to take those first steps. I wish you the best in this tough situation.
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I am so sorry that you are having such a hard time right now. 20 hour a day caregiving will totally burn you out in a very short amount of time.

I'm not sure what you mean by too stable to go into a nursing home? I would think that a person needing 20 hours a day of care is a perfect candidate for a nursing home! Please, start calling local homes NOW. You can't keep up this pace.

Until you can get her placed somewhere, please hire someone from a home health services company to come over and spend a few hours a day with her so you can take care of yourself. Get out of the house. Get in the fresh air and sunshine. Take a walk. Take a nap. Have lunch with a friend. You deserve some time for YOU.

Good luck.
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Stable has nothing to do with placing her in Assisted living. If she is becoming a 24/7 job then place her. My Mom was a healthy woman other than having Dementia. The only thing she could do for herself was feed herself. You couldn't leave her to dress or bathe herself. She could no longer tell time, so didn't know when to go down for meals. AL criteria is not the same as LTC.

If its getting too much for you, then its time for Assisted Living.
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What does 'too stable' to go into assisted living mean??? My mother was walking, talking, eating, toileting herself, showering herself, and otherwise perfectly fine when she went into Assisted Living back in 2014 with my father. She was suffering from neuropathy and no longer able to live alone or manage an apartment by herself; ie: cooking, cleaning, etc. Are you under the impression your wife has to be totally 'unstable' to 'qualify' for Assisted Living? Dementia ALONE is one gigantic reason to place her in a Memory Care Assisted Living residence and if your life is being ruined caring for her, she's obviously more than ready for managed care.

Look into Memory Care right away and learn all you can about what it's all about before you make assumptions.

Good luck!
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Dear k5866752,
If you are having problems caring for your wife, please consider adding more people into your lives to help with her care: family members, friends, members of your faith community, and/or paid help. This community could give more advice if you were willing to share a few more about your wife's condition.
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Put your own oxygen on now.

Reaching out for help is the first step. Looking the situation in the eye & acknowledging the truth of it: your wife's care is more than one man can do. It so often becomes a one man show, the lone caregiver. Now time to recruit your team, before you mentally & physically exhaust yourself (as that will help no-one 😞).

Two choices I see;

A. More care at home:
? volunteers, ? daughter, most probably paid aides

B. Wife moves to where care is provided. Maybe AL or maybe Memory Care. Aging Services & professional trained in this area can be consulted to locate the right fit.

Could consider tryng A. first? At least until more people are vaccinated & the Covid risk lessons. Then consider moving to B.

Also, have a good honest chat to your daughter. Building a support team for YOU is so important too.
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NeedHelpWithMom Mar 2021
Wonderful response! I love how you described step by step what can be done to help.

We need to be reminded of these things.

So often we place ourselves last during caregiving, thinking that we are doing what is best.

In reality, we are not doing what is best.
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You are exhausted! (I would be, even just reading your post!)
We do need more information.

When you say:
"She is too stable to go into asst living or a nursing home but this is killing me."

What exactly do you mean?
Has she been formally DXed?
Is she able to get up, bathe, toilet, shower, feed herself, etc?
Requiring 20 hrs/day of help from you doesn't exactly sound very "stable."

She would likely not need NH care, as generally the patients/residents require skilled nursing. However that would not exclude her from being eligible for Memory Care.

My mother was still mobile, able to bathe, dress, feed herself, etc. but she had dementia and it had gotten to the point where remaining home alone was not safe. We tried bringing in aides, initially only 1 hr/day weekdays only (they had no "duties" really, just check on her and make sure she took her meds from a dispenser.) The intent was to allow her to remain in her own place and increase time and care duties as needed. She refused to let them in after less than 2 months.

We did NOT have any medical tests done and she was NOT DXed by a doctor at that point. Again, details explaining what you mean by "stable" is needed.

You certainly don't want to abandon her or burden your daughter with her care. You CAN enlist your daughter's help in getting the help you need.

One BIG gate to facility care is financing. If there are no assets to provide for her care in a facility, you need to seek out what assistance might be available. The first step might be to get some in-home help for you, so that you can regroup and formulate a plan. Are there enough assets/income to hire some help, even if just temporarily until a plan is reached? It doesn't need to be 24/7, just enough to give you a breather.

Also high on the list is to get a full assessment and checkup. The doctor might be able to order an in-home assessment, covering not only her cognitive issues, but all capabilities and lack thereof. The aide company I hired sent a nurse first, who did a cognitive test in the home, with us present. It was a better test than the one doctor offices use. If wife's already been deemed incompetent, then the assessment should focus on where she needs assistance. 

Meanwhile, find local EC attys and ask about free consult. Many do offer a short consult, so have all your questions, concerns and financial facts ready (daughter can perhaps help here, locating them and helping you to draft Qs and financial information.) It would be great if she could attend the consult with you - she might have questions or be able to explain things.

The atty should be able to determine if your wife would qualify for Medicaid, should there not be enough income or assets to cover self-pay facility care. Most states don't cover MC with Medicaid, but there are exceptions. Additionally, some who don't qualify for full facility care DO qualify for limited in-home care. If you own your home and have some assets and she qualifies for Medicaid, the home will remain for you to live in and the assets will be split between you, with her income and share going to the cost. The goal is to NOT make the remaining spouse destitute! If there's no house (rental), they will still split the assets you have - they won't take it all. This is one reason for spending the money on an EC atty, so that you don't end up paying for everything leaving nothing for yourself.

I can say that for federal taxes, MC is fully deductible. AL is not. More that likely in-home care would also be deductible, so her income might become tax free (once mom was in MC, she was no-tax status and paid no federal tax.) Depending on the state, some might be deductible - that's a question for tax expert! Our state doesn't have income tax.

Enlist the help of her doctor and your daughter. Find EC atty who can guide your decisions/moves. Hire some help, temporarily at least, to give you some respite and allow you to plan.
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K, if you add location details to your profile we can help you do some first-step research. If you aren't happy to do that, try typing "caregiver support in [name of your town, county, state]" into Google and selecting carefully from the results.

I don't know what you mean by "too stable" for assisted living or a nursing home either, but I am pretty sure that your options are not as limited as you think. There are definitely more to choose from besides your hating every day of your life or your daughter's life being ruined.

How long have you been your wife's caregiver?
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You tell her doctor or your doctor that you need reprieve... They should be able to place her or you temporarily to give you rest. It is necessary... they should realize that, or give you care in home for some of the time in your home........

prayers are with you.
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OldArkie Mar 2021
but if you plan to stay with her, she will forever resent your submitting her for evaluation and will know you want to get rid of her. Plus, she may not be willing to submit, and I suspect she still has capacity to resist!
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ask her doctor for palliative or hospice evaluation... they should be able to do that
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Some have said to leave your daughter out of the equation, but as a daughter (who came upon this forum d/t my dad's increasing memory issues, and mom's physical health decline, as well as difficulty coping with his memory issues), I think being open and honest with your daughter, essentially (hopefully) creating an ally. This would be a good first step to helping you answer your (seemingly) conundrum. Take care of you, and get some assistance for her.
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I send my husband a couple days a week to daytime memory care .he goes 2 days for 5 hours and that’s 5 hours for me.
range of prices ask your local social services. The one my husband is a not for profit . His is $86 a day...worth it for mr
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Dear k5866752 ,

I'm so sorry you are going through this but I must ask , who has declared her too stable, you ? Did you get an assessment to that effect .?
You're in your golden years and you deserve a rest at this stage of your life . Don't let guilt or fear take what's left from you, see if you can place her in a home or facility tailored to her needs .
You're not abandoning her , you are giving her the very best and what she needs.
Caregiving is rough on people in their 20s, 30s and 40s never mind 75 . You've done your best but stress is a killer, help yourself and start looking around for a home as soon as you can .

I wish you guidance in your choices and luck .

L
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Davenport Mar 2021
Thanks for your thoughts and perspective. Super stuff! However, I'd chime in that 'we don't deserve [this]', in my humble experience and opinion, goes without saying, and merely states the obvious. No one 'deserves' 'this'. I'm in my mid-60s; my mom's 90+; I've had devastating losses in the past 10 years that I've never had 'time' to process or recover from. SO many of us aren't remotely financially able to hire respite care for even 4 hours a few times a week, given our cared-for's (and our own) financial situations/resources. I COMPLETELY acknowledge the critical importance of talking about (not stuffing) our emotional and practical truths. But to say to a 75 y/o caring for his 75 y/o wife of who-knows-how-long, practically, 'not let guilt or fear take what's left from you' isn't particularly kind or helpful. Maybe for a person in their 40s, or even 50s (based on my own experience). I know one man, 76, whose wife is 77+ and very dependent physically, and moderately, psychologically (but to the extent she wore him down to nubs in 10 years) They happen to have some wealth (relative to 'middle class' standards). She's willingly and happily moved into a wonderful, idyllic 'retirement home/community', close-by, that supports by gold standards everyone there at EVERY stage and age of life; grounds and accommodations are idyllic; it's luxurious. Hell, who wouldn't want that? But honestly, VERY few spouses (or caretakers generally) have the luxury of living their 'golden years' with such serenity and reassurance, and enjoy themselves with total peace of mind knowing their long-time spouse is so ideally situated. That's my two cents. With respect and gratitude.
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What makes you say she is too "stable to go into AL"?
If her care is getting to be more than you can handle then you have no choice but to place her in AL (I would think that Memory Care would be a better option)
Is there a possibility that YOU would consider both you and your wife move into Assisted Living. You can be with her. You can get the help that you need to care for her SAFELY. When your wife declines to the point where AL is no longer a safe option a move to Memory Care would be an easy transition and since most Al have MC in the same building you still be able to see her, help her with some things. And you would have a community around you that you could take advantage of transportation to the store, some have transportation to doctors offices. Most of your meals would be provided...
And bonus..your daughter will not have to worry about caring for you when the time comes that you need more help
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There is independent living instead of assisted living. Also, there are places where you both can live. That would take a load off of your plate.
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OldArkie Mar 2021
...but you better be well heeled if you plan on a independent living solution!
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You need to be able to leave your caregiver job for a few hours a week. Your daughter could come over for a few hours so you can do something for yourself such as go to barber shop, meet a buddy for coffee, etc. Do errands, shopping, walk in the park,around the block,. Your attitude will change . You will be revived.work in the garden, plant some flowers just do something for your own health.if you get to the place that you will need care who will take care of both of you. Home care is an excellent way to give you some time to yourself. Good. Health and God bless .
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