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I know it's a 'what if' situation, but I lay awake nights worried about what will happen to my husband if my cancer comes back, and I end up passing away before he does. I take care of him in our home, and hope to do so until..... Our son says he will not have Dad come live with him. Our daughter has a full house of kids, and has no room. We really don't have the money for him to go to a 'facility'. Any advice on how to sleep at night would be appreciated.

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Thank you all for your valuable information. We have the POA's, POA for Medical, and Wills taken care of. A little more information: Our son had us move closer to him (he bought us a condo) so he could help take care of us. That was 8 years ago. Last year, during chemo, covid, my double pneumonia and hospitalization, and double mastectomy, he had his Dad staying at his house while I was in the hospital. It was so hard on him (emotionally) to see his dad decline, he said that Dad could never come live with him on a permanent basis. Our daughter, living in another state, doesn't have the time or temperament to care for another person. She thinks I should put him in a MC unit NOW, as she thinks I can no longer care for him myself. I told her that WHEN and IF I find another place for her Dad to live, I will make the decision, not her. She wants to take it out of my hands, and has been looking at MC places in her state. Fortunately, she has nothing to say about it. I've come to the conclusion that I can no longer 'vent' to either of them. Will no longer tell them the frustrating day to day drama. Did I mention that I am legally blind, so neither of us drive. I will arrange for a ride and get an appointment with Dept. of Aging, as well as with an Elder Attorney. I'll feel better once my bases are covered.
Thanks again for your recommendations.
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Llamalover47 Nov 2021
Helen4sure: Thank you for your update.
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In my city I worked with a specialist from the Jewish Federation who knew how to maneuver through all of the options for senior care, for my mother.
You need an advocate, because you're worried, you're recovering, and this is a lot to deal with. Some things to try in your area could be a geriatrician, an elder care attorney, a social worker.
Make a plan and a back up plan, put it in writing, have it notarized and file it with whoever and whatever and wherever it needs to go.
The best way to deal with worry and rumination is to get busy and make a concrete plan. Once that's in place, you can enjoy your time together rather than worrying.
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Short answer to your question, which was asking for advice about how to sleep at night. See your doctor about medication. Or better, learn some relaxation and anti-anxiety skills.
Seriously, I know how you are thinking and feeling. A few years ago , I went through a year of breast cancer treatment. At that time, my husband of 50+ years was fading into dementia, and I definitely worried a lot that I might die first. My fear was that he’d have to be placed into a memory care or nursing home facility, Because of his life history and personality, I feared he would experience a horrible end of life.
As things developed, I survived cancer (it’s been 9 years), I was able to keep him at home until he passed away one year ago (married 58 years), and I think our only child would have been there for him had I gone first.
One thing you can do now, is find out what services and resources are available for the outcome you fear. See what can be put into place now. Has your oncologist given you any idea what your prognosis is? Most breast cancers are more treatable than in the past. You are probably not anywhere near back to your “normal” self yet, so this planning is still important. I was able to get four hours of daily help, which made the difference in caring for my husband at home.
I wish you the best. You can do more than you think you can. Whether you should is up to your circumstances.
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Do you own your property? If so sit down with your busy kids and discuss POAs and how they would arrange for your husband to be looked after. They may not be in a position to have him live with them, but they can reassure you as to how they will ensure he is cared for should the need arise. Best wishes for a long remission for you, and for finding a good solution with your children.
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I don't think you can, or should, try to force your children to house their father against their wishes. Does your daughter want her father to move into her home that's already full of kids? Most people are not equipped, or qualified, to deal with Alzheimer's on a full time basis for a parent and have no idea what all is involved. Expecting your daughter to take on THIS level of care in addition to what she already has to deal with, in my opinion, is asking too much (not that you ARE asking this of her; others here are insisting you do). It's emotionally very difficult for a child to care for a parent suffering the ravages of one of the dementias, too, which few people seem to understand! To then read advice suggesting you 'cut them off financially' unless they agree to these terms is nothing short of bribery and totally inappropriate, imo. Who DOES that to their own children? SMH. One of them can be assigned POA for their father if you were to predecease him, without having to move him into their home. They can then make care decision on his behalf instead of you.

Please follow igloo's sound advice and get the ball rolling now to see what guidance you can get from an Elder Care attorney about Medicaid, etc.

Wishing you the best of luck and good health for you moving forward.
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Helen4sure: Imho, he will apply for Medicaid if need be.
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He has Alzheimers so he most likely would have to go to a nursing home and Medicaid does cover that - they do NOT pay for assisted living.
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HisLittlePistol Nov 2021
I am sorry, but that is simply not true. Medicaid assistance for assisted living varies depending on your state. The same applies for independent living, assisted living that have a dedicated dementia/Alzheimer's "unit", in-facility hospice, etc. Rather assisted living (or any facility based care) is covered or not in YOUR STATE or not, is due to Medicaid being partly funded by the federal government AND partly by the state. The federal government has set some guidelines on how each state must spend their Medicaid funds. Yet still, the state is permitted considerable latitude within those guidelines to choose. This allows each state to have its own policies on how they manage/provide for those who choose assisted living (or again, and facility based care).

There are MANY types of Medicaid programs (also referred to as "plan" choices- IE where I live one of the most chosen is a plan under Blue Cross Blue Shield aka BCBS) that pay for services in assisted living. There are commonly used waivers by Medicaid, used by all states allowing care (HCBS aka Home and Community Based Services, 1115 Demonstration Waivers and 1915b Managed Care Waivers). Then there is your basic, "plain ol' Medicaid" (which is often referred to as State Plan Medicaid) that's also used in some states for assisted living services. There are definitely options to be explored with Medicaid, of course depending on your state and what it offers at the current time you seek those services.

Hope that helps!
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You must make provisions now to place him while you still can. YOU cannot carry this burden if he has Alzheimers and should not have to. I realize you don't have money but I assure you there is money out there for these cases - you just need help to find it, i.e. Medicaid. Talk to the local Office on Aging or a social worker and start finding out how to place him and how to pay for it. He cannot go home to the son or to the daughter - it would be impossible. These organizations can help you with this quest. Do it now - not later.
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No Worries, Your Husbands Insurance and or Medicare will pay to have him in a Nursing Home.
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RedVanAnnie Oct 2021
I do not think Medicare pays for Nursing Homes.
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If you really do not have money for facility placement, research Medicaid options and requirements for your husband's care. You may never need them, but you would feel better if you were prepared.
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It would be wise to research facilities near you, your son and your daughter. Choose a couple in each location that will take Medicaid clients as well as private pay clients. Give the lists to your children. Please, please, please visit a lawyer and take your husband with you. Have wills, powers of attorney for medical decisions and financial decisions, and advanced directives drawn up for both of you. Decide before this appointment on who will make medical and financial decisions for each of you if you can no longer make them for yourselves. I would suggest you be named as primary for your husband and probably the children as the secondary.

If you are so sick you would likely pass first, it would be best to place your husband into an assisted living facility that can "phase him" to memory care as his dementia progresses. Even if you are not likely to pass first, you might consider this possibility when his care becomes too much for you to handle alone. Please look up Medicaid and print out the paperwork, instructions, and qualifications for filing. Fill out as much as possible and keep list of your financial institutions and with account numbers with the paperwork. Then, let your children know you have filled out the paperwork as much as possible so that they only need to fill in details when/if it becomes necessary to file of Medicaid. Make it easy for your children to find all your financial records, health information, legal files... as possible. In case they need to take over for you if you are hospitalized for your cancer or other serious health issue.
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rovana Oct 2021
Very wise. Too often the kids need to act and have no clue as to parents' financial lives.
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Cut your son off until he agrees, duh.

Also, help your daughter get more room. She is best suited due to already dealing with kids --who can help. In fact, maybe you should start transitioning to this to help prevent your cancer from coming back from the stress!
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lealonnie1 Oct 2021
You're kidding, right?
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Get connected with a social worker in your area who can advise you of your options. You need a Plan B for the situation you are worried about, and it's better to plan for it than to be worried. Make sure all of your paperwork is in order with powers of attorney set up for medical and financial matters. It may be too late to do this for your husband, if his dementia is advanced. If you have assets, you should also have a will. The social worker can also advise if there are pro bono attorney services in your area to help set up these legal documents, if you need these services. There may be ways for him to go to a facility, even on limited budget. The social worker can advise you on whether he qualifies for Medicaid.
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TouchMatters Oct 2021
This is what I was going to recommend.
Or contact her county senior services dept.
I would hope that the son or daughter would come through to assist in making plans so the mother can relax (more) and not worry at night. I feel for her immensely.
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Set aside your BC illness. Your husband's situation indicates the more uncommon wills to deal with your death for any reason. Usually the wills are the same - spouse to spouse. In your situation, there is no point in passing off finances to a spouse who may be even worse and unable to handle what you give to him. Yours needs to be a little more specific in that hubby's care can be provided by one of the children or placement in NH with all funds from your assets being tossed toward his care (for as long as it will last). That would give the kids an opportunity to step up and have much of the care paid for or for both to decline to take care of him. As for your husband, you may be able to eliminate most of his assets as transfers upon death to you if you are still living at the time - or worded the same way as yours: liquidate all assets and create a trust/acct to pay for all of his medical needs. You really need to talk to an atty quickly to get both wills in place now. You just never know what could happen tomorrow.
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Couple of things for you to think about and you can do almost immediately, if you’re the kinda that needs to do something to feel ahead of the situation, is to
1. do a preneed funeral & burial / cremation plan and one that realistically you can buy in full for both of you
2. change any & all accounts (banking, life insurance, any investments) that currently have you & hubs as each other’s “beneficiary of” to instead go to whomever is your & hubs POA. Most married couples automatically have each other as their beneficiary and that make sense when we’re kinda still young and our kids are minors, but not necessarily good as we age. Like say you have a term life that pays 10k to hubs as he’s your beneficiary as policy was done back in 1990….. well he probably couldn’t even be able to do any filing to even get the paperwork started, I’ll bet. So doing a “beneficiary of” change makes sense.

Also By doing “beneficiary of” it allows that asset to pass / pay to the beneficiary without involving probate. Having stuff be beneficiary of removes it as a probatable asset.

The issue then becomes which kid is to be the POA? Unless you have an attorney or a close friend to be your & hubs POA, it’s gonna be one of the kids. Unless you know for sure that neither will step up to be POA. Also give that some thought if 1 will be all bent if you pick the other. The whole Smothers Brothers “mom loved you best” is unfortunately true in many families. I’m a only child and even then had could not help themselves wanted to interfere 2 older cousins that I had to tell & in writing to STFU. You know your kids best…..

As far as what happens if you predeceases hubs, it could be any of us. We all could get hit by a bus, then what? Actually imo your knowing the kids situation AND that he needs caregiving with some degree 24/7 oversight allows you to be way more realistic as to what his future needs to look like. He’s gonna need to go into a facility, and unless you have a ton of assets, like 500k-1M, excluding your home, there’s going to be LTC Medicaid in the future for him as there’s always the risk that you too will need in a facility care. So unless y’all are big $ assets that means Medicaid planning and it’s not ever, like never ever, imo a DIY. You would be a community spouse for how LTC Medicaid runs and you do not need to impoverish yourself for hubs to be Medicaid eligible for him to be in a facility. Only hubs needs to meet Medicaid LTC “at need”requirements. But just how to do this and do it so that it’s all legit for Medicaid in your state needs insight from an CELA level of elder care lawyer. There likely is a pretty smallish narrow list of CELA ones; 1 will be a good fit for you. If the kids truly won’t step up to be POA, the atty will have a suggestion as to how to deal with this. Good luck in your quest.
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Your son, as his next of kin will be contacted to be his conservator if he wishes to serve. If he does not the court will be his conservator and appoint a fiduciary who will take over his finances and his placement. I hope that you will be fine, but at least there is SOME family to be somewhat involved. I am so sorry you are facing this. There is no real money involved here so at the least you won't have greedy family making decisions for your dear husband.
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As said, if children not willing to take him in, then he will need to go to a NH.

Do you own ur home outright? If so, it will need to be sold for his care if u go first. I think consulting with an elder lawyer would be good.
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Helen4sure Oct 2021
Thank you JoAnn. I think now would be a good time to involve an elder attorney.
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He will apply for Medicaid and be able to move to a NH that accepts that as payment. He must have SOME money coming in.

You need to talk to your kids about this. They will probably both balk at the idea of having dad live with them (mine all did when I was doing cancer txes) and so I talked to DH about what he should do if I died first. It's completely possible, so he did need to at least think about it.
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Rick10 Oct 2021
He would go to a NH on Mediciare. The home will take his monthly social security and evaluate the value of any assets, other than a family home in most cases. If SS is the only cash asset, Medicare will cover the rest of his care. Medicaid in my experience with my mother and sister, will be handled by the AL center or the NH if needed. In so many cases, if he has the average monthly SS, Medicaid is not what you would apply for unless he has below the average SS or no SS at all.
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