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BettyG Asked June 2014

Have to make a big decision, put hubby in nursing home or not. Any advice?

I have not posted since last Sept but have been reading. The time has come to decide what to do with husband. He has been in 4 hospitals and 3 rehabs since January 2014. Diagnosed finally with vascular and Lewy Body dementia. He now cannot stand at all, knows me and family but has no clue about most of our life, is still verbally abusive (was before he got sick) and I am now getting sick myself mentally and physically, headaches, body aches, etc. Stress. I am sole caregiver with not much $$$. I had to stop working since 2009 to care for my dad and now hubby. Not sure I can care for him at home even with home health care that can come in few times a week for a few hours. He is currently in a halfway decent rehab/nursing home and they have been trying to talk me into having him live there. That tears me apart with guilt. I figured they just want the business so I consulted his neuro and primary care Dr and they agree. I have meeting with elder care lawyer in a few days. I do NOT have POA or any kind of guardianship over hubby yet. Speaking on phone with the elder care firm, their solution is to get conservatorship (sp?) which is very costly, use the money from an annuity hubby has in his name only, pay off our home which would qualify him for Medicaid and would leave me the home, a car and I think they said $1800 per month in cash. Has anyone done this? He has 2 adult daughters that are beneficiaries of this annuity and they would not have to fight me on this or the cost goes up to what nobody can afford. I do not think they know they are beneficiaries (it is not a ton of money by the way) and I can go on and on but guess I will see what I get out of my appt. with lawyer. I guess my question is should I do t his or try again to care for him at home and see if I can??? Thanks to all for reading.

igloo572 Jun 2014
Betty - please keep in mind that you will considered the "community spouse" and as such are NOT expected to make yourself penniless for hubby to qualify for Medicaid. Most Medicaid for NH do not have a still living at home spouse and so most of what you read is geared towards situations for widows or widowers and that is not you. There are some things that are better to do if you are a CS - like say you still have a mortgage on the home and you use his spend-down to pay off the mortgage; if you have 2 cars then trade in both to get 1 newer & more dependable car; if you need to do any repairs on the home or renovations to make the house work better for your to continue to live there, that is a good spend-down of hubbys assets. You want to try to keep whatever your state allows as the maximum for CS - most states have it at about 112K.

Also you can apply for MMNA - monthly maintenance needs allowance. Think of it as alimony for the elder set. Say you all have been depending on his retirement &/or SS to make ends meet. Now in theory if he goes on Medicaid, then the state Medicaid program expects him to do a co-pay of his monthly income. The co-pay is also called the "SOC" or share of cost. The SOC is whatever is his income less his personal needs allowance (this varies by state from $ 35 - 90 a month). So there is no income to spend except for the personal needs allowance. But as you are the still-living in the community spouse, you can file for some or all of his monthly income to be diverted to you to enable you to continue to live within the community. But you have to apply for MMNA - which your attorney can do.

ALso you probably want to change the beneficiary on your insurance policies. Most couples have each other as their beneficiary. But if one of them is on Medicaid, you don't want that. Like say something happens to you - like a car accident and you die - then hubby inherits your life insurance and causes him to disqualify for Medicaid. You are not there to deal with all this and it's a whole muddled cluster for him, which he doesn't understand. You can speak with the attorney about options on this, maybe a special needs trust for him if you don't have a lot of family to look out for him. None of this is simple or straightforward but good you are doing this now & before you are in a panic situation. Good luck.

BettyG Jun 2014
Thanks all for your answers to this awful situation. I have an appt with the law firm tomorrow and will see what will happen with this spending down and Medicaid situation. I have to weigh it out to see if it will leave me broke. I think I am worrying too much but scared to death over all of this. Your answers helped me a lot. I will keep you posted and thank you very much.

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Eyerishlass Jun 2014
Nursing homes have waiting lists. They're not trying to get your business or make a buck off you. If you decided not to place your husband there there's someone else waiting to get in, money in hand. You're being told that he needs skilled care because he is unable to continue living the home.

This is such a difficult time for you. It's a huge decision but based on what you wrote I think you know what to do. And this kind of decision is never, ever guilt-free. Anyone with a conscience and a heart would feel guilty and someone telling you, "Don't feel guilty" isn't going to stop you from feeling guilty. But you have nothing to feel guilty about, just like I had nothing to feel guilty about when my dad went into a NH even though I felt guilty all day, everyday. There's just no way of getting around this decision without guilt but you can't continue to care for your husband at home in his condition. Like someone else said, he needs around the clock care, 3 shifts of people doing everything you have been doing alone! Of course your stressed and sick.

Once you've crossed the T's and dotted the i's I think you'll feel a sense of relief and you can visit your husband without the stress of being the only one responsible for caring for him.

GardenArtist Jun 2014
Of all the medical issues, I think the one which would most warrnat a continued/permanent nursing home placement is your husband's inability to stand. This dramatically increases your responsiblity and physical burden, as well as the possibility for fall. It changes and adds a more complicated caregiving dynamic. Special equipment is needed, which the facility would have.

As to the legal issues, the first would be whether your husband is still cognizant enough to create a Durable POA and presumably a health care proxy as well. If so, I would put a conservatorship on the back burner; it will cost significantly more and is much more complicated.

I'm really not sure what the advantage would be unless he's not mentally capable of executing the POAs. You might ask the neurologist about this.

And a conservatorship requires filing of accounting reports to the court, a nuisance if nothing else.

Does he have a Will or Trust? If not, that should also be on the agenda.

As to the annuity, I think the advice you've received is wise. The annuity would presumably continue to increase in value, but by cashing it out now you position your husband for Medicaid qualification. Given his physical deterioration and dementia diagnosis, you may very well need it.

I'm not an expert on this and haven't read an annuity in decades, but I would read the beneficiary clause and see if it provides them any rights now, or at some future time such as your husband's incapacity or death. If they have no standing now, then they can't contest and you can cash in the annuity.

The other question would be the longevity of the annuity and whether or not penalties for early surrender would apply.

As to the elder law firm, if you're not comfortable with their recommendations and they push you toward a conservatorship, you can always find another firm.

Good luck. It sounds as though you've got a really good grasp of the situation and have plans in the works to move forward.

And don't feel guilty about a permanent placement for your husband. You'd actually be doing both of you more good than trying to manage his care at home. Just keep thinking that this is the best move for him under the circumstances.

littletonway Jun 2014
Ahh BettyG, You have done so much already but need to take care of yourself. I would suggest allowing the professionals to take care of your husband. You will still be your husband's advocate with the added benefit of being more of a wife than caregiver. Guilt should not be in your vocabulary!

Someone else will have all the legal info.

It is just time to do what is best for both you and your husband. Best wishes!

blannie Jun 2014
You have done more than your share. When it starts taking you down physically, it's time to let the professionals (where there are THREE shifts of people doing what you're doing by yourself) take over. You can visit your husband and support him, without doing the 24/7 hands-on care. Loving and supporting him doesn't mean you have to give up your own health in the process.

So go with the professionals and try to keep him where he is. And DON'T feel guilty! You've done your human best and that is all you can do. HUGS to you.

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