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He has a Traumatic Brain Injury. I work full time, go home and spend the rest of the day caring for my husband. He refused to go to the doctor, had a very severe heart attack and went without oxygen. He now has a Traumatic Brain Injury and Parkinson's now. He has a caregiver with him while I teach school. I have done this for five+ years now. I am only 57 and need to continue to work for my financial security. I am finding that both my mental and physical health are starting to fail. The GUILT is overwhelming when I think of placing him in a care facility.

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I am sure that she would not have wanted you to sacrifice your future and your health. With Parkinson's and brain damage he is not really there any more.

Please don't feel guilt, a care facility is better for him, and for you.
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1949caregiver, my prayers and empathy are with you. It is a place you probably never dreamed of being in your life or marriage.

It is a fact that because of the level of stress, caregivers often pass before their loved ones. I want to encourage you that placing your husband into a facility where you can go and visit with him without the brunt of the care upon your shoulders would be better than something happening to your health to where you could neither care for him any longer nor visit with him. Your love for your husband is great, and you can return to expressing that love and dotting on and laughing with him more if the physical care needs are being met.

I have a friend at my dads NH whose husband has been there for a very long time. They are younger, probably 60s or 70s. She comes most days at suppertime, feeds him, and then spends some quality time rubbing his feet and legs and just talking with him (he is non-verbal) for about 30-45 minutes and then goes home. He loves her so, and she him. You can see it in their eyes.

Moving him to a facility is a hard step, but not one to feel guilty about. You are human and humans have physical and emotional limits. That's not wrong or bad, it's just a fact.
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1949 - make finding a place for him your main resolution for the new year & "I can do this because his care needs to go to the next level" your mantra.
Realistically you could be looking at his being in a facility or a decade or two & your needing to also take care of yourself. You need to do whatever to optimize his care and your own well-being (both physical & financial) and plan on having both done within 2017. Unless you all have a huge retirement income and investment portfolio, he is going to need to apply to and become elgible for Medicaid so that he can go into a ltc facility that accepts meducaid. He will need to become impoverished for Medicaid. He NOT you; you as the "community spouse" /CS do not have to become impoverished. For couples dealing with the maze that is medicaid it is probably not ever a DIY project as there is just too too many details and you basically have your brain & body full between caregiving and your full time job. You all need an elder law atty, I'd suggest you get one that s NAELA certified as couples divesting & restructuring is more complex.

There are things you can do.... Like right now till early Feb. all the paperwork for taxes & those awards letters (like from SS & retirement) are being mailed out. You need to start a file or box for them to go into so your atty. can get an accurate picture of what's what. If some things need to be changed, they get changed so that he can be eligible maybe this summer. Your atty relationship probably is for years so I'd try to speak or meet with maybe 2 or 3 and find one that you mesh best with. Often it's little things that become sticky... like for Medicaid you are allowed 1 car as an exempt asset but most couples have 2 but if you give 1 car away it causes a transfer penalty as its "gifting"; another sticky is life insurance as most couples have each other as beneficiary but if you should get whacked by a bus that insurance $ to him from your death causes him to be ineligible for Medicaid and just who will be there to deal with this for him?..... It's planning for and changing things like this that make an atty invaluable.

Your apt to hear that you have to become impoverished. Not true. All states allow for the "Community Spouse" /CS to retain assets outside and seperate from his needing to become impoverished for medicaid. Most have it at $ 119k plus whatever exempt assets (house, car). In addition should you need some of his income to maintain your lifestyle, you can apply for CSRA or MMNA. Community spouse resource allowance / monthly maintenance needs allowance, think of it as kinda like alimony for the NH set. Some states have CSRA pretty high. Like for TX it is abt $ 2,800 a mo. So say hubs income is 3k a mo but you qualify for full MMNA so his medicaid required copay (or SOC share of cost) could just be $ 200 a month as you get the first $ 2800. Really it's not a DIY to wade through.

Atty may suggest you do a SPIA if you all have assets taking you over the $ 119k. Personally I hate annuities as an investment strategy, but for a CS doing a medicaid compliant SPIA to get hubs Medicaid eligible is a solid plan. At your age, I'd bet you will outlive any SPIA, so it totally makes sense. There aren't a lot of underwriters for theses type of SPIAs but a good atty will have FAs that they work with regularly who can get it done. I'd plan for maybe 6 - 8 mos to get legal & financials all Medicaid compliant. Whatever needs to be done BEfORE he applies for Medicaid, as your & his financials will be based on day 1 of his Medicaid application.

You start looking for places during that 6 -8 period of time . Getting hubs name on waiting lists. It may be that your first & second choice have no room. But a facility in the next county has a open bed & will take him "medicaid pending". You can move him to another & better LTC later on. It can be done, I moved my mom from NH # 1 to an eons better NH #2 at month 10; mom was Medicaid pending for 5 & 1/2 months then got the eligible letter at mo 6. & it took another couple of months to work out a glitch with her copay at NH #1. As an aside on this, her NH #2 deliberately had the rooms at the end of the wings by stairwell were set aside for spouse in the NH situations; Medicaid requires shared rooms so they all have roommates. But if there is something about the place that doesn't allow for this, the rules get suspended. The room next to stairs just too small for 2beds so single bed only! Often CS would spend the nite too as it had a small sofa bed. Hey what happens in a room stays in the room.....

Please realize that Medicaid is run by each state but within overall federal guidelines, so how TX does things could be way different than MN. good luck in all this. Make a plan & remember to include time for yourself.
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I haven't had this experience. This must be so heartbreaking for you!

I have friends who have an adult son with severe cp. For years they hand fed him, carried him from wheelchair to bed, literally breaking their backs. He's now in a good care facility, has activities and good care. They visit and more importantly, they are getting their health back, and are able to work and be there for their two other children.
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My brother in law was put into a nursing care facility in his late 40s, he passed in nursing care at 50. He was obese, had a couple of small strokes, and heart disease. His mother, who he'd lived with for years, was elderly and unable to care for him, said brother in law never married, had no children. Another brother in law was put in nursing care in his early 50s, lived several years between nursing facilities and hospitals with a rare heart disorder. He passed in a hospital. You really don't have a choice, I can tell you both of these men were able to have a nice life where they lived, they both lived in different facilities. One was even able to bring in his own recliner and a nicer tv than what the facility offered. Because these men were very vocal about what they wanted and well, bossy, they were able to pretty much have whatever they wanted in facilities. Everyone went to visit them both often. It took a huge load off their mother, and she made it to 80. She wouldn't have if she'd continued to take care of them.
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What are your options? If he's on Medicaid you can get him in a nursing home. You have to remember with Parkinson's and Traumatic brain injury he's only going to get worse as he ages. You still are young and I hate to say this your husband can suck the life out of you. You are lucky you are able to find a home caregiver while you work. Just for sitting services (the only sit and do no hands-on care) at an agency is $20 an hour. I care for my mother who has late stages of Alzheimer's and I essentially cannot work because of her--it would cost a fortune to have a CNA and home health. A CNA is about $40 an hour (they do hands-on basic care). To give her insulin and titrate her medications a home health LPN would cost hundreds a day just for that. Plus I have to pay about $600 a month for Obamacare with a $7,000 deductible because I'm 56 years old -- health insurance so expensive I never see a doctor due to exorbitant deductibles -- Florida did not expand Medicaid and I do not make enough money to have have Federal subsidies and I can't get on Medicaid because I have a life savings which I may need for my mom in case something happens. So I feel for you. If you can get him on Medicaid--do it and go from there. You can get respite care to help recharge yourself. You can get other services like daycare.
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My heart goes out to you. I have never had to do this with a loved one, but I do know of several people who were placed in Long Term care in their 60's. I know it happens, and you just don't expect this in one so young. (I just turned 60 and that seems to be the "age of doom" for some reason!)
Look into it. You realize he isn't going to get better, and as much as you want him at home, that may not be the best thing for both of you. He might likely receive far better care, make new friends and be better off, all around. I'm sure you will beat yourself up about it--but life is hard and we often find ourselves in situations far sooner than we'd like.
As far as the "steps" you need to take--Igloo572 has great advice. I can only offer my sympathy. The "new norm" may make your life less stressful, but it will be a hard change.
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I'm so sorry you've found yourself in such a position with you husband, you have my empathy in spades. I think one of the worst promises we can ever make is that we'll "never" place a loved one in a nursing home. There are simply too many scenarios and variables in what life can throw at us. Our family certainly saw this with my mother. During her four years in a nursing home we saw other residents in a wide range of ages, some in situations much like you describe your husband. They weren't the majority but they were there, often getting more visits and attention, I think possibly due to an extra sympathy factor at the hand life had dealt. I'd encourage you to look into it. I know the guilt all too well, but there's a very true reality of preserving your own health and sanity so you're available to see that his care is good. Best wishes and please keep us posted
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I know I commented already--but I do know how the stress of caring for a sick hubby can take a huge toll on you. My hubby had HCV, liver cancer, a liver transplant and 84 weeks of a brutal chemo-like treatment to "kill" the HCV. It didn't, and so he relapsed. (Luckily in 2015 he did the Harvoni TX and he is cured-- after 40+ years with this disease!)
My story is that I had to work 2 jobs, plus take care of a very sick hubby for a very long time. Also had 2 kids and a foster kid at home. When hubby finally was able to go back to work--I collapsed, Literally and figuratively. I'm never going to be the same, and this was 10 years ago. I did NOT even try to preserve me sanity, I was too worried about losing the house to even think.
He gets that sick again....I know I could place him in a NH (a very nice one!) and try to retain some sanity. He was not himself during all that time--and the 'real' hubby? I don't know where he went. His brain chemistry was altered forever by all the drugs, anesthesias. etc. I "get" that living with a person who is not the same anymore is hard, if not impossible. I wish you good luck and finding peace in your decision.
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I think it is okay to admit that he needs more care than you can provide. This is not a reflection on you, but the reality of the situation. I visited about 9 AL/Memory Care facilities before finding one that would work for two friends for whom I was given POA authority. They had to go as a couple. I delayed as long as I could, but when the wife became incontinent and started to wander, she needed 24 hour care. I was very happy with the facility I found for them and was able to make their bedroom and TV room just like their condo, so the transition was easy. The care was excellent, as was their advice for me on how to handle things since this was all new to me. They had wanted to live independently like always, but that was no longer a possibility. Rather than feel guilty, I felt thankful that I found a solution that would work for them and me. You deserve the same. Why blame yourself for what happened to him? My friend's wife and I were both teachers, too, and loved it. You deserve an environment that gives you time for yourself to grade papers, prepare, recover, knowing your husband is well cared for.
Best of luck on this journey you are on.
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