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iamdave Asked December 2017

How do you know when you cannot take care of someone any longer?

My wife had 2 strokes. 1 in Dec of 15, and another in the spring of 2016. She had 3 seizures, so 5 ER runs. She stayed in a home for 4 months and I've had her at home these 2 years. On top of it she has both apraxia and aphasia. The stroke took out her speech and right side. I obviously have to work. Thank God though as my 2 days off are awful taxing. I am wore down. I am exhausted. None of her family etc. has helped ... whatsoever. It's all me. I run a small business. I can't put her on Medicaid as from what I understand they could eventually assume my paid for home and business. My son is in it with me and I hoped to hand it to him. She is 56 and I am 53. Today is our 33rd anniversary and she doesn't know it. She has a lot of trouble comprehending. Dr's said she isn't going to get any better. We've have 5 different therapists of speech, physical and occupational therapy. No improvement since the first couple weeks. She's always had a temper and a short fuse and that's only inflamed more now with all this. I get through each day. But I am at a loss of what to do and wonder when my health will begin failing me as this is just utterly exhausting and she is just so rough to handle mentally. I feel so bad for and I have busted my ass trying to take care of her. I have to do 99% for her. I bathe, dress, undress her, you name it. I don't know. All I know is I am wondering if I've been running down a road I am just not capable of taking on. 2 years. 2 years facing I don't know ahead of me. Another 2, 5, 10 years of this? OMG, I can't imagine how I'd be able to last. I don't have anyone else to ask. Sorry for dumping, but I need some input and advice please.

freqflyer Dec 2017
David, you know when it has gotten to be too much when you had written your posting above. Everyone has their "crash and burn" point. Some crash in 2 months, some crash in 5 years. And what if something happens to you? Your wife would probably be placed in a skilled nursing home.

Oh please call your State Medicaid office to see what is the process. What will be the issue with the house and your business. The surviving spouse is allowed to have assets that total a certain amount.

I will let others on the forum here fill in the blanks for me. Just wanted you to know there is help out there for you.

jjariz Dec 2017
"A lawyer told me to take her name off of stuff but I never took it off the house."

This won't necessarily protect the asset, just because it's not in your name. Talk to a lawyer that is a Certified Elder Lawyer so that you can get a 2nd opinion. (((hugs)))

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meallen Jan 2018
Having your wife live in a place where she can be taken care of is not ending your loving care. It is keeping her safe, well looked after, and freeing you from the exhausting business of day to day nursing so that you can be her husband when you spend time with her.

iamdave Jan 2018
I got some awesome news today! Talked to an attorney who said there is a new Medicaid program called MAGI. Modified Adjusted Gross Income Medicaid. She can get medicaid without an issue of my income, business etc. all because she is under 65. He said it won't even affect our house, though he did suggest moving that out of her name. But hallelujah, what awesome news!!!!!

iamdave Jan 2018
Well, wheels are in motion. Per suggestions, I have since had a meeting with my children and laid it all out. I just got off the phone with my sister and mother getting their input and letting them know how bad things have been. I have hidden a lot of the depth of this from most of my family but it's been time to lay all the cards on the table.

I have spoke to the free aid ohio has been they referred to a local edler care. I spoke to one attorney who referred me to another guy and I have a message in there as well as with some elder care place in Ohio. I'll talk to them all next week.

Looking into an assisted living place rather than a nursing home. Left a message at one I found locally.

The mountain I still have to climb is talking to her. I've laid some groundwork with her explaining that I'm exhausted and that I don't if I can do this much longer. I questioned if she's safe at home etc. also. The mountain being the amount of crying, the possible rage I will encounter when taking the next steps.

My assumption is that even if I'm staying on course not dragging my feet as I have I'm looking at 6 months easily yet.

But I do feel a little relief in that I'm doing something. I just know that even when she was in a nursing home life was a chaos for me seeing her, taking care of the house and working. But I need some help and I know I need it soon.

I appreciate all your input and just want to thank you for helping me realize it and begin researching it.

iamdave Dec 2017
Am I an ass to even bring this up? Part of me just keeps saying suck it up and keep taking care of her. But honestly, I can't tell you how many days/nights I've went home wondering what I was going to find... I am surprised she hasn't taken her life to be frank. Her situation would be hell for anyone. For her, she's the last person you can imagine in this situation. She cries at breakfast half the days. All she can do is sit in her wheel chair or sit on the couch and watch tv. She can't operate the remote very well and it frustrates her. She can go back and forth to the bathroom and that's it. Her constant frustration with me, with her situation, crying, anger, constant questions I can't understand are just so exhausting. It's all day every day. My head spins. I can't imagine me making it long. A person can only take so much right? I love her. I do. 33 years. But I'm worried my plate is overfull and I am trying to tackle something beyond my means.

Midkid58 Jan 2018
Dave,
We went through this when daddy had Parkinson's and mother was his primary caregiver. His illness wore her to a nub. When he passed (at home, 13 years ago) she never shed a tear. I haven't seen her cry over him, or really even talk about him. I don't know why..partly b/c she was so angry at him for being sick and needing care, when she was the one who wanted all the "fussing" and attention. Now she's in the situation he was in. In fact, tonight my sibs and I are meeting to discuss what we need to do with/for her going forward. A NH is not off the table. She lives with my brother, but her needs far outweigh his capabilities to continue to care for her. I also do PT caregiving, but the 3 other sibs are MIA.

Without support, the constant caregiver grows weary and depressed, and yes, angry.

No one is going to think less of you for moving your wife to a better place for her. You will have a level of guilt about that, b/c you love her...but the "her" you married is long gone, replaced by someone you really don't know. That's so hard to handle.

I'm sure you are loving and patient with her, but you are still so young (relatively speaking!)....what would she have wanted, do you know? Did you ever talk about the "what ifs" and "when this happens"? Many couples don't.

Putting her in a community that can meet all her needs will calm your frustration and probably be better for both of you, in the long run.

Bless you!

anonymous434963 Jan 2018
Dave, Please see an attorney who specializes in Elder Law and Business Succession. They are well-versed in Medicaid requirements, and I don't think a divorce would be recommended. Nor will you have to loose your home and business unless you keep procrastinating and just let this play out until you're broke. Make this your priority for the new year so your mind is relieved of this financial worry and you can then explore care options that are available and affordable.
God bless you in your love and commitment to your wife.

Sunflo Jan 2018
You’ve got a lot of loose ends Dave. You need to ease your mind. First, suggest you get with an attorney and discuss your situation and your desire to preserve assets for you, your business and son in the future.

Meet with your financial advisor and figure out your budget and what you can afford for care for your wife. Is there residential care you can afford? How about a few hours of in-home care a week? Most towns big or small have a local senior center, or center for aging, etc. Go by yourself and meet with them and they can be an excellent resource for financial support, services, care, etc. your wife may enjoy mornings there where they have activities or programs she might enjoy or just seeing people there.

You need help. Don’t feel guilty. Yes you are married, but not everyone is cut out or have skilled nursing ability your young wife obviously needs. Get her in a living arrangement that works for both of you and allows you to still run your business and provide for your family and her care. She may be best suited for a skilled care facility where you can visit but not be burdened with day to day caregiving. Figure out how best to finance that. It might mean selling house even and moving to smaller apt, etc and using some of those funds to fund her care.

For gosh sakes, make sure your financial affairs, will, POA, advance medical directive, long term care insurance, etc are current and notarized and wishes discussed with your son so that he isn’t burdened like you are.

BarbBrooklyn Dec 2017
Dave, has your wife been diagnosed with Vascular Dementia? In my area, post stroke, patients are put on antidepressants as part of the protocol. I would suggest that it's time to figure out how to get her on them, or you're not going to be able to care for her.

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