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.
I know right now you feel paralyzed but you must not let the situation decide itself. Take control of this like you took control of everything else in your life. OK? You can do this!
I have to say tho one of them scared me more than helped me but he was just out for the $$$. That's why as with anything else.....interview a few of them before choosing. If you decide after the consult you are not ready to hire one you are at least armed with more info. There is no obligation....don't let them bully you. We caregivers must take "back our power."
Take lots of notes!
Keep us posted.......
But really I just wanted to thank so many of you for replying. I appreciate it greatly. I'll read through the replies a few more times and stew on them and come up with a plan.
Thx,
Dave
As long as the ill person has assets it's reasonable to expect him/her to pay his way, then once the money is spent down Medicaid steps in. You do have to choose from a list of approved providers.
Have you applied for disability benefits? Sounds like your wife is eligible which could be a big help.
Your medical insurance might be a resource for advice too. Dad's doctor's practice employs a social worker who was a big help to me, setting up home visits and finding resources that tied in with their medical insurance and Medicare.
Make some calls and get some advice, don't try to do it all yourself. Trust me, just make all the phone calls is a full time job!
we're all different and we all have our limits. I have already told his son & dil that when he becomes bedridden, I am going to need help. no question, I will need help.
sadly, if you've tried to prepare to take care of your future, the government will take everything before they will help you. I do understand that, but it leaves you without the means to take care of yourself financially for the rest of your life. an ugly catch-22.
I see my future in your post. I know of a neighbor that had to give up everything, including work, to stay home to tend her paralyzed DH and to be able to qualify for assistance. never an easy road.
it no longer matters if a "love divorce" would have helped, we cannot go backwards, only forwards. if nothing else, I can, will and am praying for you. I pray for guidance daily and it has helped me thus far.
huggers,
linda
And I Totally disagree with surprise's comment:"Good for you for not getting a divorce. Marriage is not a business arrangement." first, yes it is a sort of business arrangement.
In the eyes of God, you Will still be married - it's only in the eyes of the state - who will refuse assistance - that you will Appear divorced.
surprise does NOT have the right to dictate what you can do or need to do - unless she is willing to come forward and pay all your bills. it's too easy to preach from the sidelines. talk is cheap and will not pay your bills or grant you much needed respite.
God bless you in your love and commitment to your wife.
Im not sure where you live but can you find a home health agency that can come in for a few hours a day so you can get some time to take care of you?
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.
Thinking this over more the last few days I thought about how it was the first 3 months when she was in a nursing home. I was free from a lot of the basic care, dressing, showering, preparing her meals etc. but in the end I'm not sure what all I gained. Visiting her there meant going there and then she's typically in the adjustable bed, or I'm taking her for a roll (walk in a wheelchair) throughout the facility. You not "home" so your not comfortable, and you can't multitask other things (dishes, clothes etc) so... I don't know.
I've tried easing into the conversation with her. If she wanted to go to a place just during my 2 longer days, if she feels she's ok at home by herself etc. Of course we can't get a lot accomplished in conversation (as mentioned she can't communicate well at all) but one thing I think I caught from her was that she can't really talk to people there because A. she can't talk, and B most all of them are quite old and can't communicate or aren't in their right minds. So she feels all alone while she's at those places also.
We live in a small town and don't have the luxury some larger towns might have of adult care that's not senior.
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!
Theraputic fibs might help you with the pill taking, or perhaps giving her OTC suppliments like St. John's Wart for mood. But I really feel she needs something - she sounds depressed the way you describe her. Are there any senior center programs she could attend during the day, or a senior's day care? Seems more social than being in the house alone all day.
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)))
Ohh, his suggestion a "loving divorce" was you just keep living as normal. You do that only for the legal aspect of protecting assets from medicaid. But again, it's just not a bridge I feel comfortable crossing.
She was prescribed anti-depression meds but that's on her list of ones she won't take. She hid them from me for a long time and I scolded her that I was afraid the grandkids would come over and find them, She was hiding them all over. I am not sure if it's because they made her tired, or she just doesn't like the idea of them.
Proverbs 19:14:J House and wealth are an inheritance from fathers, But a prudent wife is from the LORD.
Have you considered a group home for her? It's less expensive than a SNF but they make sure the patients are safe and give them their medications packaged at the pharmacy. Speaking of, an anti anxiety or depression drug would do wonders for your wife.
I guarantee the business is much more of a concern to your son than the house. If he's working with you, the other kids had that opportunity as well but passed. It's ok to leave it to just the interested one. If you can make it 5 years paying for help, then your wife can go to Medicaid when she needs it after that time.
Not great answers, but a start for you. Hugs!
Odd thing is, she's gotten mad at me/frustrated and rolled out in her wheel chair to live with our neighbor one night. No, we really don't even know each other that well. Yea, that was an embarrassing night. Another day she wanted to leave and go back to a nursing home and I had to explain she couldn't. So then she called her brother who came and got her and she wanted to go live with her sister (after he explained he couldn't take care of her) so she gets to her house and she tells her sister she didn't like the bed (she doesn't like much of anything) so she brings her back less than 2 hrs later.
So it seems like she's ready to leave. But knowing her, if I told her now there would be tons of her crying, yelling etc. mad at me. She'll go she don't understand and hand up to half of her face which means the stroke. As much as she gets frustrated with me, she also demands and expects me there all the time.
I'm just so torn and exhausted. I get light-headed typing this. It's all embarrassing too which is why I haven't talked to the family.
Getting the basic questions answered is a chore and a half. I've learned never to make small talk because she doesn't understand anything and it leads to a stream of questions I can't make out and frustration for us both.
So she isn't technically a part of the business, but she is due to marriage. So my concern would be that my son busts his but for it, I pass and when it would then become his, medicaid would come calling for half of its assets which would leave a break-even business in shambles and out of business. Same with our home. Wouldn't they come after that to recover costs? It's only a 150-200k home, but you wish you could leave somethinng to the kids kind of thing.
I dunno. My heads spinning as has been for such a long time. Glad I found this site and can vent and ask questions I don't know where else to ask.
Thank you for your input and suggestions.