Follow
Share

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.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
1 2 3 4
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.
Helpful Answer (19)
Report

bumping your question. You need to call Medicaid. Is ur wife co-owner on ur business? Medicaid will not leave a spouse broke.
Helpful Answer (8)
Report

I was a sole proprietor for 25 + years. Last year I changed it to an LLC so I could bring my son in 50/50 with me. Her name is no longer on the bank account, but it is still on the house. A lawyer told me to take her name off of stuff but I never took it off the house. Felt like a heel... He also told me to protect assets for my children to get a "loving divorce." I couldn't get to that point, and I knew bringing it up to her was going to mean a flood of tears, questions she couldn't understand answers to etc.

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.
Helpful Answer (10)
Report

How do you tell a loved one I'm going to take you to a nursing home? I can't take care of you anymore... Ugh.

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.
Helpful Answer (11)
Report

Good for you for not getting a divorce. Marriage is not a business arrangement.


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!
Helpful Answer (10)
Report

Thanks surprise. Hugs appreciated. This is painful stuff. It's like its the worst day ever, but tomorrow and each day after looks exactly the same. I keep praying believing He has something He's teaching her, me or someone around us but I don't know what it is. Persevere I see. Is it possible to be persevered out? ugh I'm at such a loss...

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.
Helpful Answer (10)
Report

"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)))
Helpful Answer (19)
Report

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.
Helpful Answer (13)
Report

Dave, I don't know how you are doing it either. My mthr took care of my father who was similiarly disabled for about 10 years before he had a massive cerebral hemorrhage. She had serious mental problems after, but I suspect many of them were already present, just not as pronounced. You are earning sainthood, the hard way!

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.
Helpful Answer (10)
Report

Dave, the answers will come, you're doing fine, anybody in your situation would have all the same questions, would be experiencing Caregiver Burnout, and only you will know when the time will come when its time to place her. In the meantime, learn All you can from this site, from speaking with Medicaid, and also from a visit with an Elder care attorney. I'm sure that more folks will come along with some good advice, but do know you have come to a great site for support and advice! Take Care!
Helpful Answer (9)
Report

Along with the above very good advice, you might check into adult day care. There are some in our city that will accept the wheel-chair bound with various challenges. There is even one here that will provide transportation for an additional fee. It may cost several hundred per month to get her out a few days a week, but it could help by just providing a change in scenery and someone besides you to talk with her, along with activities. Then, if you can afford it, an evening sitter a few nights a week to give you a break. Maybe if you can just get some breathing room, you'll be able to take the time to search out the best long-term solution. Maybe you'll find that all you need for awhile is breathing room. I wish you the best; I know it's hard.
Helpful Answer (10)
Report

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.
Helpful Answer (11)
Report

"has your wife been diagnosed with Vascular Dementia?" She has not. A new year and new insurance plan so I'd like to get completely new evaluations by a new doc and neurosurgeon. The depression pills she has makes her tired so she refuses those. Some of it is because of what they are as well.
Helpful Answer (3)
Report

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.
Helpful Answer (17)
Report

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!
Helpful Answer (13)
Report

We never had any talks. She did 5 ER runs during those first few months and I kept getting asked if we had a dnr and it just wasn't something we had and I wanted to discuss with her yet. You just don't want to get to that point, so "you think" if you don't discuss it, it can't happen right? ugh.

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.
Helpful Answer (6)
Report

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.
Helpful Answer (12)
Report

Sounds like you absolutely need help in there. Its okay to start it slowly, she will be resistant but she will get used to it.
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?
Helpful Answer (9)
Report

Dave, so sorry; I'll bet it feels like jail sometimes.... no end in sight. Tell you what; I'm over 65, husband is younger; even tho he's an EMT, I'd sure hate to be dependent on him for EVERYTHING! He doesn't think so, but I'll bet he'd get to resent it, and me; which you will soon, if you don't already. I know you love your wife, and you said "in sickness and in health", but years and years of how this is turning out might very well wreck you - and then where would you/she be? I read you didn't really like the NH thing, and your reasons; maybe you'd like a group home, as several others here suggested. Years ago I worked in two of them, one with 4 residents, one with 7; they were good, very good - a lot like a large family. There was a cook and a caregiver on duty in the day, and a caregiver at night; the owner was an RV - oops! I mean RN. There would be stuff to do there with her, and a much better atmosphere.  I have a friend that's in one now; a beautiful Victorian B&B converted to a group home of no more than 10 residents, with a cook and 2 caregivers. I've been there several times; food's good, it's clean, and they all seem very content; my friend's daughter loves the place. Dave, there is light at the end of this tunnel; just have to do some investigating - God bless both of you!
Helpful Answer (9)
Report

You really should talk to an eldercare attorney, Medicaid officials and get her to a geriatric doctor--medical and psychiatric. Medicaid has provisions for the spouse not in the nursing home. I don't know the details, but it would allow you to keep some of your assets. My MIL was awful in the nursing home until she got on medication. Now she is at least tolerable. Antidepressants work wonders as do antianxiety medications. You could use some help yourself with depression and anxiety.
Helpful Answer (7)
Report

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.
Helpful Answer (13)
Report

https://www.agingcare.com/articles/can-medicaid-take-your-house-147803.htm I don’t know about your business, you can do a search on here for that as well. From your post, you are done caregiving. I would have put her in a nursing home a long time ago. As soon as my mother can’t wipe herself anymore she goes to a nursing home. I’ve already told her that as well. ~~Sorry, I have my limits and I have been doing this since 2008 already.
Helpful Answer (6)
Report

Get yourself an experienced attorney who specializes only in eldercare NOW! Besides sorting out the financial and legal aspects if your situation, they can be far more objective and realistic in assessing what is best for you and your wife. Eldercare attorneys have seen it all and have connections to care facilities.
Helpful Answer (9)
Report

unlike Heidi - I can do the butt-wiping but I doubt I could handle vomiting.

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.
Helpful Answer (5)
Report

Amen Linda! Well put.......
Helpful Answer (5)
Report

So sorry for your troubles. I went through something similar last year with my parents. We live in central Ohio and my elderly father was needing in-home care but with a limited income it was difficult. I contacted Medicare and was advised to call Catholic Family Services for help navigating the system. The caseworker there was a huge help. Ohio has a free legal advice phone service where you get a 30 minute call with an attorney plus follow up calls. We were advised that as long as the spouse was living in the house Medicaid would not "take the house." The spouse was allowed to keep $24,280 in assets plus the main residence, the person requiring Medicaid was allowed $3000 in his name.
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!
Helpful Answer (6)
Report

You will know when it starts to affect YOUR health, e. g. "crash and burn" scenario is in place. Time to step away from the caregiving.
Helpful Answer (4)
Report

I empathize with you. My husband who has Parkinson's had a stroke 3 years ago. He has continued to decline now bedbound requires total care, transfers, and has a g-tube (which I crush and administer meds and feedings through 2x per day). I keep him home but to keep my sanity and life, I have a caregiver during the week so I can continue working and get out of the house. The rest of the time and weekends I care for him. It is exhausting but I prefer it to any nursing home for him. Also twice a year I make sure to take a week vacation and put him in respite. It helps recharge me. This situation is not forever, he deserves to be home and I would only hope the same if I were in his place. You are doing a good thing just have to find ways to take care of yourself.
Helpful Answer (7)
Report

I can relate to your feelings and the demands. Ditto on other comments. An attorney can set up a trust so you don’t lose. Other options: Does your state have a community Medicaid program? It offers assistance to keep person in Home since it is cheaper for the state than a NH. Check with hospice but be sure you understand how it affects her health Insurance. Is part time health aides an option? Our local senior center has ads from people who do Home care. Ask people if they know of someone. Your state probably has an agency for aging and disabled that has resources as well. Good luck. Keep the faith!
Helpful Answer (2)
Report

I can't tell you how much I appreciate your thoughts, prayers, and input. I haven't talked to anyone about this. 2 years flys by and I find the world spinning around me like a merry go round. Dizzy from all of this. Kinda like your worst day ever, then you wake up and do it again and again and again...

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
Helpful Answer (8)
Report

1 2 3 4
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter