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My wife has Ataxia, a rare, progressive, incurable neurological disease. It has progressed to the point that she has lost the ability to even support her weight if I hug her to provide the balance. Because of this I cannot use a walker or wheelchair to move her around the house because of the difficulty of the transfers. Since this latest degradation in her health I have been using a Hoyer lift with a sling to move her where she needs to be. She has also lost the dexterity to clean herself in the bathroom. This is something that I always said would be my red line, something that I just cannot do. But because I love her so much I have forced myself to have the fortitude to do the cleaning after she uses the toilet. I have been caregiving for her for a little over 2 years now but she has been this way since September of last year. I cannot leave my house now for anything unless someone sits with her because if the house would catch fire she would die in her chair just 3 feet from the front door. She had spinal surgery 2 months ago for 2 bulging disks and the doctor put her in a nursing home for rehab. After one week she began calling me in the middle of the night crying for me to come take her home. It finally got so bad that even though insurance ok'd her to stay and the therapists and myself all thought she needed to stay for the therapy it was decided that because of her emotional state that she would come home. Our insurance has been wonderful and we have had home nursing, home therapy and home social workers ever since she returned home. These services are for her medical problems, not for home care...feeding, bathing, bathrooming ect. These are not covered. I do all of the caregiving of that type. The home nurses, therapists and social workers have been coming to our house almost daily now for 6 weeks. 4 days ago the social worker and 2 of the nurses separately asked me in private how am I able to do what I'm doing both physically and emotionally. I told them I can't hardly do it any longer, especially emotionally. So all 3 of them, at different times, told her I need to be relieved of all of my responsibilities because of the toll it's taking on me. I had been hinting at this occasionally to her but she seemed to not listen. She finally said to our oldest daughter that she thinks she may need to move in with her sister, who is a retired nurse and who offered to take my wife in in the past, because of my state. But I am pretty sure that once she leaves our house that she will never return. I wonder if her sister, even with her training, is up to the job, but she wants to try. I'm ready to give it a try but when I look at my wife and try to imagine her never coming home again, waking up in our bed alone every morning, I lose my nerve to suggest she talk to her sister. We've been married over 46 years now and I know this would probably be best for us both but the finality of it just crushes me. I know some of you folks out there have dealt with this already and I need your experience and wisdom to help me get over the emotional hump. Thank you so much for any advice you can give me. I forgot to add that she has said many times that she will never go into a nursing home if it means never getting out again. So I have that emotional baggage to deal with too. My 2 daughters, one of who is a doctor, says their mom is not being fair to me and I should do it anyway with their full support. I am torn.

Just a small thought... if your wife moved into a skilled nursing home very close to home & you visited from mid morning to mid afternoon every day but you were able to sleep at night & reduce your physical load? How would that be?

You would still be her husband 24hrs a day.

You would still be caring 24hrs a day.

You would just be sharing the physical caring load with trained staff.
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Reply to Beatty
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Oh, I am so very sorry for your wife's illness and your situation. I watched my father deal with my frail mother as she lost her memory and physically declined. At one point a new assisted living facility was built within walking distance of their home and he thought that she could live there, especially for the nights, and come home during the day but my mother really didn't want to leave home so he withdrew his deposit and she remained at home with him. This was the worst decision ever. He didn't recognize the seriousness of a medical change that she had and and it went untreated, which resulted in her death. Had she been in the assisted living facility one of the nurses would have immediately recognized that she needed medical attention and it wouldn't have ended as tragically as it did. He thought he was keeping her home and where she wanted to be out of love but it's like taking a little kid to their first day of school - they don't want to go and you don't want to let them go but you know you have to. Please get your wife into a nursing facility, not just with her sister as that is not a sustainable solution. You can visit every day and enjoy her company for much longer.
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anonymous954884 Mar 12, 2020
Thank you so much for your insight. I have to admit that when she was in the nursing facility that I missed her terribly. But at the same time I knew she was safe, well cared for, fed, and clean, and that was such a load off my mind.
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It's a heartbreaking decision.

A suggestion to get the willing retired nurse sister issue out of your way: is there room in your home for your sister in law to come and stay with you for, say, ten days or so?

What I think you will both find is that even with two of you on duty it's going to be a stretch; and that even with you there to guide and prompt her, it's going to dawn on SIL that this is simply not a one person job. Not sustainably. And for her to have a trial of being your wife's caregiver, with the implicit promise involved in that, would feel like a cruel betrayal when your wife still has to move into residential care later.

Another advantage would be that SIL's support in your home would give you just enough rest and thinking space to be able to gain perspective. You'll be able to think in practical terms of what is really best for your wife's welfare, taking everything into account. Trying to make plans when you are physically, mentally and emotionally exhausted - then looking back on those plans and judging yourself harshly, only because you're now detached from the reality of 24/7 caregiving - is not fair.

Finality... well, change, certainly. But it isn't as if you're planning to abandon her. What facilities have you looked at? What accommodation do they make for married couples? You may be able to find a place that is far more supportive of your relationship, and more imaginative in what they can offer, than you're expecting.
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Reply to Countrymouse
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What staggers me in this situation is your wife's refusal to see reality. After 46 years of marriage and after having you care for her for 2 years now, knowing the condition she's in, she's still playing the emotional guilt card on you and saying she'd 'never' go into a nursing home, and crying about rehab, and forcing you to bring her back home again. That really blows my mind, frankly. It's selfish and it's unfair, to say the least. While it's a very sad health situation she finds herself in, what's even sadder is the situation she's forcing upon YOU.

At some point, you're going to have to wave the white flag here and have her placed in a Skilled Nursing Facility. I question the prudence of having her live with her sister, retired nurse or not. Since her sister is human, she is going to face the same exact problems you are facing and burn out in short order. NOBODY should be expected to care for another person who's suffering from THIS level of need. No ONE person, I should say as a correction. She requires a team who's devoted to her care 24/7, and who works in 3 shifts to accommodate her needs. Everyone seems to know and understand that except her.

Sit down for a heart to heart conversation about the facts of this situation. Sometimes love forces us to do things we don't necessarily want to do, but what is the best care plan for the loved one. I work as a receptionist in a Memory Care home for residents with dementia & Alzheimer's. Many spouses have had NO other choice but to place their husbands or wives there because their care became just too much to bear alone at home. So, they come to visit a lot, sometimes twice a day, to spend time with their spouse. I can see how torn they are at times, but they know in their hearts it's the best place for their loved one to be, where they're properly cared for 24/7. You can do the same once your wife is placed, if you'd like, and go back to being the husband instead of the caregiver.

It's not easy; none of this is easy. But think of yourself too, because this is not just about your wife. There are TWO of you involved here, and what's left of your life is going to be totally ruined if you have to spend it caring for your wife 24/7, which is what's required. We're not here on earth to be martyrs; we're just here to do the best we can and know when to cry uncle.

Wishing you the best of luck moving forward.
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againx100 Mar 15, 2020
Listen to this post. She's right. Sadly, and I think you know it's true too. We're never ready to lose our spouses, but reality doesn't really care if you're ready. Cruel. But listen to your doctor daughter and do what's right even though it will be hard.
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My heart is breaking for you. Know that you are not alone in this.

HOWEVER, the "I'll never go into a nursing home" statement was no doubt made back when it wasn't a necessity. It is now an absolute necessity, and I'll tell you why

A nursing home's staff will be far better able to care for your beloved wife than you can. It isn't a criticism on you, but rather a fact that they have multiple people to do what you cannot do alone. If she's moved to a nursing home, you will be freed up to just love on her without all the extra stress.

I don't want to scare you either, but you remind me of my dad. He was completely healthy and was my mother's caregiver from 2014 to 2018. He came from a broken home with multiple divorces, and he was determined to honor his marriage vows in sickness and in health, and he took loving care of her -- until he was diagnosed with inoperable liver cancer in October 2018 and died six weeks later.

I'm now in charge of my mother's care, and she lives in a memory care facility and is doing extremely well at nearly 91 years old. I cannot tell you how many people have told me that it's often the caregiving spouse who dies first. A trust and estate attorney told me that 70-80% of his clients have the healthy spouse die first. I heard that one before my dad got sick, and he was diagnosed a week later.

Honoring your wife means caring for her the best way possible, not necessarily the best way YOU can. You will be seeing to her care. You are not abandoning her if you put her in a place where she'll receive the care she needs -- you are doing exactly what you vowed to do.
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Reply to MJ1929
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I would like to share with you a piece of my own broken heart. I deeply feel then pain you are experiencing since my own beloved husband has been my sole focus for the past several years due to early-age ALZ. We are both 58 and have been together for over 20 years. On Thurs he had to be taken from home by ambulance due to extreme aggression. He is a big and strong guy but his brain is broken, so for safety sake he needed to be treated and cared for by others who could do more for him than I have the capability to do. My eyes are burning from the tears and my heart is hurting. Amidst the Caronavirus, I cannot go to him as I have asthma and live with my older sister and my 92 y/o mom. Tragically on the same evening, my mother began choking and could not breathe. She was taken by ambulance to ER at another hospital! I realize that this is no way diminshes your very deep sorrow and guilt and anger, but somehow I just wanted to touch someone else who can understand right now. I am reaching deep to find a strength to believe my love and all my caring gave my husband an extension of good life. I share with you and we are not alone. Someone once told me that I was not being punished by all this, but rather I was a gift given to him and that that was my purpose. Survive and their goodness will live on too
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Reply to Tetertottering
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anonymous954884 Mar 14, 2020
Tetertottering, I’m so sorry that life seems to be ganging up on you at this point in your life. I too have wondered why something like this would happen. If there has been any good come from this in my life it’s that I have come to see what wonderful daughters I have. I could not have gotten this far without them. And we’re closer now than ever. And I am so thankful for that. I hope that from all of this heartache you are experiencing that something good will come from it somewhere in your life.
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I agree with Lealonnie. I'm trying to figure out what your wife is thinking.....does she suffer from cognitive decline? It's just unreasonable to insist on the current situation. It makes me question if she is really seeing reality. I can't imagine insisting that someone care for me indefinitely under those circumstances. Aren't you angry about that? I'd be resentful for sure.

If her sister is serious about taking her in to care for her, I'd do a trial run by her coming to your house and doing it all without help for a week. Then, she can say if she still thinks she can do it. People say a lot of things offering to help, but, they don't have any idea of what they are talking about.

I hope you can find the answers you need. Why not have the professionals do an assessment for the care she really needs and encourage wife to accept it?
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Reply to Sunnygirl1
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PaddyDaddy, I am going through the same thing right now. I empathize with you, as I am feeling those same feelings. I am a retired PA-C (like a NP) and I have been taking care of my beloved husband for about 5 years now--24/7, until this last month, where I have been getting some help 4 hours once a week. 4 hours is not nearly enough. I enrolled my husband in the palliative program, and when the social worker came out to assess our home and my husband, she told me that due to my beloved's aggressive and OCD filled, rapidly worsening dementia, I either needed to hire full time help or admit to a memory care facility. I, too , made the promise that I would not put him in a care home, and I have wrestled with that promise, as well. The final straw for me was this past week(even the aggression, the coming after me with a pair of scissors, the calling me an f-ing POS, did not tip the scales completely.) when he had a small bowel accident, and refused to change his underwear or pants. No amount of begging or pleading on my part would convince him. That is when I said, "enough.". So I found a place about 25 minutes from home, submitted the paperwork with the TB test, and they are coming on Monday to assess him. I plan on taking him there on Tuesday, pending the final $/ month figure. His LTC will cover a large portion and i will have to pick up the difference. His LTC does not cover in home care. So this is for the best. I waited too long to ask for help, and now I am burned out and afraid I am going to have a heart attack. I cry myself to sleep most nights and I rarely sleep longer than 3-4 hours.

I am sorry this is so long, but I wanted you to know that I understand completely. 3:00am this morning, I laid in bed crying, thinking this would be one of the last times he would be with me, the last time I would hear him breathing (yes, we still sleep in the same king-size bed.)

I had a friend tell me the other day, "Bec, you are wasting away. Not just physically, but emotionally. You used to have such a spark, and always had a twinkle in your eyes. Now, your eyes are flat looking, and you are tired all the time. Where is YOUR quality of life?"

Henry was the love of my life, but he is not the man I have known and loved for so long. He no longer remembers that we are married, does not remember his family (that have just now started to visit! Go figure.) I have to keep telling myself that he will get better care in a facility. And maybe, just maybe, the quality of life will be better for us both, and my spark will return.

God bless you and give you strength to do what is best. Don't wait too long, like I did.
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Compassionate5 Mar 14, 2020
Hi Songbird,
I am a a retired RN/NP (x 50 years.) He can't help it...and you had to make the "hard call." TG for both of you that you did. We feel your pain...but you had the strength. Recoup...then visit.
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PaddyDaddy, I too am so sorry you must make a very unhappy decision. But you need to decide with your mind and not your heart now. Having her go to a nice and very close care community is probably the best overall solution, one that helps both of you. Caregiving is very strenuous at every level. I totally understand how she feels that she will "check in" and never "check out". But she needs to work on internalizing this reality and coming to peace with it. The other options are just unsustainable. In a care community you will still be there for her very often. She will have more social interaction. She won't feel guilty about having several people orbit around her. Your mental, emotional and physical health will be protected (and she benefits from this as well). For some problems there is no win-win, there's just a "least lose-least lose" solution. But you do have this viable option that is not awful. That's more than what many people have. I hope she can come to accept this fact. May you both achieve peace in your hearts over whatever decision is made. Let us know how it goes.
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Reply to Geaton777
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PaddyDaddy,

Believe me when I say I understand how you feel and, I know how tough everything is. I cared for my wife, Luz, for two and a half years before she passed. Very near the end she lost, for the third time, the ability to stand on her own or to even get up. I was lifting her by myself and starting to hurt myself. Back, legs, and heart.
For several days I thought it over and decided I need to get her into a facility of some kind before I really hurt myself. I told her what needed to be done and that I was going to start looking for a place for her. Then I cried. Knowing that I would be pretty much out of the picture for the physical things but not the emotional things.
Things got worse real fast. Back to the ER,days in the hospital, bad A- fib attack, problem swallowing foods, etc.
Hospice was mentioned and decided on. She passed less than a week later.
This big old house is so empty without her. I feel useless now without her to take care of. But I am surviving. 3/21 will mark the first year since her passing and I am in turmoil again as to what to do next.
We were married for almost 52 years. I am now 72 and alone. Only my brother 2k miles away. No one here that I can call friend.
I know what I did was the right thing to do, even if I hate doing it.

I don't know if it has been suggested that Sis come spend a few days or weeks taking care of your wife. This might open DWs eyes as well as Sis's eyes as to the amount of work involved.
If there is a facility near you you can do as I did. visit all day and into the evening and cry all the way home.

I truly feel you need to talk this over with wife and Sis before you wind up in rehab your self.
I know how dificult this is for you but it is absolutely necessasary for all of you involved.

I wish you the best and the strength to make your decision.
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Reply to OldSailor
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NeedHelpWithMom Mar 16, 2020
Old Sailor,

You are truly one of the sweetest men in the whole wide world. I guarantee that Luz is looking down from heaven and smiling at you. She knows what an incredible husband she had with you. You’re the best!

Don’t think for one minute that she isn’t watching over you. She was blessed to have you. You were blessed to have her. Even a blind person could see how much you loved your wife!

Take care, Sailor 💗 Keep spreading your love! It’s exactly what this world needs.
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