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.
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.
I think you need to ask yourself how long you can realistically keep this up?
What would happen if you, yourself, had an emergency?
Would there be someone close by to step up and care for your sweet wife?
As much as we always want to be there for our loved ones, sometimes the best option is to take a step back and look at the bigger picture!
My Uncle never shared with me how bad my Aunts dementia was.
So when he passed before her, her care was left to no one in particular. Because I love her, I couldn't just leave her. Not everyone is willing to step up.
You and you alone know what your limitations are. Please consider them carefully.
For what it's worth my advice is to not let it go till it's too much for you to handle.
God bless you and your wife !!
Best wishes to you.
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.
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.
Big decision here. I really don't think your SIL realizes that her sister is a 24/7 job. My daughter is a Nurse. After spending the day caring for residents in the nursing home she worked, the last thing she wanted to do was care for someone else. And usually the work you are doing is done by aides.
Like the idea of maybe SIL coming to ur house and giving you some respite time. Her doing most of the work. I will assume that she is in the same age group. She may find all the lifting, etc is too much for her. She will see whats involved daily and may see where its time to place your wife.
We had a man in church that's wife had water on the brain (theirs a name for it, just can't remember. It caused Dementia like problems. He had to eventually place her. He had lunch with her every day. Spent the afternoon with her and kept her busy. He left when dinner was served. You could do the same thing. Be there for her but have your downtime too.
If you go this direction, you may want to talk to Medicaid if you feel you will ever need it. They may allow you to split what assets you have. Wife's split would be spent down with you being somewhat financially secure. You will be considered a Community Spouse.
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?
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.
The person that you made a promise was a different person than the one you care for now. 30 Years ago would she have wanted you to be doing what you are doing now? How about 20 years, 10 years ago?
Would you want her doing for you what you are doing for her, or would you want her to place you in a Nursing Home where you would get the care you needed and she could visit with you and not have to worry about anything but enjoying the visit? (did this sentence make sense?)
Would you keep her at home if you had Hospice in to help you? You would have a CNA that would come 2 or 3 times a week to bathe and do bed changes. A nurse to check vitals, a Social Worker to help with other things and a variety of Therapists that might help out as well. And the biggie...Volunteers that could stay with her while you run out to the store, get a hair cut, go to the library or grab a cup of coffee with friends you have not seen in a while.
My first suggestion is to determine “What is best for the Patient?”
Notice I didn’t say what is best for you.
Get a piece of paper and make two columns; Pro and Con. You are not able to provide the same level of care at home. She will have regular visits from medical professionals, her meds, and nutritious meals. That’s the Cliff Note version.
Lastly, when I put my mom in the nursing home after a fall, I told her that this is where you will be until you get better. There was and still is no sense of permanency. That works for the both of us.
When my dad was alive and asked me is his stay at the AL was permanent, I shook my head yes. It broke him. I decided I would never do that again.
Good Luck Paddy You have been wonderful but your own health must be taken into consideration too.
Thought: I’m wondering if your daughters live near your home. I’m hoping they are willing to assist you by visiting your wife and you. They could make phone calls to Agencies for pricing. 25.00$/hr was the price my family paid for Home Instead Agency to assist my Mother keep my Father at home until his death 6 years ago. My Father has Parkinson’s Disease and was 24/7 all care needs. My Mother just died in February with our family by her side at her home after 2 years of 24/7 complete care.
Thought: Nursing Homes are not always the answer immediately. You can get exhausted going to visit her daily As you adjust. If you can afford to pay for private agencies, I encourage you to try it out as you grieve for the changes and let you adjust to not bring her only caregiver. After a month or so, She may become comfortable with other people giving her personal care. Then can adjust to the nursing home environment.
Thought: Hiring private caregivers for your wife and you. Sometimes family do not want to deal with caregiving at home. Perhaps Your daughter will have different thoughts with connections to skilled caregivers. Ask her to start asking if anyone would be interested to help out. If with help at home, you may be able to keep her at home. If additional caregivers doesn’t help you emotionally then you have had an adjustment period before she needs to go into a nursing home. I’m thinking she is scared, the same as you with this life changing decision. With outside caregivers, you can remain the loving husband, letting them give her the personal care she needs. Ask about any available paid caregivers at your church, neighbors, medical offices, the Nurses and Social Worker of the current agency. In my nursing, I keep a list of caregivers I met who show they have compassion and skills. I will offer this list to my patients who need in-home assistance. These privately employed people usually carry their own insurance. Local hourly pricing is 15-25$/hr in Virginia area where I live.
That’s all for now. I will check back if you want to further communicate. LaVonne
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.
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.
My first suggestion would be, we hired college girls to help us with our mom, can you afford to pay a little for help a few hours a day? Even a college girl with no trainng can be taught how to feed her and can clean teh house, etc...you dont have to hire expensive nurses, if tehy can babysit a toddler then they can feed her.
Also do you go to church? Sometimes church folks will come and sit with her for a couple hours, a lot of church folks are retired.
Now if you want more help, like bathing, you may need to hire a older "mom" type or a CNA. Personally, i hired a middle age "mom" with 10 kids, no nursing training and there wasnt nothing she couldnt do!
Also if she goes lives with family can you move next to them?
Should he not be able to stand with walker and walk to shower with aids help, I would probably have to look into skilled nursing.
Prayer everyday to help me be understanding and cheerful helps so much
I find I am that after prayer
This is the most difficult decision of my life. It's one thing to go through it with one's parents, but quite another to go through it with a spouse. I don't think anyone understands - unless they have experienced it.
Thanking you for posting the question.
Grandma hid grandpas mental decline until she broke a hip and had to go to rehab. Only then did we realize how bad his mental state was. He died soon after and grandma lived on another 5 years with no stress or worries.
Uncle developed AZ and got aggressive with Aunt until he had to be institutionalized. She never recovered.
Single aunt began to fail both mentally and physically. She moved in with widowed sister (both in late 80's). 2nd aunt wore herself out fussing and worrying about 1st aunt and started her own decline. Her kids arranged for 1st aunt to be placed in an adult care facility where she lived until age 95. 2nd aunt recovered and will soon be 96.
My father had a stroke and insisted on staying at home, expecting my 140# mom to move and lift his 200# self. I said no way and organized home help. He wasn’t happy but he did get to die at home on his own terms?
Mom had heart surgery and stayed with me for several months. I quickly realized that I could not cope with her needs, either mentally or physically. She choose an AL facility and is now the queen of Bingo. And I can visit and enjoy her instead of being run ragged.
I could go on and on. Upshot is you have to do what is best for the care of your LO and if that means moving them to a facility that can provide supervised care 24/7 do it.
People were screaming at me to put my brother in hospice ( I would still have to do all the things you do
You need respite.
Could you and her sister team up. Maybe you could assist with the heavy stuff and she could do the personal ( possibly with your assistance with turning etc)
Apparently there is no help for me, but there may be options for you that no one is telling you because they want you to do it their way.
What will happen when your wife is begging again to go home?
Could your wife go into the nursing home for care and you could spend however much time you are able with her ( but leave when it is too much.
Have you been able to see a therapist or other person who can help you be able to have the peace to collect your thoughts and decide what is right.
Seems that it feels like everyone is bombarding you with their answers