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.
Using loving honesty to increase communication -making the connections you have with your wife & daughter even stronger.
That can inspire others. I wish you all the very best.
Best wishes moving forward.
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.
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.
Your wife is at the point where no person alone can care for her. She needs to be somewhere with 24/7 staff. If you cannot afford 24 hour coverage in your home, it's time for a move. Frankly, a move is preferable to 24 hour home care either way.
Her sister to will eventually need someone to take over (or at least to give her a break) Nobody, no matter how well trained, cannot take on this kind of responsibility 24/7/365 without help. Your daughters and others are supportive and can see what is happening to you. You need to care for you. You cannot be an effective caregiver if you become ill or disabled. Two of you would then require caregiver services. You can visit her and be there for her any time you want without being responsible for physical care. In a nursing home she will have care staff 24/7/365. This is done in divided shifts by different people so they are less likely to burn out. Most nursing homes are clean safe places with professionals who truly care. I’ve worked in activities department while in high school and as a nursing assistant and loved the job. I can tell you from experience that caring for someone at your own home can cause burnout because you don’t have the support of every department (activities, kitchen, laundry, nursing, maintenance) working their portion. Caregiving at home, you are the activities, kitchen, laundry, nursing, and maintenance department 24/7/365.
I will every so often post 1-800-273-TALK in my posts because I want people to see this number and have it available. Depression and thoughts of self harm can happen to many caregivers. 🕊
Good luck to you and your family.
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
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.
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.
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
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?
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.
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
Good Luck Paddy You have been wonderful but your own health must be taken into consideration too.
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.
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.