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.
Good luck to you and your family.
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. 🕊
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.
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.
Best wishes moving forward.
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.