I have been caring for my husband for 18 years, although the last 3 have been the worst. I am so tired of cleaning his toilet, his butt, helping him up and down, in and out of the car, going to endless doctor appts, etc.
He has too many ailments, bad liver, Parkinsons, diabetes, walks poorly with walker. The last week has been the worst. He has problems turning around, it’s like his right leg is stuck to the floor. I dont know where to turn? Right now I’m waiting for doctor to call with lab results. I’m hoping for a UTI so he can get antibiotics and hopefully get better. I feel my own health going down the tubes. I’m 69, just retired in April, and want to be able to do things for myself! Don’t know where to turn!!
Of course no one wants to go to LTC. But in this instance, it certainly seems like the best and safest answer.
If it were me, I would be having the doctors tell him he needs LTC. Then you are not the bad guy, not that that will stop him from taking it out on you, but you can go home and leave other's to deal with him.
We let them be the ones to say, You can't come home.
Now, I'm not sure if that strategy will work for you completely, but if they can share the "blame" that will help deflect some from you.
I bet his outburst comes from fear, but that doesn't make it any easier for you to bear. Keep coming back here and getting encouragement from us -- you, your mental health, and your life are worthy and valuable also, you do not have to do what you already know you are not able to do, just because someone tells you that you do [[[hugs}}}
I have no doubt that you are sincere in wanting to help him but PLEASE be honest with yourself and admit to yourself that you are not a professional.
Read your title of this post again. Your own words speak for themselves. You say that you don’t know how much longer that you can do this.
Watching someone decline is heartbreaking. I feel your pain. The truth is that all you can do is step aside and let others do the heavy lifting. You are doing your job by offering love and support.
I too cared for a person who suffers terribly with this hideous disease. Parkinson’s disease is a progressive neurological disease with no cure.
Hugs and the very best wishes for you and your dear husband. Take care.
Hospice is NOT full time care. He needs to stay in Long Term Care for HIS safety.
It's time for assisted living or a nursing home (if your finances are sufficient for assisted living).
Set boundaries. Make it clear to his doctors that his multiple appointments are a significant burden. They'll reduce them. If they don't, find another doctor.
I recently took my dad to a follow up that involved medical transport, me taking a half day from work, a care aide accompanying him from the nursing home...at the appointment, a physician's assistant came in, took his blood pressure, took off his sock and felt the pulse in his foot. Appointment over. They had the nerve to want to schedule a follow up! If you don't speak up, your situation will NOT be taken into account at all. Doctors just put patients on a standard follow up schedule. It's not necessary most of the time. Or, could be handled by a visiting nurse. PUSH BACK.
There have been two different specialists who saw my dad for a symptom and then wanted to continue seeing him for follow ups. I asked if his regular physician could order the blood test, do the check up, whatever, and guess what...of course they could. Saved us four visits a year right there. I also insist that, when a specialist visit is necessary, that they choose one who is in the same medical building as his general practitioner. They'd have you drive all over the place and not think a thing of it.
We're in a crazy healthcare situation in this country where we are customers, not patients, so we may as well start acting like it. Demand that your time be respected and that you and your husband don't waste away your lives in their waiting rooms on necessary appointments.
Likewise with drugs. Always ask, "what happens if he doesn't take it."
I would also like to comment on other people’s suggestions. Unfortunately, care is not standardized across the country. Adult day care may be wonderful in one place, not too good in another and non-existent somewhere else. Costs for in-home care assistance is vastly different depending on the minimum wage and cost of living in different areas. You’ll need to do a lot of research in your area as to what is available. Support groups can be very helpful because many have been through what you are going through now. You have not mentioned that he has any form of dementia so it may be harder to find a caregivers support group.
The good news is that your husband was hospitalized. You should speak to your doctor and the hospitalist. There may be a chance that he can be placed in a nursing home. A Veteran’s home may be your best bet, however, you may not have one close by. The nearest one to where I live is in the next state over, 6 hours away. Don’t cross off that possibility because of distance.
I will mention here that I placed my husband in a facility three (large!) states away where there was family available and the cost was half the price. He had dementia and didn’t usually know who I was. He had excellent care and I visited every three months until he started getting ill all the time. This year I visited 8 times in 7 months and then he passed. He had trouble swallowing and then stopped breathing. I was able to place him on hospice for the last month. The hospice nurse called me every time she visited him. I knew when he stopped eating and was able to set up final arrangements before he passed. I’m glad I had done that because he passed on July 4 and his body had to be removed within 4 hours.
This goes to everyone reading this. My biggest suggestion is to make sure you have all the legal paperwork done; power of attorney, medical power of attorney, DNR, will. Check all beneficiaries for financials, life insurance, etc. Even if you think it’s all done it’s worth it to double check. If he is still considered competent to sign legal papers, please get them done. It will make everything easier as he nears his end of life. While he’s in the hospital meet with an elder attorney. It’s worth every penny.
I wish you peace and patience as you travel through this journey. Give to the caregiver! It’s not selfish, it’s necessary.
If so you can get help through the VA. You can have someone come in to help out. Depending on where and when he served he may qualify for a little help or a LOT of help. It is possible that he may be classified as 100% disabled due to Service. If that is the case he would qualify for placement in a VA facility.
Have you contacted Hospice?
You would have a nurse 1 time a week. CNA's at least 2 Times a week. Social Worker at least 1 time a month, Chaplain and a variety of other services. And Respite. 1 week a year. You would also get supplies delivered that includes a hospital bed, if needed a Sit to Stand or a Hoyer Lift and medications delivered. And you would be able to ask for a Volunteer to come sit with him so you could go to the store, go have lunch with a friend whatever you wanted to do. (Usually no more than 4 hours though)
From the description you give on getting your husband in and out of the car...this is when I stopped taking my Husband in the car. It was to dangerous I was afraid that he would break a hip trying to pivot without moving his leg that seemed to be rooted in place just like you describe.
I know that might sound selfish but sometimes in life we really need to be selfish & put ourselves first, which has always been hard for me to do.
After taking care of my mom for 3 years, she had so many ailments, could barely walk, fell alot, diabetes, kidney & heart failure, had to clean potty chair or change diapers. It was awful watching my mother suffer & after she passed away in February, I have thought about it so much & if I could go back in time, I'm really not sure if I would make the same decision. I dealt with everything pretty well for the first 2 years but the last year is when I wish I had put her in a home because I started resenting my mother & couldn't handle taking care of her in the shape she was in & it took so much just to take care of her that I neglected my own health & became very depressed.
You have taken care of your husband for 18 years & you deserve to live your life too! After 18 years you definitely should not feel guilty no matter what you decide.
Put yourself first which I assume you rarely do.
I feel for you and wish you all the best
You may want to talk to Medicaid. You could become a Community Spouse. Short story...your assets are looked at and split. You can then spend down his half by putting him in LTC. When his split is gone, then he goes on Medicaid. You can stay in the home and have a car. You will have enough to live on. There is more to this.
Good Luck.
You are entitled to a life, at 69 it is time to take it back.
I wish you the very best.