Even tho my husband is not too bad physically, his dementias are going downhill.. I was at my chiropractor today, with hubby in tow.. My chiropractor keeps telling me because of existing arthritis in my neck and back I can not keep taking care of hubby for much longer..
I do need to clean the bathroom just about every time he uses it, and more often now him too.. He just cant seem to control where his urine goes anymore, tho most times he does really try.. If I dont clean the bathroom (I am only letting him use one of them) at least 4-5 times a day it just starts to really smell like a mens room.. I know its not his fault. But my back is not happy with me..
I do send him to day care 2 days a week, and could send him 5, but its a 26 mile drive one way and I can go thru over a tank of gas a week between day care and other appts.. He just came back from a 2 week respite 2 weeks ago and I was starting to feel much better without all the extra work..
His old social worker at the VA wanted me to do the paperwork for the Veterans Home 2 years ago, but just did not have the heart to do it. No I am considering contacting his present SW and asking her to help me get it started since we need a lot of info from his VA dr's. Paperwork is 37 pages..
I have a few friends that tell me to start it all, but I just feel like a failure as a caregiver.. We have been married over 40 years..
But as I sit her and type this I have my tens unit on my neck and back, and in a few minutes will be helping him get into bed.. And several times during the night I will need to help him in the bathroom and get back to bed..
My thoughts are its me not him at this point and I will fail him.. I know this is something he never wants and I have told him we will keep him home as long as possible.. But my body is telling me I cant do this much longer..
I am venting, just dont know what to do, and not feel like I have failed him..
Thanks for listening all..
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An update: Tho I did my end of the paperwork for the State Veteran's Home, I am still waiting for it to be completed.. His SW wants to wait till he has his 6 months checkup with his PC to do the medical portions. In the meantime, I have gone and checked out the top rated (from Medicare and US News) nursing homes that the VA has contracts with. Some have were rated the top 10 in US news report and other areas for the area, others no so well.. I have him on a the list of 2 of them and one more that I cant seem to get to but will... I figured since there is a wait for all and the state VA home in the area I may as well get him on the list since they all have waiting lists.
Next not caring for a loved one at home isn't a failure - I'll never understand why people think like that. A failure is not recognizing what and where the BEST care is that your loved one Deserves and understanding that it may not be you even though you still want to provide the care. Failure is not recognizing when your health is suffering trying to care for someone because you think you can still do it. Failure is not allowing trained professionals to give the best care that you can no longer really provide and understanding that choosing this option doesn't mean you love your spouse any less.
Start the process as there are lots of wait lists out there and by the time you find something it could be as late as 2 - 3 years from now.
You might want to look into an assisted living community where you could move in as well. There are some really great ones out there (and some real dogs too) and that way you could be with your husband in a place where you could still be together but still have the back up of trained professionals on site.
Thank you too sunflo2.. I appreciate your input also... A housekeeper a couple time a week wont work.. I need to clean the bathroom several times a day, I cant leave it.. that's the way I am.. The other days he doesnt go to day care I try to find things to keep us busy.. He has a standard meeting with other Vietnam Vets on Fridays and that is the highlight of his week.. He cant contribute much anymore, but he comes out of it with a smile on his face.. Tomorrow we go to our PD support group.. All these wear him out, but its outings for him.
BUT I did call his social worker at the VA today and she is sending me the updated paperwork for the state Veterans homes.. So, I am going to get that started.. She and I spoke for quite awhile today and she is happy that I am starting the paperwork and kept on telling me not to feel guilty, that its normal for me too, but she doesnt want to see me call at last minute when I just cant do it anymore..
Thanks for the permissions! My head tells me I need to do it, my heart tells me no..
You are never a failure. Caregiving needs escalate or we age out of being able to keep up with the escalating demand so no regrets if you find it's time for hubby to move to a facility where others can take over day to day care and you can be the wife you want to be to him and have some real quality time for remaining years.
Consider it. You have our support and permission to make a change.
If your husband is admitted to a NH, it doesn't have to be permanent. If you are both unhappy (after 2-3 months of trial) then, you need to come up with another solution.
Oh, and those adult sons that are no help. Call and tell them, that you need them. They are just pushing the responsibility off on you. If they have good jobs, they have personal time that they can take off to lend a hand to a sick father.
I would love to have someone come cook too! never has been my favorite thing to do , but I do.
I have read the statistics about caregivers.. We go to a Parkinson Support group once a month and in the past year, there have been several caregivers that have passed. Tho they were older then myself.
My head tells me to at least get the paperwork started as we would still have to wait for an opening at the Veterans Home, his being 100% he does go ahead of others that have lower ratings.
we cant afford assisted living and other then maybe some aid and attendance, the VA doesnt pay for it.. We had gone a long time with no income until VA and SSD came thru..And I had to stop working to care for him and I still have a few years till my SS starts. They will pay for a NH since he is 100%.
I just feel so guilty every time I think about proceeding.. Our kids are no help, 2 sons and the closest is 2200 miles away, but his job keeps him travelling all over. They just tell me to do what I think is best.