Hubby is 79. Has Parkinson's, severe dementia, aphasia. I am 75. I have been the sole caretaker for 2 years. I love life and entertainment, of which there has been none. He has never been an attentive husband, so it is hard for me to keep this up. Bathroom accidents, broken sleep all night, no way to communicate, sundowners is really bad. All our children are busy with new grandchildren and jobs. I pay for any help I get which is only a few hours a week. I cannot keep doing this. Cannot afford a nursing home unless I sell our home. Many people must be in this situation. I feel helpless and hopeless.
my heart goes out to you. You must be feeling there will never be light at the end of the tunnel. But there are so many of us that can identify with your situation.
these replies are good advice.
I had a similar situation and posted my frustrations and the feeling of no way out. I received excellent options and took the advice. I am so happy I did and am doing so much better.
I can only speak of it as my husband suffers from it since 2015, GP suspected in 2011-12.
But no dementia and independent, mostly mobile on his own or with walker, PT and exercises even more, he had health scare in summer which motivated him to get better, which turns out be be great improvement overall, so much so it looks as if Parkinson is gone. Of course it is not.
Or is it cruelty of this disease, fluctuating then going back to worse?
But life has changed, most I can deal with.
I like you love life and living fully, having friends over, going out, travel etc. but also I like studying, arts, reading, so being alone is good as well.
I know my limits, if dementia, incontinence, mobility decreases etc. show up then I won’t be able to deal with it.
Mentally and physically dangerous for both of us.
Can you start slowly with reclaiming or enriching your life, meet friends, however you can improve and focus on your life.
I cannot suggest what is best for you, husband in facility? More respite? You need to decide.
You need to take care of you! Don't throw away the rest of your life there is no reason to.
I wish you the very best, don't procrastinate start investigating now.
You sound so worn out and discouraged. I hope we can help.
Have you ever consulted a well qualified Elder Law attorney who understands Tennessee Medicaid? In most states, there is provision for the "community spouse"--the one not in the NH--to retain the house, one car and enough assets so as not to become impoverished.
This link might help:
https://www.medicaidplanningassistance.org/medicaid-eligibility-tennessee/