I don't feel we can travel anymore: I want our lives back

I just heard a most delightful podcast and idea for those who still want to travel - listen to this - Kathy’s Cruises
https://open.spotify.com/episode/3P1vcWIXdxVQs1SeMQROmm?si=0M9XmnZgSL6c7o4jHgC5MQ&t=2443

The narrowing of our own lives and enjoyable activities that are no longer possible without struggle or conflict, takes a heavy toll on us as caregivers for spouses with dementia. I'm not sure family members realize how much we would like to get our lives back, at least some of it. We can't travel, Dr and dental appointments are frought with tension and resistance, paranoia and separation anxiety keep us distanced from friends and relatives and unable to have personal private time. We keep doing what needs to be done but our own quality of life is rather joyless. And, as Bill said before, the Cavalry is not coming.

@chris2024 I could have written your post, word for word. I, too, miss my life outside of caregiving. I find I can't even enjoy my sewing room because he needs me every couple of minutes, sometimes only to tell me about something he's been thinking about. Joy is not a word I use these days. It helps to know I'm not alone.

Approaching year fifteen now as my husband’s full time caregiver. I don’t think about our old life much any longer. I just get through each day with no real expectations except to get through. I vaguely recall our old life now and my former brilliant and compassionate husband. I have learned to go from despair to anger and even rage at this predicament. Now I can truly say I have adapted and accept whatever the disease throws our way. I can even laugh at some of the absurdity this strange set of circumstances present. It’s the only way to survive a seemingly life sentence.

@djgb Welcome to Mayo Clinic Connect! I’m glad you found this discussion group and hope that you will jump right in! Do you have any help from his doctor’s office? I’m thinking of nurses or nurse aides.

His palliative care doctor checks in periodically. Recently referred him to be assessed by hospice, but he did not yet qualify because deemed to be stage 6. The only time we got in home assistance was after emergency hip surgery after a fall. Medicare does not cover this unless patient is on hospice. In home care is very expensive out of pocket. His medical bills were catastrophic after months in ICU. Legal bills also expensive when I was forced to hire an attorney after discovering his siblings interferred with his rightful inheritance because they assumed he was going to die when he was on life support. That issue has now dragged on for over a decade.So I rather have a full plate and care for him myself until he may qualify for hospice care.

If, by any chance your husband is a veteran, the VA or disabled American Veterans may be able to give you some help. Just a thought.

Not a veteran.

Can you try another hospice? It seems like the palliative care doctor would be able to help.

my wife lost her ability to drive a couple of weeks ago and was having a very difficult time with the doctor's decision. initially, she said "I don't remember the doctor saying I can't drive". However, the doctor followed up with a letter addressed to her saying she cannot drive safely anymore. I posted the letter on the refrigerator for her to see everyday. I thought I'd take her away to a very nice place in North Hero VT for a short vacation. We had been to the motel 3-4 times in the past and she always loved it.
When we arrived, she didn't remember being there in the past but still thought it was beautiful. On the first day, she wanted to go for a walk (by herself) on the property. I watched her walk to one end of the property, then she turned around and started walking back (should have taken 5 minutes). 10 minutes past and she still had not arrived. Then I get a call from Plattsburgh, NY. (45 minutes away). I normally wouldn't have answered but I did. It was a waitress calling from an outside pub on the property and telling me my wife is there but she doesn't know how she got there or where she was staying. I walked over and walked her back to our room. Needless to say, she was VERY upset and angry. That would be the last walk she can take by herself, anywhere. We had a couple more days at the facility and they were uneventful but she was also never out of my sight. She is still angry about her lack of independence but I will just have to accept her anger and let her get tired yelling. 🙂 I can't get angry with her because I know it's not her, but it's her disease.