Longtime caregiver looking for support and coping tips

Sue, Thanks for your comments. Letting go of expectations might help. It's her journey too and I can't pull quality discussions out of her, as much as I would like to have them. And yes, this is temporary, even if it seems like forever.
As for joy, I guess I'd say spending time with friends, sharing homemade baked goods, getting lost in a good book and crocheting are good for me. A friend and I did Wii bowling the other night and it felt so good, as did swimming after dark in the quiet pool. Last night a friend showed up unexpectedly to stay with Jenny, so I went for a walk and talked to my sister - and my niece, which was a bonus.
I need to focus on the positives more than the negatives of this situation. Thanks.

I do have friends coming to stay for an hour, sometimes twice a day, so I can go exercise or run errands. That helps a lot, but the days still get long. Hospice has respite care for 4 nights and 5 days, but it can only be used once every quarter or some such. I would really like to use it so fly back to our house in MN, but need more than 5 days to make that worthwhile. Something might work out in the fall when our snowbird friends come back and they might stay with Jenny a couple of days. Thanks for your thoughts

Sue, Thanks for your comments. Letting go of expectations might help. It's her journey too and I can't pull quality discussions out of her, as much as I would like to have them. And yes, this is temporary, even if it seems like forever.
As for joy, I guess I'd say spending time with friends, sharing homemade baked goods, getting lost in a good book and crocheting are good for me. A friend and I did Wii bowling the other night and it felt so good, as did swimming after dark in the quiet pool. Last night a friend showed up unexpectedly to stay with Jenny, so I went for a walk and talked to my sister - and my niece, which was a bonus.
I need to focus on the positives more than the negatives of this situation. Thanks.

You are in the most difficult situation I can imagine. It is excruciating accompanying a loved one on this journey, knowing there is little you can do to change the course of her disease.

Please continue to find joy in the little moments. And remember that if it all becomes too much to handle in your home, there are options. My sister and her family just moved her mother-in-law to residential hospice this week because her cares became too much for 2 people at a time to manage. They are sad that they could not honor her wish to be at home, but we know from prior experience that she and the family will receive loving care there.
Sue

@deek15redpeppers: I so feel for you. I don't post quite often but I read all posts from the caregivers. My husband has bladder cancer, and I've been on this journey together with him to battle this disease since August 2021. It hasn't been easy. For example, yesterday was one of those days when I felt there was nothing left in my reservoir to give.

My way of coping is to spend one hour a day alone, some days I let all my tears out during that hour, punch the boxing bag in the garage, some days I do yoga and try to meditate, I follow those yoga and meditation programs on Youtube. I started to read books again lately, I have been so depressed since his diagnosis and so overwhelmed by the day-to-day caregiving tasks that I was not able to focus to even read books for a long time. I just finished the book "Being Mortal: Medicine and What Matters in the End" by Dr. Atul Gawande. It is a good book, helped me to some extent put things in perspective.

Like some other caregivers mentioned here, maintain a sense of gratitude and appreciate small joys here and there also helped me snap out of depression and be there for him.

Last but not least, know that you are not alone, when you feel really down, post something here and we are all with you! There is no judgement whatsoever here, we are all in this together!

I am so sorry you are experiencing that. My family has, too. Hospice is BS. They promote it as you having a lot of quality time with family but they really don’t do anything. They just pop in for a second now and then. I cannot figure out all the people that tell me and leave the family to do all kinds of medical care that they have no training and no experience with. They disappear and leave you feeling totally helpless. I have read that hospice is the most profitable sector of medical care. I cannot figure out the people that tell me, “Hospice is wonderful.” It is a NIGHTMARE but it is real. I am sorry that you, too, are abandoned and struggling. I don’t blame you at all for having a tale of woe. It sounds totally overwhelming and like you have little practical help or support. I fear that this happens to many more people than we know. I do not even know what to suggest. People that are super wealthy could hire helpers but what about regular, average people? I can tell you that I would have felt much happier with some person or people to actually help … more than a listening ear or an hour here or there. There has to be a better way

We had the same experience with hospice in Mass. In fact we fired them because they were so bad. We paid some workers at my mother-in-law's nursing home to take care of her and they did 100% better than hospice.
now that my wife has dementia and I'm pretty much by myself, so I'm scared about the future

Sue, Thank you for your note. I found joy todya in getting a haircut and shopping at WalMart!!

Our hospice doesn't have a residence facility, only for respite care. She would have to be in a group home of some sort, with hospice still managing her care. The other option would be somehow getting her back to Minnesota to the residence hospice there. In the meantime, we're hanging in there. She told me once if I put her in a care center that would be the last time I saw her. That really hurt, but I think when it came down to it, she would change her mind.... She doesn't remember a lot of things she has said! Sometimes that's good and sometimes not!