Longtime caregiver looking for support and coping tips

Sue, i'm just now seeing your post and I really like the idea of saying things are really tough right now...... My problem is I can't say that without crying. Guess that states where I'm at right now.
I feel so stuck - quality of life stinks for us both. My spouse is in hospice care and we could be having quality time, but we're not. I see this going on for months yet - her mostly sleeping away the days, me using the hoyer lift to get her to the wheelchair or commode ( for stools that only come once after multiple lifts), her fussing about needing to void (she has a catheter), me pushing her to the handicap shower in our RV complex (where she can't stand to wash her bottom anyway), her trying to transfer from wheelchair to pool lift chair ( VERY difficult), me trying to stay patient with her intermittent delusions, offering and preparing food she may or may not eat, and never being able to talk about her pending death.

How's that for a tale of woe? Thanks for listening.

I agree with you 100% when it comes to taking care of ourselves. I have genetic depression and have had it all my life. Because of depression, I have a difficult time taking care of myself.
And when I don’t take care of myself physically or mentally, I get more depressed. It’s taken me awhile, now that I am a caregiver, to take the time to take care of me. At first, being a caretaker, I got so depressed that I became unable to do normal everyday things and that made me more depressed. I am finally getting out of my depression by “taking care of me”, one day at a time. I get dressed more often, I start having routines to brush my teeth, my face, even comb my hair. I keep in touch with family and friends more often, watch videos on FB of babies and puppies that make me laugh (the best medicine). I read a lot and I watch PBS, or I just relax and rest and just enjoy the sights and sounds around me. One day at a time.

Good afternoon, @deek15redpeppers Your post reminds me of so many situations with my wife. I often found myself singing the Rolling Stones' lyrics: "...You can't always get what you want, but if you try sometimes, well, you just might find you get what you need..."

None of us ever know what we are facing. I thought things would get better after my years as a caregiver ended, only to have a stroke two months after it ended.

I am so proud of you for posting your travails! So often we keep those things bottled up and that just, for me at least, made matters and my feelings worse. I believe caregivers need to be as vocal as possible since, again in my experience, non-caregivers rarely understand what we actually are called upon to do -- day in, day out!

If it's any consolation, it wasn't until quite late in my wife's months in hospice that she and I had any serious discussions about her pending death, but we did finally have them.

I hope the sun is shining on you today!

Strength, Courage, & Peace

Hi @deek15redpeppers, it sounds so overwhelming and sad, emotionally and physically draining, no wonder you are crying. It sounds like you're more on your own than you're getting support from Hospice. Does Hospice offer any kind of respite care? Are there any friends where you live who can stay with your wife when she sleeps during the day so you can take a break? My thoughts are with you.

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

Hi Tim,
I work with families to help them place loved ones in Memory Care communities but it's not right or affordable for everyone. Through my work I became involved with Leeza's Care Connection, founded by Leeza Gibbons. When she won Celebrity Apprentice, she used that money to start foundation that solely is for the purpose of supporting caregivers. There are two physical locations, in LA and her hometown of Irmo, SC but they do have virtual support and classes, as well. The Caregivers that participate are at different stages. Many of them are former Caregivers and still participate to help others through the journey. You can find the site by searching Leeza's Care Connection. I am fortunate to live in Columbia, SC so I do attend the Irmo Lunch and Learns in-person but many participate online and of course in online, live support groups. Hope it helps. It is a wonderful group of caring people.

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

Scott, They did get the lift chair installed at the pool and Jenny was able to use it twice. But when we tried on Saturday, she was unable to transfer from the wheelchair to the lift. Now I'm reluctant to try again, as she was almost on the ground, unable to move her legs and feet to move either way. I was close to calling 911 for lift help - thank goodness for an acquaintance who stopped to assist me.
Just for the record, we could send you some warm air - it's 105 or thereabouts today!

I’m exhausted taking care of my disabled son and there are two of us doing it. My heart goes out to you.
I agree with tim1028 that small things add up to some sort of appreciation for life- a sunset, flower, some happy news or watching children play, for example. What normally brings you joy?
I wonder if letting go of expectations would help? Or trying to see your situation as temporary? This too shall pass.
However I also know the impact of grief on one’s life. It can be all encompassing and overwhelming. I’m going to try an online grief group. Hopefully I’ll gain some coping skills.
I wish you could get more help from hospice…or anyone in your community. Even a short break from the stress could really help.

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.