I want to hide

I don't know how a person could be a caregiver and not experience loss, grief, anxiety and depression. Self-care is very important. Like the oxygen mask on the plane, put yours on first and then help others put theirs on. I meditate and exercise. I have sought counseling and now I have been started on an antidepressant. We are all doing the best we can. Seek help. Be kind to yourself.

I feel the exact same way. I think I have PTSD from all of this and have extreme anxiety getting up in the morning. I'm seeing a grief counselor, but, it's not all that helpful. I still have to deal with all of this. On top of all of this, I should be making plans to go and visit my grandkids, but, I won't be able to do that anymore. I'm so grief stricken at how this is all unfolding.

I so feel your pain. I’m there with you. I used to love to get up early. No more. When I get up he is always right behind me. DH is my constant shadow. I can’t go anywhere without him. I have no help. He doesn’t believe he needs a “babysitter” and he wants to keep me safe. Ok. I feel imprisoned.
We need to find a way to get time to ourselves and to get away from it all. I’ve only found little things that help. I have started a low dose of antidepressant. It does take the edge off so that life seems a bit more manageable. I seek out any local event I can find that we can go to together. Our library and council on aging frequently has music events and interesting presentations. We also have memory cafes in our area. It helps us feel a bit more connected. It gives me opportunity to chat with others or to simply space out and be alone with my thoughts without having to help him with something every 5 minutes. I try to find time to read. I’ve always loved reading. It’s a perfect escape from real life. Sometimes I go hide in the bathroom. DH doesn’t like to walk but I always try. Sometimes it works out and that is good for both of us. I make a daily effort to count my blessings. I listen to the news everyday and that gives me plenty to work with. Things could be worse in so many ways. What we really need though is to find ways to get ourselves some respite.

You are the boss. My husband first hated the respite person and refused to come out of the bedroom. I did not budge. Eventually he made his peace with it. He cannot bully you, however inadvertently, into never leaving him. Would you give a toddler that power? ?
Ps. I adore my DH. We love each other to bits , but I accept reality and my limitations.

Dear @JC5 ooh…as you can see, you are in good company with just wanting to hide and wish this all away. If only. What stood out for me from your original post (OP) was the very last question: "how do you stay positive and compassionate?".

That is where my "Ooh!" response comes in. The answer is, I don't! Try as I might, I have not been able to remain consistently positive and compassionate in the 5+ years that we have been fighting this losing battle with dementia. I don't know anyone who could.

But I try to come back to that as a baseline mindset, and this attitude really helps. I have fallen off that wagon so many times, if I dwelt on the times I "failed", I would never forgive myself. What matters is we keep breathing, keep trying (whatever you decide to try today as a goal…could be respite, or together time even a few good moments makes me happy and apparently DH too…could be visiting MCs for potential long-term or respite placement, maybe it is scrolling through Pinterest, or binge-watching something Netflix — just give yourself permission to do something (or nothing!) every day — just because YOU feel like it.

I am going back to read everyone's comments now. I always find such good tips and also real connections and understanding here in this forum. It can really be a highlight of my day sometimes, whether sending hugs or receiving them.

*Editing to add some things I remember from early days on these boards: A few of the more experienced caregivers at that time had a strategy that really worked for them to compartmentalize and kind of detach from the depressing aspect of this. They had decided to look at it as if it were a professional role. Like a job, and were better able to deal with behaviors (and even just the exhausting solo workload) with less angst.

Another strategy was thinking of the daily cost savings for anyone caregiving at home. It was something like $200-$300 a day, and they looked at that as a positive value to what they were doing…saving versus depleting. It helps me when I don't feel that this is thankless, useless work with a no-win outcome. There is a value to whatever I'm able to do on a daily basis, even on days when I'm not feeling up to the task. That is, I am helping my DH through his end of life decline and also helping myself by not letting his disease take us both out. Facing each day is just what we do, and finding healthy ways to help us help them, is important. Good luck to you (and all of us).