Struggling to stay strong and get a bit of my life back

RetiredTeacher · March 24

New to the group. I've been trying to deal with my husband's dementia in my own but it's too much. He's had dementia for 3 years now and in the past 6 months has had 2 vascular surgeries and a stroke. He is so weak and frail in addition to the cognitive decline. He struggles to even use a walker so getting out to even walk the dogs is not possible at this time. I'm arranging respite care 4hrs a week so I can have some normal life, albeit brief. Hiw do people get out with their barely ambulatory spouses? Seems like all the joy has been sucked out of my life! I need to know there's life after this and that I will live to see it.

JeriLynn66 · March 24

Is home health or hospice an option to consider?

RetiredTeacher · March 24

PT is coming post stroke and post surgery to help with muscular strength, balance, stamina. Don't think hospice is an option. Not that far along yet

SSHarkey · March 25

You might be surprised. Hospice needs a “potential” death within a six month period. My father was on hospice for 18 months! As long as the patient remains the same or continues to decline, he will continue to receive hospice care. Check into it. From what you’re describing, he may very well qualify. And the extra assistance you get is such a help!

Jgirl57 · March 25

Welcome retired teacher, my HWD is still ambulatory but getting out with him is getting tougher . He stops to pick up rocks, flowers, trash and sometimes topples over. Enjoy your 4 hours to yourself even if you just sit somewhere with a cup of coffee. You will begin to formulate plans that will help you cope. I do agree with SSHarkey that it wouldn’t hurt to have a hospice evaluation. From what I have learned on this forum that it can be a beneficial support if he is accepted. Glad you found the group

harshedbuzz · March 25

@RetiredTeacher

People either ask family to stay with their LOs or they hire home health aides to get some regular breaks to which they can look forward. FWIW, this doesn't just apply to those whose LO has mobility issues. PWD who are mobile require a different kind of vigilance that can trap a caregiver in their home.

Stroke and surgeries likely took a big toll in terms of his disease progression even though it's only been 3 years since his diagnosis. I would suggest reading the book Being Mortal. As dementia progresses, you may want to change your approach to routine testing and aggressive treatment of some conditions. This book was helpful for me in assisting mom in dad's care decisions. By the time dad reached early late-stage dementia, we started to back off routine screenings and focused on managing those conditions needed to keep him comfortable-- we continued his hormone therapy for prostate cancer to avoid bone metastases and focused on his mood and breathing issues. We stopped his retinal specialist and discontinued his metformin.

I would consider a hospice evaluation. If accepted, they could provide a lot of services and supplies. If he rebounds on hospice as some do, he might graduate which is fine. If he's not accepted, they can give you a sense of when to call them back.

HB