After hospice respite

JDancer · May 23

My spouse returned home from a 5 day respite stay at a local hospice house severely deconditioned. Was using a walker with stand by assist and now he can barely stand. I left them a note with our daily schedule at home, but I wish I had made it clear how many feet he ambulated daily. I needed the break, but now I wonder if it was worth it. May have to consider a hospital bed soon.

harshedbuzz · May 23

@JDancer

The progression you are seeing may be more related to him being moved out of his usual environment and routine more than not being given opportunities to walk. Or related to them encouraging him to get up but taking "no" for an answer vs you not taking "No" as an answer. Or it may just be progression in late stage that would have occurred regardless.

If you returned to caregiving rested after doing something to benefit yourself— then it was totally worth it.

HB

JDancer · May 23

This is what I keep telling myself. It's good to hear someone else agree, thank you

Quilting brings calm · May 23

He’s going to progress at some point regardless of what you do- or what anyone else does. So please don’t feel guilty about taking time for yourself. The saying goes: this disease will take the patient down - don’t let it take you down too.

For right now- there’s a good possibility that he will regain some of what he lost in respite now that he is back in his normal routine.

JPJardinel · May 24

Please don't second guess yourself for taking that break because caregiver burnout is real and you needed it, full stop. The deconditioning is unfortunately really common after even short inpatient stays, especially for hospice patients, because the activity levels in those facilities rarely match what someone does at home no matter how detailed the notes are. Going forward if there's another respite stay, asking them specifically to document ambulation distance daily and requesting a PT evaluation before discharge can help bridge that gap a little better.

Also, I got my references here:

https://hopebridge.care/family-caregivers-prevent-burnout-and-restore-emotional-energy/

https://en.wikipedia.org/wiki/Caregiver_burden

https://pmc.ncbi.nlm.nih.gov/articles/PMC7644552/

JDancer · May 24

Thank you for the support. Unfortunately, I don't think he'll make it another 6 months for a second respite stay.

Emily 123 · May 24

I wish you could have had more time for yourself. The hospital bed sounds like a good idea-anything that can save the wear and tear on you. Hospice should arrange it—My neighbor needed one temporarily and the bed delivery team was in and out in about 20 minutes.

JDancer · May 24

Yes I appreciate hospice more and more as our needs increase

JDancer · July 27

A delayed update- A hospital bed was delivered 3 days after DH returned from respite stay, It was a weekend, so I couldn't get it earlier. He never got out of the bed and died June 19th.

SusanB-dil · July 27

JDancer - so sorry for this loss.

But please still don't second-guess your respite. 'this' horrid disease did this, nothing you did. He was blessed to have you. He was blessed to have your love and care.

Now take your time with everything and take care of you.

((Hugs))

Jgirl57 · July 27

So very sorry , Peace to you and your family (((HUGS)))

easy23 · July 28

So sorry for your loss. May he RIP.

After hospice respite

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