Different respite question

Cat K

Because my husband is on Hospice, I can get a three day respite. He would go to a Hospice house that is secure. My question is this: What would things be like once he came back to our home? Would he be more confused? Would it make things worse with his behaviors? Can anyone comment on their own experiences with their LO returning home after respite?

Timmyd

I will comment on my experience which is a little different than what you are describing. My DW has EO and is in early stage 6. With the help of her sister, we were able to travel with DW to visit her aging parents several states away. We stayed for about 10 days. The trip was difficult for many reasons but it was the right thing to do. Having returned home, the first week or so was a bit rough, but eventually we settled back into the routine we had before we left. So my experience with major disruptions to the existing routine was that it was difficult for a while, but we eventually got back to where we were before the disruption.

persevere

I would have a serious talk with the hospice nurse about it. We just started hospice about a month ago and my nurse was honest enough to tell me that sometimes it is worse when you do this. Each patient is probably going to be different. I don't know that I will ever use it unless she is just in some kind of vegetative state and even then I don't know. But you'll find others on this site who report positive experiences.

Metta

Hospice has offered respite to us for my DH, but I’m afraid to use it, even though I really need it. DH is so weak now and suffers from terrible anxiety if his very quiet home routine changes. I cannot imagine transportation by ambulance to and from an unfamiliar place for a week. It could send him into delirium and a possibly fatal decline. It is hard enough to watch the steady decline here at home, but he is comfortable.

marier

I have used respite 4 times for stays from 10 days to 21 days with varying results. The 1st respite he returned home in the same condition with no real signs of increase disease symptoms. He was stage 5-6. However the facility did heavily medicate him.

The second respite was absolutely horrible for him. My son went to visit him and found him on the floor covered in urine and feces. He had been there for awhile. He was told his dad was combative. He was able to get DH up and into the shower etc.. the next day I went to the facility to get my DH. He was unable to walk and had cellulitis in both legs. I took him to ER and he was admitted for 8 days for IV antibiotics and dehydration. DH came home from hospital he was unable to walk and was very out of it. He returned to baseline in about 3 days.

The 3 an 4th respite was uneventful and DH seemed to enjoy being there. The respite facility was a memory care facility and was rated very high. Hospice RN made the recommendation. DH is now stage 7.

I need the respite or I simple will not be able to continue to care for DH at home. My respite is paid for my the VA and Hospice. i am so very fortunate to have the VA benefits as well as my son helps me. He visits DH when he is in respite.

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Cat K

https://alzconnected.org/discussion/comment/259678#Comment_259678

Our hospice nurse said she didn't know what would happen. She advised me to ask you all about your experiences. It's bad enough now. I'm barely hanging on. Even though a respite for me would be heaven, I couldn't handle him coming home worse than he is now. It wouldn't be worth it. Thank all of you for your comments. I appreciate it so much.

PlentyQuiet

DH went for a respite and it was so very needed. I would not have been able to provide basic care, much less good care, if I did not have a chance to sleep and take care of some things that needed doing that were too hard to handle with DH home.

It was a bit bumpy for about 4 days after his return, but nothing too terrible, and since we are in hospice we just gave some scheduled haldol for a few days then backed off it a bit.

I am better able to focus on hoim now that these tasks are no longer nagging at me

jfkoc

Sorry to say but I have never heard of any change of place not taking a toll.