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BelAsh Asked June 2017

We just made the decision to do at home hospice for my dad, any insight on what to expect and prepare for.

Katiekate Jun 2017
My Mom was only three weeks in hospice..at home.
We started because my Mom had unmanageable pain that the doctors could not diagnose. We never learned why she had so much pain..but suspect it was her spine.

After about 10 days...the pain reached the posing where she was in constant agony. She was transported to the local hospice center so that they could get ahead of her pain. She stayed there 3 days...then transported home. She was glad to be back. I think she was worried she would die there.

After a few more days she was no longer aware of anything. She died 6 days after coming home.

My strongest suggestion...do not be alone going through this!

Hire a in-home caregiver if you must...but..make sure you have another set of hands at all times. You are going to need breaks...and you will not be able to predict in advance when you have to step away! In the final 2 days, I would have been a complete basket case without the aide to lean on..both for her physical help...but even more for the emotional support.

I am sure family members may agree to "be there". But, probably they will not drop everything in their lives to really be there ... hire help

One of the nurses at hospice told me this....when the downward change is apparent from one month to the next...the patient has months to live.  When the changes become apparent one week to the next...the patient has weeks to live.   But, when the downward changes are apparent day over day...the end is very close. ...  days or day only.

Sorrynotsorry Jun 2017
Hospice nurses are the kindest of people. They have chosen to do this because they understand this is a difficult time for the family and are very compassionate people.
They will provide a bed, toileting supplies including a portable toilet,bed pan and adult diapers. The also provide bed pads ,sheets and wheel chair . Everything is covered fully by Medicare. The patient is removed from all medications except for those that provide comfort and my dad continued on his thyroid. They provide sleep meds, Ativan,haladol ( things that help the nerves) as needed. You will get a visit every third day from an aid that will bath , etc your loved one. There are also RN's that visit regularly, and a Chaplin ( ours was a sweetheart). They are available 24 hours a day if you have an emergency but most the time you are on your own. You can take a respit ( do it) and they will provide over night care.
Each person goes through their own journey of leaving this earth and sometimes it's fast sometimes it's slow. My dad was home for nine weeks before he left us. He was in and out of alertness. Some days he seemed with it ,others he was loopey. Oxygen made a difference but he hated it. My suggestion is to allow him as many choices as he wants. Pie for breakfast- yes! Don't worry about nutrition. My mom nearly killed herself trying to heal my dad in hospice and he was miserable( he even told the Chaplin- lol). His last weeks were spent telling us he just couldn't please my mom. He wanted to sit up, go outside ,eat a burger and fries. She was not going to let him on her watch! So this is why I say let him have some choices.

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