Mom (82) with mid stage dementia has been living in an ALF since May and had a stroke last Saturday evening. She initially lost the ability to move her left side that has slightly dissipated, but still can’t swallow. We met with the palliative nursing team yesterday and since she has a DNR in place they asked her if she wanted a feeding tube inserted and she declined so it was decided the next step was hospice. For anyone who may have been thru this with an aging terminal parent, do they stay 24/7 until she passes? Can family members/friends stay with her thru this horrible journey and when do they administer pain relief? I’m her medical POA and I know from many previous conversations… in her own words “I don’t want to live hooked up to a machine that just keeps me alive when I’m really not living” but this is still so heartbreaking.
I recommend that you look at her AL contract now to see how much of a notification is needed that she will be moving. My mom was 60 days. However, if she needed more time than 60 days, she could continue to stay. You might want to put in that notice soon. She will have to pay depending on the contract just like she had an apartment.
Here is the site to determine how to pay for 24/7 care vs an SNF
http://em.agingcare.com/dc/Fx-jTanHtEUnDVLn1xruyTFjA9EpM3io6XPKgHHTdihpX7IAQu_i67QhPdRmW2LX0PrXkGyDCxDL91H9HvTGSA6LpAHUuFI4_f2iqn6nuPOvBVt5_7PwD-fSfDGp7eznewYw3SjBw-nYF6DjWozUYSYQUz4QBneuHgRiqN5r52J7-LuurTdUDmyD7Za1ZHyz4gRDIaNJt98-4vssSkoBIOM15RsRZ8GD86h-qwABEl7EXgvdLSvUVfc3UrRRVnUG/MzA1LVpYWi00NjYAAAGIQ-Lyab8a1DNj6oG1sl1j_1HlvsdO_vMPp9Ntp3KbOsvCzRn7RDuJRnCFulYBJKtUTSJCexA=
You should ask now if her doctor feels she will be able to stay in AL or need more care before she is discharged.
There are indications, changes that the body goes through at End of Life and when they are actively dying. Breathing changes, skin color changes are two that are watched for. The Nurse or CNA can describe these changes so it is not frightening for you.
Hospice will make sure that mom is comfortable.
When the body begins to shut down there is no feeling of hunger like we get. The body stops processing food and in many cases to give food at that point can be harmful.
((hugs))
*side note*
This past week someone on this forum mentioned a YouTube video "Hospice Nurse Julie" I have since watched a few of the videos and she is to the point, informative and well worth watching some of the videos.
My husband was under hospice care in our home for the last 22 months of his life, and when he started his dying process, hospice told me he would be dead in 3 days. Long story short, it took 6 weeks for my husband to die with not eating for 41 days and not drinking for over 25 days.
So just enjoy whatever time you have left with your mom and make sure that you leave nothing left unsaid.