We just brought my mom home from the nursing home to stay with us for awhile. She has multiple sclerosis (fully bedridden) and she’s having one of her episodes where she almost passes away (it’s happened three time the past two months). The hardest part of this is the pain. Her legs are in so much pain I can’t turn her and it’s so difficult to change her. She is on pain meds and I give her morphine 30 min before each change. It’s still so hard. She’s otherwise lethargic and on O2. Her oxygen level drops to the 70’s without it. She’s on hospice and they have been increasing pain meds, nothing still seems to touch it. Any advice or experience with this? Can this be normal at end of life?
You recognize that this is the end of your Mom's life. My daughter lost two friends to this dreadful disease and it slowly and inexhorably took everything from them. They both passed before the age of 50. One passed with Hospice, and one took her own life, something she had long planned and prepared to do. I fully understand the pain, and the desperation of family witnessing it.
Hospice will explain to you that medicating to this level of being pain free can/may/could lead to an earlier death by hours or days or weeks. Medications at this level tend to suppress breathing; O2 sats would likely fall very low.
This is a conversation for your family, the hospice team, and the doctor involved. All should understand and be on board with any plan moving forward. Worrying about O2 levels now, at this point, is worrying only about buying more time for your Mom to live in torment in so far as I as a lifelong nurse can see it. But as I said, it is very important now to coordinate the last loving care with the team trying to help your Mom reach relief and peace.
I am so sorry for your loss, I am so sorry for your having to stand witness to torment you cannot relieve. It is a terrible place to be. My heart goes out to you in this last time with your Mom.
But when he was in his 6 week dying process, his pain was unbearable, and the fentanyl pain pump was no longer effective,(although he remained on it) and Hospice had me giving him hydromorphone again through his picc line every 4 hours. That did nothing. When the aides would come to bathe him, he would just hollar in pain when they tried to move him. I was told by his hospice nurse that unless I had him taken to their facility, where they could administer stronger medications, that had to monitored by their Doctors, there was nothing more they could do for him in the home. And so my husband suffered terribly. Before he became unconscious, I would ask him if he wanted to go to the facility and he always said "no thank you". He wanted to die at home, and at home he did die, but it was heart wrenching for me to see him suffer so.
So I guess the moral of the story is this, if you don't want to watch your mom suffer in pain, have Hospice transfer her to their facility, where they will administer heavy duty drugs that will keep her knocked out, and I hate to say it, but will probably hasten her death as well.
I'm so sorry you are having to watch your mom suffer. I feel your pain. You do whatever you feel is best for your mom. God bless you and keep you.
Another option would be to do away with a brief actually "on" her. A good absorbent pad under her and placing a brief between the legs might be enough. Yes it will require more monitoring so that the pads do not become over soaked making a full change of sheets necessary. There are some very absorbent pads, washable that I used for my Husband they were a brand called Conni I found them on Costco website. The full pad will absorb over 60 ounces of fluid they are not inexpensive but well worth it for the time and trouble it saved me.