I would like to start a discussion or get feedback from those whose LO is showing signs of end of life or from those caregivers who have already experienced this journey. My father, 89, is presently on hospice and seems to be quickly heading towards last stages of dying. This has brought up a whole slew of problems and issues that my siblings and I have heretofore managed to avoid. After years and years of taking care of both my parents with increasing levels of care in their home, from assisted living to nursing home level, they both entered a nursing home about two years ago. A few months ago, my father was hospitalized twice with low blood sugar and aspirational pneumonia and it has been downhill since. Besides the grieving we are all going through, is witnessing the heartbreak of my mother who is losing her husband of 67 years. Even more distressing is that after caregiving for our parents for about 18 years in a united front, we are now fighting over end of life decisions for my father. This is by far the most stressful for me. Crying for my father and with my mother is draining but not nearly as awful as disagreements with my siblings.
Thankfully, there has been a cease fire among my siblings and we all managed to talk about burial plans calmly. The contentions, initially, was about engaging hospice in the first place. I had to convince and educate my sister about what hospice actually does. There were more disagreements that have now been resolved, and I believe they all stemmed from attempts to deny this was actually happening to my father and that there was nothing we could do about it.
I have stated on previous posts about the difficult upbringing I had and the ambivalence I have felt over the years while caring for them. My father at times could be a violent, unpredictable drunk. At other times he was supportive, loving, and very funny. In the last 12 or 13 years (without the alcohol) he has been just a sweet old man, grateful for anything that is done for him. I often find myself grieving and tearful, which is very unusual for me as I very seldom cry over anything.
He is so proud of me. Anyone who comes near, he tells them, “This is my daughter.” as if I were royalty and he was waiting for praise. I will so miss that.
Summer 2018 she didn't sound right so I went to see her, things were a mess in her home (she used to be meticulous), she had edema and could barely walk, clearly hadn't showered in a long time, etc. So I made arrangements and brought her to live with me (700 miles away move). When she first got here she was walking once she got on meds for the edema, she was forgetful and could get confused but could carry on a conversation, she could prepare light meals and would go outside to smoke on the porch, etc.
This was last October. Today, she can't stand without assistance and can barely walk a few steps. Completely incontinent, needs diapers. We have arguments about things like she tells me I took her head and she wants it back.
I don't have any siblings so I don't have to fight over decisions, it's pretty much just up to me so that is one stress I don't have to put up with. I'm sorry because that must be tough on you & your siblings at a time when you need each other's support.
I watched him decline for a total of about 12 years.
The last month was a pretty rapid decline and the last 2 weeks were faster yet.
When a person reaches End of Life there is not much you can do to slow it (why would you) or change it.
The body no longer needs nourishment and soon to follow it no longer needs fluids.
To feed someone that is refusing food, no longer needing it, can create more problems from aspiration to blockages.
To give IV fluids can also cause problems.
Keeping the mouth moist with swabs is the safest thing to do.
I am unsure of what "fighting" can do since it will not change the outcome.
You should support each other, support your mom and support your dad.
(I know I am kinda like Pollyanna and see the good, glass half full person)
Your dad I am sure is concerned about your mom as well as the rest of the family. Reassure him you will all take care of mom, and you will care for each other. Even if you think he does not understand you never know what gets through and I think emotions are just as important as the spoken word.
I mentioned this in another post but there is a great pamphlet called Crossing the Creek and it may answer a lot of questions and put your mind at ease.
And PLEASE take advantage of the Social Worker from Hospice they are there to help, support, educate and try to iron out wrinkles when it comes to disagreements. (The Chaplain might also help out in that area)
((Hugs)) to you and the family this is a difficult time for everyone.
There really doesn't need to be decisions. Hospice usually means the end of life. If done at home family needs to be united to make things easier for Mom. My Moms final days took 2 weeks. The first one she closed her eyes and never openedagain. She was responsive, though. Then she wouldn't allow staff to get her out of bed. So we finally said, let her be. She then could no longer swallow. At this point Hospice was brought in. Her body was shutting down. Trying to give her food would have not helped because she could no longer digest it. Hospice is there to keep them comfortable and pain free. Morphine will be given for pain and to make breathing easier.
Ask if someone from Hospice can talk to ur family. A lot of people do not understand how Hospice or the dying process works. People deal with death and dying differently. I was raised where its a part of life. I grieve and go on. I still miss my LOs though.
In the past few years her executor's position was to "do everything possible" whenever she had any emerging health issue on top of her stroke, like infections or pneumonia or whatever.
But lately that position has changed and all the family agrees she has suffered enough. Now that she chokes on even a little mouthful of thickened fluid, it's been decided to stop food and water and let nature take its course.