Mom lingers on in hospice with CHF and CKF. Anyone else experience this?
My 98 year old mother was moved to hospice level at her AL facility in October... She has had CHF and CKD for over 7 years and just moved to the AL place last July. I've asked the hospice nurse and head facility nurse about her projected time left. In October they thought 3-6 months. Now 6 months later they say...3-6 months. When I ask with trepidation..."could it be a year?" they're non committal but kind of indicate..No. But it just scares me that this could go on and on.
Financially and personally the situation is wearing me down... I've taken care of her for 7 years and it just seems like this is an endless decline with no end. When I go to see her she is sometimes a bit out of it ...but mostly she's 90% mentally, and on the ball. She's still walking enough to get to bathroom with one person assist, though her strength has declined quite a bit. Even though she is in a facility, the burden of caring for her is there.
I'm ready to get my life back and no matter how much I take care of myself ...I don't feel like I will be truly free until she passes.
I'm sorry if this triggers anyone that I want my mom to pass but honestly I do. Seeing her decline is terrible, and the toll this has taken on my marriage and my personal life and finances is worse. Everything I did was by choice, and I'm not complaining about my choices or asking for feedback on that.
But what I'm asking for feedback on is.... Has anyone else experienced this endless hospice stay... and are there any signs that she is near end of life... or will it happen rapidly? I'm sorry to say but I'm very frustrated with how long she is lived, and seeing her physical suffering while her mind is intact.
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I was told several times from hospice that they thought my husband was dying yet he continued on until the final time that his nurse told me that he would be dead within 3 days, and 41 days later he finally did die.
It's heartbreaking to know that your loved one is going to die, yet you don't know exactly when.
I compare it to like being on a rollercoaster with all the ups and downs.
But one thing I know for sure and that is only the Good Lord knows the day and time that He will call your mom Home, so while she's still alive just try and enjoy whatever time you have left with her, because I'm guessing when it's all said and done that you will give anything for just one more day with her.
I thought my mother would definitely live to 100 in memory care, while on hospice with the same issues your mom has. She was lively and in the activity room mingling every day, but eating less and less over a 1 yr period as her dementia and CHF advanced. One day, 2 months after hospice came on board, mom had a "status change" out of nowhere. She went to bed and immediately became semi comatose, beginning the active dying process and passed exactly one week later, comfortably, thank God. What I felt was primarily relief that the journey ended for both of us so peace could be found after 10+ years of struggle.
Nobody but God can answer your question, I know. I wish you peace and a speedy resolution to a very difficult matter for the two of you
So I believe your reaction is normal. As for when, who knows? What worked for me was to disconnect from her as much as I could and to stay busy with other matters in order to protect my mental health. Altogether her dying took 5 years.
I wish you luck as this journey continues.