My mil (86) is in nursing care since April and not doing well. She went from independent living in Nov of last year to two hospital stays and a rapid decline. Her last hospitalization in Feb she was rushed to ER as they thought she was having a stroke. We were with her and fully expected her to pass that night she was in such bad shape. She didn't and they discovered the next day she was actually having multiple seizures. We suspect she'd been having them frequently.
She is now bed bound, fully incontinent (has been since December). She is on about 8 medications, including three to prevent the seizures (others are for high blood pressure and other issues). She was recently evaluated for dementia as she has many signs including hallucinations and they suspect several forms. She is losing the ability to speak.
Today my husband went to visit her and said she said hello to him, but she was doing very poorly. They are now assessing her for a UTI and will treat with antibiotics. This is the 4th UTI she has had in as many months. In fact, she's had several infections.
My MIL is in a very good facility and self paying. One of the staff called my husband after the psych eval and he told her that he knew his mom would not improve and he did not want to try to fix anything else with more meds, but now he seems to think they'll treat the UTI and she will improve. Perhaps she will, but for what? To lie in a bed? The only thing keeping her alive is all of the medications.
At what point should hospice be considered? We have been through 10 years of watching slow declines in parents. My mother ended up on hospice with lewy-body and lasted 7 months in nursing, but she had no other problems and no medications - she also never wanted to end up in nursing (my grandmother lasted 7 years in nursing with dementia) - she wanted an assisted death - so I had some peace when she did go. My fil was sick for years on numerous medications and lingered in the hospital for five months. My husband was diagnosed a year ago at 59 with a rare illness for which he is getting treatment and this is taking a toll.
If it were my mom I would switch her to hospice now. I'm a bit surprised my husband wants to give his mother more medication given her state. I feel he is now in denial about next steps. To say I am weary that this has taken over our lives so fully is an understatement. The moving and care of my mil (she neglected many, many things business-wise we have also had to deal with) has been three very long years, following the seven with my mother and fil.
It is my husband's decision what happens next, but I find myself very angry that this is continuing. I know it is out of my hands on a spiritual level, but how can someone so ill keep holding on?
You said you moved to care for the MIL - do you still have your own home that you want to return to? Or your move was permanent to where she is located? If you have a home somewhere else, you can relocate her to be closer to your own home. If you're there permanent, things will probably continue as they have.
Understandably, you are both tired after caring for so many in the past and currently. However, your husband has to see this through in his way. I call it making decisions I can live with. That's what he will be doing and will need your support. Your personal feeling of anger is probably not anger at all - just being tied. Continue the walk with him.
First thing I had thought, was Alzheimers, dementia. But the onset was so sudden. Glad we got it squared away. Now I just get an order for a UA every now and then, and we keep a closer eye on it. They say elderly don't get the typical symptoms of UTI. She does have some dementia, but that episode was very abnormal.
Glad to know there are others out here that now about this. Thanks
She told me she was scared of dying and it broke my heart to see her the way she was that last week. She died in 7 days after they took her off of all food and water. They were just giving her morphine and an anti anxiety med to keep her out of it. But she had a strong will and she was still restless and would say a few words here and there which absolutely broke my heart and made me doubt my decision even now when she passed back in 2015.
Don't push your husband to make the decision you want him to make. It has to be his own. It's the guilt of a child to that parent that's going to haunt him if he feels he's made the wrong one. It's so hard to let go of that parent.
Some of us are stronger than others....let him make his own decision with the doctors and medical staff. Otherwise, if you push him to a decision that he's not ready for, he may never forgive you.
It's all entirely my husband's decision and he just met with hospice. Said it was the hardest decision he ever made. He is alone in this except for me, as his only sibling has dementia so he does look to me for support. I would never, ever, push him and in fact sending him some answers from this thread, really, really helped him and both of us (knowing they would not deny all medications and his mom would not suffer more from that was key).
I think intuitively when I heard she had another uti, I was scared and knew that we needed to get more help for her and not just keep treating these things and having her lie in a bed. As it turns out, she ended up in the hospital after they started treatment for the uti and it's where she is now as they were concerned about kidneys. Vascular dementia is what is taking her.
It is so hard not to feel guilt, even when we do the right thing. How does one prepare to see loved one's die? I guess it's been happening forever, and we survive, but it sure isn't easy. Thanks for your reply and very sorry about the losses you've been though.
Each had told me they didn’t want to survive in a vegetative state or close to it. For my mother and also for my life partner of 16 years, their brain function was minimal. For all three loved ones, brain damage had left them unable to drink, eat, walk, or communicate.
In each case, I brought hospice in once I knew they would not improve. The hospice teams. educated me on the process and observed experience of dying. It is a fact that good palliative care — keeping the loved one comfortable and managing pain — enhances quality of life for the patient and her or his family. There is a dignity in this approach that totally changes the experience to emphasize relationships and spirituality.
I made very difficult choice to withdraw non-essential treatments (like replacing a pacemaker, which required surgery). For my life partner, I chose to withdraw feeding when it was clear his body was shutting down. He was spared the discomfort and indignity of a feeding tube, and in that way his passing was as close to his wishes as it could be. I kept vigil at his bedside until he passed quietly. It was profoundly moving, and four years on, I have an abiding peacefulness when I reflect upon it.
Best and peaceful wishes to you as you face the experience that confirms our humanity in the most loving of ways.
My husband met with hospice this morning. Biggest issue is vascular dementia which seems to be progressing quite quickly (from speaking in full sentences last month to losing that ability almost fully). Was a very, very difficult decision for my husband to put her on hospice even though he knows it's the right decision - it's been really tough for us to do this all alone. I so very much appreciate all of the support here. That and the advise was invaluable. Much peace to you all. So many have been through so much.
It is hard, but I am still learning to let go...
This is a good forum.. Thank you for allowing our thoughts to be heard.
I know a few people who let go of this world to go to their Heaven when loved ones were not looking...
My mom was "speaking" to me when I went home for a few minutes. I was watering the trees she had given me. I heard her tell me to hurry back....
As I walked into the house, the nurse said out loud the time of her departure...
I was there all night, and went home to get a breath of air...She wasn't alone, my brother was there, but I stepped out for too long.
That's the reason why your husband wants to give his mother more medication, sensing that her life is running short!
-- and I wouldn't blame him!
Is hospice helping your MIL remain comfortable and taken care of?
Hugs!
MayThe Lord God almighty grant you and your husband grieving mercies and strength during this difficult journey.
I understand that hearing is the last to go, so maybe reminiscing about happy times will help all of you get through this without more trauma.
HUGS!!!
May I suggest reading about the signs of death and what to watch for on a hospice website if you are able? Looking back, once one actually sees what death looks like, you’ll see That medication such as morphine to keep them comfortable is the most humane thing to do. Sending you warm wishes and support during this difficult time.
Sending you hugs and support from Italy! I just went through the very same thing with my Dad who passed one month ago. You are in a state of limbo and nothing else seems to matter. What made it even more complicated for me is that my mother is ambulatory and was in And out of hospitals and rehab’s at the same time as my dad. I was predominately the sole caregiver for both. My daily montra that I’d like to share is, “one day at a time”. You are not alone. <hugs>