Mom is in stage 5 ALZ and lives in assisted living with my dad, who also has ALZ --- stage 6. Her cognitive abilities vary from month to month, but recently have been pretty good. We've been making hard decisions on how much intervention and hospital trips to take for both my parents--- we are close to palliative care and mom and dad both are sick of the doctors/hospitals/medical intervention world they are in. I had the opportunity to sit down with mom about a month ago when she was doing very well and asked her point blank what she would want me to do if she needed to be admitted to the hospital for something serious. She very strongly told me she does NOT want to be admitted to the hospital, even if it means she could die.
Moving forward --- this weekend she had signs of a stroke (she fell twice and couldn't speak. She could only shake her head yes or no.) While at the ER, the doctor highly recommended that I admit her to another hospital an hour away because he felt she should be monitored and there was an MRI machine there and he wanted her to have an MRI over the weekend pretty quickly, instead of waiting until Monday (when a machine would be available at the hospital she was at.) I asked the doctor what her care would be if the MRI did show a stroke (this is apparently the only way to know for sure) and he mentioned surgery, depending on the type of stroke/situation, but really couldn't tell me any other treatment option for a stroke. After talking to him at length, I felt like there wasn't anything we really could do for her given her age and Alzheimers (surgery is out.) However, the assisted living facility seemed to want her to stay in the hospital because they felt they could monitor her better than back at assisted living. I got scared, so I went against mom's wishes (she was adamantly shaking her head "no" to going) and we admitted her to the hospital. It is now Sunday evening --- we are past the 24 hour critical time since the stroke symptoms began (early Saturday AM), mom is now back to her usual baseline, talking, walking, and all stroke signs appear to have disappeared. The MRI still has NOT happened and I have no idea when it will --- the hospital can not give me a timeline and tomorrow will be the second full day of waiting. Mom is now in tears, begging to go home, getting up from her bed and sending off all the nurses running. My dad is crying back at AL with anxiety, wanting her home, and my stomach is in knots, now realizing that I should have never admitted her.
I don't know what the hospital will do tomorrow, but they don't seem in any hurry for anything and I want to bring her home, even if it goes against the doctor's wishes.
Any thoughts on this? At what point did you stop taking your loved one to the hospital. How do you know when that is? Mom is not at the point where she would qualify for hospice, btw. But she just wants to be left along in peace and I don't blame her. I feel so guilty for putting her through this. Had I known the MRI would not have happened within the 24 hour timeframe the first ER doctor recommended it, I would never have admitted her.
Second, this is the time to be done with hospitals. They freak out dementia patients far too much as you've seen, so make the decision to check her out tomorrow and take her home.
This is what I did with my mother. After a nightmarish two-weeks in the hospital during Co-id when she could have no visitors, I said we were done, arranged for hospice, and brought her back to her memory care place. I said we'd treat whatever ailed her there as best we could, and that was that.
She had phenomenal care those last seven months because she had the regular caregivers plus a hospice nurse keeping tabs on her. She came home from the hospital and promptly got Covid, was nursed through that in place, didn't eat except for supplemental milkshakes, had a nasty pressure sore treated in place, and in general was pretty perky and content in spite of it all.
Get the hospice evaluation, and go from there. I'll bet she qualifies.
Caught between balancing Mom's preferences for peace (no more hospitals) against our modern illness-focused health care (treat everything).
I think in your shoes, when these matters don't align I would refer to Quality of Life as the guide.
Now that Mom is back at baseline & can walk & talk, I'd strongly consider discharging to AL. I'd try to weigh up what benefit an MRI would give? (Eg TIA, now passed.. so..?).
My own grandmother had many suspected TIAs. Hopitalisation if fall with injuries so to treat the effects of the fall eg ensure no broken bones. Otherwise TIAs fell under 'natural events'.
Too late now on any of that, so here we are.
Since all symptoms of stroke seem now to be gone, it may be that your Mom is suffering TIA. You can look that up as "Transischemic attack". Symptoms can come and go if there is some plaque in the carotid arteries, or for other reasons. This can be treated with a minimally invasive surgery to remove plague or with thinning the blood a bit (with all the nastry side effects involved there).
Yes, your Mom seems adamant about not wanting any interventions now. Sounds your Dad is the same. Do they have this in an advance directive? Are you the MPOA. In hospital now call in the SOCIAL WORKERS at once and see about getting this done if palliative or hospice is to be the choice. There are decisions coming now. One to to treat and the other is palliative care. You seem clearly to already know that. So get a social worker to help you get done what moves you will make in the near future.
Thanks for your feedback!
Best of luck.
Your mother may have had a TIA, since the symptoms resolved within 24 hours without a deficit. Ask the care team for her palliative consult now. That team will help you talk this through. At this point an MRI may show you the source of the TIA, but then you're back to having to decide if going against what seems to be your mother's wishes would be what she wants or worth it. Helping families navigate these decisions is a palliative care team's specialty, so use them. Best wishes.
There is a very good chance mom will die of a stroke before the Alzheimer's kills her.
I urge you to contact Hospice now and see if both mom and dad would be Hospice eligible. (I am guessing they would be)
There will be no more hospitalizations. (although Hospice sometimes will hospitalize a patient)
No involved testing
You say mom is not at the point where she would qualify for Hospice. Have you had Hospice in to evaluate her and dad? While "6 months or fewer" is commonly stated a person can be on Hospice much longer. (My Husband was on Hospice almost 3 years)
There needs to be a "documented, continued decline". With the stroke that you are aware of she has probably had other small, undetected strokes. Her declines may happen literally overnight.
If mom and dad have a DNR or better yet a POLST (goes by other names in some states) make sure it is posted in a location where it would be seen by paramedics. Make sure you have a copy with you each time you take them out. If they go out with a group from the facility make sure she has a copy in her purse, he has a copy in the wallet or if a staff member goes out with the group make sure they have a copy.
If anyone calls 911 and that piece of paper is not available the paramedics will do what they have to do and when she arrives at the hospital the hospital staff will do what they have to do. This means CPR, Tubes, IV's.
CPR works great on TV, might work well on a younger, healthy person but for the rest of us CPR if done correctly will probably break ribs, crack the sternum and with the broken ribs a lung (or 2) may be punctured. This results in recovery from broken bones and the potential for pneumonia. (if the CPR worked)
if you are POA you can sign her out
against medical advice form.
have her go back to AL with your dad.
Do ask for Hospice Evaluation. Her palliative care doctor may be able to evaluate for hospice.
Do not feel guilty..but do make sure you have her DNR form and her actual wishes close by in case fire department paramedics are called, they know not to transport her.. it’s on the POLST form and DNR form..
I framed my aunt’s POLST -and put it in the wall. She didn’t know what it was, but everyone knew what to go or not to do. I also write my contact information for everyone to see. My LO’s were 5 minute drive from me.. 2 minutes if I ran a stop sign and sped a little.
Thank you to everyone who responded to my questions last night. You all helped to cement in my heart what I knew was the right path forward. I just needed to hear it!