She has been in hospital 6 times in less than 2 years. Mostly with bowel obstructions. She also has had afib for 20+ years. This last time she was admitted for slightly elevated cardiac enzymes and urinary retention and had a Foley catheter for 2 weeks. Her legs were so swollen they were weeping. She also left hospital with oxygen as needed when she’d not been on it before her hospitalization except for when she had covid the year before. Also put on Lasix which causes its own problems. Instead of improving after the hospitalization she has been steadily getting worse. She now cannot even go to bathroom without oxygen. Chronic constipation makes her obsessed with BMs and of course is made worse with lasix. She has to use a walker all the time now. She is on a nebulizer twice a day. And she can barely have conversation except very short ones.
She just saw a cardiologist who told us her heart seems strong according to the echo. He made no diagnosis not even CHF. I asked then WHY can’t she breathe, why is she swollen and needing Lasix to begin with?? All he said is the atrial fibrillation makes it hard to totally evaluate the heart so they really don’t have an answer. Ughh. He asked if she’d seen a lung doctor. Not a single physician she has seen including her primary she has had for 30 years has made that suggestion. Now she has an appt with a pulmonologist in a month. In the meantime it takes 2-3 ppl to take her to an appt.
We have gotten absolutely NO answers but they just send a therapist and a nurse by her house. In the meantime someone has to be with her 24/7 to assist with ADLs when 2 months ago that wasn’t the case. Others I talk to who’ve been through it with their elderly parents say it sounds like time for hospice. Mom still thinks she will get off oxygen and be able to go back to walking with a cane!!! In the meantime 3 of us are upending our lives to care for her. Is it even worth waiting and taking her to the pulmonologist. Could there be a miracle cure for her at 90yo? I’m pretty sure I’m going to call for a hospice evaluation ASAP. Any thoughts?
I noticed declines with my mom. I asked her PCP about hospice...he said we are not there yet. I was told it was probably because of her pain (but she was in pain before these declines) so I was looking forward to her next pain clinic appointment. Hospital admissions didn't reveal any declines in her chronic conditions. After my mom's last hospital stay, she came home with visiting nurse services. The nurse couldn't stop talking about hospice, and when she called my mom's PCP, then he said it was appropriate. My mom (96) did not like going to the hospital and did not have a good quality of life so we went with hospice. She was gone 2 weeks later...
It seems like your mom may not be ready to go. Maybe you can try to get an earlier appointment with the pulmonologist...or another trip to the hospital to see one there. It seems like time to have that discussion about her wishes going forward. Probably a good idea to get a hospice consult too.
Time to get an evaluation by hospice and stop dragging her around to doctors. Both of my parents died in their 90s. Of course I hoped that they'd get better, but by that time, both of them were hoping to die.
It's okay to give up when the inevitable is going to happen. Get mom into hospice care and enjoy her while you can. Good luck, and I hope you will soon come to acceptance of the situation as it is. Your mom is lucky to have you as her advocate.
She should now be on palliative and Hospice care in my humble opinion.
If you are POA ask for a gerontologist and get a decent diagnosis to start with.
Do know, whatEVER you do, a failing heart is a failing heart and it will fail. So for now what you want is comfort and the alleviation of symptoms.
Yes, consult with hospice. They deal with this kind of thing and may have some insight, but even if not, they will tell you what kind of assistance they can provide. You can hire in-home caregivers, or you can move her to a facility. One advantage of doing this is that the family members can focus on making their time with her more positive and cheerful, rather than a struggle.
You can arrange for a medical transport company to take her to appointments. Depending on whether she needs a stretcher or can go in a wheelchair, and whether she needs one attendant or two for the transportation, a family member can ride along (if there's room) or drive separately.
As waytomisery says below, use her money, not yours, to pay for her care.
She may qualify and she may not, but you won't know until you ask them.
And your mom may not want to be put under hospice care if she's determined to get better and walk with her cane again, so be prepared for that as well. She will have to be in agreement with stopping all medical interventions, and just be kept comfortable and pain free until she dies if she opts for hospice, so you may need to have that all important talk with her before you proceed.
Consider bringing aides in ( using Mom’s money ) , to take off some of this burden .
Another option is SNF or a hospice facility if you can find one . Even hospice at home will not alleviate much of this for you and the other caregivers. They only send an aide a few days a week for a few hours .
If Mom is competent , she decides regarding the pulmonologist and hospice . However , she does not decide to keep you and your family as caregivers . Either she pays for aides or she goes to SNF care , ( or hospice facility if she decides on hospice ).