My 96-year-old mother is living in her home with my brother. She has several medical issues but has been fairly healthy until very recently. She was diagnosed a few months back with spinal stenosis, which has caused severe pain in her back, shoulders, etc. She's used a walker for a few years but now complains of severe pain when walking. Her apartment is on the 2nd floor, with no elevator. She's missed multiple appointments for doctor visits because she says she's in pain/too tired to take climb the steps. She complains that the doctors don't help her anyway, which is mostly true, because she's not a candidate for any surgical/invasive procedures that might help. Lately she's had a few bathroom accidents because she can't get out of her chair quick enough to a potty chair nearby. She won't wear adult diapers (I think she's too proud) and is adamant about not moving to a nursing home. Her mind is still quite sharp, although I see a decline recently, perhaps due to the pain. My brother is trying to cope, but is dealing with a primary care doctor and several specialists who don't cooperate with each other. I'm 2000 miles away. She currently has a PT coming to the home 2x a week, but I feel like she needs more coordinated nursing care that doesn't require her to leave the house. At 96, who knows how long she has, but I don't think she's a candidate for hospice. Is Palliative care an option? Are there other resources out there? We want her remaining time to be more stress and pain free, but also don't want to completely forgo healthcare because she can't get out of the house. How does one go about getting care when primary care doctors are busy and don't seem to have the time or desire to help?
To my mind she will quickly move to a need for Hospice care, and to my mind you are looking at end of life here, and the peace of that, for there is nothing ahead for your mother other than torturous pain, medications that often, to the degree needed her cause constipation and obstruction and falls. I believe you are looking at end of life care and should consult regarding palliative, then hospice care.
I am so very sorry. I save a great article on a woman who did VSED (voluntarily stop eating and drinking) because of the severity of her stenosis, and her daughter helped her toward a peaceful exit. This is a lot of pain. A tragedy, and I am so sorry. I do not believe home care is possible anymore.
Only you and your mom can make these decisions. Please discuss options honestly with HER.
have her evaluated for Hospice. If they do not think she qualifies they can place her on Palliative Care and when the Palliative Care Nurse thinks she would qualify she can easily transition to Hospice.
There are doctors that do in home visits. If you put in the area where she is and search Doctors, Home visits once you get through the Agencies that do home care you will find doctors that will make house visits.
My Mom is 95 and has osteoarthritis in her back and knees. She lives next door to me and has stairs and hills. I've done everything possible regarding her back and told her we are done looking for solutions other than pain management because she wants to "fix" it but not PT, not surgery, not "pills"... so what's left? Magical thinking and boundaries for me.
It's not that her doctors don't care but they know a dead end when they see one. It's you and your brother's jobs now to inform your Mom that she needs to consider other solutions. The docs cannot fix her back, only address her pain.
So, yes to assess for hospice and palliative care. Also, if she qualifies for LTC this is covered by Medicaid if she also qualifies financially. My MIL is in an excellent LTC facility on Medicaid and even has a private room. The staff treat her wonderfully and she has all her needs met. Nice places do exist, and your Mom is remembering nasty old nursing homes from back in the day.
The caregiving arrangement should not be onerous to the caregiver. This will lead to burnout. Orbiting around her is not a solution. She needs more and different care than is currently in place.