My mother will be 98 years old in May and resides in the memory care unit in an assisted living facility. She suffers from dementia, hypertension, high cholesterol, polyarthritis, muscle weakness, fatty liver disease, cholelithiasis, macular degeneration and glaucoma. The arthritis is so bad that getting her in and out of the car and into a wheelchair to take her to doctor’s appointments has her screaming in pain. The only prescription medication she takes is for her cholesterol (atorvastatin) high blood pressure (lisinopril and metoprol) and glaucoma (latanoprost). The only drug her doctor ordered for her arthritis pain is Tylenol (325mg) two tablets in the morning and two before bedtime. Her insurance does not cover the visiting physician who comes into the assisted living facility, so she has to be taken out every time she goes to her PCP, which is every 3 months, first for a blood draw and then for the office call. He will not prescribe a pain medication and the Tylenol does little, if anything, for her pain.
The facility where she lives does have a van that will take her to doctor's appointments but it costs $30. She has been in this facility for 3 years at a cost of $5,300 a month and at this rate she will run out of money in two more years and I will have to try to find a Medicaid facility for her. I am in my early 70’s and the stress involved with taking her to the doctor’s when she screams in pain getting in and out of the car and the fact that her dementia gets worse every year keeps me in a constant state of anxiety.
I have sister who is six years younger than me who doesn't even call her on the phone and has not visited her even once in the three years she's been in assisted living because she lives an hour and a half away and according to her, her back hurts when she has to be in a car for more than an hour.
Would my mother qualify for hospice care even though she has no life-threatening illness? Even if she could get pain medication for the arthritis would be a blessing.
This is one of the most frustrating and exasperating aspects of the US healthcare system. Your mother has access to two licensed physicians. One her insurance won't pay for. The one her insurance WILL pay for won't prescribe her adequate pain relief. I don't know how you restrain yourselves, sometimes, I honestly don't - the longing to bang people's heads together would overwhelm me on these occasions.
Actually, thinking it through, I'm now even crosser. You're paying for insurance which doesn't cover the healthcare service she can access. You're paying for a facility's services, and their services aren't made available to her. And her doctor is paid by her insurer, and denies her treatment for her pain. Wouldn't it be nice to get all of these USELESS people in one room and ask them what they've got to say for themselves?
Unlike pcps,, hospice docs are expected to scrip lots of opiates and controlled drugs, such as Ativan. The whole original purpose was pain relief. Contact a hospice, preferably non profit, and avoid Vitas at all costs.
They will evaluate her and if she does not qualify for Hospice you can ask about Palliative Care. They can also help with prescriptions as well as managing pain.
If at this time she does not qualify for Hospice (and I seriously doubt that would happen) once on Palliative Care the Team that sees her would be the first to notice when she would be able to transition to Hospice.
Make the call to the Hospice of your choice. Many facilities have great relationships with all the Hospice that are in your area and could give you some suggestions if you do not know what is available.
I had to think long and hard about placing her on hospice as, once she is on hospice, no diagnosing or testing is allowed to be done. Mom has recently taken on a very yellow skin tone which indicates to me that something may be wrong with her liver. The hospice nurse said that, even if that was true, all they could do would be to remove her from what few meds she is currently taking. Hospice would not administer a UTI test for a possible infection but just prescribed a broad-spectrum antibiotic for her. The goal for Mom now is comfort.
Her dementia has progressed so quickly and I think part of that is a result of the move from the MC facility to a Residential Group Home with 6 residents and two caregivers. She has stopped walking and talking and just about stopped eating and drinking. It is very sad and leaves me with such a helpless feeling.
The Hospice Nurse comes about once a week and I can text her if I need to, but she is very realistic about her goal for Mom's care. The aide still showers Mom three times a week and gets her dressed for the day (still don't know why they insist on getting her up if she is non-responsive.) Hospice provided a tall-back wheel-chair for her and they supply briefs and bed pads and wipes and meds that qualify as "not curative". The hospice doctor only comes to see her at 6 months and that is to determine if Mom still qualifies for hospice care.
Mom was having trouble breathing last Sunday and we called the on-call hospice nurse who came to check on her and put her on oxygen. The nurse asked me if I wanted to take her off of hospice and send her to the hospital in case she stopped breathing all together so the hospital could maybe revive her. Nope. I don't want my mother anywhere near a hospital. Besides, there is a DNR in place. So, you can go off hospice, get treatment, then go back on if you still qualify.
It's time to talk to her PCP about hospice or palliative care - the visits to the doctor seem like unnecessary torture for the both of you. Explain to him that this 3 month routine is akin to torture and she doesn't seem to be gaining anything by it. At this point, her comfort is what should be priority.
I'm sorry that you're going through this and hope you get some answers soon.