I have a mother with severe vascular dementia, COPD, osteopoI have a mother with severe vascular dementia, COPD,

I have a mother with severe vascular dementia, COPD, osteoporosis & a list of other conditions as long as your arm. She is 79 yrs old, was in a horrific car accident in July last year, broke her back & ribs, had emergency surgery in November to remove 1/2 of her colon, multiple UTIs, and the list just keeps going, not to mention multiple trips now to ER, urgent care, doctors visits, geriatric visits, labs. everytime she needs to be seen by one of these doctors, it's all ALL DAY EVENT! These trips usually average about 6 hours or more and is absolutely ludacris to think its ok to put her through this. I can't get home health, her conditions are NOT curable & she does not want her life to be prolonged so all we are looking for is palliative care at this point to manage her pain & comfort. Yet, Kaiser says she doesn't qualify because she doesn't need "skilled nursing" & she doesn't yet qualify for hospice care...how do you deal with getting patients back and forth to these appointments without having to put them sitting hour after hour at these clinics??? I'm about to lose my mind, I'm 400 miles away & have to coordinate with her caregiver but nothing has really worked out. We've tried taxi service, which never came to pick them up & caregiver had to walk home over 2 miles pushing her in wheelchair, other time hired private van transport but they left her stranded at urgent care at nite because they were off work so at 9:00 at night we had to find another transport & last time we ended up having to pay overtime for the van transport because appointment took so long. How do you get the medical care they need without creating a more stressful situation having to spend soooo many hours waiting, shuffling to various locations for exams, labs, pharmacy, etc.???

Helllo and welcome, you do have a stressfful situation! I'm at a losstoo. Have you called medicare or tried a case worker or case manager. I wonder if the Alzheimers association could giive you ideas.

I find it has been extremely difficult to get any guidance from her doctors. I keep asking the questions but just get shuffled to another doctor or specialty clinic for another grueling trip out only to be referred to someone else for that type of thing. It also seems that none of her doctors are looking at her total overall condition when treating always focused on curative treatment rather than comfort, even though I have tried to explain she has very specific wishes in her advance care directive & I'm trying to get them to listen. Short of standing on the rooftop of a high rise with a bullhorn, I don't know how to get her doctors all on the same page. This whole process is turning me into a bitter person & believe more now than ever that modern medicine is so focused on treatment, they have lost perspective of allowing natural death.