A frustrating two days....

Rich and I spent one of our more frustrating 48 hours of our lives to this point, trying to arrange extended care for his 84 year old mother.

Over more than a decade, Rich's mother has been in slowly declining health.  A series of strokes and then a car accident have left her with what has been diagnosed as vascular dementia and further in the care of Rich's father, now age 82.

This has never worked terrifically well.  Rich's mom has always been the more dominant partner in the marriage and felt frustrated at the lengthening list of things she became unable to do. But they managed, with Rich gradually coming to help them manage their financial affairs to get out of debt and make the most of their small incomes from a pension and social security.

Starting last year, however, things have become steadily worse.  Rich's father, the caregiver in the marriage, has been showing steady signs of increasing dementia while his mom began to need more consistent care - more regular nutrition and hydration, for example, and a more complicated drug regime.  There began to be incidents where neither Rich nor his sister were told that a key drug was running low in time to order more  - and his mom began to have to be taken more often to the emergency room for treatment of what were preventable problems.

Rich, his sister and I began to investigate options for extended care for both his parents - and the problems began.  In a perverse example of government inefficiency, Medicare would pay for Rich's parents to enter a nursing home - which they generally don't yet need - but will not pay for them to have someone provide them care in the home.   There are a couple of pilot programs that Medicare is running now, the Program For All Inclusive Care For The Elderly for example, but these are not widely available.

PACE is unique. It is an optional benefit under both Medicare and Medicaid that focuses entirely on older people, who are frail enough to meet their State's standards for nursing home care. It features comprehensive medical and social services that can be provided at   an adult day health center, home, and/or inpatient facilities. For most patients, the comprehensive service package.

And assisted living facilities are generally just out of the range of Rich's parents and, frankly, likely my own parents and the parents of just about everyone I know.

By far the more efficient and money saving and frankly more popular thing for Medicare to do would be to pay for in-home care which would help Richard's folks stay in their home for longer and, by far, save you and I and all the other U.S. taxpayers money.

Anyway, things came to a head on Tuesday of this week, while I was traveling on business, and Rich's mom wound up in the hospital intensive care unit - again with a mixture of problems that arose from neglect and which had been entirely preventable. This time the social worker at the hospital advised Richard to help his mother into a nursing facility, at least for a short time, in order to at least let her recover her strength outside of the neglectful home life and let Rich and his sister come up with a plan for how to help their father.

The problem is: she would not go.  Not even for as little as a week.  And she refused to accept the reality that doing things like not drinking water, not eating correctly, not taking her medications on time etc had played any role in putting her in the hospital. 

"We are fine and can take of ourselves," she insisted, conveniently overlooking the reality that her husband/caretaker is frequently incontinent, that her daughter found the house adrift in dirty clothes, dishes and old newspapers and that she had already acknowledged that she was not doing what several doctors had urged her to do.

And the doctor backed her up.  In the doctors view, in order to be considered a danger to her self or others, Rich's mom would have to walk into his office with a gun a take a shot or two.  Anything less she remained completely competent, able to decide her own affairs and he was not going to order her into a nursing home even for a week.

So, there it ended.  Presumably Rich's folks headed back home by cab when his mother left the hospital last night. I say presumably because Rich and his sister are pretty much done with trying to do more, at least for now.  They worked terribly hard for more than two days to make the arrangements for his mom to have a safe place to recover her health and thought they had arranged one - only to have the rug pulled out from underneath the effort.

In the end, as Richard said, he and his sister cannot be responsible for changing a situation that, it has been made abundantly clear, they do not have the authority to change.  And to make matters worse, his father had been scheduled for a driving evaluation later this month that he has now announced that he will not accept.  "I can't drive just as good as any damn doctor can," he snorted.  When Rich asked him how he would feel if he drove the car and killed someone, he said "I am not going to do that, I can drive fine."  This from a man who got lost the other day driving to a store five blocks away.

Anyway, there it is. If anyone has any comments or suggestions, please feel free to offer them.

 

 

Comments

[gretchen]

David, that sure sounds like a difficult situation. Unfortunately, I think it is becoming all too common. Sadly, our healthcare (and insurance)systems tend to be reactive, rather than proactive. And dementia is particularly difficult. I have a friend who is an occupational therapist and has worked in many nursing homes over the years and she says dementia is like having a toddler's mind and personality, but inside an adult sized body--you can imagine the difficulties that arise! And if it's any consolation, my friend also says that elderly people are really better off staying out of nursing homes as long as possible--she says there are so many abuses, not only to the residents, but also to the system. I think, as you say, your best option is in-home healthcare. I have a friend who does that, but, very often insurance won't pay for it and his clients must pay out of pocket which can be cost prohibitive as I'm sure you are aware. I will pray for you and Rich in all this. God bless.

[catherine]

It is a nightmarish situation further complicated by emotion and dark murky mysteries of getting old, something never to be discussed in polite company. I am sorry for what you guys are having to deal with. The only thing to do, really, is the best you can; and give yourself a wide berth of forgiveness. Also, it may be a good time to thank mom and tom for having long term care insurance which is something I hope you and Rich have discussed having also.
Love, Catherine
PS I like your blog name and "look"