Wednesday, December 2, 2009


I had dinner with a friend last night. Mona (not her real name) used to be president of the strata council of the condo complex where I lived in New Westminster. In BC a condo complex is known as a strata. She sold and moved out about a year before I did, and when I sold my condo she offered me a house-sit while she went off to Arizona to visit family. It was timely for me, my condo was sold but I was not yet ready to move eastward.

Mona's parents lived in Burnaby, they were working class folks who raised a family and lived in the same house for over forty years. Mona is the youngest of three sibs, she has a sister in North Van and a brother in Arizona. As these things go, her parents began to show signs of dementia in their 80s. Mona, as the never-married daughter, became more and more involved in their lives, until last year she was spending all her weekends and after-work time at their home. She did get home-care help but it was tricky, her mother resented strangers in the house.

Then last August on a fine summer evening her parents went walk-about. For six hours. Mona was frantic, called the police, helicopters were called in, the whole nine yards. Eventually she got a phone call from someone who lived many miles away who had noticed an older couple sitting on the kerb in front of their home and had managed to coax a phone number out of them. It was time for a nursing home.

In BC you can get into a nursing home situation on subsidy fairly quickly, but there are strings attached. Major strings. You can for example look around your region and pick three nursing homes you like, but you won't get into any of them. You get slotted into one you don't particularly like and wait for a "lateral transfer" to one of your top three picks.

If you are a dementia patient, that first move into a crappy nursing home far from friends and family will probably kill you, so the lateral transfer will in all likelihood be unnecessary. In addition, if you are a married couple, you will be separated. The province will guarantee that you will be placed in the same complex, but the chances of being in the same room together are pretty slim if not non-existent. If you are a married couple with dementia, then for sure that move will kill you.

Mona's parents were hardworking frugal folks, it turned out when the kids went through all their papers, they realized that their parents were well off enough to afford private care. There would be no estate but their parents now had options. With private care they could be placed in a nursing home nearby in the same room.

"Private care" sounds superior, but in fact it is exactly the same as "public care". Mona and her sibs placed their parents in a nursing home that also has public care residents, and there is the slim possibility that her parents can shift to public care in the future and stay in the same accommodation. So the family home was sold, the family finances arranged to pay for the nursing home, at a whopping $9,000 a month. For a tiny room and less-than-perfect care.

Mona says that her parents got better care when they were still at home. At the nursing home she has found her Dad in dirty diapers, apparently unchanged for many hours. Their room reeks of urine, she has taken their laundry to her own home to wash. On $9,000 a month.

Mona is no wimp, she has reamed the nursing staff out on more that one occasion, made threats of dire consequences if they don't smarten up and treat her parents with dignity and respect. Her sister on the other hand is afraid of retaliation from the nursing home and tries to get Mona to shut up about the abuse, the sister is afraid that the parents will never get on the public care option if they rock the boat too much. Mona angers both the nursing home and her sister by continuing to advocate for her parents. I'm a bitch, she says.

Mona has no social life, she has lost a significant amount of weight in the past year. Her doctor applauds the weight loss but not the method of achieving it. She feels a tremendous amount of guilt because her mother is rather upset about losing her home and being forced by her own family to live in this godforsaken place. They are somewhat safer there, but have on occasion gone walk-about from the nursing home.

Once Mona was in Arizona visiting her brother when she was called that her parents had gone missing. Her response was, "And you are calling me because?" Did they expect her to rush back from Arizona to help in the search? Mona's mother can present as sufficiently normal to exit the nursing home as if she were a visitor there. But there is nowhere for them to go, their home has been sold to pay for the nursing home care.

Mona's sister says she will kill herself before she will let this happen to her. Mona says, How will you know when it is time? Do you know that dementia runs in families? Will you follow through on that plan when your mind is gone?

If we treated children like this, there would be public outrage about child abuse. It is OK to treat elders this way. Sooner or later, we are all elders.

Be afraid. Be very afraid.


Wisewebwoman said...

OMG Annie, what an awful heartrending story. My first thought was why on earth did they not arrange round the clock home care for the couple, were they too far gone? Friends of mine did this with the daughter assuming one of the shifts. The father's Veteran's benefits covered part, etc.
I am horrified at the cost Mona's family are paying for such substandard care.
I know retribution can be taken out on the residents, this I have learned from a friend who has a husband incarcerated with Alzheimers who dared to voice her disgust.
Off I go to the Hemlock Society.

Annie said...

Hi WWW, 'round the clock homecare was just not an option in this case. Mona would dearly liked to have kept her parents in their home, she tried all the alternatives before resorting to institutional care. Her Mom hated strangers in the house and made it clear to homecare workers what her opinion of them was, it was not a nice work situation and they did not stick it out. Mona was constantly dealing with the fallout from her Mom's behaviour. Dementia takes many forms, and paranoia and aggressiveness are common. $9000 buys a lot of care, but they had to sell the house to access that money.

Watching my brother deal with caring for his mother-in-law at home has made me understand very clearly how difficult an alternative that one is. It takes its toll on the caregivers; caregivers of dementia patients suffer serious health consequences not to mention loss of social life and everyday freedoms.

Maybe Eskimos who stuck their old folks on ice floes and moved on had the right idea. :-(

20th Century Woman said...

This is a story I know well. I lived it with my mother. I still blame myself for not keeping her at home, but then I remember the problems. Cost is a minor one. Round the clock help actually costs more than the nursing home, but that's the least of it. The real problem is security. Doors must be locked in such a way that they can't be opened by the patient. My mother was able-bodied, confused but not stupid. And she could argue fiercely.

It would take a major effort of thought and money to solve this tragic problem. Now we just shut them up and wait for them to die. So so sad.

Annie said...

Hi 20CW, your story sounds a lot like my brother's, with the locks and all. His MIL once dug a hole through the plaster in a closet with her bare hands in an attempt to "escape". It is indeed tragic, and how does one avoid such a fate oneself? How will we know that it is time to call it a day?

Barbara Anne said...

Anne, That's so sad for all concerned. My mother had Alzheimer's so I hear you. She was irate with I moved her to assisted living after she tried to leave her house at 11pm, fought me for the car keys, and she wouldn't believe me that it was night time even when I showed her the black sky. That was a nice facility and she was okay there until she went walk about one night. From there it was a locked unit where she thought she was on a cruise (go figure).
I could write a book, but won't.
I agree it's an outrage that elders are so mistreated - and that insurance companies can get away with refusing to pay the costs of caring for an Alzheimer's patient. It is a disease. A terminal disease.

Hugs to all.

Annie said...

Hi Barbara, It must be awful to watch your Mom deteriorate to that point, I have been fortunate in that regard. As 20CW says, we have not figured out as a society how to care for people with Alzheimer's yet, and it is a terrible terrible shame.

My father had dementia but died before it progressed to the bitter end. Ironically he forgot how much my youngest son irritated him, and for a brief while they got along quite well, to the huge confusion of my son. The funny twist of an awful disease.