Friday, August 14, 2009

Notable quotes on Dementia

In my copy of "The 36-Hour Day" I read about ‘problems with independent living’ and how different families cope. One recurring issue is an older person’s unwillingness to surrender their financial responsibilities when they become overwhelmed. The book quotes many examples. After a series of examples that make perfect sense the last one is described by the authors as ‘extreme.’ This is the example:-

‘Mrs. H…. is fiercely independent about money, so Mr. H gave her a purse with some change in it. He put her name and address in it in case she lost her purse. She insisted on paying her hairdresser by check long after she could not responsibly manage a checkbook. So Mr. H gave her some checks stamped VOID by the bank. Each week she gives one to the hairdresser. Mr. Hutchinson privately arranged with the hairdresser that these would be accepted and that he would pay the bills.’

Well done Mr. H! Now to me, from my perspective, this doesn’t seem in the least bit extreme. It’s a great idea, an accommodation, but it’s not in the least bit extreme. I take great comfort from this tale because it tells me that I am more than well enough equipped to deal with whatever lies ahead of us. I am so used to jumping through hoops, over hoops and around hoops.

Sadly, this also means that I am used to failure. The first attempt doesn’t work, so we try something else and so on, time and again until we find a good fit. I have an example of my own.

You see last year we had this "problem," what we American’s call an ‘issue.’ The issue was Nonna’s independence. I understood how frustrating it was for her to be carless, especially in America. Nonna has always been a walker so instead of being cooped up in the house she naturally decided to take a stroll. Quite often it is difficult to remember details when you’re on holiday such as your hotel room number or perhaps the name of the hotel when they all look so alike, so it was understandable that Nonna had difficulty with this too.

It was a worrisome time.

Other families might be able to allow a grandchild to accompany their Nonna but that wasn’t an option for us. Although our house has more locks and chains than the average home this did not deter Nonna. I’m sure there are many valid reasons for restricting someone’s freedom for their own safety but I was not happy with the idea of imposing such limits on my mother in law. I was not in a position to shadow her movements once she was outside the house as I had other responsibilities, not necessarily more important but certainly more immediate.

The crunch time came when a kindly neighbour returned a thoroughly disorientated Nonna to our front door, as she had found herself completely lost only a few blocks away from home.

We had already printed off the equivalent of a business card with appropriate details for her hand bag. Often she left without her hand bag. Then we tried printing off a six block map of the immediate vicinity, in extra large print, three copies, laminated, but it suffered from the same inherent problem, a map is of no use if it resides in your bedroom when you most need it.

Hence this year, this summer, these issues have been on my mind, worries. What to do? How to help? How to keep her safe? How to engineer freedom and independence? I’d guess that you too are racking your brain to come up with ideas because we all want what is best for Nonna? I feel people’s sympathy and good wishes, so I know that you’ll be as sad as me to know that this year it is no longer a problem, a non-issue. Nonna no longer ventures out of the confines of the garden, so maybe not a non-issue but a different issue entirely.


Niksmom said...

Oh, Maddy! This *does* make me sad. I have no idea what Nonna looks like but I picture her like my (long departed) grandmother (also Italian) who was once so spry and independent. She ice-skated well into her 70's, hiked all the time, etc. To watch our loved ones not only decline (poor word choice, I know, sorry) but to begin to limit's so very difficult.

Sending hugs. xo

Almost American said...

It sounds as though something in her brain has kicked in to keep her safe! It is sad though. My MIL had already stopped driving before I met her (she decided she didn't like the new car my FIL had bought for her.) It wasn't long after I met her that she just stopped cooking. I'm not sure how she justified that one but it was as though she had never ever cooked - was quite happy to have my FIL cook for her. It saved us a lot of worry and we never had to install a kill-switch for the stove and microwave - she just wasn't interested.

I found the 36 Hour Day a very useful read. My FIL wouldn't even consider reading it, and the one time he went to a support group for carers he came home depressed and refused to go back - it gave him too clear an idea of what was coming and he didn't want to think about it.

Is Nonna still at the stage where any of the meds will help slow the progression down?

Anonymous said...

So sad, and so real. You have a tender heart Maddy, and I know how hard you work to engineer freedom for your children and to ensure that Nonna has the best quality of life possible. I know that you are up to the challenge because of the amazing things you've accomplished with the boys. Still, I know how much it hurts to watch loved ones slowly slipping away. Life is not fair.

Anonymous said...

You are indubitably prepared for caring for Nonna. God's plan?

I would take my cues from Nonna as to whether sympathy is in order. If she is in good spirits and not complaining nor asking to go for a walk - why use that as a reason to feel bad for her? It's US who still want to walk out of the house and US who want her to walk out of the house. Why, if she's happy staying in, now, even if it a change?

WHO is not dealing with the change? Not Nonna.

As much as parents of SN children eschew pity, I cannot fathom why it is so easily given to others.

Margaret said...

Hi Maddy - Ive been offline for a while and just now catching up on your life.

I have an extreme idea: I read about a company that sells (online) personalized temporary tattoos. For some people of Nonna's age a tattoo may be impossible to accept. But for nonverbal or forgetful people who wander off without the paper or jewelry you give them to help others help them find their way home, it might be just the thing.

I can't believe you do this. you constantly amaze me.

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