Tuesday 20 March 2012

Recognise your parents' dementia in an early stage

No label for this post - wouldn't know how to.

As you may or may not know, my parents are over 80 and both in an advanced stage of dementia, or "suffering from memory-loss" if you like. Whether it's an official diagnosis or not, the results are that slowly, sometimes quickly, and then slowly again, life-as-we-know-it slips out of them

Through the various stages of anger, denial, acceptance, "ignorance" and all kinds of grayscale in between, me and my brother are now still watching from the side, trying to act when we have to, hands tied on our back - because there is nothing we can do

My dad is well advanced, so to say, from time to time not knowing where he is, where I am from, who he is or I am, and so on.
Ask my mother and they're still doing fine, it's not that bad alltogether, and you can hear the sorrow in her head and heart, yet, she still is in control of them both so they 'll just stay where they are: over an hour drive from me, slap on another half hour for my brother.
We visit them every weekend, call them every day, yet never know what to expect when we get there

If only they lived close-by

But they won't move until it's too late - had we only recognised the signs those 5-10 years ago, could we have moved them close to us, and visit them on a daily basis. And that's what this post is all about: tell you my story of the signs I missed or ignored, or both, so you don't, or won't - hopefully.
Hopefully, it will give you the chance to decrease the distance between you and your parents so that if, when, finally they need to be cared of on a weekly or even daily basis, you have the chance to do that yourself

It was 8-10 years ago, I think, when my dad started showing me where he put things: the key to the garage, hidden in one of the bushes. The key to the safe, hidden near the fuse box. Papers he kept, photos, bonds, all that.
He didn't do all that in one hour, weekend, or even month: I think it took half a year or even an entire one for him to show me "his most memorable spots". I didn't think much of it, in fact I didn't think anything of it - I thought he was being cautious and prudent, for anything might happen to them, of course: they traveled a lot, usually in Europe.
I only had the physical world in my mind - not the mental one

There were no reasons at all to worry about them: they were healthy, fit, active, as happy and cheerful as always - indeed, there was not a single reason to worry at all...

They made trips with the camper to Spain, enjoying the mild winters there, staying 3-4 months before coming back home again. In Spain, they would make trips with their bicycles, even send us an email every now and then - strong parents in their mid-70's

The emails slowed down, eventually stopped - I blamed it on the lack of use and practice. The calls remained: the second sign I missed. If you suffer from dementia, you first forget the last things (you learned).
Then, one year, we learned, after they had gotten back from Spain, that dad had taken a bad fall from the bicycle and stayed in a hospital for two weeks, while mom stayed at their residence in Spain, alone

We never got a call, and only learned it afterwards - they suckered us with "nah you would only have worried and there was nothing you could have done anyway - what would you have done, drop work, drive to Spain and hold my hand?".
The third sign, a vague one: you know that something is just very, very out of the ordinary. Yet, we tucked it away in being abroad, not speaking the language, etctera, etcetera, etcetera

The complaints about the camper increased: dad drove 90 kilometres an hour on the way to Spain (120 to 130 allowed), they took a few days or weeks to get there, never in a hurry - but the whining about trucks increased.
Stories about highway robberies increased. They stayed shorter, even skipped a year - and then decided to sell the camper.
That was the turning point: their world became radically smaller overnight

But, they still had the little cabin up north, close to the sea. They went there in the Summer, but complaints about that increased too: the local tax they had to pay, the maintenance it required (almost annual paint job required), etcetera, etcetera, etcetera.
Three years ago, they sold that too - and that pretty much ended it all, or should I say: started?

I started taking care of the finances pretty soon after that. Then, the notes started to pop up: first in the hall way, small notes of my address, telephone number, my brother's one.
Business cards of plumbers, carpenters, gardeners - sometimes identical ones at different places.
Then, I saw one with their telephone number - I thought it was for the household help (I hoped it was, I think I did know a lot better than that).
Notes showed up in the kitchen, to leave everything out and don't put it in the cabinets - we learned later that my dad just put stuff where he thought it was most apt to put...

My mom started to lock all doors at all times - burglars, she said. But we know better now. She gets in a panic when dad leaves the house, I just witnessed that last weekend: dad "escaped" before, 1-2 months before that. That's when the neigbour called me at home for the first time

We could and should have persuaded them to come live with or at least close to use at the first sign (telling me where he hid the keys, papers, all the important stuff). We should have done so, increasingly stronger, at every next sign. We should have raised hell at some point and threatened them with Lawd knows what if they hadn't moved close to us

We didn't. We can't anymore. Now we just wait for things to go bad, so we have legal grounds. Now, we lie to our parents again, just like when we were adolescents. This time, "it is for the better", we say - and I think it is. We listen to their stories, questions and answers repeat endlessly, and after a few hours of visiting them, we're exhausted. We try to go together, as it's harder to visit them all alone, not to mention how hard it is to leave them again

And yet, it's harder on my mom than it is on me and my brother - and it will get harder by the day. And we can only see them during the weekends, and we have no idea what we will see when we get there.
I wish, I wish, I wish; but I really don't, as I know it's too late. I visit them in the place that's their home, although my dad doesn't know that anymore, yet my mom still considers it to be like that.
We know that they're the last family that still lives there; all the others have moved or died, save one or two

The isolation they're in now, could have been much, much less had they had the chance to start anew at another place in time. Now, they're just that old couple living in that house. I even think that it would have "juvenated" them a bit, taking it longer for their minds to wither - I honestly don't know

My point? The goal is to have your parents close to you, or vice versa, when they "really grow old". One third will die of cancer, a quarter will die of dementia - at least here in NL, for those under the age of 90.
Both diseases will slowly progress, and keep you in insecurity for as long as they last.
Cancer is a dead give-away, but dementia can be ignored, denied, hushed, and so on, and so on, and so on

Dementia, in fact, can only be treated when it's diagnosed by the patient itself - that means recognising, in the very early stage, that it's time to move on to the next stage in life and prepare for old age, followed by death

Never an easy decision to make, but an extremely difficult and hard one to postpone, and leave up to your kids - who can't possibly make it unless they have no other choice left

2 reacties:

Joe Cardillo said...

Was struck by the phrase "we lie to our parents again, just like when we were adolescents"

That is one of the most confusing/stressful things, is the emotional "return" to childhood after having grown into a more equal relationship with my parents.

I noticed that dynamic with my mom's 4 1/2 years struggle with cancer, and it's in even more stark contrast now watching my dad's health decline. He's got Parkinsons and is starting to decline significantly, not to mention that I'm wondering if he's starting to get closer to dementia.

The notes, repetition, etc... are all there as well. There is no easy way to deal with these things, and if there's anything I'm learning it's that I will plan much more thoroughly when I grow old. Wish I lived in a culture that was better about planning for these things.

Anyways, this struck a chord, I'll pass it along, best to you in the muddle that is working through this sort of thing.

Martijn Linssen said...

Thanks Joe,

yes it is an unbelievably cruel disease. But cancer and Parkinson - wow.
One can only anticipate dementia at this moment; I'm sure I will do that

I wish you strength and endurance, and thanks for passing this along

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