ALZHEIMER’S DISEASE NOT JUST IN ELDERLY

Exploring living with dementia – B3

December 13, 2013

Have you noticed all the media coverage on dementia lately? Lots of percentages and projections thrown around, footage shot in care homes and in day facilities showing the human side of the disease, talk of a lack of a national policy concerning the rising numbers and so on.

Unfortunately, to me, I see this coverage generally giving the impression that this is a disease for the elderly. And, for the most part, this is true. But not always.

My husband has what is referred to as Early Onset Alzheimer’s Disease, characterized by diagnosis before age 65. Chuck was 60 when he was diagnosed early in 2010.

And because this is early onset, most of the programs offered to Chuck find him in a situation where all the other participants are older than he is, some of them an entire generation older.

For Chuck, this makes going to Alzheimer’s support group meetings, or going to participate in day programs run by Interior Health, something he has no interest in doing. He looks around and sees no one there he can relate to, only people he feels he has nothing in common with.

And so he chooses not to attend any of these programs, good programs, designed to benefit and support those suffering from the disease.

When I attend workshops or go to caregiver support group meetings, I am usually the only person present my age caregiving for a spouse. Anyone close to my age is there for a parent or for a beloved aunt, they are not there for their husband or wife.

This makes living and coping with this disease, for both of us, more isolating than it needs to be. It is an unfortunate complication of the early onset diagnosis.

December 17, 2013

If Alzheimer’s disease could be put on a timeline, say from zero to 10, zero being the beginning and 10 the end, a person would be well along that timeline before diagnosis could be made. This leaves a good percentage of the illness occurring before it is obvious something is not right.

I believe it is in this undiagnosed period, when nothing is suspected and then when the doubts and questions start creeping in, that many of the later possible relationship issues between sufferers and their spouses will begin.

I look back and I see my husband and I established patterns that were hard to break when the diagnosis did come. Patterns or interactions with each other related to issues such as impatience, blame and guilt, drama, and suspiciousness.

His world was shifting in ways he could not resolve and there was no one or no thing he could lay blame on but me.

I did not take it well.

Of course, now I know that many of these behaviours he was exhibiting are common in Alzheimer’s cases, but back then I did not know that. How could I? My husband was still in his mid to late 50s. Dementia had not yet raised its ugly head.

So this recent relaxing of the strain in our relationship has been welcome.

Another aspect of this disease, wait long enough and things shift. Problems go away or make room for a problem of another stripe.

For now we still have issues with each other and with our circumstances, but there is less tension, making this timeline we are travelling along a somewhat smoother ride. For now.

December 27, 2013

One of the pitfalls of having dementia is that looking at you no one would know how sick you are. So a comment I hear time and time again is how good Chuck is looking, or how well he is handling himself in the particular social situation we find ourselves in at the time.

What the people who make these comments see is a trim, tanned, well-groomed man.

A man who is still, at times, capable of being charming and witty. What they do not see are the losses that have just kept piling on.

In the past few months alone — he no longer remembers the code to our alarm system, he has to ask me our phone number, he no longer remembers the pin numbers for his credit or bank cards and it is a crapshoot whether he will get the time of day right if you ask him. It is also a crapshoot whether he can dial a phone number correctly without assistance. And he is no longer capable of making his marvellous margaritas! These are just the most recent losses.

People with dementia are also adept at marshalling their mental resources in social situations to give the appearance of normalcy. It provides the illusion that they are doing just fine.

So comments on how good Chuck is looking, perhaps made in an attempt to bolster my spirits, however well intended, fall short when the reality of the situation is staring you in the face 24/7.

The ability to rise to the occasion and my husband’s healthy countenance give an illusion of all being right when the truth is that we are far from it. Far from it indeed.