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Joan Sutton

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Despite the Alzheimer's, I Consider Us Lucky

Posted: 10/23/2012 3:26 pm

There may be saints among us, but I am not one of them.

One does not usually associate the words lucky and Alzheimer's disease. But within the world of almost six million North American families struggling with the emotional and financial costs of this terrible disease, I am lucky in many ways.

Lucky, in that although my husband can get irritated, he has not exhibited the rage that is sometimes reported. Lucky, in that I don't have to juggle caregiving with a job. Lucky, in that he still recognizes me. Lucky, in that there are resources that permit me to keep him at home with some part-time help -- although it is frightening how fast one runs through those resources! And above all, lucky in that I come to this role from a great marriage, rich with good memories that are a great source of strength.

What, I wonder, would one do if the marriage wasn't good? What if your partner had been abusive, or betrayed you? Where then would you find the grace and generosity of spirit to take on duty? Even with my strong feelings for my husband, I sometimes find myself wondering how long this can go on -- if I didn't still care about him, if we didn't share a foundation of love and laughter, where would I find the patience? If there are saints among the caregivers, the partners who rise to this are surely candidates.

I am also lucky in that by the time Alzheimer's claimed my husband, he was an elder statesman. While one has to regret that his last years on earth are spent in this manner, there is some comfort in knowing that he lived a full life, on his own terms, with nothing left on what Hollywood calls " the bucket list." And I, too, am at an age where, as lonely as it is, I am not sacrificing anything.

I've lived a good, happy, and productive life. I love, and I am loved. This is just another chapter. But, if we had known -- and oh, who knew what a big word "if" could be -- if we had been given advance notice of the disease, we might have taken one last trip, visiting old friends, and old haunts, retracing our own footsteps, consciously celebrating the time we had shared together. But, wishing for that is simply greed, what we had was more than enough.

So I think of the other families, where Alzheimer's has claimed someone still in the midst of life, perhaps before they had reached their potential, before there was time to create some financial stability, let alone forge a memory bank like ours. How do those partners come to terms with such a cruel fate? If there are saints among the caregivers, they can be found here. And what of those where there are absolutely no private financial resources? How do they cope? It is beyond imagining.

And what of the children, asked to take care of their parents? Drafted in mid-life into the role because he or she is an only child, or the one who is geographically the closest, or the only one who doesn't have a job, or the one everyone always looks to? This calls for putting one's life on hold, often for years. This timing of AD causes additional pain in all directions -- no parent would knowingly ask that of their child. I certainly would not want my son or daughter to have their lives interrupted for this. And while it might be ennobling in some way, it is still life, interrupted.

As if that isn't enough, what if there are unresolved issues between parent and child? To be asked to care for a parent whom one does not like, or one who is perceived to have judged us, treated us, unfairly? Abused us, emotionally or physically? Can we care for someone if we don't care about them? These are the very real side affects of Alzheimer's -- reaching out in endless circles to cut off lives beyond those of the patients.

I ask a lot of questions, for which I have no answers. Perhaps some of you do.

What I do know is that we all share in the knowledge that I underlined in an earlier blog -- Alzheimer's is a disease of the brain that is paid for with the currency of the heart.

 
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12:01 PM on 10/24/2012
Joan
I just wanted you to know that I think many people like myself look forward to and read your blog.
I don't ever leave a comment, but this time I am because I think what you're doing is a service to all of us going through the Alzheimer's journey in whatever capacity.
Thank you!
07:25 PM on 10/24/2012
Please don't hesitate to make a comment, as that is helpful, not only to me, but to other readers. And as I truly believe that all of us have slightly different experiences, someone else's perspective may be the one that truly helps. I would like to think that this could become a real forum. j
08:17 AM on 10/24/2012
You are a lovely writer but what I hate about this illness in particular is all the pretense. I would much rather have cancer at least people feel sorry for you, you get more visitors and the palliative care is much better. It's also the only disease that it is almost inevitable that you will get if you live too long, the rate doubles for every five years after 65 and yet routine cognitive testing is not done in the doctor's offices. They leave it up to you to figure out that you have a problem and by then it's too late to take that one last trip. No other illness is dismissed like that. It really is a disease of denial even by the medical community.

People married to someone with Alzheimer's will often never make any plans for when they themselves get it - it's what happened to my neighbour and she is leaving a hell of a mess for her kids now because of it - no power of attorney, thinks she will get her driver's licence back - complete denial.
07:57 PM on 10/24/2012
you have obviously had a bad medical experience. Today, most family doctors in urban areas can, and do, recognize the early stages of AD through cognitive tests and rule out other possible causes through an MRI. And, now there is a pet scan available in the US that picks up amalyoid plaques. Until now, that could only be done in an autopsy. Unfortunately, once diagnosed, there is still no treatment that will change the course of the disease, let alone bring about a cure. Enormous strides are being made --in understanding, acceptance, research.What we have learned about the brain, since the 1980s is amazing. As to your neighbor's wife, being a caregiver can be so totally absorbing that he or she does not pay attention to his/her own situation. As to the possibility that she may also have some cognitive loss - denial, covering up, is very common in AD patients - its part of the disease. Which of us would want to admit that we were "losing it"? I urge you to persuade your neighbour's children to look up the local branch of the Alzheimer's Association, and ask for their assistance. Like all of us, she should have a living will, health care proxy, and make arrangements for a power of attorney. Perhaps there is someone close the family who could mediate. As to choosing which disease is the easiest - all I can say is no matter what, old age is definitely NOT for sissies. jss
01:46 AM on 10/24/2012
Being a caregiver to my mother, who had and died of AD, completed the circle of caring and was a gift in that it allowed me to give back to her some of what she had given me in time and love. I am not grateful for the disease, but grateful for her humour and acceptance, grateful in that she showed me how to age, and die with grace, grateful for the time with her, whatever her condition.
09:23 AM on 10/24/2012
Thank you for sharing that with us. I am sure that it will reassure parents, like me, who worry about the possibility that their children may have to take on this burden.
05:58 PM on 10/23/2012
A beautiful piece. I'm one of those adult children you mention who had a less-than-perfect relationship with their parent growing up, but is now called upon to take on the role of caregiver. Mom was an active alcoholic until I was 14 (when she bravely put herself into treatment), and when I started being her caregiver 7 years ago (at home and in a variety of dementia care facilities), I had to deal with lots of baggage, to be sure. The good news is that caregiving has brought us closer, and old wounds have healed.
---Martha Stettinius, author, "Inside the Dementia Epidemic: A Daughter's Memoir"
07:45 PM on 10/23/2012
I am so glad to hear that those wounds have healed......I admire you, very much. Your mother is a lucky woman. jss
10:35 PM on 10/23/2012
Thank you, Joan.