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Local Alzheimer’s Society has men’s support group

January 21, 2015   ·   0 Comments

When most people think of primary caregivers for the elderly and disabled, they tend to think of nurses, nursing home workers, or wives caring for their at-home husbands. More often than not, the rather large group of men who become the caregivers for spouses facing Alzheimer’s and Dementia disorders end up being overlooked.

According to statistics released by the Alzheimer’s Society of Canada, 72 percent of seniors affected by Alzheimer’s and dementia are women. That means statistically, out of the 450 clients served by the Dufferin chapter of the society, approximately 327 (if they are all married and living with their spouses still) have male counterparts acting as their caregivers.

The Alzheimer’s Society of Dufferin County runs a regular men’s support group, aimed at helping male caregivers connect with one another, and share their own struggles and stories. Last April, I had the opportunity to sit down with the group and speak with them about their experiences.

The group was friendly, comfortable with one another, and seemed, in the short period I was there, to benefit from having this safe place to come and, for a short time, be able to rest and rejuvenate themselves before returning home.

“As the disease progresses, as caregivers, we develop more and more responsibilities, and it gets to a point where your wife can’t do much at all – practically nothing – so you become a 24-hour-a-day, seven days a week provider,” explained Jim W, one of the men who attends the group. “You end up doing everything: cooking, cleaning, looking after her, getting her up in the morning and to bed at night. You have to learn things and make decisions constantly, as the disease changes without notice.”

Besides the situation that these men were facing, there was one thing that seemed a common factor amidst them. A soft sadness, a pain in their eyes, but a joy when they spoke of their loved ones. The look in their eyes is one that I would describe as bittersweet – love, hope and joy that still exist, but are tainted by the struggles and realities that this illness has brought into their lives.

“Every time your spouse loses a little piece of her life, it’s difficult – not just for yourself as her husband, but for her as well,” said one of the group members. “It doesn’t happen rapidly, but when you suddenly realize she can no longer tie her shoes, it’s another thing she can’t do that you must do for her. That’s not even considering what it does to her ego, having to now have me do these things for her.”

He added that one of the hardest things for his wife was shortly after she was first diagnosed, when she had her driver’s licence revoked.

“She hadn’t driven in a year anyway, but just having that little bit of freedom yanked from her was a big hit,” he said. “It just goes on and on; each one of these things is just another nick in the post, and when you get too many nicks, it just gets wobbly.”

Oftentimes, male caregivers struggle more than female caregivers, for a number of reasons.

The first is that, at least in most generations, the wives have usually been the primary caregiver in the family throughout their lives. While men still know how to help out around the house, cook and clean, the tasks primarily were not theirs. They must go from being taken care of, to doing the caretaking.

Especially if the disease is in it’s earlier stages, oftentimes the men are still working to provide an income for the household.

“You have to continuously think ahead so that when you encounter new situations, you’ve had some time to figure out how to react,” explained another member of the group, George.

“Though, it doesn’t seem to matter how far you’ve thought ahead; the disease is always one step ahead of you.”

Part of the reason the Alzheimer’s Society provides these groups is to help give the caregivers some relief, a place to come and relax for a short while.

“There is no relief for most of the caregivers,” explained Jennifer McCallum, First Link Coordinator, Alzheimer’s Society of Dufferin County.

“They end up caring for themselves as well as another person 24/7. They either don’t have people to come in and help them, or they are often not aware of the supports that are available.”

While many, especially in literature, might refer to the entire experience as a ‘journey through the disease’, it was noted that sometimes, the notion can seem almost offensive.

To many, a journey suggests the idea of something positive – like a grand trip, or a holiday – and there is nothing positive about Alzheimer’s and dementia. A journey usually indicates working towards a destination, whether it’s a personal one or a general one – it’s a pursuit of the end of the story.

For those facing the disease, the end of the journey is a dark one, where the persons have completely lost themselves, lost their life, and that is hardly something that someone aims to work toward.

One way to describe the illness is that it is progressive; it doesn’t make the mistake of providing an implied hope to a positive ending when there isn’t one; instead, it explains the way the disease moves forward.

“The idea that the disease is always one step ahead of where you are, is a great summation of the conditions that a couple or family has to live with,” said Jake, another member of the group. “It’s difficult in the beginning to get a handle on it, then you start to learn, and every time you do learn, there’s a new complexity that arises from it. Every time you think okay, this will hold for a while, it tends to prove not be the case.”

That factor can become incredibly difficult for the caregivers, as they are stripped of anything but taking care of their spouse as the illness worsens.

“Socially, it can be depressing, and it can become exhausting as it goes on,” said Jake. “You’re actually doing everything, and being the caregiver is a full time job. There is nothing else; your time is completely devoted to your spouse.”

Oftentimes, especially with men, it can become even more difficult as men do not socialize and tend not to reach out the way women do, which can make attending a support group frightening and challenging for a person who has never taken those steps.

But for the men that have taken that step, it seems the group is helping. It was abundantly clear, as the men shared, spoke and sometimes joked, that the group has become a place of strength for them – and that, while caring for their spouses can be tiring, they push forward, without complaint, and with total dedication to being there as their wives go through such a difficult thing.

“The happy thing about the disease – if there is something happy about it – is that often, the disease comes on very slowly,” said member Jim M. “As your spouse begins to deteriorate, you kind of fill in the spaces and start to take on more as needed. It’s not cold turkey, it’s a slow immersion. You get acclimatized.”

This Saturday, the Alzheimer Society of Dufferin County will be hosting their annual Walk for Memories, to help raise money to support the programs they offer and help raise awareness about Alzheimer’s and Dementia.

For more information on programs or the walk, or to find a list of warning signs of Alzheimer’s and dementia, you can visit the Dufferin County branch’s website at www.alzheimer.ca/en/dufferincounty.

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