Author:  Jerry Schill

This is the fifth article I have written about our ten-year journey with dementia/Alzheimer’s. If you have missed the others, I suggest you look for them beginning with December as it makes more sense to read the history in a somewhat chronological fashion.

Last month I covered the shopping experience and the difficulty in dealing with dementia while remaining “jolly” in the Christmas season.

This month’s article involves that of care-giving. I am Pam’s primary caregiver, but at times I rely on family, friends, or paid caregivers when I need to shop, work or just need a break. It’s made a little more challenging in my case as I’m still working, which requires trips to Raleigh when the General Assembly is in session and also meetings at various locations. In the past, Pam could accompany me as I attended those meetings but it’s almost impossible to do so now.

It has been about 6 years since we have depended upon a paid caregiver. She is not a health professional but is a person who genuinely wants to help. She typically is here 18 to 20 hours per week. When she has medical issues, I have a challenge scheduling someone else. A few years ago, when my job required my presence in Raleigh Tuesday through Thursday, the caregiver stayed overnight for 2 nights. That was a difficult period for all of us. Two years ago, I hired a caregiver in the Raleigh area to stay with Pam during the day. I had our camper near Raleigh so the caregiver would come at 7:00am and stayed with Pam in the camper till I returned about 3:00 or so. That worked out very well, but we only did that for a year.

When medical issues come up with the caregiver, it can be quite a challenge to find someone to fill because others have prior commitments. Of course, there are many companies that specialize in this area but are more costly. There is also the issue of them being unfamiliar to Pam.

So that brings up family and friends as caregivers. How do I discuss the subject of incontinence with dignity? And how does it relate to the topic of caregivers?

Let me start with our children helping out staying with their Mom while I do “whatever.” If it was just about “babysitting” or just making sure she doesn’t grab the car keys and take off or wander off somewhere or helping with a meal, well that’s easy. But when it starts with their Mom not remembering their name or even who they are, that can be traumatic for adult children.

There comes a point in this journey when one realizes that it just makes life easier to wear “Depends” 24/7. Until you get to that point life can be a crap shoot. (Pun intended). But even then, that’s a lot to expect from your young’uns to change their Mom’s diaper! We have 4 children, and they all help as much as they can. They all have families and jobs but try to be here every weekend on a rotating basis.

It is also a lot to ask of friends and neighbors, so at this stage I try to limit those requests for relative short segments.  It changes the whole dynamic of who you call to help out.

The incontinence issue is twofold: First, some folks are pansies and can’t deal with getting their hands dirty. Quite frankly, growing up on a farm, this is hard for me to understand. Second, and probably more important, is the dignity aspect of cleaning up. It’s a very humbling experience for the caregiver and the loved one. I think it’s even harder for my wife because she knows having someone else helping you in the bathroom isn’t the way it’s supposed to be. She frequently tells me that she loves me when I’m helping, because “she knows.” I hate it when she’s not happy. I can take her occasional anger and name-calling, but the crying and the sadness is tough.

Bottom line for me is this: Pam is my wife, and I am her primary caregiver. It is my responsibility, indeed my privilege to do so. If at all possible, I want to make sure her needs are met. I am rather good at doing it, but pray that I can do so with more patience at times.

And finally, the cost. I’m still working, so the costs associated with caregiving are higher because of it. Generally speaking, half of my pay goes toward the costs of caregiving. If it wasn’t for our kids and volunteers to help out, having a job wouldn’t make sense from a financial standpoint.

Till next month…