Author:\u00a0 Jerry Schill<\/p>\n
This is the fifth article I have written about our ten-year journey with dementia\/Alzheimer\u2019s. 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.<\/p>\n
Last month I covered the shopping experience and the difficulty in dealing with dementia while remaining \u201cjolly\u201d in the Christmas season.<\/p>\n
This month\u2019s article involves that of care-giving. I am Pam\u2019s 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\u2019s made a little more challenging in my case as I\u2019m 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\u2019s almost impossible to do so now.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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?<\/p>\n
Let me start with our children helping out staying with their Mom while I do \u201cwhatever.\u201d If it was just about \u201cbabysitting\u201d or just making sure she doesn\u2019t grab the car keys and take off or wander off somewhere or helping with a meal, well that\u2019s easy. But when it starts with their Mom not remembering their name or even who they are, that can be traumatic for adult children.<\/p>\n
There comes a point in this journey when one realizes that it just makes life easier to wear \u201cDepends\u201d 24\/7. Until you get to that point life can be a crap shoot. (Pun intended). But even then, that\u2019s a lot to expect from your young\u2019uns to change their Mom\u2019s 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.<\/p>\n
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. \u00a0It changes the whole dynamic of who you call to help out.<\/p>\n
The incontinence issue is twofold: First, some folks are pansies and can\u2019t 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\u2019s a very humbling experience for the caregiver and the loved one. I think it\u2019s even harder for my wife because she knows having someone else helping you in the bathroom isn\u2019t the way it\u2019s supposed to be. She frequently tells me that she loves me when I\u2019m helping, because \u201cshe knows.\u201d I hate it when she\u2019s not happy. I can take her occasional anger and name-calling, but the crying and the sadness is tough.<\/p>\n
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.<\/p>\n
And finally, the cost. I\u2019m 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\u2019t for our kids and volunteers to help out, having a job wouldn\u2019t make sense from a financial standpoint.<\/p>\n
Till next month\u2026<\/p>\n","protected":false},"excerpt":{"rendered":"
Author:\u00a0 Jerry Schill This is the fifth article I have written about our ten-year journey with dementia\/Alzheimer\u2019s. If you have missed the others, I suggest you look for them beginning with December as it makes more sense to read the … Continue reading