This is by default for men who find themselves in a caregiving role or think they may be at some point sooner that later. It is not definitive and certainly not inclusive; I watched my father go through this same journey at a much older age; he did an incredible job taking care of my mom, but his situation was not the same as ours.
I can recall almost ten years ago, soon after we had received the first diagnosis of what-would-become Alzheimer's, and had just recently moved to Columbia SC, that I contacted Dr. Robertson McQuilkin, (his story: "A Promise Kept", Tyndale House Publishers) and asked to meet with him; his wife Muriel had just died in his arms after 25 years of dealing with dementia. I had hoped he could give me guidance on what I might be facing. He was totally gracious (again, only several months after his wife's death) but basically told me that he would pray with me, and for me, but could not help me: "You know that if you have seen one Alzheimer's patient, you have seen one Alzheimer's patient", he said. He reminded me that every patient, every caregiver, has their own story, their own style, and their own ways of reacting to the disease. As he described Muriel's personality and behaviors over the lengthy course of her illness, it was soon evident that Karen was cut from different cloth. But even more clear was that as I heard how Robertson McQuilkin dealt with it all, I saw that I was so very much not like him. For him, it was all about Muriel; for me, it was all about me. His spiritual strength and wisdom were so much richer than mine (and that is still the case; I continue to hear about his speaking, teaching, mentoring, and joyful life), but he still had had the benefit of going through the process and experiencing the learning that comes from the day to day exposure to dementia. I know I am no Robertson McQuilkin, but maybe I am getting far enough along in the process, even if it still tends to be all about me, that perhaps there is something in all of this that others might find helpful.
Having said that, it really is all about me. Caveat emptor.
In totally random order:
- Learn to cook. It really isn't all that hard, and by my current calculations I can cook pretty a standard meal, comfort food mainly, for less than half what it would take me to buy us the same meal at a restaurant.
- Learn when to eat out. Even if it does cost twice as much, they do the dishes. And the food is usually (not always) better. Don't do it all the time as then it becomes the norm, but if you don't eat out on occasion you will go crazy. Take it from a psychiatrist; eating out is cost effective compared to psychotherapy.
- Find out now, right now, what the basic cosmetics are that your wife uses and where they are most likely to be sold. This information will almost certainly be of no value whatsoever in about six months, as I have found that all cosmetic manufacturers change names, formulations, code numbers, or basic availability of all products erratically but predictably. Expect to find the lipstick only still available at Walgreens, the makeup only at Walmart (and then not at all stores) and the highlighter relegated to ten undisclosed locations spread around the city; you will find that you are looking for them even at Home Depot, just in case. And get over having to deal with the cosmetic lady at the store who stares at you when you linger long and then purchase what you obviously aren't wearing yourself. At least not then.
- same goes for buying clothes: I am blessed to have a daughter who has known of my antipathy to shopping (women shop, men buy) and will take her mom to a store to replenish the occasional dress or blouse. This is more than just an offer to help with logistics; Karen's damaged brain has made it difficult for her to determine when colors match, and impossible for her to choose between more than two of anything, so she will tend to wear the same things persistently and fight trying something new. I hide things that I think she has used too often; she finds them.
- even if daughter buys clothes, there are those other things that just keep coming up that need more immediate attention. Suffice it to say that there are more size options (numbers, letters, combinations of both, and clever names) for ladies undergarments than there are ladies of those random sizes. And exactly why there is a need for fifty three options of "feminine products" is not clear to me. Razor or Nair? Sheer or opaque? You will need to know these things.
- Learn to deal with the exasperation of answering the same question or giving the same explanation five, ten, twenty times in a row. Note I do not disclose how to deal with it, I just am saying you will need to learn to.
- Do not watch "The Notebook" movie more than once. "Groundhog Day" may merit a repeat now and then.
- Start looking for places and possibilities for "respite care"; somehow I always thought the "respite" was for the patient; not so. The catch-22 is that when respite care is unarguably (by anyone) needed then it also would signal that there has been marked deterioration in clinical functioning. The grey zone (my definition) is when you can still provide the care yourself but simply find that you are going crazy in doing so (this is one of those places where I have found some distinct differences between myself and Dr. McQuilkin). I can recall the many nights and weekends when I would be on call in my practice; they were exhausting, even if nobody called. Just having to be available, keeping track of what might happen even if it hasn't or won't happen, is draining; you are now on call pretty much all the time.
- Learn what "neurogenic bladder" is and therefore learn to immediately know where every restroom in every public place in a one mile radius of wherever you are might be located. And get used to being stared at by Walmart security as you hang outside the entrance to the women's restroom multiple times in one visit.
There will be more: certainly there are now and will be more situations that will be experienced; the ones that I find that may be somewhat generalized and therefore of interest to other men in a similar situation, I will try to record and report.
This post has not included any obvious spiritual component; while I am totally aware that nothing that is happening to Karen, to us, is outside of God's awareness and permission, I still long for the specific scriptural passage that would have incontrovertible application to my immediate problem. Scripture, it seems, was written before we invented the labels for the various forms of dementia.
Nevertheless, it is comforting to read that "...we do not have a high priest who cannot sympathize with our weaknesses..." (Heb 4:15) who also "...arose and went out and departed to a lonely place..." (Mark 1:35) as he was inundated by confrontation with the enormous needs and afflictions of others. He, too, was on call in ways that I cannot fathom, and on occasion needed to just be alone to be able to talk to his dad. I am humbled; he was on call for the world. And he gave his life for those under his care. Before time was even created, only because of his marvelous grace, he chose to do that for even someone such as I...
As I said, it is all about me....
Barney
- Learn what "neurogenic bladder" is and therefore learn to immediately know where every restroom in every public place in a one mile radius of wherever you are might be located. And get used to being stared at by Walmart security as you hang outside the entrance to the women's restroom multiple times in one visit.
There will be more: certainly there are now and will be more situations that will be experienced; the ones that I find that may be somewhat generalized and therefore of interest to other men in a similar situation, I will try to record and report.
This post has not included any obvious spiritual component; while I am totally aware that nothing that is happening to Karen, to us, is outside of God's awareness and permission, I still long for the specific scriptural passage that would have incontrovertible application to my immediate problem. Scripture, it seems, was written before we invented the labels for the various forms of dementia.
Nevertheless, it is comforting to read that "...we do not have a high priest who cannot sympathize with our weaknesses..." (Heb 4:15) who also "...arose and went out and departed to a lonely place..." (Mark 1:35) as he was inundated by confrontation with the enormous needs and afflictions of others. He, too, was on call in ways that I cannot fathom, and on occasion needed to just be alone to be able to talk to his dad. I am humbled; he was on call for the world. And he gave his life for those under his care. Before time was even created, only because of his marvelous grace, he chose to do that for even someone such as I...
As I said, it is all about me....
Barney
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