Caregiving: Tougher than Tough

So there is this AARP ad featuring Danny Trejo, where in the theme is that care givers are tougher than tough. Being I was the solo care-giver of my late wife for a decade plus, I can relate to that in a huge way. In looking back over that time frame…

There were medical procedures I’d take on solo that would require 3-5 nurses from Mayo clinic to accomplish. Now if it was a once a month thing, travel to the clinic was workable, but if it was every week type of thing, it meant doing so at home… and of course there is no way insurance is going to cover sending an entire team of nurses to ones home. Thus, it was necessary to figure ways to do things solo, even if a given procedure took a whole lot more time.

Physically, doing bed to gurney transfers, and loading an unloading an ambulance gurney solo even after being up for 20 hours was a common thing… but doing so was not without peril. Generally every month or so, I’d end up straining muscles, not unlike doing 1 rep max weight lift lifting in my younger days. Alas, unlike weight lifting where you take a day of rest, medical need often precluded me from doing so. The key of course is trying to maintain perfect form… but such is not always possible which opens the door to trouble.

And when trouble comes, then what? Lots of folks will say, hey if you ever need anything… and then when you do, once in a blue moon, it works out just fine. But what do you do when it comes to long term chronic illness? Its really easy to burn out friends, relatives, and neighbors in this sort of thing. On the other hand, at times things are just not physically possible working solo. Granted, in an emergency situation, its pretty amazing how helpful a couple police officers and 2-3 EMTs can be.

And then there was the fatigue aspect. I’ve done many a 72 hour marathon session while writing code and hacking hardware to make a trade show deadline, but unlike post trade show where you can crash for a few days… after 36 hours of care-giving without sleep, maybe you can capture 4 hours, and then the cycle repeats. Its made more challenging as such goes on year after year relentlessly. Caregiving is often times really exhausting.

Another aspect to caregiving is dealing with “the helpful people”. The folks whose beliefs are sickness is the result of sin, and that if you only quit sinning you would be perfectly healed. The folks who think medical protocols are gods and that if you don’t follow THEIR protocol to a T, they will blame you, even if said protocol is clearly contraindicated. The social workers who sell a great deal with words, only to find out its merely snake oil when the rubber meets the road. The caregiving orgs who preach how great respite care is, despite the fact there are no funds to pay for it and/or any number of hurdles preventing such. The super helpful folks who step in with the result that their ineptness brings about injury… Over the long haul, its necessary to develop the skills to both be on the look out for, and also how to redirect said “helpful people”.

The key in this is discernment, as caregiving help is truly needed and was appreciated, it just needs to be the right kind of help, and available at the right time.

Mental toughness is part of this too. I remember talking to my late wife’s priest about it, and his parting words kept me going when everything else was falling apart. His “You are a tough guy, you can do this”, I replayed that phrase over and over in my mind when the chips were down. Another phrase I picked up from a WWII POW was to internally repeat something along the line of “suck it up, you can make it through”. Obviously, prayer played a huge role in this too, but i was leery of trying to fit scriptures like Phil 4:13 into the mix. Ie, its all easy to misapply proof texts, and should they fail, which is pretty likely being misapplied… it won’t be good. Bottom line, I didn’t need to complicate things with a spiritual crisis by my own stupidity, my focus had to be on the needs of my wife.

By the same token, many scriptures did apply and were exceedingly helpful.

Philippians 4:4-7 was a huge one… Rejoice in the Lord always; again I will say, rejoice! Let your gentle spirit be known to all men. The Lord is [c]near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all [d]comprehension, will guard your hearts and your minds in Christ Jesus.

Living this out is not easy, but its also a pretty awesome thing when you get to see the feedback of such over and over and over!!!

Proverbs 3:5 was another one… Trust in the Lord with all your heart
And do not lean on your own understanding.

For most of us, ones own understanding falls far short when it comes to care giving. The challenge is having to dig for it… to sort out the old wives tales, to parse the sciences out of the medical protocols, to find the rebels in medicine and truly get unbiased opinions, rather than the party line. Sadly, far too much medical advice has a financial or other incentives at its core, rather than the actual needs of the patient.

I’d often read or hear of folks saying what a blessing care giving was and I’d end up grumbling silently. The thing is, in the midst of the fog and molasses of chronic sleep deprivation, the cycles of overworked muscles and pain, the emotional, and financial stresses, I’d be thinking, and exactly what planet are you on?

Granted, if an individual is very wealthy, or has incredible insurance coverage, and/or has massive caregiving assistance from family members, etc I can understand where they are coming from. In other situations, a given caregiver may lack the physical strength / stamina to continue caregiving, thus leading to nursing home time where in they may continue to participate in care, but its no longer 24/7 year after year. Granted, each situation is different, so if someone feels they are blessed in the midst of caregiving, it truly is a wonderful thing.

I remember a social worker early on warning about one of the aspects of care giving, in that the husband/wife roles can morph into a patient/caregiver set, unless one brings a lot of others into the mix. I could see the logic in that… until of course one finds out how little insurance provides for, that insurance resource caps are scary things, and that there is a multiyear waiting list for govt grants / waivers, and that’s only if they don’t run out before you get there. I’d could also rant on the reuse of single use medical devices, being that’s all insurance would authorize, despite the infection control issues… so I bought a lot of things without insurance, and others well, I bugged folks at Mayo to figure out the best way to balance sterilization vs device longevity.

Alas you roll with the cards at hand… albeit my late wife and I joked about me putting on the nurses hat when I would have to do painful procedures. Its cool to look back on her last voice mail to me, where in she says, I love you, but I don’t like you very much today in the midst of laughing… being aware of the painful procedure we had taken on that morning. (Yes, we shared a gallows based sense of humor)

So in retrospect, yes care giving is a blessing, but this may not be apparent in the middle of it for all folks. In other cases, perhaps it never will be, and I’d never judge another person if they come to that conclusion, knowing how tough it can truly be.

I wrote the following to a caregiver under going difficult challenges some months back…

In the midst of the care giving fog and molasses, the memories of the good times tend to get pretty muddy, if even there at all. I also concur things can be get to be pretty brutal as a sole caregiver… and it never ends, it seems the plate just keeps getting more and more added to it. I thought I was at my limit in 2007 being just a few years after she got paralyzed, little knowing t hat I’d be doing 3-4x more as things were coming to the end. Fortunately, being younger than my late wife, I had the physical stamina and endurance to continue to be her caretaker as her health declined. Had we been closer in age, I don’t think it would have been possible.

 

That being said, as the care giving fog got replaced with grief fog when she passed, which then continues to clear, the good memories of my late wife became clear… and even some of the now tragedies we ran up against end up being somewhat positive. And while it sucked that maybe my late wife would have perhaps a few good hours out of every month, those hours are ones I now treasure…. but at the time they occurred, they were so immersed in care giving fog, I would rarely see them for the gifts they were. Granted, the really sucky stuff is still in memory too…

I hope this can help a bit, albeit each care giving scenario is different.

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