Most have a basic appreciation of “caretakers”. Heck, maybe even a degree of admiration. Often people have difficulty articulating their feelings and express it by using one or another of a few clichés. The most cited is something along the line of “its the caretaker that is the most forgotten”.
Yes, this sentiment is probably true enough. Someday I’ll need to test this theory, but I suppose it doesn’t matter when it gets right down to it. Honestly, I’ve never even thought of it, no matter how many times I hear it. Quite simply, I just appreciate that you feel this way.
I only care that Ryan is not forgotten. I have more pressing concerns than being forgotten, for sure. It simply doesn’t rise to the level of, say, sleep-deprivation or chronic stress.
I can only speak for myself, but I’d bet those who share my long-term care scenario have what I simply call “Caregiver Anguish Syndrome”. It’s a bit like “survivor’s guilt” only in the sense that we are not the person fighting to persist. Unlike survivor’s guilt, however, we did not survive an experience that another was seemingly randomly taken… where it could have just as easily been us.
In fact, survivor’s guilt is less than of what I speak. It’s merely a component of caregiver’s anguish.
Perhaps the best way I can explain is through a (recent) personal example.
You see, I’m feeling guilty as hell for wanting to buy a new television. I feel this way even though the old one is temperamental… only showing the top half of the screen until I turn it off for a while to cool down… and it’s well over a decade old… and it makes the room hot as unholy hell… and the audio has an annoying background clicking.
There was a time when I wouldn’t have thought twice about replacing it. I’d have done it at least two years ago. Instead, caregiver’s guilt gave me every reason — real or not — to not allow myself to do it.
Now, you see, when I think of doing something — anything — for myself I get extremely nervous. Like I already did something I shouldn’t, despite knowing full well I went to great lengths to assure I didn’t. If I were to actually do something — and I have on occasion — the second-guessing and feeling of misgiving is overwhelming. It’s the same damned feeling as waking up the morning after going on a bender. A nervousness. Like I did something wrong or embarrassing the night before, even though I’m certain I behaved.
You understand what I’m saying, right?
For those reasons, I’m compelled to go to great lengths to try to make it “right”… when no wrong occurred.
Now, time to get a new television…
Tim Williamson says
Hello Ken I think of you, Ryan and the rest of the family often your are the best!!! Love you guys ! Tim Williamson
Vicky and David Scott says
Have been caregivers to Jonathan for 10 and a half years now. We watch our funds and understand how you might feel. We (caregivers in general) do what we do because the alternative is not an option for us. Glad you have gotten healthy and are able to get to your cabin. I am sure Ryan is forever Grateful.
Wife and daughter update?
Rhonda Morin says
Can we do a fundraiser for a new TV? 😉
Jenny Duffy says
I’d be happy to donate to get Ken a new television. Does anyone know how to set up a Go Fund Me account. If so, let us know, so we can do this.
Ken, tell us what kind you’d like to have…..and don’t be shy about it. We would like to help out in any way we can. We really care about you and yours.
Ryan's Rally LLC says
That’s very nice, but I’d rather Ryan get any donations from fundraisers.
Christine ZL says
Ken… please allow someone create a fundraiser for the TV and I guarantee there will be plenty more for Ryan. And giving to you is also giving to Ryan…
Anna Welsh says
Glad to see these recent posts! Missed hearing from you, but always thinking of you. You can’t not have a TV! It is football playoff and the start of basketball season for the Mountaineers.
We have been so lucky with the weather this fall so glad you have been able to enjoy the mountains in WV and being outside. Our property is covered with acorns and the squirrels are running around like crazy burying them for the winter. The last time we had this many acorns we had a bad winter with lots of ice and snow. Enjoy the warm and sunshine now!
I learned of your son and you when Ride To Give held a fundraiser. I will never forget Ryan whom I never met but through this page. You too will never be forgotten. I pray for y’all often. It’s great to see a post from you! I’ve missed reading about Ryan and your family.
It is so good to see posts from you again. Never worry about you or Ryan being forgotten because I will never forget you two.
Christine Marino says
It’s really good to hear from you! Hope you received my Amazon package okay. I can just imagine what you mean….once again, along with all of the other devastating factors, this is another reason this situation is so wrong, so unfair & so horrible. Ryan didn’t deserve it & you dont deserve to feel this way. You’re so deserving of whatever brings you joy! Enjoy the new TV. And, stay warm & keep your head up!
Ryan's Rally LLC says
Got it! Thank you so much!
Colleen Brunelle says
It’s so good to read your posts again. I have missed the updates on Ryan as well as hearing how you and Sue are doing. As parents ourselves, many of us could only imagine the pain and anguish you have and will probably continue to feel, but that called being a parent – a good parent. I say buy the television – Ryan enjoys watching those footballs games too!!
You and your family are never forgotten, Ken. We are so thankful to hear your voice again, even if it’s to share your anguish. We can’t imagine all the many ways you suffer and all the sacrifices you make every day as Ryan’s caregiver, but your unparalleled love and devotion to him and the rest of your family are obvious to all who follow you. We wish we could do more to help support your overwhelming needs, so please don’t hesitate to share more of those needs going forward. The fact that you torture yourself over things that most of us don’t even think twice about is heartbreaking, and so unfair. We would love to help. We love you Divineys. How is Ryan?
Julie Commons says
Ken … I need to talk to you at length sometime . My heart breaks for you , your family .. and for Ryan who was cheated his chance at an awesome life . Twenty – six plus years … caregiving for Darin … and now the ultimate decision my own parents couldn’t make has happened .. I think of you every day , I pray for you and Ryan .. don’t ever think your son will be forgotten . … Julie (Ferguson )