I’m fading away — growing smaller and more distant to many people I know and love, and who I also know love and appreciate me. I wish that weren’t the case, but I see no end in sight. I’m not sure I’ll disappear altogether, but I know I’m getting smaller in the eyes of some, and others no longer see me at all.
I am becoming less communicative.
It’s my hope that anyone reading this and who might be affected by my withdrawing from socialization will take these words at face value — will recognize my sincerity.
In the last few years of being a caregiver for my mother, I’ve learned that the more truths I share about my mom’s cognitive decline, no matter how true they are, the worse I sound as a person. So I hope that in writing this, I will not be perceived as saying negative things about my mom. Rather, this is an explanation — an expression as to why I’ve been withdrawing from so many relationships.
My mom lives in a state of cognitive and physical decline. There are no cures for, and few treatments, for these. She’s simply aging and wearing out. This will only get worse. Of course that’s not her fault, and she’s not doing anything wrong. Through it all, my mother has been brave, strong, and dignified. And in her quietest moments, when she’s able to see it clearly, she is aware.
As her caregiver, it’s my primary job to act as a buffer between the realities of life, and the departures from reality which form her mind. Or as I often frame it…
Dementia isn’t forgetting things that actually happened. It’s remembering things that never happened at all.
Unfortunately, caregiver is a full-time job and doesn’t pay too well. The only reward is the job itself. Caregiving isn’t just about helping her find her cellphone or the TV remote control 10 times per day, though things like that do take up a portion of each day. Caregiving, for the most part, is about listening, processing, and subsequently negotiating.
Though caregiving might be about listening to the same story 4 times in one day, it might also be on agreeing that Moon Pies are a vegetable and therefore adequate for dinner.
Caregiving, above all other things, is about safety, hygiene, health, and entertainment. Mostly it’s about entertainment. Not that being a caregiver is akin to being an entertainer, but more like being a cruise director. I keep the entertainment flowing — always looking for activities to occupy her mind and keep her stimulated.
When I’m unnable to do that, I often become the entertainment and make a lot of bad jokes. I’m not very funny.
That said, I still have to make a living to sustain myself, and that also takes up a great deal of my day. It’s in navigating between those two jobs — between caregiver and business person, where I find myself shrinking away from and becoming more distant from my friendships and human relationships.
Of those who I correspond with from a distance, I’ve realized in recent years that I’m rarely the one who initiates contact. When I get phone-calls or emails from friends checking in on me, I always ask myself why I am not the one who is checking in on them. I hate that about me.
When I get invited to an event, an activity, or a social gathering with friends, I know before the invitation is fully extended, that I won’t be attending. Still, people keep inviting me to do things and I appreciate that. Unfortunately, it’s just not a part of the plan right now.
So for a guy who’s been very social and very outgoing for much of my adult life, I’m beginning to fade for some, and disappear entirely for others. I wish this weren’t the case, but it’s my reality.
Someday, my mother won’t be with me. When that time comes, I’m certain I’ll look back feeling as though I did everything wrong on her behalf. That’s what being Jewish is like. And at some point thereafter, opportunities to be social will hopefully come my way again. We shall see.
This is what I think about when I ride…
This Week By The Numbers…
Bikes ridden: 5
178 miles
8,200’ climbing
15.6 mph avg
10,500 calories
Whether you ride a bike or not, thank you for taking the time to ride along with me today. If you haven’t already, please scroll up and subscribe. If you like what you read, give it a like and a share. If not, just keep scrollin’. Oh, and there is this from The Rainmakers. Enjoy…
The Spoke And Word™ 
I have nothing to make it better. It is part of life for many and can’t be understood unless you are going through it.
That being said…I have learned that when you get the chance to be with others no matter what the form…the time and laughs spent are sweeter.
Hang in there. No one out here is going anywhere.
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Thank you, Judy, as always. I know you go through it too, and on different levels. Thank god for those who understand…
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Roy! You are doing an amazing job as a son and caretaker for your mother! I was nowhere as involved with my mother’s decline as my Dad was able to manage it all, but the many times I was at their home while she was struggling gave me a very painful glimpse of what it was like for my Dad.
Stay strong and keep riding those bikes, one pedal turn after another. There will be better times in your life ahead.
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Thanks, Doc. I’m not sure I’m doing an amazing job, but I’m trying hard. Or as I tell her each day, it’s a good thing we don’t have any stairs so I have no way to push you down them. I’m certain she knows I’m kidding. I Think she knows…
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Betwixt between. And with the grand grace of a fine putter master. Thank you Roy. Thoughts and care walk with. Knowing the rich and focused care given. The jokes… told with that same care. Funny or not, told with care.
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Thank you, Bill. I know on the loss of your father you’re doing a bit of reflecting on your own.
Grace and putter — between and betwix. Even the unfunny can be funny when the need is there.
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Oh Roy, this is a hard time of life for both of you. I went through these changes with both parents about a decade ago and it was so exhausting. One hour at a time. And when it is over there is a weird void in your life that causes you to rethink every decision you made on their behalf. Try not to go there now or later. The best you can do is more than good enough. I’m sending supportive energy to you and healing hugs to both. Mine died four days apart and it was not the relief I expected but devastating. But at that point all the irritating things fade and good memories surface.
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Thank you, Ruth! Hugs received, love received, and hugs and love both given back. Thank you so much!
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She may not know everything and she may not be able to express herself in all ways logical, but I have no doubt your mother knows you love her. And that you are doing the best that you can.
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Thank you, Heidi. There are these moments — these quiet, lucid moments, usually early in the day, when she’ll look up at me, look down again just a little bit humbly, and look up again and say…
“Thank you for all that you’re doing, son. You have no idea how much I appreciate it…“
Are used quotation marks because those are the exact words that she uses each time she says it.
In those moments and with those words, I know that even if it’s just for an instant, she knows what I’m doing on her behalf. I hope I can remember those moments years from now, but I probably won’t. I’ll probably remember all the things I did wrong, because I’m Jewish and such like that…
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I know you are doing a wonderful job with your mom because I was there for a short period and marveled at you love and dedication to her. Don’t sell yourself short..you are an amazing person! We all have good days and bad days..Relish, savor and enjoy the good ones. You helped me through a tough period recently and I am forever grateful. I think about you daily and wish you nothing but the very best. Stay strong and keep the pedals moving forward!
Peace and happiness
Betsy
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Thank you, Betsy, very much. You helped me through a rough time also, and I’m probably alive because of it. And I thank you for your kind words. Unfortunately things did not work out the way I hoped when you were staying here, but I’m grateful that we had a chance to reconnect for a while.
And I know you know this, if you need anything, I’ll be there!
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I will never know how you feel,however I understand your balancing actions. This morning 7/1019 I drove by your studio/home to do a quick visual. Saw your client’s Jaguar parked,knowing to allow you your space and respect the work you do. Most importantly respect the TLC you provide to your Mother. We have that unspoken agreement,but I say it again,and again. You Always have a place with us,I Always have an Open door Policy with You,Mother Willie,Stroodle,and Misha,and Cohen Friends and Famlly. We are here for you my Brother. Know You have Me, Susan, Cabulagan Family and All your Friends surrounding you with Love and Support !!!
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Love it, Brother…! Thank you! Sorry I missed you this morning. Yeah, with the Jag is in the driveway you don’t want to barge in. She’s mean as a snake…
Thanks for all your support recently, now more than ever!
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Roy, I know we do not speak often but you are still a dear friend. Knowing you are out there gives me solace
My job takes me into many memory care facilities. I see first hand how Dementia robs people of their lives. Bridget’s grandmother was a prime example. The dark humor that comes from being in the environment is one of the great coping mechanisms we have
Those who are the care givers are Saints, whether they are family or pros.
Be well St Roy
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Thank you, Cliff. As always, I appreciate your input and more so, I appreciate your taking the time.
Dark humor is truly my best friend right now. Very often, when I tell my clients that my mother is in the next room with a tennis ball stuck in her mouth and her head wrapped in duct tape…
Oh, never mind I’ve said too much…
I love you, truly!
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