I’m sorry to all you subscribers for disappearing so quickly. Something happened that took up a great deal of my attention. My dear wife was diagnosed with dementia, and I instinctively chose to immediately withdraw from most leisure activities to concentrate on her care. For those of you who may believe in divine providence (as I do), I was able to spot the symptoms because of my previous experience as a dementia caregiver.
Over the past couple of years, I had noticed a decline in Mary’s cognitive abilities. They all seemed to be related to short-term memory and/or subtle conceptualization. I might have missed the signs, but we’re talking about an exceptionally smart and accomplished woman. To have her turn into a “regular” sweet old lady isn’t something most would even notice. Her level of normal conversation isn’t affected much yet. She can drive and dress herself. She brushes her teeth and bathes by herself.
However, she was also in charge of paying monthly bills, because I was still working. Things began to go unpaid. We started getting calls and mail from creditors. She would apologize profusely, but it kept happening with increasing frequency, and it was completely out of character. She’s super-responsible by both nature and habit. She just plain forgot what had been paid, and what had not.
Unopened junk mail began accumulating, covering every available space on counters, tables and desks. I saw this exact symptom with her aunt, who is now in skilled nursing care for Alzheimer’s. Sometimes dementia runs in families. She was unable to sort out what was important from what could/should be thrown away. This is an indication of a loss in logic capabilities.
Then she began having a hard time finding the words she wished to say. Not the complex terms most of us might need a minute to recall (calibration, recidivism, impingement) but simple words like “remote” and “leash”.
There was an increased tendency to misplace her keys, purse or wallet. Until we were able to establish enough behavior modification (you always put “this thing” in the same spot upon entering the house, or getting in the car – NO EXCEPTIONS) these disappearances zoomed up to about 20 times per day.
By this time, I gave notice at the Urgent Care where I worked. We had appointments with neurologists, and she performed a complete battery of clinical tests which indicated a loss of approximately 30 IQ points. Her original doctor was impressed. Most dementia patients do not get spotted at an early stage. The earlier a diagnosis is established, the more effective the drugs are at slowing the process of decline. She was prescribed Aricept. She didn’t experience uncomfortable side effects adjusting to it, and it has cleared up some of the “fog”, though I know the drug is usually only effective for a few years. There are other drugs used at later stages.
Mary has had occasional depression while coming to terms with her condition, but it’s important to keep the patient engaged in the tasks that help manage their own care. So we do that. I have a history of emotional dissociation (a PTSD legacy) that helped me become a good medical assistant and tech, so I’m not as sad about this as some of our friends think I should be. I’m used to re-framing things in favor of the positives, and I am always, always fascinated to study disease processes. It’s a coping mechanism, but also a way of seeing things others can’t appreciate.
Unlike cancer, heart disease, and other things people die from, dementia doesn’t physically hurt. It’s more of an existential loss, an irreversible simplification of the adult personality. It returns the patient to their own childhood and infant self, until it causes death when the brain stops managing body functions. Mary has unrelated spinal pain issues, and that’s her focus most mornings. She’s cranky and distracted until her maintenance painkillers kick in. The rest of the time she’s pleasant and compassionate, though we do have many of the same conversations several times a day.
Because we caught this so early, Mary may take a decade or more to get to the point of 24-hour care. She’s 70 now, so other issues of decline or disease might overtake this. Or researchers might develop more effective treatments. I’m a good scientist. I’m not assuming much of anything. We work on this one day at a time, and observe what goes on, making smart choices as needed.
I waited for about a year to reveal this publicly, until she was comfortable with my doing it. One thing about me that is unusual is the fact that I definitely do NOT consider this a great tragedy, as most people seem to. We all have to die of something. All machines eventually wear out beyond repair. All that is material must pass. It could be a lot worse. I’ve SEEN a lot worse.
We still live in a community surrounded by great natural beauty, with neighbors and friends we love and have fun with. We’ve got a terrific, super-smart dog (who flunked out of the service training because he doesn’t like to share his toys). I’ve got arthritis in my hands, but it’s still manageable. We’ve got enough money to cover our medical costs so far. Life’s still well worth the effort. I’m enjoying whatever can be enjoyed.
I do apologize for having to keep my online readers in the dark though. Patient confidentiality is an old habit I was trained for.
18 responses to “Why I Stopped Blogging”
Thank you Mikey. Have similar situation. My wife managed medications and vitamins and lost track resulting in thyroid deficit causing further serious disorientation. Resuming all her vitamins and medications made that loss, thankfully, temporary.
You’re welcome, Ghoh. Routine helps, that’s true. I’m glad you noticed your wife’s confusion. Mine never experienced that particular problem, only because she already had a longstanding habit of writing down each time she took meds in a little notebook by the telephone. It was established in medium-level memory. It’s only brand-new data she can’t retain. That kind of info must be repeated and repeated until it graduates past short-term memory.
Attitude is all in these situations. Both she and you will benefit from what seems like your wonderful attitude about it all. Best to you both in this holiday season.
Thanks. Merry Christmas to you and yours as well. Yeah, I’m pretty pragmatic about some things that are inevitable. I could agonize about it, but it’s going to go on anyway, no matter what my attitude is. Might as well strap in for some scientific and medical adventure. We both try to be open and honest to people we meet about her condition. Most folks are quite charitable in response.
Hi Michael – I have not really mentioned this to anyone since you both told me last year. I feel for both you and Mary. This is not easy. Since you told me, I am now often analyzing myself – difficulty spelling, remembering names… My own mother is now 92 and definitely slowing down – needs a walker, or a cane. Has someone help with the laundry. We are having Xmas at her house (with the fixings from Whole Foods). She tires easily so we won’t be spending all day there.
You and Mary are going boldly where the rest of us Boomers are heading. The secret to aging well, is to not be isolated. So glad that you are both active in a really wonderful church community. Aging is not for the cowardly.
Have a wonderful Christmas!
Thanks for reading, and for your friendship, Susie. You don’t need to take any special effort to keep this situation confidential, if it comes up in conversation.
My mom has problems that make her physically frail too. She did crack me up when she complained, “Everything was just fine until I turned 85!” It wasn’t until after she said it, that she got the joke herself.
Love and light to you and Mary. I’ve thought about you. Thanks for the communication…although you don’t “owe” us an explanation. Maybe it’s a new journey for you to write about and take us through the journey with you when you have time. I’m sure your perspective and insight will be valuable.
I’m happy to have finally gotten around to it, Debbie. One ought to keep pals in the loop, even if we are all just “pen pals”. Besides the need for her permission, I needed some time to be able to explain things more simply and directly.
I might write about it in future, if I gain some fresh insights. Hard to say. Because I spend more time and effort now specifically focused on understanding her condition, and engineering new workarounds, it’s emotionally rewarding whenever we do manage to create useful adaptations to her changing limitations. You know all about that, about exploring and defining new boundaries to our mental capabilities.
It’s also not the only new area of focus in my life. Because it has become painful to play traditional instruments, I’ve been exploring playing music using alternative controllers which don’t require as much physical effort. I just got a set of these:
I have been wondering about your departure from writing for some time and concerned about what it might mean. I truly respect your silence on behalf of her privacy and know you will take this journey with both intellectual discovery and your native compassion. Do remember, despite your remarkable attitude, to reach out for support and love as you need it.
Thank you, Deb. I shall try.
Sorry to hear of your circumstances, thank you for sharing. My mum had dementia also, I can relate to what your going through. Stay strong and God Bless you both.
You’re welcome, and thanks for the blessing.
I of course know you are not blogging and I do not expect or want a reply, because you have your very special patient to take care of.
Just to let you know that you are both in my thoughts and I hope that after Mary’s regular cranky morning starts, that you make the most of each and every day. You can not count of Mary remembering in future years, so you have this day, hour and moment to make happiness in the little things.
Stay strong. Hugs and regards, …Kiwi 🙂
I just wanted to say thanks for this post and the positive, realistic message it sends. My husband had a brain injury a few years back and though he is now ‘normal’, he is not the same as he once was. But we are both getting older too, so I often say to him that we will be just fine, because we are in this together. The strengths of two more than make up for the disabilities of two.
I remember you, Margy. Thanks for dropping by.
You bring up an important point. None of us seniors are the same as we once were. But there are significant compensations in understanding and compassion skills available in return for the losses. Quality of life becomes more dependent upon our ability to adapt to the changes. We innovate if possible, but also gain practice in accepting changes we can’t control.
I am better able to celebrate small victories and progresses these days. I used to be much more hampered, even controlled by an unhealthy level of perfectionism. I’ve gained a more realistic perspective, and it has helped my stress management. I have more gratitude for all we are going through, and it happened as easily as if it had dropped like manna from the sky. So much past striving to gain wisdom, but at last I understand we can’t force the timeline of when we will be ready for insights and epiphanies. They come when they come.
Dear Invisible Mikey,
I remember your very perceptive and encouraging comments on my blog post just after the British Brexit referendum three years ago. I’m still writing a lot about the whole thing as it now comes down to the wire, and I wondered some more about who you are. So I looked up your address as it appeared in your reply.
I’ve now read about the dramatic changes in your personal life that have caused you to stop blogging. Just let me say I feel very sad for what you and Mary are going through together, and I can only hope it in some way works out for the better rather than the worse – if such terms are even appropriate here.
Anyway, best wishes to you both, from right across the world.
Kevin (that’s my real name)
I understand your choice and deeply respect your enforcement of that boundary.
at the same time , after some months have passed that I know have been hard for both you…i just cannot go away with not knowing what may happen in the struggle toward the living light.
I wrote this in 2016. Now it’s late 2022. Life’s not that hard. We’re both still here, still living, and we have enough money to fix problems when they arise.
I cry more easily, which I consider significant personal progress.
Mary’s a simpler version of her previous self. As long as we maintain routines to reinforce familiar activities, her life is basically normal to any outside observers. She loves gardening when she’s feeling well. We live in a county where the median age is 59, so we are surrounded by sympathetic neighbors who are having similar experiences to ours.
We are both going through health challenges very common to seniors, like advancing arthritis, and having to take more kinds of medications to manage discomforts, increasing atherosclerosis and our asthma.
At this point in life I have no serious complaints. We have to hire people to help us keep the house clean from time to time. I fully expect to need care assistance for Mary at some future date, but things are fine right now.
I believe that entropy in advancing age ought to be accepted as normal. One can’t avoid the void.