Growing old gracefully...

How many of us in our youthful exuberance of dating, getting engaged, being a newlywed, told our spouse that we looked forward to our mutual journey of “growing old gracefully.” Unfortunately, and as a counselor to many senior citizens, I can attest that the journey is not always graceful --- but it can be filled with grace.

Many of the readers of this newsletter have expressed their appreciation for the inclusion of personal notes from time to time (for example, the Jimmy Buffet issue or the Mardi Gras issue). With that tacit approval in mind, allow me to share some of my personal journey of growing old not always gracefully.

I am the caretaker for my wife, Jane, who needs a wheelchair to get around, is in the middle stages of Alzheimer’s, and is incontinent. These are some random thoughts of our journey from mere forgetfulness to a serious deterioration of memory.

It always helps to start from the beginning but with a disease like Alzheimer’s there is no remarkable beginning point. A patient becomes less organized, starts misplacing things, has trouble making decisions, (or worse yet, makes troublesome and argumentative decisions), becomes more forgetful. In time the family seeks medical intervention, and, at some point, a definitive diagnosis is made. For Jane this confirmation came with a spinal tap and analysis of the fluid in her spine that had passed through her brain.

But I am getting ahead of myself and need to go back to close to what was the beginning.  But even before that let me address why I share this. I attend a caretaker support group and whenever a person attends for the first time, usually with a spouse who is just showing some signs of dementia, it is apparent that they are searching for the answer that we all wanted at the beginning: What can I expect? How long is this path?

Jane’s recorded history of mental issues started with a mild seizure in 2014 but hints of some lack of mental acuity occurred in the work setting well before that. Another mild seizure and emergency room visit in 2015, obvious short term memory loss in 2016, another seizure and emergency room visit in 2017 and a memory test in 2017 with a diagnosis of mild cognitive impairment. Over the next two years, Jane became increasingly anxious, which interfered with further memory testing and led to a recommendation for cognitive behavioral therapy. The therapist was most concerned with Jane’s lack of self-esteem (e.g., thinking she no longer had the ability to drive) but her effort was abandoned when it became apparent that Jane could not remember what was discussed from one week to the next.

She had another memory test in 2020 and was thereafter referred to a psychiatrist at the Hopkin’s Memory unit and shortly thereafter started the usual medical regimen for memory patients.

The spinal tap confirming the Alzheimer's diagnosis was in early 2021, but we were more concerned with anxiety and periods of depression. As she said then, “I start trying to think but I can’t draw any answers.” I observed at the time that her short-term memory was gone and we were in the period of repetitive questions.

In the background were increasing concerns with arthritis. By 2021, she started falling and seeing an orthopedist about her knees.  She went from walking only with my support to a wheelchair over the course of the next couple of years. Somewhere along the way she tried a walker but that didn’t last long. Stairs were an obstacle and the ramp to the house was installed.

Also playing out in the background was loss of bladder control. It started out with feelings of urgency (that led to a speeding ticket for me) and eventually to no sense of a need to urinate. Now when she says she needs to go to the bathroom, she probably already has.

So, all the pieces have been in place for the past couple of years: sketchy memory, little ability to engage in any kind of meaningful conversation, confined to wheelchair except for very short steps, incontinence.  In 2022 I somehow got connected to a researcher who did a phone interview with the impact this had on me.  Here is what I said at that time in a follow up letter:

I enjoyed your interview earlier this week and I appreciate the opportunity to supplement my remarks since Zoom seemed to have timed us out. As I had mentioned, I give little regard to my self-care in my role as a caretaker but after the conversation I paid more attention to my emotions and would like to share that with you. However, I need to put that in some context. 

My wife, Jane, had a career as a management consultant with clients across the globe but because she is so bright, her doctors say that she is very adept at camouflaging her lack of memory.  To meet her you would not know she had Alzheimer’s; it is a cliché to say that one cannot remember what they had for breakfast but often she cannot remember if she even had breakfast. Worse than the Alzheimer’s is the anxiety that never abates and the reason that she hardly ever leaves my side. If I go to work, she is with me; if I visit a client’s home, she is with me; if I want to exercise, she is with me. And if she is in one place too long, she gets bored and the anxiety is exacerbated so I fluctuate my work between office and home office but at the expense of some productive time.
 
With my time so scripted I feel guilty if I sit for a moment in the evening to read the paper or watch something on TV. Between trips to doctors and the back and forth from home to office to home, I need to do some work at night; thus the guilt feeling if I don’t.
 
The other emotion that I recognize is profound sadness, especially when Jane says she has no reason to live or that she contemplates suicide.  Periods of optimism are no better. She often talks about what she will do when she gets better; there is no getting better and it breaks my heart when she talks like that.  I can only look forward to the caretaking becoming more difficult in some respects but perhaps easier when she no longer has the intellect to imagine a brighter but unattainable future.
 
You asked what improved self-care might look like. Part of that would include the opportunity to share some of this with another but that I am not comfortable discussing this in Jane’s presence and she is almost always present as you know from my prior conversation with you. Writing this note is the most comprehensive and coherent statement that I have made on the subject and I will share it with family members so that they too are aware of the extent to which this disease has taken hold of Jane.
 
Weep with me, oh family members, as I am weeping now.

Since writing that letter, the immobility and the incontinence have come more to the forefront of daily challenges. I now have help every weekday morning and will extend that to at least one Saturday morning a month so I can get back to bike riding. Other than an early morning walk, maybe a swim on Sunday, and doing the crossword puzzle after putting Jane to bed, all of my time is either caretaking or work.

So, what is the point? The point is that my situation is not unique. It happens in many families and it helps to know that might come your way and it helps to plan: by getting good medical advice at the first signs of cognitive decline, building a support group of family and friends, learning what resources are available, and knowing and planning for the inevitable cost in time and money for both the patient and you, the caretaker. And look for words of wisdom to console you. I took to heart the advice of Carolyn Hax. [See her newsletter from the Washington Post] In her daily advice column, she once responded to a caretaker of an Alzheimer's patient:

As long as your husband still has moments of clarity, then those moments can be peer conversations. And love and laughter. Remember to step back from your care role and let him be him. Remembering who he was and noticing who he is.
 
If those moments stop happening altogether, then I think your best bet is to welcome it as a new immersive phase of duty, a sacred one. Caring for a loved one whose capacities for engagement are essentially gone is so hard, but it is pure freaking love – nothing in it for you but the act of care and knowing you showed up. If you can sit and hold hands, well, then you sit and hold hands.
 
I took these words to heart. Sometimes when I lift Jane out of her wheelchair, she needs a second or so to gain her footing. In that moment I draw her closer to me and we hug. She hugs me, I hug her and the rest of the world disappears. And then for the umpteenth time I pull down a Depends full of urine and help her to the toilet. And when my impatience has not gotten the better of me, I do so with tender care and grace. It is, after all, my sacred duty.

Sometimes, all you can do is hold hands and remember!

~John F. Robbert