Caregiving for MCI / Alzheimer’s with Early Onset : OldGuy’s first steps

We are still here, more than ten years after diagnosis! Needs and roles have changed over that decade, and are still evolving. Are there any specific things learned, practical approaches, or generalizations to share, for home caregiving, that aren’t just ordinary cliches?

I’ll let a poem, “Matter of Fact,” deal with the initial emotional impact of being there when a spouse is told about her own Minimal Cognitive Impairment / Alzheimer’s / Dementia [click on the link, it’s only 21 lines, published in Neurology].

Being from cancer medicine, with all its innovative advances, it’s hard for OldGuy to believe that over the last decade we are still no closer than the single agent Aduhelm to fixing Alzheimer’s or other dementias.  The clinical trials show that subjects still seemed to get worse, albeit more slowly, with the drug.

BTW, to me, decreasing amyloid burden in the brain seems analogous to giving a child chelation for lead poisoning.  The procedure will remove a good percentage  of the toxic lead, but many times the irreversible damage is done.  If environmental changes aren’t made, the toxicity can recur.  To be fair,  one recognizes that monoclonals, which can neutralize harmful mediators in folks with inflammatory diseases, might be a more hopeful model.

Using Kubler-Ross ideas (some now say that it’s not the best construct of grief, but it was a revelation at the time), the poem linked above might be about a heavy denial,  but it might also be about some acceptance.  Whether the CareGivingOldGuy has acceptance or not, things gotta get done.

So first, the OldGuy would say that home caregivers have to get into a self-learning mode. While the primary problems, solutions and  underlying conditions don’t seem to have changed much, folks keep inventing new classifications and vocabulary to talk about it.  “People Living With Dementia” and “Care Partners” are more commonly used terms now.

One of the more specific helpful  things OldGuy learned is how Alzheimer’s manifests itself and changes over time. Everyone’s different, so the timelines haven’t been accurate for us, but there does seem to be a reliable trajectory to the worsening of daily activities.  It’s useful to know what needs might crop up next.

We acted on that knowledge about the timeline.  Early on, we traveled a lot, went to sporting events, and with no pet experience, we got a Havanese puppy to be a companion of sorts (all were her ideas).

Travel became incrementally more difficult with time, maybe more quickly than expected. OldGuy will spare the stories of trying to help a person in a tight airplane lavatory, or those damn detestable airports in SoCal and NJ without companion restrooms (~5 years ago).

We didn’t go all in with travel back then for practical and financial reasons.  We did do more than ever, but the later trips weren’t always comfortable or notably satisfying.  And having a “memorable moment” developed a different, nuanced meaning.

So OldGuy isn’t gonna recommend any specific book or blog about exploiting the early stages of dementia to get things done together.  Most advice is more full of personal narrative than realistic plans or solutions; one sees it even with this blog, which is self-conscious about getting personal.

So second, it will be helpful to develop being more flexible and adaptable.  Any “empathy muscle” gained in one’s professional career is gonna get stretched in new dimensions.  This was a challenge for OldGuy sometimes, who was more natural as an irritable curmudgeon. Empathy Yoga, anyone?

At the same time, it’s important to recognize one’s own limits, and when to find help to get something done. Of course, dealing with help can be a bother for an OldGuy.

There will be a lot of “judgment calls,” at a time when two-way communication and answers about preferences might be lacking.  It may feel weird to be responsible for unfamiliar details (like crazy sizes in women’s clothing, or what to wear when, or which social niceties are usually routine).

What others call “resources” never seem to directly solve the problems in front of you, and DIY YouTube videos aren’t great for the big dilemma of when to intervene. It’s also rare to come across nitty-gritty details, so OldGuy has tried to write about some, without getting too graphic.

Just putting in an outdoor ramp for walking safety, before any wheelchair was needed, and putting in bathroom railings were unpleasant experiences for my wife, who didn’t want to be reminded of her own safety needs.  Of course, OldGuy has a long experience of doing things that are annoying.

Third, this OldGuy needs some organization or structure to get things done, so the simple act of writing down concrete problems and possible solutions, and who can do them, has been essential.

It’s “…just about that action, boss…” (quote from former Seahawk Marshawn Lynch.) Still in football mode: “Bend but don’t break;” you’d better bend your old knees so your back won’t break, you’ll need your own body to keep going for a bit.  Those are the first few cliches. One more: “control what you can,” because, frankly, there’s a lot that happens one cannot control at all.

“Honeydew / Honey Do” lists are common, so the act of making a list doesn’t seem novel.  But the new column for me was to think about the emotional impact and implications of doing a thing, with little or no feedback.  OldGuy blogged about differences from the Golden Rule, and using “substituted decisions”.

SAFETY is a first priority.  Any cynical old guy,  used to working in healthcare institutions. might think their #1 item is LIABILITY, but HA! not at home.  Practical safety issues after the diagnosis: should the stove be disconnected?  The gas fireplace?  Child gates for stairs, both up and down, but will they block adults?

She wasn’t going to work anymore, but OldGuy was; did she need in-home supervision?  Initially, the “cognitive impairment” thing seemed more or less like getting a “C” on a written essay or advanced algebra exam, not so bad, really.  Except she had an AP placement out of calculus for college, and she aced exams.

She lost her desire for driving, so we had already given her car to family.  She was never really the dinner chef, so she didn’t really want to cook.  And she loved to laugh with daytime talk shows back in the day, which helped occupy many afternoons.

There may be some tech ideas for monitoring  wandering, surveillance cameras, etc. but the bulk of practical safety is low tech and do-able (some ideas are chronicled in older posts here).

But the essence of caregiving is to provide for quality living, at the same time being aware of prevention for safety.  OldGuy didn’t find a “resource” about it, or get any guidance (that  OldGuy remembers) from her healthcare team, probably didn’t look hard enough, but stumbled upon some partial solutions…

OldGuy found out about home caregiver agencies….although vetting, then trying them, and orienting each new caregiver, etc was a tedious chore, blogged about as “Strangers in the House!”  After a while, we had a small cadre of terrific home caregivers, but it didn’t last as long as we would have wanted.

There is an adult day program in the neighborhood, which provided another partial solution.  She seemed to really enjoy the company and the recreational therapy programs, until she didn’t,  over a year later, and her needs, more or less predicted by the trajectory, exceeded the program’s limits.  So we’ve muddled on…

[Next posting will be something about “second steps”… although the dream might be to escape and fly away, like the two soaring birds in the image above, we are still tied down to the gravity of the situation]