Early onset Alzheimer’s / dementia was why my wife stopped working about eight years ago. Things changed slowly at first. As issues cropped up in her needs and abilities, we’ve had to adapt, more often recently. A useful guideline has been the various descriptions of expected changes (click link).
So here are our top ten accomplishments over the last three years:
1. Using caregiver agencies but still training for specifics
We learned the hard way that good caregivers come and go, and so do the agencies who employ them! When our first agency folded, we had to deal with three others (and found another four less suitable). Not all are a good fit, and their assessments take time. After they choose someone who can come, it takes time to orient and train the new person to our particulars, then monitor and trust them; again, not all are a good fit. Ironically, since we need far less than 24/7 coverage, those shifts are actually harder to cover. Still, we’ve come across some great ones!
2. Learning personal care products (disposables)
As certain abilities changed, I had to go to various stores to figure out absorbing bed /chair pads, adult underwear options, flushable wipes, and skin protective creams. I never noticed before that drugstores, discount stores and even large grocery stores carry those products. Of course, as a pediatrician and father I was familiar with a lot of products, just on the tiny end of the size scale. It was all trial and error. We now rotate three different brands of disposable underwear to prevent chafing, use zinc oxide and other ointments at night, and buy wipes by the box.
3. Paperwork /Finances /Medicare
Even though my wife signed her Power of Atty (POA) documents soon after she stopped working, using the documents when she could no longer sign things was a tedious and lengthy process. It took us over six months to transfer assets out of a traditional financial firm. Changing the beneficiaries on my own retirement assets needed my wife’s signature; they accepted my explanations and the POA eventually, but it took months. For one transaction, someone would only accept an original; all I had were copies, so that became another barrier. When she became eligible for Medicare early because of disability, I didn’t pay attention to details and screwed that up, but at least they let me fix it a month later.
4. End of Life considerations
The paperwork for healthcare includes a POA for Healthcare and an Advanced Directives statement about end-of-life choices (in our state). After two trips to the hospital via ambulance, I now keep copies of those things, along with some medical information, in a red folder by the door. The end-of-life / advanced directives that we had each signed over ten years ago seemed progressive then, but now seem vague and not very useful. During a hospitalization, we had to consider resuscitation directives and the POLST form . We respected the forms she had signed, but I changed my own advanced directives with newer forms (click here for new forms).
5. Ramps, rails, chair lift decision, car decision
Because of what I thought might be a confidence issue in walking, most noticeable on steps, or on flat surfaces that changed color (concrete to asphalt, or in a yellow crosswalk), I had an exterior rail and ramp installed to the front door which seemed to help immediately. I also had handrails installed in the bathrooms. They also got immediate use. Because our bedroom was upstairs, and stair climbing was getting tedious, we had an estimate for a chair lift to get installed. After a medical episode, things changed before installation, and we moved to a first floor bedroom. We were able to get an eventual refund. When my own car reached its limit, we got one that would accommodate a wheelchair more easily.
6. Bathroom adaptations
We did some stuff DIY (as documented in other posts here). One of the biggest helps was getting a shower/commode chair. Her Medicare supplemental plan had a vendor that didn’t have the right kind of chair; we ordered one online from a drugstore company, and got eventual partial reimbursement. The other revelations to me were the use of a shower head on a hose, and pump dispensing body wash and shampoo, which is more convenient than bar soap and conventional shampoo.
7. Dealing with therapy, learning behavioral approaches
My wife had been on prescription medications for several years, but was having more problems just taking them. We tried all the pediatric tricks: crushing pills, mixing them with pudding or ice cream, trying different formulations: elixirs, suspensions, etc. When new symptoms appeared, new medications were prescribed, and new side effects were encountered. Over time we actually pared down her medication list. Along the way, she’s had home physical and occupational therapy attempts, too. Perhaps the most useful has been our experience with an ABA Therapist, who usually does home therapy with kids on the autism spectrum (more in a coming post!) My own behavior and attitude have changed, trying to respect and understand my wife’s perspective; it’s still a work in progress.
8. Keeping up family traditions and holidays
I list this as an accomplishment because it doesn’t come easily to me! It was our family tradition that my wife just did it all, y’know? I’m not sure what I did, but I do know that I was there, behind the camera and snapping pictures (we have crates full of prints and negatives to prove it). Anyway, I think it’s been important for all of us to continue the routines and rhythms of life. Luckily family and friends help keep us on track.
9. Communications
I was never a fan of social media, and in fact my former employer banned us from indulging because of privacy issues. So I rely on good ol’ email and text messages. I list this as an accomplishment because this partially feels like a duty, but it’s not a burden. The other part of communication is the creation of this blog, and the research oriented blog AlzheimerGadfly.net .
10. Quiet time (Niksen?)
I learned to take some quiet time for myself and take ten deep breaths, based on a few popular books. I try to make each one deeper. I’m not sure that this is meditation, or that it even helps, but it feels like an accomplishment just to take the time! Amazing how many times my mind wanders on to some tangent, right around about breath six. Oh yeah, somewhere in there, I try to do the “gratefulness” thing, and the “three positives” thing, and then get on with it! Just encountered a NYT article about a time to “do nothing” that the Dutch call “niksen”…
