It’s ok to Laugh and a Bottle of Wine
It All Began with a Bottle of Wine
By Kiki and Michael Foster as transcribed by Katie Sutcliffe Becker
You might be surprised to learn that in the United States, there are more than 5 million people living with age-related dementias (more than 47.5 million worldwide). This number is likely to rise with our aging population as one in six women and one in ten men who live past age 55 are expected to develop dementia. The main reason this number can be surprising is that in some ways it is the elephant in the room: lots of folks (like close to 50 million) are out there suffering in silence, but we would rather make polite conversation about the details of our salaries and pledges than discuss our struggles with loved ones suffering from dementia. So when Michael Foster was diagnosed with dementia, he and Kiki decided to do something radical: talk about it. This article is the result of one such conversation. You know that cliché: joy shared is joy doubled, suffering shared is suffering halved? It turns out it is true, if we talk about dementia, we can help each other, and Michael and Kiki are leading us into that conversation.
From Michael’s perspective, as is the case with so many good stories, this one began with a bottle of wine. In March 2018 he was shopping at the HEB and needed to pick up a bottle of wine for dinner. He found one at an especially good price: $7.99/bottle, so he grabbed two and headed for the cash register. He was surprised when his total came to about $40.00. What he had seen as $7.99 was in fact $17.99/bottle. He had not seen the initial “1.” After an examination (that disclosed nothing wrong), his eye doctor suggested that Michael go see his primary care doctor and get an MRI. Although Michael’s primary care doctor was skeptical, she ordered the MRI. Two days after it was done, she reported that it disclosed both brain shrinkage and two other spots that could indicate dementia. Apparently, a common symptom of the early stages of dementia is the inability to see 1s at the beginning or the end of a sequence of numbers. Also, when there is trouble seeing that cannot be tied to a problem with the eye or a stroke, it also almost always suggests dementia.
From Kiki’s perspective, there were earlier signs, but they were subtle changes, and as it tends to go with unpleasant possibilities, it is easier to attribute them to other things, or decide to deal with it later, or just escape into denial. In 2016, Michael had hip replacement surgery. After the surgery, Kiki started to notice that even with the physical therapy, Michael was not returning to his pre-surgical level of activity, and his thinking stayed cloudier. He became more prone to forget names, appointments, or simply draw a blank in conversation. But because the changes were subtle and pretty easily attributable to recovery from the surgery, Kiki decided that it was something to discuss with their primary care doctor at some point, but there was no sense of urgency or need to make a special appointment.
Although the process of realizing that something was changing was different for Michael and Kiki, both agreed that once the diagnosis was in hand, simply by naming it, it was no longer such a fearful thing, and was easier to accept. It was confirmation of what she had previously suspected but had admittedly lacked to courage to confront without a diagnosis.
The wait time to see a neurologist was so long that Kiki began calling weekly to check for cancellations. Her persistence paid off, and in early September they were able to begin meeting with a new team of doctors at UT Health. Their initial appointment with the neurologist lasted for three hours and resulted in follow-up tests, including a nuclear scan. A nuclear scan is much more pleasant than the name might suggest. After the injection was made, Michael and Kiki went for a walk and had lunch, then came back, Michael was rolled into a machine lying down, covered in hot towels, and work up 30 minutes later. The result of the follow-up testing was a specific diagnosis of Lewy Body B (which is one type of age-related dementia, the most well-known being Alzheimer’s) and prescription (i) for a few new pills, (ii) to keep living life, not the diagnosis, and (iii) to get back to weaving as soon as possible.
Fortunately, Kiki and Michael received the diagnosis fairly early in the process and were willing and able to make changes to their lifestyle. Since receiving the diagnosis, they have had an estate sale of everything that would not fit into the new apartment at the independent senior living community to which they will be moving. Kiki now provides all medical updates to a family member who then distributes it to their children, so that their children can feel free to discuss it amongst themselves. They have both joined support groups, read books, and gone to lectures to try to learn as much as possible about what lies ahead. But in addition to preparing themselves and their families, they wanted to share their experience, to begin a conversation, and the make the resources that they have discovered more widely known and available. To that end, these are a few of the discoveries that they have made so far on this journey that they thought might be helpful to others:
· Humor helps. Humor helps a lot. When Michael goes to the store for three things and forgets two of them, they laugh it off.
· Communication is a learning curve. For the person suffering from dementia, he is not just being difficult or hard-headed, he sees reality differently. So don’t argue with it. You are not going to win, and you are not going to make your relationship better. Let it go and discuss it at a better time. Speaking of which…
· Figure out which times of day are “better,” and change your schedule accordingly. Michael does much better in the mornings, so if there is something that needs to be discussed, they try to have that conversation in the mornings. Michael requires more sleep, including naps, so they plan less for each day than they used to.
· Start the conversation now. No one reading this article is getting any younger, and no one reading this has parents or other relatives who are getting younger. Even before they had the diagnosis in hand, Kiki and Michael had discussed the need to move, the need to get more help around the house, the need to downsize. So then when they received the diagnosis the groundwork had been laid. Some decisions are easier to make without the emotional strain of a diagnosis. Start the conversation now, keep having it often.
· Downsizing might be easier than you expect. Both Michael and Kiki used to be collectors, but they also found it very freeing to pass along their collections to those who can actually use and enjoy them now that their own needs and interests have changed. There are services available who will come in and handle every aspect of an estate sale. All you have to do is go stay at a hotel, then come back three days later to pick up your check. Michael and Kiki now own 6 place settings, a few chairs, a table, and a reduced-in-size bedroom set. Kiki said it has been the most freeing experience of her life and there is not a single thing that was sold that she misses.
· Anticipate and accept a variety of reactions. This type of diagnosis is new terrain for everyone involved. Michael and Kiki have discovered that family members and friends can respond with: outright denial, well-intended bossing around, not-so-useful suggestions, sadness, anger, confusion, inappropriate questions, changed plans, changed behavior, love, support, concern, and many more emotions and actions than could fit in a single article. It’s all ok, because…. See the first bullet point, any reaction can be met with humor. And humor helps a lot.
When I asked Michael if he had a single piece of advice for anyone facing this type of diagnosis he said: “Suck it up kid and enjoy life.” And he and Kiki are both doing just that.
Do you have an experience with dementia that you would be willing to share? If you would like to continue the conversation, please send your articles to firstname.lastname@example.org.