In the first years after Ralph was diagnosed with MCI, I rushed to record all the nuances of his condition and my reactions. Lately not so much. The nuances have become…well repetitive: Ralph’s moments of clarity and confusion, my moments of impatience and remorse, his conversational loops, my problem-solving to work around his lapses. Intellectually I know there has been a slow deterioration but after six years, I don’t notice so much. My life is what it is. Even the last 18 months in a Covid world have made a minimal impact. The routine we inhabit reduces the impact of Ralph’s limitations.
But a new wrinkle has cropped up:
Now that vaccinations have arrived, so have visitors. I’ve been worrying for months that the new house was too big for us, but it is suddenly the perfect size for the influx of friends and family members who love that’s we’re only a block and a half a block from the streetcar line. Our guest room has been booked for weeks and will be until mid June. I already have “reservations” for the fall.
I suddenly have company for eating, shopping and hanging out, even for watching TV, all the activities in which Ralph is reluctant to participate.
The issue I have to figure out is how to incorporate Ralph. How much to push him to engage, how much to let him be. So far the visitors have been folks who know him know him well and have known him both before and since his diagnosis so Ralph has been comfortable.
Most recently my oldest friend—we met in preschool—and her husband stayed for five days. While we have seen each other for brief visits (and I have visited them solo quite often), we last spent this much concentrated time together barely a month after Ralph received his initial diagnosis of MCI when we met for a vacation in Savannah. Back then Ralph was still very much himself in most ways. The only symptom was his tendency to repeat himself, so although our friends knew about the diagnosis they barely noticed any change. That is until he had a panic attack; the husband was alone with Ralph at the time and clearly shaken when Ralph became frantic to find me. His newly prescribed meds, including an anti-anxiety pill, had not yet kicked in and he was petrified and slightly disoriented.
This visit, there were no anxiety attacks. There was a moment at dinner the first night when Ralph did start to fixate on how long the waiter was taking to bring his drink and my anxiety rose because I sensed a loop starting to take shape. But the beer arrived and Ralph settled down before our friends seemed to notice. Ralph was charming and chatty the rest of the evening. “
He’s better than I expected,” my friend’s husband said with obvious relief, a relief I shared.
The next few days we ate together as a foursome some of the time, and other times Ralph opted to stay in his chair with the dogs at his feet while I took our friends to explore the city. Ralph appeared to enjoy the company although each morning I had to remind him we had guests in the house and who they were.
At one point as we were driving somewhere as a foursome, women in front, men in back, Ralph joked that the wives would some day be sticking the husbands in facilities once they were “out of it and incontinent.” Everyone laughed as if such a possibility was unimaginable. But I can imagine all too well.
By the fourth day of being around Ralph, my friend commented on how hard caring for Ralph day in and day out must be. I appreciated her awareness even as I bristled with a certain defensiveness. “Oh it’s not that bad. I’m used to it.”
And I am used to Ralph as he is now, even comfortable with it as long as we’re just the two of us. But as I reconnect with the world outside our front gate, I find myself less and less comfortable. My challenge is now to find a way to give Ralph the comfortable security he needs while keeping myself invigorated and challenged.
Alice in Memoryland 
Oh, Alice, I am so glad that you have friends visiting now! My husband was diagnosed with MCI only four months ago, and specifically with Lewy Body dementia (still at MCI stage) only three weeks ago. Your honest blog is such a help to me. I also entered this with an imperfect marriage. My husband’s OCD made having houseguests so stressful during our marriage that I eventually gave up. He is also a firm non-joiner and never was helpful when I tried to build social networks that included him (though I stubbornly built my own). I am not naturally an extrovert and did fairly well working from home and staying in touch with close friends by phone and computer during COVID. The MCI situation developed during COVID, so we have only coped with it during my working from home period. Now it’s a whole new world, and I am both excited to visit and be visited and physically go to work at least part-time and…really worried about how I will manage my husband’s anxiety about my absence. Or if I can. Or if I will have to retire at 62, years before I intended to. And how I can get my suddenly passive husband out to see his brothers and friends this summer while he can still enjoy it. I would never have guessed that I would long for just a little of his didactic bossy behavior to reappear or have him announce yet again that he was going up north to visit a pal instead of finishing a project. That is really rather funny.
LikeLiked by 1 person
Wow. You really sound so much like me. I know what a difficult situation you are in, both in caring for your husband and in finding the right life balance for yourself. Thanks for writing.
LikeLike
In contrast, my husband and I have decided to downsize to a smaller home in a gated community. We both have health issues and having less to take care of seems best at this time of our lives. Notwithstanding, our home has two levels and the stairs are increasingly difficult to climb.
LikeLiked by 1 person
I think you are wise. I did downsize in getting rid of the farm and its headaches, but choosing the house I did was definitely counter-intuitive and a bit illogical, as every visit from the HVAC repairman reminds me. But in my heart I wasn’t ready to downsize more. Choosing what will make you most comfortable is what is most important. Including stairs.
LikeLiked by 1 person
I listened to many people about moving options, and if we had a child and grandchildren to move near, I can imagine moving as Alice did. In the end, I am staying in our current country home on 20 acres, but prepping everything. I was afraid of the old Ford tractor, so I bought an adorable Kubota “tractorette” that I confidently mow and snowblow with from a supportive local dealership. I am moving through a list of improvements that will both make our lives easier in the coming years and make the house more saleable if we do need to move. While the diagnosis is recent, I’ve known something like this was gradually happening for a long time, so I have had time to think. For the next couple of years, my husband is likely to enjoy driving his old Ford tractor around and puttering around the property. I can’t imagine how I could keep him occupied without the property. My garden and my nature trails keep me sane and fit. At this point, I would feel a second terrible loss if we moved to town. I’m only a half-hour from the large university town where I work, so we have civilized amenities (when they reopen). And I may change my mind – one thing I’ve learned in the past ten years (which includes two eldercare situations) is not to plan too far ahead – situations change so unexpectedly!
For now, my window is open, the birds are singing, and some wild turkeys are strolling through the yard. Life is fine right here.
LikeLiked by 1 person
So glad to hear this. You might go through my archives to find Ralph’s adventures with the tractor. It was a large part of his identity. Even now he talks about returning to the farm to get it and his “tools,” which sat unused for the last few years. You are so right about how planning too far ahead doesn’t always work. Take care. Your example is inspiring me.
LikeLike