It’s been a year since starting this blog. The first diagnosis of MCI (Mild Cognitive Impairment) was three and a half years ago, and six months after that the tests were consistent with early Alzheimer disease. So these past 3 years have been a very slow and gradual increase in memory problems and cognitive changes which have affected both our lives enormously. Two summers ago J gave up driving and her car. This was quite a change for us since now we had to coordinate everything carefully so that I could get her to things she used to drive herself to, without conflicting with things I needed to drive myself to. The face-saving explanation she offers is that we are saving a lot of money by not maintaining two vehicles (true!).
There’s been a very gradual ceding of household management to me, so that not only do I handle the schedule & the driving, but house maintenance, cleaning and repairs; making and getting to our medical appointments, maintaining and administering medicine for J, car maintenance & repair, food shopping, meal planning and most cooking, planning entertainment and recreation, organizing social interactions, managing finances & paying bills, setting up and getting J to respite group, and keeping an eye on clothing – choices, laundry, dry cleaning, mending, shopping – all the normal stuff that people do to run a household.
And while taking on these tasks and responsibilities, I work to acknowledge J’s sensitivities about her difficulties – it’s a constant effort to minimize my contribution when she is feeling like she is doing too little, for instance. She does not ever engage in dialogue with me about it. She only occasionally makes a passing remark such as “Oh, my short term memory is shot!” – but this is definitely not an invitation to discuss the difficulty or what would be helpful to her. The few times I tried to engage with her this way she either said, “What memory loss?”, or became so angry with me it was frightening.
So, we have achieved some balance with the condition that she doesn’t want to know exists.
But, as I write out how things are now, I see both how well we’re managing – how much we still have going for us, and how lucky we are to be otherwise healthy, safe, in a good home and with reasonable resources & great family and friends – and also how things are getting incrementally heavier and slower, as the years have gone by.
The title of this blog, Dependence Day, is invoking the time of year that this blog got started, and the plain fact that we are now in a much more tightly-knit bond, or a closely choreographed dance, where both our lives are exceedingly entwined with each other’s. It’s not a bit optional now.
And there is a new mantra for this year : Accept – Relax – Adapt. I say this to myself many times a day now, to help counteract my own tendency to deny and to tense up in response to the stressors of each day. It helps.
Summer activities this year are much closer to home, for the most part. J’s energy is predictably less than in other years, and her tendency to get confused about what’s going on is greater. We did not hold the July 4th family party at our house, for instance, but rather reserved the back room at our favorite restaurant with a great view of the river, and people met us there for a pleasant afternoon. It saved me a great deal of stress and prep work, which was good, while still being together.
In a few weeks we will head to Albany to see J’s family – both sons & families – which I think is in a familiar enough setting and with a familiar enough cast of characters to be manageable this summer. Between now and then we have tickets for a musical in town, and some half-day social plans with individuals and couples. Respite group carries on, 3 half-days a week and hopefully one of those will become a full day, soon. And we’re very much appreciating that the weather has been wonderful – summer in Maine really can’t be beat.
Thanks for reading this more general overview – back to specifics in the next entry.