Hilary is the center of attention no matter where we go, but the woman Jennifer and I live with isn’t the woman I met 11 years ago. Yet, like that woman, this woman is buoyant, full of life.
People who meet Hilary once, remember her, call to her and become concerned about her well-being.
Is it rewarding to have traveled with Hilary for five months? No, it isn’t. It is work, unrelenting, uninterrupted work that increases in effort as Hilary progresses with her disease.
Jennifer started suffering from depression towards the end of the trip with Hilary never more than an arm’s length away, everyday, 24 hours day. Hilary never learned, after five months, where the bathroom is. Never knew we that we were on a boat, needed to be talked into changing wet underpants. Needed to be cajoled and tricked, and sometimes buffaloed into bathing.
We play the hand we’re dealt, and we don’t let the hand get in the way of what we want to achieve.
I learned how much Hilary has deteriorated across our trip when I reread the first Alzheimer’s post in April, a few weeks into the trip.
Hilary was active and engaged, batty to be sure, but admiring the surroundings we were in, commenting on them and filling in a narrative in order to be part of the trip.
By September, Hilary would sit, eyes closed, away in some internal place where everything made sense.
Alzheimer’s is so ubiquitous, that there were few people anywhere who did not immediately recognize the symptoms and behave kindly and supportively.
When Hilary is engaged, her joyous personality brings people to the boat when they see it in a new port or dock. It is so common, that when I’m below and Hilary is in the cockpit, I don’t always come up when someone calls Hilary by name.
Hilary lives on a cocktail of medications, some unrelated to Alzheimer’s, just the common drugs and vitamins that a 79-year-old woman takes. Three are related to Alzheimer’s: two drugs to slow its progression, and an antidepressant. It is the latter that allows Hilary to be the joyous person she is now, and was when I met her.
Without antidepressants, Hilary would become more of what one would expect to be if one never knew where one was, who the surrounding people are, or where home was and how one would get there.
At first glance, giving Hilary antidepressants is manipulative. Depression as a result of her circumstances is to be expected. We are not curing unwarranted depression.
To not administer antidepressants is to deliver her and us to hell.
At a certain point, as the disease progressed and we cared for her, each morning I would hope she had died during the night. The guilt for hoping for such a thing is not strong. There is only a facsimile of the person there now. Hilary, Jennifer’s mother, is long gone.
After a while, the hope that she will have passed in the night, itself passed, and each day continues one into the next.
Having written all of this, I find the saddest thing is that when Jennifer and I look back on the events of the trip that do not center around Hilary, Hilary is not in our memory.
In Phoenix, in the house where Hilary spent six years before coming to us, Hilary can find the bathrooms. She doesn’t know where she is, and continues to be concerned about going home.
She still wakes up at 4:30 in the morning, and generally needs to be shown to the bathroom, but not always.
During the day, she’ll wander the house and the walled property finding the toilets and using them. For a while she didn’t remember how to take pills, but that has passed, as has Jennifer’s depression.
Whether the depression disappeared because of the space, or the sunshine or a combination of these two things and others is unknown, it doesn’t really matter.
In five months, we leave again and unless Hilary dies, or rapidly progresses beyond our ability to care for her, she’ll join us. As currently planned, the trip can include multi-day offshore passages that we’d rather not bring Hilary on. We have a plan for this, which is another post.
There is no sainthood in what we’ve done, only the answer to this challenge: ‘‘There are 1000 ways that can’t succeed at a task, you only need to find one way that can succeed. Find that way.’’
The one way for Jennifer and I to sail to Alaska was to take Hilary, so we did.
Beautifully written, and heartbreakingly sad. Thanks for sharing Hilary’s story.
That’s a hard read; I cannot imagine how hard it must be to live the experience. Very best wishes.
Duncan, It’s not actually that hard, I don’t find. It is not pleasant, and at this point the humor, which we once saw in it, has left.
People say to us, ‘‘This must be rewarding.’’ It’s not. It’s not that terribly hard, though it can give Jennifer a feeling of being trapped with no escape, not even for a few moments. It triggers depression in her.
However, some have said, ‘‘just put Hilary in an institution.’’ We have criteria for that, which I expect will happen at some point, but not now.
A lot of this is predicated on some advice my friend Don Sullivan said to me, ‘‘What you want to do is a physical undertaking. At some point you [meaning me] will not be able to do the physicality of it. Go, go now.’’
It was very good advice, which we heeded, and this is how we did it.
We don’t feel sorry for ourselves, but there is a tendency for people we deal with to project upon our trip with regards to Hilary. This piece was to present a view of the trip without piety or rose colored glasses.
Duncan (and everyone), thank you for following us and reading what we write.
I admire you both for enduring the daily needs of Hillary. I am sure it was a daunting task and distracted from some of the joy of your trip. The love and compassion you’ll have shown her is admired by me and I am sure many others. May God’s blessings be with you both as you continue your efforts to live your lives and Hillary’s as well. God Bless you both.
That was some story John. I have had to be caretaker for three family members, one with dementia. As long as you and Jennifer can hold up, it is one day at a time. I know you said you have a backup plan for Hillary if conditions change. I came across something I would like to be part of, if one day I become similarly affected. They are starting to build special residential areas just for Altzheimer people. Here is a link to one of them. http://www.countryliving.com/life/a39630/nursing-home-tiny-houses/
Take care of yourselves, and enjoy life day by day.
Three! Linda that was quite an undertaking. I don’t know that I would have the strength.
I looked at the link. It looks nice. Alzheimer’s patients seem to be so variable that I know the community would work for some, I wonder how many.
Hilary has very little autobiographical memory, she doesn’t know where she grew up, or went to school. She generally can name her sisters, but not always. She does, as is the stereotype, remember music very clearly reciting lyrics on request.
Yes, day by day.
John,
Hillary was handed to you.
It is what you make it
Thank you, nice read.