This week, I helped my dad and stepmother move into an assisted living facility. It was hard. It was sad. And it was encouraging and hopeful at the same time.
My dad suffers from dementia. This is, I’m sure, a really hard thing for adult children to go through everywhere. I, of course, think it’s particularly hard for me because my situation is “unique” … right? Yeah, right.
My dad was always one of those people that was “on it.” Very smart, very sharp … the sort of person that others looked to for answers. He spent his entire career working for one of the big oil companies and, back in the day when he was first promoted to a management position, he was the youngest executive in the history of the company. That’s pretty major, at least in his daughter’s eyes. We shared a dry sense of humor and a love of Saturday Night Live’s Not-Ready-for-Prime-Time Players (back in the day of Gilda Radner and Chevy Chase), and Monty Python’s Flying Circus … especially the skit about the Ministry of Silly Walks. It was always his approval that I valued above all others.
Now, he is still very much “present” in the moment, thank God. He doesn’t ever not remember who we are, or where he is. But in preparation for this move, I watched him try to perform a simple task – filling out forms. On one, he needed to list me as an emergency contact. On another, he simply needed to sign and date the form.
For the first, he managed to get through a slow and painstaking dictation of my street address, but as soon as that was over he moved on to the next question, completely unaware that a city, state and zip code were still required (and particularly important since we don’t live in the same city). On the second, he managed the signature with only a little prompting but when it came to entering the date, he was lost until my stepmother offered, “Do you want me to do it?” “Yes,” he replied, as he pushed the form toward her. I could see his obvious frustration and … I don’t even know what word to write next … disappointment? anger? shame? They all apply, and yet none of them is quite right.
The worst part of dementia may be that it doesn’t take its victims overnight. They have a long process – the length of which depends on the form of dementia – during which they are fully aware that they are “losing it.” My father has always been my hero. It breaks my heart to watch his struggle. It breaks my heart that there is not a day that I can say “goodbye,” that I can let him know how important he has been to me, how much I love him, how much I admire him, because it would feel like I was writing him off and it may be too soon to do that because tomorrow may be just the same as today. Or it may not.
My stepmother has stage 4 melanoma. I think it’s been about 2 years since her initial diagnosis, and she has been an incredible trooper through all her treatments and has responded well in every case. She started pembrolizumab 3 weeks ago and we are all very hopeful that she will respond well to this too. But she is also the primary caregiver for my father, and she is unwell, and exhausted. And she has now started treatment with the ‘last resort’ drug – approved only about a month ago and the one they turn to when all other options have been exhausted.
So I guess that’s as good a time as any to turn away from the hard and sad, and toward the encouraging and hopeful.
They moved into a lovely facility, took a small amount of their own furniture, and have made a new home. There are programs especially for my dad so that he will continue to exercise his brain as much as possible and slow the progression of the disease that is stealing him from us. And these programs will keep him busy and occupied so that my stepmother has more time to rest and focus on her own healing, rather than be constantly preoccupied with looking after him. I am encouraged that they will have access to professionals that can help them navigate these tricky roads ahead. I am hopeful that they will get the kind of support that they need, the kind that I can’t offer living in a different city.
They are too young to be there … only in their early 70s, whereas most of the other residents are in their 80s and 90s. Still, I hope that they can be happy there. And in the meantime, I will continue to say my prayers for them and hope that they might stick around a little longer to give their grandchildren more of an opportunity to know what awesome grandparents they were lucky enough to get.