So yesterday, driving Ralph home from his shrink appointment in Atlanta an hour away, I hit a curb and flattened three tires. The day before I was writing an important email to an editor I wanted to impress and somehow hit send halfway through the first sentence. Sunday I was annoyed that all the guests arrived late to the brunch/shower I was co-hosting until I discovered the invitation said 11:30, not 11:00 as I assumed. (Well, my co-host got that one wrong too).
I tell these screw-ups on myself because I am aware that lately I have not been paying attention, that I am even more scattered.
Of course, I sometimes worry that I am “catching” Ralph’s Early Alzheimer’s, but more likely I am paying the cost of doing business as a caretaker without a caretaker personality.
The other night a friend from my adolescence called, and we had one of those wonderful rambling two-hour phone conversations that seldom happen anymore. Back when such calls involved sitting on the floor mindlessly twisting the phone cord while I chatted, she was the one everyone in our circle assumed would be the one with a big family. She was the warm, loving one. I was the one with edge.
But the other night she told me that dealing with her elderly parents who live across the country has taught her that she is not a nurturer after all. Fortunately, her more nurturing sister is taking most of the daily responsibility.
I have never thought of myself as the nurturing type either. As far back as I remember I was angsty and rebellious, even as a toddler. My younger siblings will attest that I was seldom a protective older sister. I avoided my family whenever possible. At thirteen I decided I wanted to be a Jewish nun to avoid marriage and children.
Yet here I am. I helped raise a step-son and two kids of my own. After my mother-in-law had her stroke, I was primary caregiver until her death two years later. After my mother had a psychological and physical breakdown, she moved in with me for the next nine years until her mid-nineties when she spent her last months in a nearby nursing home.
And now I am transitioning from Ralph’s wife to caregiver. The shift has been more gradual, luckily, than in many Alzheimer marriages, but it is always in process. And if Ralph is still in denial, I am less and less.
The patience required doesn’t come easily to me. I read other caregiver blogs and am amazed at the resilience, the selflessness, the willingness to give up so much.
I am not so willing. I have if anything thrown myself into more activities, begun more friendships. And although I do bite my tongue most of the time and don’t think Ralph notices too much, I am impatient.
And I am not as focused on Ralph’s needs as a nurturer would be. I don’t know what he is doing for hours each day. I encourage his painting, but I don’t push him to listen to music or talk about his past the way I know I should. I don’t get him to dance or bowl or join some activity to get him out and about. I don’t suggest we take walks together because I like walking with my women friends more.
And you know what, I am not a bad person. This is what I tell myself, anyway. I do what I can.
And I just need to calm down, take a breath, and put one foot in front of the other without tripping on my shoelace again…
Alice in Memoryland 
Hey Alice. It’s been some months since I’ve posted a comment, but I read all of your posts, all of the comments. I’m like Ralph – diagnosed with MCI about 7 months ago. I’m not the caregiver, I’m the care give-ee, which is why I don’t post very often. But to you and to all of you caregivers (including my wonderful wife, who may or may not know that I post here), I say – you are doing a difficult job very well! Don’t analyze too much, don’t beat yourself up. I’m still early in progressing into AD, if I am progressing at all. I’m still hoping that I’m one of the lucky ones with a MCI diagnosis who will be re-tested and found to return to “normal” cognitive performance for my age. I feel like I don’t have a problem (Ralph’s denial?) but my wife occasionally lets slip that she sees stuff suggesting that I am progressing. Anyway, my wife is very patient, either overlooking my MCI or just my “normal” age related memory issues. I am grateful for that. I’m sure your significant others, wherever they are on the spectrum (at least up until full-blown AD), are also grateful that you are hanging in there. I don’t expect my wife to be perfect in dealing with me. I don’t expect that she won’t be short with me when she tells me for the 3rd time that we’re going somewhere next weekend. Maybe it’s naive, but I bet most of the spouses you are caring for (at least until they progress to AD) feel the same. So you are the heroes. So just do the best that you can, which is good enough, and pat yourself on the back and feel good about yourselves.
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Thank you so much. Your response is incredibly moving on so many levels–your self-awareness, your courage, your generosity of spirit, your love for your wife–that I choked up reading it. You have articulated the bridge between caregiver and care give-ee eloquently and from the perspective I can’t offer. Would you allow me to copy and print as a post?
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Thanks for your kind words. Sure, feel free to post.
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I’m curious to know what Ralph’s reaction was to you flattening three tyres?
Your role as caregiver to a spouse is so different to my role with a parent I sometimes feel I don’t have the right to comment. I have no idea what it is like.
I do think, though, that it is important you do things for you, like walking with your friends or reading or whatever because you need to hang on to the things which give you a sense of self.
I was never a nurturing person, either. Dad used to tell a story about when we were travelling on a ferry and child was having a tantrum. I (apparenlty) said if it was mine I’d throw it overboard. I did laugh at your comment about your younger siblings attesting to you not being a protective older sister – I made my younger sister smoke a cigarette so she couldn’t tell on me when she caught me smoking.
I’m afraid shoelaces may continue to trip you from time to time.
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Actually his reaction could be a post in itself–and might be. In the past, if I had screwed up the way I did yesterday he would have lambasted me while if he had screwed up, I would have swallowed my anger. Yesterday he sat with me at the tire place and never got even slightly angry although he was clearly bored. Partly he knows he is dependent on me; partly he has become a passive person He also forgot what had happened as we sat there.
And please don’t stop commenting. I always look forward to hearing from you. And you offer wonderful advice. In fact, I find it hard to believe that you weren’t nurturing although the cigarette story is pretty funny as well as convincing!
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Hi Alice. I have followed your blog for a while, and so appreciate your thoughtful posts and insights on what it is like to have a spouse with a cognitive impairment. My career was one as a professional caregiver (nursing), and nurturing came easily for me. But as the spouse of someone with cognitive impairment, it is hard! I think this is because it is not something we choose to do; it is something that life as handed to us, like it or not.
The other factor in play is that in the back of my mind, I know that this is a good as it is going to get. It’s hard to face that. In my working years to be a caregiver, I knew there was a start and a finish. Now we are facing a future of further decline, and further uncertainty for how it will play out. Thanks for a thoughtful post!
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Thanks so much Carole. Your comment is so insightful and says what I meant to say only better….
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