No Going Back

Feb 28 2014 Published by under (if) Elder (why) Care, Daily Struggles

I have a good friend with some chronic health issues. Our lives are very different, but we have much in common. We talk about how losing a husband or a career changes your identity and understanding of yourself. How the responsibility for young children or elder care grinds at you, day by day. How illness turns what was once a pleasure into a source of dread.

We both had our social circles, liked to eat out. Then health issues made that impossibly difficult. At my worst point I stopped eating out altogether; she went down to two places whose food wouldn’t harm her. I have since been able to reintroduce many foods into my diet and can eat at a wider variety of places; she is still mostly limited to the two, so that’s where we go when we go somewhere.

We both know what it’s like to try explaining complex dietary restrictions. “Peanut allergy” and “gluten-free” are in the general public vocabulary, but “onions give me migraines” and “I’m eating raw or plain food” are not.  A few weeks ago we went to see a favorite band, had dinner at a nearby Asian restaurant. She asked for steamed vegetables and brown rice.  It was the work of several minutes to convey this as a serious request. Usually Asian restaurants are safe bets for her; everything is to hand and it’s no big deal to throw a few steamed veggies on a plate. Why it wasn’t this time, who knows.

And then there is the discomfort your dining partners experience. They will range widely across the menu and enjoy their meals with gusto. They can’t help it, and you don’t want them to. But it makes them feel bad, when they look at you. Sometimes your dining partners are not just discomfited, they’re angry. Why don’t you just try a little x? Are you sure you can’t eat it? Do you have to be so picky? It’s so difficult every time we go out to eat! Eventually you just stop going out to eat. Except to your two places, with the handful of people who understand.

We vent together  – food, our once taken-for-granted good health now gone, the responsibilities weighing us down, the isolation we experience. One day she said “People say when God closes a door he opens a window. I’ve been waiting for my window for a long time. I try to keep hopeful, but I just don’t see it. I just keep wondering, when am I ever going to get back to myself, back to [the person I was before marriage and children and divorce]?” Here, dear Reader, was the time to blow sunshine up her ass with a cheery “keep hopin’ on that window!” Or not. I chose not.

I said that some experiences we have change us so profoundly that there is no going back. That person is dead and gone. We are now some new version of ourselves, and it is not the person we were planning to be. The door was one-way.  The view from the window is strange. We can look over our past, and should be generous to the person in those memories. But we have to grapple with this and now. Quite often, it is not a lot of fun. Not that there isn’t fun to be had, but there is also the realization that life never lets up for one damn minute, till you’re dead.

Obviously a stroke, lost career, and years of severe migraines have had their effect. But it’s the past six years of elder care that beat a lot out of me.  I know elder care made me more aware of disability issues, even helping me see my own chronic illness in a stronger light. I know it made me value kindness more highly than ever. I know it gave me the gift of long hours spent with my mother and in-laws that would otherwise not have been. But I am also a duller, slower, person with an even narrower life than before.

I am slower in part because I am older – the difference between 45 and 51 is real and I feel it. The slowness is also because the work and stress and worry of the past six years tired me out. I am disinclined to work really hard at anything. I am hoping spring and the garden will have some reversal effect on that.

I am a duller person. It takes me longer to read. I can’t always follow what’s going on in a commercial – there’s a lot of flitting from one image to the next so fast a dull mind gets lost and quits.  I am more forgetful. I struggle more for the right word or name. Some of this is due to natural aging and the effect of menopause and also no doubt to the effect of so many different meds mixing in my body. But I know that part of it is due to the long, steady drain of elder care on my cognitive resources.

And my life is narrower. The intermittent but unpredictable debilitating migraines had taken away my work connections and most of my social life. We had moved from one state to another. The few friends I once had in this area had themselves moved away. Children and church are the two other main conduits to social interactions, and I had neither. I was just taking baby steps to build a social life for myself without the usual resources of work, family, and church, when elder care arrived on the scene. Elder care is a chronic unpredictable set of minor and major disasters plus daily repetitive tasks that are always urgent and never completed. It gradually swallowed up more and more of my time. It occupied my mental and emotional energy even when I wasn’t directly engaged with it. It became my new job, family, and church all in one – just without the social contact.

In this and now, life will still not let up for one damn moment on the slower, duller version of me. I am aware that, if I’m lucky, I have about thirty good years left. I would like my slow, dull ass to do the best it can with them. The view out my window right now is blank. Apparently tilling and planting of the earth are required of me, if I want to enjoy the view.

5 responses so far

  • Respisci says:

    Your post resonates with me. My father is 89 years old and suffering from advanced Alzheimer's. I am blessed with having a few friends who understand my situation but for most part, the responses from most people when I discuss my father are often platitudes of "you never know, he may get better". I am frustrated with having to explain that no, he will not get better. We are on a downward trajectory with a single outcome and this will not change. We have to deal with the current situation and make plans about the next stages. Cheery responses are not appropriate. I understand that these topics (illness and death) are challenging for those who have not had a similar experience. We have been trained to approach life with the idea that things will get better and if they aren't getting better, well, we just need to try harder. The realization that something is out of your control and no matter how hard you work that it will not get better is a huge concept to accept. My current reality is that my father enjoys having two puddings with his lunch and that makes him happy. We manage those expectations. I don't expect for him to not be incontinent, to be able to read a book or newspaper or for him to recognize me when I visit. But I can make sure he has two puddings.

    I relate to your sense of being dull. This weekend I was at a farewell party for a friend who is taking a job offer in another country. An exciting prospect and I am thrilled for her. During the social chitchat with other guests at this party, there was the usual back and forth of "what is new with you?". My comments were limited as for the past two years my focus has centered on my work and taking care of my parents. I did my best to be an engaged listener to the tales of others, showing appreciation to their travel stories, or their mishaps at social events and so on, but was painfully aware of how narrow my world has shrunk (down to two puddings).

    • Zuska says:

      Ah, I really feel you on the "what's new with you" biz. I almost think I don't even remember how to talk about other things, even if they occur in my life. My mother used to ask me what's new, as she so wanted news of "the outside", lives of other people, and I would struggle to find things to tell her. Even if I had been to a movie, or a concert, it was like the memory of that event was over-written by the bill-paying and insurance wrangling and medical mix-up sorting, and I would come up blank.

  • pyrope says:

    You are a valued and loved voice online for me - hang in there. *e-onion rings* - the beauty of virtual food is that it has neither calories nor induces migraines.

  • mad says:

    Six years of feeling responsible 24/7 has likely given you a mild but persistent case of PTSS. Give yourself time to grow out of it. Plant and till your garden, even if you see no use in it. Your eyes will clear and the younger Zuska, who has gone underground all this while, will return somehow, somewhen.
    And what pyrope said.

  • […] has done an amazingly good service in shedding the light on what’s ahead for many of us. As she says: “Elder care is a chronic unpredictable set of minor and major disasters plus daily […]