Archive for October, 2012|Monthly archive page

A child’s choice

A few weeks ago, The New York Times published an essay by a writer named Kelly Flynn titled “But Who Will Care For Me?” In it, Flynn described being childless (because of a health problem) in a culture that revolves around the family unit. Near the end, she wrote, “…now, as I help my parents navigate the trials and indignities of old age, I can’t help thinking, who will do this for me? Even if I can pay for top-notch care, it won’t come from a place of love and understanding of who I am and what is important to me.”

I bristled at this notion for a few reasons – one, having children is no guarantee that you have built-in caregivers, and two, I don’t think it’s fair to burden children with the expectation that they will spend their prime adult years looking after their parents.

I suppose I sound harsh. But from my perspective, making that assumption essentially devalues the life of the child. I’ve heard many times that Mom took care of me and now it’s my turn to take care of her. I really don’t think that’s a very helpful thing for anyone to say. It suggests that children are born with the expectation of payback. I find that concept offensive.

Many children very willingly care for their parents. I started the job reluctantly, and have adjusted, over a lot of time, to being my mom’s caregiver, and now consider it an honor to be with her at this time of her life. But how that plays out is not for anyone else to decide. Considering the massive stress associated with caregiving, why should we also live with the impression, sometimes imposed by others, that our lives have less worth than the lives of those who become sick? And of course this is not an indictment of the tragically unlucky who are stricken with disease. I just think that in deference to the ill, we who are already vulnerable are at risk of losing sight of what we once wanted for ourselves.

Patrick and I chose not to have children, so we may find ourselves stuck in our old age with limited choices for how we spend our final days. We have some planning to do. But if we had kids, I would be loath to stick them with caregiving duty without considering their wishes.

I wrote the following comment in response to the essay. A couple of people called me selfish because I chose not to have kids. I’ve always found that response questionable – just who is missing out on something because I didn’t reproduce? I guess it means fewer grandchildren for my parents and Patrick’s. But they’ve never said we are selfish. Interestingly, the few who responded to me don’t say I’m selfish for placing my mom in long-term care. And I’m glad not to be judged in this comment thread about that, but it’s also no one else’s business. Anyhow, some of what I wrote is what I try to convey sometimes to my peers in support group. We matter, too. And it’s OK to say so.

I am childless, by choice. And I have no regrets about the decision. I am also caregiver to my mother, who has Alzheimer’s disease. Early on, I decided she would live in institutions and not my home (or her apartment) when the need arose. She adjusted well, and she is now surrounded by the most caring nursing home staff I could ever imagine. I made that decision because my life matters, too. … I looked after her while she was in assisted living and am her advocate to this day. And I love her now more than I thought I ever could after a complicated childhood. But in my caregiving support group, I remind my peers that though this disease is tragic and taxing on caregivers, it does not mean our lives as we have known them have to end. In fact, our lives shouldn’t have any less value than anyone else’s. … I don’t know what will happen when I am old or if I become incapacitated, but if I had children, I would not want to saddle them with caring for me.

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Entering a fourth year

My most recent care conference for Mom was on Sept. 26. I really can’t explain the hiatus from the blog lately. I am on a somewhat less frequent visiting schedule right now, mostly because I have been unusually busy at work. And when I visit less, I have fewer opportunities for updates, I suppose. But I did realize at the end of August that Mom had hit the three-year mark at the Alz center. I’d have to check, but I’m pretty sure the anniversary date for her move there is Aug. 28. I didn’t know what to expect when she moved in, but I find it hard to believe it has been three years.

Mom also has been in a somewhat stable phase for quite awhile, so I’m observing fewer changes to report about. She walks, she feeds herself, she enjoys social companionship and she likes to talk, even though most of her words don’t make sense. She still smiles and laughs a lot. I recently had a super visit with her. We took a walk and held hands, and stopped in a sunny area to sit together on a rocking bench and just enjoyed each other for awhile. She was more alert that day than she had been on some of my recent visits, and I was cheered by the time spent with her.

I got mail today that gave me a start – two envelopes from the IRS. I didn’t file a tax return for Mom for 2011 because she has no taxes deducted from her income, and for three years now virtually all of her income pays for long-term care, meaning she has no tax liability (she is one of the 47 percent, in fact). But it turns out these were warnings of potential identity theft. I checked Mom’s bank account, and everything appears to be in order there. I’m not sure what’s going on out there, but whoever might be hoping for financial gain with her identity isn’t likely to get very far. I don’t have to do anything about it. What a relief.

So, at the care conference, her current aide said Mom remains a screamer when she is showered or changed, but that on this particular day Mom had been more irritated than usual, and yelled, “I hate you!” at the aide. The staff members know not to take it personally. I’m sad for everyone in that situation. I wish Mom could relax about the personal care she receives, but I imagine she still recognizes vulnerability.

She was scheduled to be seen by the dentist on Oct. 4. I will be interested to hear how that went. I have asked about Mom’s dental health before, but learned this time that the dentist had been “unable to examine” Mom on the last visit in May. I wasn’t able to be there on Oct. 4 because of work; one wonders if I could have made any difference in calming Mom enough for an exam if she was agitated again.

Mom’s attention span is considered poor – no surprise – and she doesn’t really participate in activities because she understands very little about what’s going on. She does occasionally dance. And she seems to be observing other people a lot of the time. She appears to be having some trouble standing up from a seated position, but the staff members think that might be disinclination more than any mobility problem. She has essentially stopped hanging around with Mr. R but still spends time with Mr. Beard sometimes. The aide said Mom had declared that Mr. Beard was her choice. She had lost 12 pounds since June, but is still considered to be at a healthy weight. She gets ice cream three times a day as well as high-calorie cereal, which she doesn’t seem to like very much. Her food intake is between 50 and 100 percent. My friend at support group told me the other night that Mom had eaten every bit of her cereal that morning. And the nurse who ran support group described Mom as one of the residents who is peaceful…most of the time. That’s what I like to hear.