This Christmas season I am definitely feeling like Ms. Grinch. Maybe it’s the increased sugar intake, maybe it’s the extra running around and social organizing, maybe it’s the gray weather, or maybe it’s not Christmas at all, just the wearing down of my patience over the last twelve months, but Ralph has been “getting on my last nerve.” And that nerve is shredding fast.
As I have said here so many times, this caregiving business has its ups and downs. Well I have definitely been in a definite crevice lately and having more trouble than usual crawling out. Or admitting I was stuck at all until this morning when I found myself texting my sister that I was feeling overwhelmed, the kind of admission I generally avoid. She responded sympathetically asking what was wrong; I wrote back “Nothing wrong exactly. Just day-to-day stuff. Everything slower and more complicated. Trying to adjust to reality of how Ralph’s limitations impact.”
As soon as I hit send I realized what I had typed was an acknowledgement of certain obvious but previously unstated realities:
1) I trip myself up with unreasonable expectations. Intellectually I know that Ralph is limited, but in the face of reality, I keep expecting him to step up to the plate. While occasionally, he does step up, like getting Zeus to the vet last week, usually he can’t. I know that’s not his fault, yet I still get annoyed.
2) Annoyance and its sister resentment are only part of what I am feeling. Before that text Ralph and I had spent hours writing an email responding to someone asking Ralph for real estate advice. Actually I could have/would have given the same advice, but she trusts Ralph’s advice more because he’s always been the expert. And his instincts and perspective remain sharp. But he cannot hold onto a thought long enough to give advice. So I constructed the email letter by asking him the same questions over and over, fine tuning as I posed the same question in different ways. We actually worked well together because we both acknowledged without rancor Ralph’s memory issue. That our final product was a clear, concise and useful analysis should have left us both with feeling a great sense of accomplishment, satisfaction and even pleasure. Ralph was pleased, BUT I WAS EXHAUSTED. And recognizing that the effort exhausted him at least as much didn’t lesson mine—he napped much of the afternoon—as I rushed around carrying out the various commitments and responsibilities everyone juggles in a day.
Obviously lots of people have more responsibilities, especially professionally, than I do at the moment. But I am finding that the effort that goes into making up for his limitations so he can live as full a life as possible…well it’s frankly a drag. Literally, because
3) Ralph’s limitations have been dragging me down and wearing me out. I wake up most morning tired. Worse, I let myself fall into Ralph’s low octane rhythm. My energy has dropped with his but unlike him I have stuff to do, the vestiges of a business to run, his life to run, my life to run, along with various other obligations in our family and community.
4) And then there are my personal creative ambitions. I have to ask myself whether I can keep them alive much longer under the circumstances. And my honest answer is, I’m not sure.
As I wrote that sentence I took a huge breath because there, I’d faced the real crux. Can I put in the increasing time needed to be Ralph’s caregiver—his chauffeur and calendar keeper, his rememberer and mental translator—and expect to have the kind of energy I need to focus and create another world in fiction.
I’ve always said yes, of course. But now I’m wondering.
Having admitted my doubts, I hope I am back in the swing of positive energy very soon. I think I will be. We all feel overwhelmed at times, caregivers and caregivees. We all want to escape. We all have to find the way forward that works for us. And the path is not always the one we expected.
Just writing that last sentence, I feel better already.
Alice in Memoryland 
Last week Neil was at our oldest son’s in NC. I spent the week getting ready for a surprise 40th birthday party for our younger daughter and preparing for 7 guests, 3 staying at my house and 4 at my older daughter’s house and for our christmas celebration yesterday. I was cool, calm and collected all week. I knew I had to do it all. I also did not have to think for two, only for myself and had no expectations for a man who wasn’t there. He came home Friday night and on Saturday, we were getting set up for the party. I had a list of things for him and our middle son to do. It wasn’t ten minutes into it that I was so frustrated and angry at him. I almost told him to “Shut up!,” something I haven’t said to a human being since I was a child. I ended up saying, no, not saying, I was hissing, “Be quiet, just be quiet!” when he was going on about how I wasn’t asking him to do things but telling him. We got over it, and the party and our Christmas celebrations were great successes, but it pointed out to me how different things are when he’s not here. Sad, but true.
So, Alice, you are not the only grinch.
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I am laughing and feeling much better. I would say we grinches have to stick together, ironically I just received an email ditty about a political grinch with whom I don’t want to be associated. So let’s call ourselves grinches with grace….
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Hi Alice. I read your latest post in the context of earlier ones (like “Mowing a Path Into New Territory”) that comment about how Ralph never quite gets around to doing jobs and little chores that he promises to do. Part of the value to me of your posts is they provide a useful measuring stick of my own progression, how I’m doing compared with Ralph. I took great comfort that I didn’t see in myself any of the procrastination or delay in getting things done that you describe in Ralph; that is, until I realized that I am exactly the same.
My epiphany came just a week or so ago when my wife casually mentioned that she had changed our furnace filter and replaced the weather stripping around the back door, two things I promised to do weeks ago. I suddenly saw that not only do I not get around to doing things I’ve promised to do, but I’ve been blind to the fact that I’m not following through. I don’t know if that’s a result of creeping memory issues or part of some kind of denial mechanism or a combination of them or something else entirely. However, clearly the distance between Ralph and me has narrowed.
I think I see subtle signs that my wife shares some of your frustrations as well. Sometimes there’s a little edge to her voice as she reminds me that she’s told me something several times before. The new furnace filter repeatedly showed up on the kitchen table as an unmistakable (although clearly insufficient) silent reminder before she finally took care of it herself.
But even if her frustration were to bubble to the surface and showed itself more than it has, I wouldn’t blame her a bit. This sucks, for all of us. Those of us sliding towards dementia suffer in one way. The people who love us and give up so much to stand with us suffer at least as much in a completely different way.
You are no Grinch, Alice. My wife and you and your many followers might have some dark thoughts and feel like exploding at times, and sometimes maybe you do explode – but you are all angels just the same.
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I remember so well feeling how you describe what you are feeling these days. Everything takes forever. The frustration. The anger – sometimes fury, whcih has to be hidden.
When I moved in with dad I thought I’d have time to carry on writing. I worked as a freelance journalist as well as writing books and I wanted to work on a novel, a follow up to No More Mulberries. I soon found I didn’t have time and when I did sort out extra help to give me a break I found all traces of creativity vanished. I managed to do a few bits and pieces of journalism – mainly to keep some money coming in – but the novel was shelved. Dad died two years ago and I thought once the grieving process was over (!!??) I’d be able to slip back into my old life, the creativity would return and all would be well. Hah! I think I had some vague idea that grieving was time limited – say a few months? – and all would be back to how it was before.
I am so glad I started the blog because at least that sort of kept the writing muscles working. I’ve done a few things and have finished a local history book (not very creative) but it is only now that I feel I might be able to get back to writing fiction. First, though, I’m going to turn the blog material into a book – something I’ve been putting off but have now decided is my resolution for 2017.
I’m sorry if this ramble is a bit depressing for you at the moment and it was my dad not my husband so there are huge differences.
I wish you both a lovely Christmas and all the best that can be in the New Year.
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I prefer reality to false uplift. And your comments about writing could not be more timely. I am definitely struggling in that area lately, this afternoon in point of fact. Finding “time” is not just a matter of physical time, is it? It is finding time not to be thinking for two.Thanks for writing. Have a lovely holiday. am pretty sure you will hear about mine….
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I feel as though we do take on their characteristics and it sucks! We slow down, because they do. I am thinking of getting some outside help, but that might make him more confused. Everyone says we should take care of ourselves, but so far I’m not very good at that. Just found out I have an ulcer and my personality, which was upbeat seems to have turned into anger and depression. Something has to change and that had be me, because he can’t. 💕
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Your honesty is wonderful. And the issues/questions you raise hit home. The ulcer news makes unfortunate sense. Acknowledging the anger is crucial I think. But figuring out the change to make is so difficult. Thanks for sharing….
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Consider ways you can take a break. Even if you give up some personal goals for a few months or more. Caregiving can be very depressing because we all need to feel we are making progress. And for now it is hard to feel progress as Ralph loses abilities. Take care of yourself and don’t be shy about asking for help. Even almost 2 years after dad’s passing, I am still catching up on all the tasks I wanted to get done regularly. We all have physical and mental limits. Acknowledging them can take some of the pressure off you.
I enjoy reading your blog as it reminds me that we all share the same problems and challenges. I hope you are able to take some time for yourself and to just enjoy the moment as the holiday activities come along.
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Thanks for your kind words and encouragement.Enjoying the moment is wonderful advice during the holidays and in general…
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Thanks for sharing Alice. As caregivers, while our journeys may look different, there is a common thread that connects us all. That part about letting go of our own wishes and ambitions is really tough. Realizing my/our bucket list won’t get checked off is a tough reality, but one that is important to accept. Otherwise the bitterness and resentment settle in and cause for a lot of unhappiness.
I know what you mean about the patience part. So many times I find it just easier to do things myself! And sometimes I do, just to keep my sanity.
Being able to write about this journey means everything. To just let the words flow and the emotions run…There is something magical that happens as we process the words that we have written. It often helps to bring better understanding, and sometimes peace. Hang in there!
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You are so right about putting the emotions into words. It also help knowing that others experience the same difficulties, doubts, misgivings and even less than generous emotions toward those we cared for…Thanks for writing.
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