I woke up this morning saying those words to myself. Which is a good thing.
The truth is lately Ralph has been getting on my last nerve. When he starts on one of his loops—lately his favorite has been the history of our dogs and the order in which they died—I tense up and cut him off saying I don’t want to talk about it. When he gets confused following simples directions or an explanation, I am dismissive. When he lights yet another smelly cigarette, I want to pull my hair out.
I could go on with a litany of complaints about Ralph and admissions about my behavior/attitude. But there’s no need, is there? Probably, hopefully, I am making myself sound worse here on the page than Ralph would say I am in real life. And if I am in a state of constant annoyance toward Ralph, I am in an even greater state of annoyance toward myself.
The thing is that sometimes I forget that living with MCI is a slog not a sprint. What I unfortunately don’t forget is that there is no end in sight, at least no good end.
The other thing I forget is that while we are in this together, we are also each in this alone. While I can try harder to empathize, I cannot know what Ralph is going through, and I can’t expect him to know what I am handling. I have to take responsibility for managing my frustrations and creating my joys. When I don’t, when I slip into blaming everything on the MCI, life goes downhill.
I am sure I will slip again, but for now, the sun is rising above the trees, the dog is chewing her fake bone, the coffee is brewing and all’s right, or at least okay, in this corner of the world.
Alice in Memoryland 
Ah, whatever the circumstances, don’t we all mope at times for whatever the reasons, so why wouldn’t you — only what may prompt this mood may differ. Perhaps we fear acknowledging we go there because we fear we might get stuck in that mode. Helpful to share how we navigate that road out.
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Yes, the moping comes easily. The navigating out is more tricky, but doable.
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Alice, Alice, Alice. What am I going to do with you? And now Carole: “inevitable devastating future.” Really? Hope – you have forgotten all about hope. Not senseless, groundless optimism, but hope based on reality, hope based on science.
We are at an exciting, hopeful time in the fight against MCI and Alzheimer’s and every other form of dementia.
Ralph is stable. My memory is improved and other cognitive abilities maybe not doing as well, but overall I’m hanging in there. Carole, wherever your loved one may be on the spectrum, there is no inevitable devastating future.
Some people get better or worse for no clear reason, but everyone who has MCI or mild AD or maybe even moderate AD today is still in the fight. Some of us will convert next year, some in 3 – some may never convert before one of the drugs in Phase III clinical trials is shown to reverse the amyloid plaques and tau tangles and other crap that clogs our neural pipes. But brain Drano is coming, maybe long before the shelf life of a Twinkie.
I’m certain it’s not easy. No matter how close or how far someone is from AD, caring for that person isn’t easy. My wife would agree with that, I’m sure many/most/all of you would agree with that. But hope for a cure is what keeps me going. Hope for a cure should – well, give you hope. And best of all, hope for a cure is something that I bet every neurologist in the country would say is not pie-in-the-sky optimism, not wishful thinking, but rather a very real possibility in our lifetimes. You are not caring for someone to make their passing easier, but to buy them time until there is a cure. It may not come in time for me or for your loved one – but then again, maybe it will!!!
Tell me why I’m wrong if you can.
Tell me not to post if I’m too harsh, please.
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You do make me smile.
One, you are never too harsh. Reading the passion and life force is a joy. And your willingness to engage challenges me to think and feel more deeply.
Two, you are not wrong. Well, who knows, you may not be right about the cure, but you are not wrong to seeing a possible cure in your future
As for my moping and Carole’s acknowledgement of her own despair, this is our safe place to express the underbelly of feelings, whether as caregivers feeling frustrated and occasionally overwhelmed or as caregivers living inside of changes they didn’t ask for, trying to adjust but also hoping upon hope that some kind of cure will come along in time.
So while I reserve the right to cry in my beer (or Ralph’s beer since I don’t like the taste), I also applaud and appreciate you for telling me to suck it up and get on with things….
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Thanks, Alice. To you and Carole and all who read my comment, I didn’t mean to judge or minimize the despair, frustration, maybe anger that any caregiver must be feeling. To repeat myself, I know it’s not easy for my wife, not easy for any of you. You all need to vent, and this is your place. What I was trying to do was to share the realistic hope that I have that keeps me going when I catch myself seeing no good end and an inevitable devastating future for myself.
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Don’t worry, you did not come across as judgmental at all. As always your comment was a valuable perspective.And let’s face it, whose life is easy whether they have a medical condition or not…..Your ability to catch yourself and turn your attitude in a more positive direction is inspirational.
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A slog indeed, but you are right about managing perspective, even though it can be hard to do in the moment. We cannot always control the circumstances we find ourselves in, but we can choose our attitude. That sentiment has become a bit of a Hallmark cliche, but I found it to be true when I was a family caregiver.
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You are so right…..I do think managing perspective, which is key, is affected by everything else going on in your, or rather my, life–from what book I’m reading to if I have a cold or am on a diet or having some other unrelated issue. And sometimes the effort it takes to choose is easier than other times. Thanks for writing.
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Oh, I know that struggle: the irritation felt on the inside, then feeling guilty because I’m not the one with cognitive impairment, and then worrying about how the inevitable devastating future. It is so easy to get into a slump over all of this. And it is a slog; great description.
When I am in the midst of feeling sorry for myself, it’s hard to remember that time has a way giving us good days and bad days. The respite for ourselves is so important.
Thanks for writing Alice. You so often say exactly what I am feeling!
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Carole, you are so right. I have mentors, like Mary below, who have been through this before, and I read–the same way everyone does–the articles and studies. But ultimately we each go through this alone. Still knowing others are finding their way does help.
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You’ve reminded me of how irritated I used to be when dad was in the early stages. His ‘loop’ was telling us about his journey by bus to the next town, where he want, what he did – I could have walked it blindfolded I’d heard it so often. In the beginning I would interrupt and say he’d already told me – but, of course, he didn’t remember telling me. He’d be hurt by apparent lack of interest, but only for a moment before he’d be back on the loop.
I like Jabberwocky’s swamp metaphor.
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So Mary, I just described you to Carole as a mentor. Hope that is okay. And it helps to remember that my annoyance regarding the loop is not very important since Ralph is largely unaffected. Yes that swamp metaphor works, especially given the hot humid weather we are slogging through….
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I’m honoured to be considered a mentor. You are so right, though, that we each go through this alone. For each one of us it is different – but it does help to know others are going through it, too.
I wish we had hot and humid! In Scotland we’ve seen nothing but rain for what seems like months. The south of England is having weather hotter than Bangkok – we get mild and wet. Still, I’m going on holiday this week to find some sunshine 🙂
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Boy, do I hear you! Thanks for writing – it just helps to know others who are wading thru this same swamp.
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Thanks for writing. Your metaphor is so, so apt.
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Thank you for writing of caregiver frustration. What I am still wondering about is how the symptoms you address are considered MCI vs. Early Alxheimers. Are you able to leave him alone?
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Thanks for your response and your question, Ellen. Ralph had his annual testing recently at the Emory Brain Center and the tests show his cognitive abilities remain on a plateau at Mild Cognitive Impairment. Basically, his memory is shot but his reasoning skills have held steady. The untestable stuff includes energy and attitude of course. As for leaving him alone, yes I can and do leave him alone as long as I prepare carefully ahead re food, meds, support systems and check in a lot. I have travelled for several days at a time over the summer. In fact, I think my recent case of doldrums comes after a few days of respite–getting back into the routine has been difficult (but that may have to do with my own head, not his).
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