Ralph and I spent the last few days eating and sleeping in the same house and interacting with the same people and yet our weekends could not have been more different.
Our town faced a crisis this weekend because the same Neo-Nazi organization that marched in Charlottesville, Virginia, decided to hold a rally here. The city government felt obligated to issue a permit under Freedom of Speech laws (but foolishly did not think of charging them to compensate for the cost of such a rally to the town). In response local citizens, including me, organized responses to the rally. Folks gathered on the town square on Friday night to support the local businesses, which would have to be shuttered during the rally, and to help children chalk humanitarian messages on the walkways in the park where the Neo-Nazis would be convening. Saturday there was a peaceful protest against the rally and also a Unity Gathering, an ecumenical coming together of citizens of various faiths, races, and ethnicities.
I attended all of these events. Ralph attended none.
Although I discussed the situation as little as I could, I probably discussed it more than I should have. After all, I was embroiled and it was on all I was thinking about.
On Saturday (and probably even Friday night) Ralph was filled with anxiety. Safety is paramount to him these days. “Be Safe” is his mantra to me every time I leave the house, even if only to drive to the convenience store. And to be honest, there was reason for concern Saturday. Fortunately, the husband of a friend who was also attending the Saturday gatherings stayed with him during the afternoon. And more fortunately, the number of Neo-Nazis who showed up (40 minutes late to their own two-hour rally, by the way) was smaller than expected; the anti-racist protest peaceful; and the Unity gathering was uplifting in the best ways. Ralph enjoyed his quiet day and I ended up enjoying my very active one. By the next morning he’d pretty much forgotten there’d been anything unusual going on.
But that was not the end of the weekend.
Sunday night we were invited to dinner with three couples we see regularly. The get togethers have always fit the same pattern, Ralph always complaining ahead about having to go, and then telling me what a wonderful time he’s had afterward.
Not this time. As soon as we got in the car to head home, Ralph rolled down his window, pulled out a cigarette and announced in no uncertain terms, “I was ready to leave an hour ago.”
And the truth is, so was I. As much as I love and enjoy my friends, I was a tense wreck the whole time because I could sense Ralph’s misery. In the past Ralph has told his own stories and jokes and enjoyed the jokes and stories of the others, but he was much quieter last night. He would laugh when the rest of us laughed at a joke but I could tell he was not sure what was funny. He would be just that little bit too quiet while listening to someone’s story or some casual banter so I knew he wasn’t really following it. There was a new divide I could not avoid notice widening between him and everyone else. I found myself mediating, trying to cover for him much more than I’ve had to in the past. And it was exhausting.
I have read all the literature about keeping people with cognitive impairment as mentally active as possible, but I have slowly become less pushy. And I am facing that groups of more than three are now an overload for Ralph, especially when we are away from home, but maybe even at home.
So no more making him attend events where he is out of his comfort zone. Which doesn’t necessarily mean I will stop attending, does it? That is the equation I need to work out.
Alice in Memoryland 
My husband has never been a communicator. Bless his heart!
I am seeing less and less ability to communicate coming from him. In fact, a month ago or so I looked up aphasia….is this normal?
It appears to me that his internal “person” is diminishing!
He used to be my source of strength…he has really cared for me during my last school teaching years and now after retirement – a total of 10 years.
My heath issues are finally being resolved….and just about now, he is presenting with troubling memory loss.
The memory issues became a source of strife last weekend when he reluctantly agreed to cancel an outing with high school buddies in a town far away. He was going to drive by himself on exceptionally dangerous roads. I plead with him concerning my upset about him driving. It was a good result in that he cancelled, but he looked like all of the air being let out from a balloon. I feel so guilty…and so bad.
All that seems left now is a husband who is rather depressed and resigned.
It makes me so very sad.
We are going out to dinner with friends Friday night. He doesn’t seem real excited.(unusual)
Do you think they know or have noticed for a long time?
Should I tell them about this new development? (Cognitive decline?)
Thank you to everyone who posts…this is really helping❤️
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Has he seen a cognitive specialist and been diagnosed? It took us a long time to get past the denial and become at all proactive, but once Ralph received a diagnosis and was put on medication to help the memory symptoms we both felt less rather than more helpless. The fact that he gave in to you concerning a drive that was probably scaring him to death too makes me think he knows there is a problem. As for telling others, that was tricky for me. For a long time I tried not to, but I have found letting me people has been a help, at least in our case. But everyone’s situation is different and you need to do what is comfortable for you.
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Our doctor either would not or could not make any determination at his physical last week.
Your suggestion makes sense though and at least I have given all the facts to both the PA the doctor’s nurse (women).
The two women seem more willing to listen and note facts, which I am confident (now) that our doctor (who accepts Medicare) will have these facts on file for reference.
Do I wait for his doctor to assess DH, or do I proceed on my own?
I guess this would be a question for the doctor (an Internal Medicine specialist MD)
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Our internist/family dr. referred us for neurological testing once Ralph went in and explained his issues (which we told ourselves was Lyme disease related) . An internist might give the mini cognitive test but is not equipped to do more complex testing–at least three ours of intensive testing. If there is a teaching hospital near you, it will have a mental health facility that might be of help (usually has a long wait to see given the explosion in cognitive problems). It sounds daunting but you will be glad you pursued once you get more specific answers. There are numerous possibilities for what is happening….
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Everything I am reading says that RX s don’t work.
I am weighing the advantages vs disadvantages of pushing DH toward all of the diagnosing processes.
I have had some revelations.
His helplessness was really getting on my nerves until I realized he is having MCI symptoms.
Withdrawn, unsure personality… this is new and different too.
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The decision to get diagnosed and on meds is completely personal. I know I dreaded the diagnosis but felt relief once we had it. And in our case since Ralph started taking meds, his conditioned has plateaued, at least in terms of memory. Who knows whether that would have happened anyway, but I would not want to stop them now.
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You are describing an emerging issue for us. We visited my sister-in-law and her family recently. Although these people are kind as can be and I know them well, I did become uncomfortable as the afternoon went on. It just started to feel uneasy with all the noise and activity around me, and I wanted to escape to a place with less going on.
My wife noticed and we talked about it on the way home. She reminded me that the neuropsychologist who does my annual testing had suggested that we have a secret hand signal for me to use if I’m reaching my limit, and she reminded me what it was. Of course, I’ve already forgotten what it is! 🙂
We haven’t used the signal yet, but I’m sure the time will come. I’m reluctant to use it, frankly, in part because I want to reduce how my AD affects my wife as much as I can for as long as I can. Your stories show this is a worthwhile effort so that my wife can keep something like a normal life for as long as possible. There’s no way around caregiver fatigue at some point, but at least I can try to delay it.
Heading Somewhere
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You know I seldom give you advice, but I have to say here, don’t worry about the hand signals–I would forget them too. What I was trying to say in my post was that deciding not to push Ralph beyond his limits does not mean limiting myself. As caregiver I need to recognize when his discomfort is not worth the effort to connect with the world. You and Ralph have enough reasons for anxiety; you don’t need to take on responsibility for your spouses’ anxiety too. What I do appreciate is that Ralph doesn’t mind if I head out for what I might find a bit of fun but he finds only exhausting. So give her a kiss as you settle in with the dogs on the couch and know she’ll come home happy to see you…..
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Good advice.
Ah, the dogs – the all forgiving, always patient dogs. We talk more these days because I don’t have to worry about what I say! 🙂
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Same sort of situation we have in going out with friends or family – and I’m wondering whether and how much social life I can have on my own. It depends on whether my spouse is in a comfortable place with me leaving. Sometimes she wants to be part of anything that sounds even vaguely fun, but others she begs off and suggests I go on my own. The hard part is not knowing which is going to happen for any given event.
Hard not to resent, at times, but then, we’re all human. Hang in there, and thanks for writing about your experience – it helps me a lot!
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Thanks for this. You bring up an important point, that planning ahead is difficult because the mood can change. In our case, Ralph used to be more changeable but now he usually goes from initial enthusiasm to negative so I am beginning to assume ahead what the situation will be. He rarely minds my going alone. He doesn’t seem to mind being alone with his dogs….
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I am going through the same things with my husband. Although he will want to go out to dinner or see friends, he tires very easily, and I also notice that he has great difficulty keeping up with the conversation. The last time we went out to dinner with some of my family (there were five of us including my husband and I) he fell asleep at the table in the restaurant. He likes to be in bed by 8:00 pm. I don’t want to give up my social life. I fell like I just got it back, since my children are now independent adults.
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This struggle of balancing needs is tough isn’t it? I am not willing or psychologically able to give up my life and yet respect Ralph’s inability to lead the same life and his dependence on me. My difficulty is not going too far in demanding more than he can handle and in not resenting the effect of those limitations on me. And really at this point the limitations don’t deserve the resentment I sometimes feel…Thanks so much for writing.
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