Our fourth annual “Camp Mountain Creek” gathering of the cousins ended this morning. For the last eight days Ralph put up with three female adults (me, our niece and her friend) and four teen and preteen girls (our niece’s daughters and our granddaughter). Enough to wear out any man.
I have watched with fascination the evolution of the relationships among the girls as they mature. There used to be spats and hurt feelings that had to be soothed. This year they simply enjoyed one another. While there were shifting match ups there was no ganging up. The kids have created traditions they cling to (killer charades, skinny dipping, endless junk food) and have amassed stories they can tell and retell (scary moments, funny moments, angry moments, and serious moments like discussing racism and violence in America in light of the recent shootings). There were lots of tears when the cousins said goodbye.
I have also watched how their interactions with Ralph have changed. Four years ago he was at the center of things: taking them fishing, scaring them with ghost stories, driving them to Dairy Queen, and disciplining them on occasion.
Three years ago, they thought it was hilarious when he got a little lost on the way to McDonalds. Two years ago, they begged him to play Scattergories but he wouldn’t. Last year they couldn’t get him to tell his ghost stories.
This year we managed to get him to come with us for one meal out. He didn’t swim, despite temperatures in the nineties. He didn’t play games. He didn’t tell stories.
Mostly he enjoyed the girls’ presence at a remove. While he was not disturbed by the altered routine, the messy house, the noise, he did not go out of his way to be part of the activities. He kept up his daily routine—sleeping late, sitting on the porch, disappearing for an hour or two into his “office”, taking his afternoon nap followed by more time on the porch, dinner, and bed.
Sometimes he rallied. After enough teasing, he changed from jeans into shorts and sat with everyone by the pool one afternoon. Last night eating pizza at our last dinner together, he was as funny and engaged as ever.
The girls still adore him but they are old enough now to understand and want to discuss. I had to explain his diagnosis and what Alzheimer’s entails. The younger ones asked the older ones what he used to be like. The older ones talked about being “sad” over the changes they have noticed. They are all incredibly patient with him.
At first I was upset that they were so aware of Ralph’s diminishing self. But a friend pointed out that they were experiencing the life cycle first hand. She’s right. These girls will never forget their carefree weeks together on the farm, and sharing not only the joyful but also the bittersweet will make those memories all the more powerful. I wish I could be around to hear them reminisce about their “Uncle Ralph” and “Oppa” when they get together thirty years from now, as I have no doubt they will.
Alice in Memoryland 
So happy for you that you are able to enjoy quality family time, and that Ralph is able to enjoy it too! We know that the road will get rougher as we go forward in life, so as a good friend reminds me, now is the time to squeeze out all the joy we can in this life we share together.
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Your friend is so right. Although it is not always easy to remember her advice in the heat of the moment, the joy remains like a lucky charm in our mental pocket
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Hi Alice. Care givee back again.
I’m glad that you had a good time; it sounds like Ralph did, too.
Something that runs through all your posts is that you constantly have to make judgments, and probably with less than all of the training and information that would be ideal, about how to live with Ralph and manage his MCI. When do you push him out of bed in the morning and when do you let him sleep? When is it OK to leave him alone and when should you arrange for someone to be with him when you can’t? When should you let him take a pass on participating in a social gathering and when should you include him whether that would be his first choice or not?
You seem to find the right balance. That must be a challenge, especially as his moods and cognitive abilities probably are changing a little bit but constantly all the time. What was the right decision yesterday may not be the right one tomorrow.
I think my wife is starting to make those same judgments (or at least I’m starting to realize that she’s doing that), too. She lets me sleep in on weekend mornings because I’m much more tired these days. But we have two dogs, and one still a puppy who can’t be trusted to remain in the house too long without making a mess. My wife let slip that she was exhausted today because she got up earlier than she wanted to take care of the dogs, letting me sleep. Even if she wasn’t still recovering from her TIA (she does continue to improve), there is no need for her to go around sleep deprived. An “advantage” of MCI is that I’m so tired much of the time that I can get up at dawn, take care of the dogs, go back to sleep for a couple more hours, and let her get a full night’s sleep. Hopefully, she realizes that now and will sleep in a little longer and get a better night’s rest.
Maybe you all learned all of this in your Caregiving 101 class, but it must be a difficult to constantly be deciding a dozen times a day what is enough care and what is too much, when you should do something for us and when it’s best to leave us to take care of ourselves.
As for me, the 2nd of my 3 days of repeat cognitive tests is tomorrow. This process does seem to drag out!
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Always such a pleasure to hear your perspective and flattered by your comments although I am not sure I am finding the balance, or at least not as often as I’d like. And I am not sure any class completely prepares anyone, caregiver or caregiver.
I am as always amazed at your openness and self-awareness. You may have lost some memory but your wisdom remains intact.
PS so glad your wife is improving and you are right that she needs to stay rested….keep us up to date on your test results…
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As usual, your perspective is provocative in the best way. Your memory may be compromised but your wisdom remains fully intact.
Thanks for your kind compliment, but I seldom feel that I have found the right balance. It is a constant learning experience, just as you have described in your life, and no class really can prepare caregiver or caregivee.
ps. I am glad your wife is improving, and she does need to avoid exhaustion particularly now.
ops keep me updated on the test results.
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And these young people will grow up with an understanding of Alzheimer’s none of us really had.
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As often happens, your comment pinpoints what I never quite articulated. Thanks Mary.
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Thank you – I wasn’t sure if I’d said it very well so I’m glad you knew what I meant.
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Super-poignant entry. We are also looking at a visit in a couple of week to J’s children and grandchildren who live overseas and haven’t seen her for a year. It helps so much to read about other people who are in this type of situation. Thanks for sharing this.
I have so much respect for your (apparent!) energy, also. You’re a good model for me.
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Thanks for the compliment although having left the dishes in the sink overnight and overslept tip after nine this morning, I am not sure my energy is all that high. And having read your posts, you are no slouch….
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This is really touching. It’s the way things go, slowly fading, withdrawing, almost as if a sheer curtain is being drawn between our loved one and us. And what I hated the most was that the joy of life was taken away from him. Nancy
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Nancy, it is so good to hear from you. I hope all is going well for you. Thanks you so much for your comment. I think back to right after Ralph’s diagnosis when you were my guide. You still are….
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