I had intended to leave home over the Easter weekend 2012. It was to be my second two-day respite after returning to live and care for Mom five and half months earlier.
I was physically and emotionally exhausted; I desperately needed to get away. I was counting on the person who was soon to be in complete legal control of Mom’s care, and who lived just a few miles down the road, to be close by in case Caroline, our angel care partner, needed support while I recharged my batteries.
But as many care partners learn to their dismay, relying on others often leads to disappointment, anger, resentment, and the feeling you’re drowning. I was both furious and at a loss when I discovered the back-up I had hoped for would not materialize because the person in question was going to Mexico on vacation. If I didn’t get a break, I would suffer a break – I knew that for sure. I decided to cancel my away time, but also have Caroline come for a “tag-team” weekend. It was the best solution I could come up with under the circumstances.
As many things do, it turned out to be a blessing in disguise.
Over the weekend, Caroline, Mom and I shared some lovely moments including an Easter egg hunt during which we hid, found and ate chocolate eggs (not necessarily in that order!). I filmed and photographed some of the fun, which reminded me of my childhood. I am truly thankful to have these memories, though I still sometimes struggle with anger toward family members who failed Mom and me, and worse, actively vilified me and, incredibly, did their best to make my life miserable. I’ve heard the same kinds of sad stories from other carers worldwide — a situation that makes being a care partner even more difficult than it already is.
But I don’t want to dwell on that “bad karma.” There’s no use being bitter and twisted because of someone else’s unconscionable behaviour. All it does is give them more power, which is of course what they seek. Instead, I want to celebrate having brought my mother joy and myself healing while we lived with her dementia. The road was extraordinarily difficult for both of us, but it was worth it in the end, and I have no regrets.
I hope you like this three-minute video of our 2012 Easter egg hunt. If you are a care partner to someone who lives with dementia, I also hope you are inspired to create moments like these filled with life, living and the people you love.
https://myalzheimersstory.com/2015/04/03/happy-easter-memories/
My Alzheimer's Story 
What a treasure trove of wonderful memories you have Susan, and how fortunate are we that you share them with us so that we are all reminded of life’s simple beautiful moments. Happy Easter my friend xx
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True enough. I should’ve taken more videos of you 😛 Then again, you are forever imprinted like the angel you are in my mind’s eye. Until I forget of course, at least in this sphere. In the other, we will always be connected. XOX
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Your mom was still pretty ‘with it’ when this was filmed. It was fun to watch her searching. She had the ability to count and follow directions, too. Loved the film and glad she found “the pinkie”….lol Have a blessed Easter- xo Diana
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Diana, I think people remain “with it” much longer when they’re given proper care, stimulation, social interaction, etc. Mom was able to count, spell and connect complex thoughts long after anyone else but me believed she could. Like the rest of us, I think people who live with dementia thrive when others believe in them, even as their capacity declines.
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So lovely to watch- so easy to forget to have fun as a caregiver. Wonderful memories for you- so very wise to have done all the recording.
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Thanks Bonny. yes, you’re right, it is easy to forget, particularly when you’re in the midst of it! I think it was more luck than wisdom that led me to do the recordings, and the fact that I’m a writer, and as such a documenter and “journalist” played no small part in me having a beautiful collection of audio and video recordings as well as photographs of interesting times during our journey. I’m happy to share them with others, and I hope some will follow my path.
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I have noticed that over Christmas and Easter the number of deaths seems to increase (i.e. the months of February to May).
I have often pondered why? Yes! … it may just be a coincidence, but I developed the suspicion that it increases due to nostalgia floods and reality droughts! At these special times of the year we all harbour some vestiges of memories of childhood and of yesteryears happy occasions. But sadly these are also times when elderly people are left alone in care Homes, as their families engage with other more pressing family commitments such as vacations, and parties.
I developed the suspicion that perhaps some elderly (and even those with dementia), dismayed by their loneliness amidst the hive of activity of others visited by relatives; dissapointed with their dearth of visitors, amidst the social joy of others (whosr famil’s take them home, or at least enjoy Christmas or Easter lunch with them … come to the sad conclusion that they are no longer wanted. Perhaps their minds say to them – we are no longer needed; our job is over! And as a result subconsciously concluding that that their role in life; their reason de atre; their purpose in life … is over – simply die!
I acknowledge that the sample size and duration of my experiences are too short to place any credence to my suspicions; however Easter and Christmas can be an extremely sad occasions for some, and care giving such as is displayed in the video is an invaluable manner in which to lessen the pain of the lonely and abandoned.
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Henry, your answer literally made me weep. I spent every Christmas with mom from 2005 to 2015, the last 10 years of her life, and of course, so many more before that. I lived in the United Arab Emirates from 1993 to 2011 when I came back to live with and care from Mom; here is a video I made during my time home at Christmas 2008:
https://myalzheimersstory.com/2016/12/18/walking-in-the-winter-snow-2008/
I think you may be right that people “come to the sad conclusion that they are no longer wanted… and simply die!” What a tragedy that is. I think a large part of may be attributable to the way we view aging, the elderly, and particularly dementia. There are so many myths associated with this time of life and this disease. It’s part of my mission to change some of the misperceptions and negative narratives that lead to the sadness and despair which you have so eloquently articulated.
Thank you for validating the goodness in sharing the joyful times I experienced with Mom. Our journey was no bowl of cherries I can tell you, but neither is life is it? I will share some of the more challenging times in the future, all of which are simply part of living and being human and which likewise deserved to be celebrated.
I hope for a world that is one day more inclusive and compassionate.
Thank you so much for sharing your thoughts.
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Hi Susan I really enjoyed the easter egg hunt. What a fun activity to do with your Mom. It reminded me when I hid them in my garden so many years ago for my children to find and how much fun they had . I think the aim is to find simple activities which give joy and Pleasure.
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Re “the aim is to find simple activities which give joy and Pleasure.”
Yes, that’s it. If we focussed on that, there would be far fewer issues.
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