I first called this post Holidays are Dreadful.
Well, they are. Not, of course, only for dementia victims, although many of them have lost a sense of the significance so they are actually fine, but for everyone struggling with loss. While everyone else is kissing and hugging with family, we are on the edge of our sanity, trying to put a brave face on all the well-wishing.
Like millions around the world, for us caregiver survivors, the celebrations have a dark edge we tiptoe around, while our friends and family try their best to make it better, and we pretend they are, because it is what it is, and there is no alternative.
But that was that post, and now i want to move from the dark and the pain to the light, if i can.
The gifts this long journey have given me need full acknowledgement. Hold on, it is a pretty long list.
I have learned to dance in public. Always too embarassed to get up and boogy, now i do, at the least opportunity. Especially in the care home, trying to help others to moments of joy.
I have met and grown to love my caregiving sisters, because we know each others’ hearts in special ways. This is a priceless gift.
Most of those sisters are people i would not, in normal day-to-day business, have had the opportunity to get to know. My life is richer.
I am slower to judge (still a work in progress) and most of the anger has been burned out of my soul.
I am learning to listen, not to the words, but to the person speaking, and this is glorious. Truly, really listening puts you into a glorious space.
I am unimpressed by incontinence. We come into the world as babes and now i see incontinence as an artificial fear. The people remain, despite the disability.
I am more inclined to speak my mind and heart, and damn the torpedoes, but less inclined to be mean about it.
Trust has always been difficult for me, too much and bad consequences, or too little, and ditto. Now i am much happier in the dementia world, and its framework, where you might get whanged if you are in the wrong place and say the wrong thing, but where people are right there, bold-faced, up front, they are what they are. I am learning to be so too. It is good and life is short.
I am spending many years contemplating how, as my love got more ill, he went out of his way to rescue earthworms, save spiders, and generally show respect for life. Which was a bigger change than those who know him now would imagine.
I have learned with great difficulty, and to my disbelief, that i am not special. Disaster strikes and you … cope. Or fall apart…. or do both! The choice laid on you could be slow or instantaneous, could be because of a diagnosis, a natural disaster, a war, but none of us are immune. And we don’t know what strengths we have until we need them.
I remember a dear friend of mine, lost to the cosmos too young, who would not put up with regrets about the past. What–Ifs are useless baggage and we need not drag them around. But we can listen undenfensively and unregretably to those voices woven through our lives, and every day is richer for them.
And that is just life and death on planet earth.
And in a funny grief-ridden way, I am content.
5 responses to “Seasonal Reflections”
Eloquent as always, you paint a vivid picture. It is sad the path of many with dementia, and sadder the altered existence of those most dear to them. The cobbled way we try to prop up their quality of life, is altered bits that we try to assemble into a “best case scenario” goal. A goal we aim at, but sometimes, often times, can miss the mark. So what do we do? The best we can, with what we have got to work with. The stripping away of who they are, and were, propels us into a world difficult to navigate, and almost impossible to endure. In my humble opinion, keeping Uncle Don safe is the priority. His awareness of what is going on is fading and so we, albeit reluctantly, must protect him as best we can, even if our hearts ache over the result. Know you both are never far from my mind. Hugs.
A paean to humility and gratitude, if there ever was one. I dread Christmas, and am still treading lightly around discussions of family good-times; thus my appreciation of your first title, and my pleasure at seeing the change to Seasonal Reflections.
Thank you Delores,
Thank you Delores, this is rich and profound, and a comfort to me, a fellow traveler.
Thank you for this beautiful reflection. I can’t imagine you ever being afraid of anything, much less getting up and boogieing, but that only shows a failure of perception and imagination on my part. We are all afraid of something. Yours is among the truest and purest stories of love, and thank you for taking us all along with you on it. It is sadly more rare between mates than most of us dare hope, but more often lived between parent and child, in either direction, as well as some of the professionals. The people who are fully present in hospice, extended, and memory care facilities are humanity’s saints, and you are one, Delores. Thank you.
Very touching words. What you share is a gift, Delores, and I am grateful!