Oh Honey. . . . As you know, both of my parents had dementia. What I learned in 18 years of dementia-tainted living, in no particular order:
~I cried a lot.
~I found I saved myself a lot of pain and argument by just playing ball in their ball field because it’s the only one they know now. To mix metaphors, her neurological intersection of Logic, Reason, and Memory is nothing but a mass of torn-up pavement, crazy orange barrels and detours. Just go with her detours. If she says there are a bunch of guys living in a single woman’s house, I suggest you resist the need to fix that bombed-out intersection in her brain. You can’t. It is literally, neurologically, destroyed beyond repair. There are literally potholes in her grey matter where logic and reason and memory should be. She can’t go there. There is no royal road to memory for her to drive on. She’s on a detour. So, when she brings up those non-existent men—just ask her whether they’re nice guys—do they keep the place up? Are they willing to do chores?
~The brain space where music resides is often the last to be ravaged. Often, if you sing an old familiar song to a person with dementia, they’ll remember the tune and all the words. They’ll sing with you. If you’re very lucky, you’ll “get them back” for a few moments.
~Dementia is a traumatic, exquisitely painful, prolonged kind of familial grief. I told my siblings that it’s like picking up a white-hot cauldron and not ever knowing when you’ll be able to put it down. Next week? Next month? Four or five more years? Tomorrow morning? You don’t know when you’ll be able to put down that white-hot pain. It is a long, excruciating, immensely stressful caregiving with no reward at the end—in fact, quite the opposite.
~In the end, I felt relief, and then I felt guilty for feeling relieved. And slowly, I kind of, sort of untangled the guilt, more or less. Sometimes, still, nine years later, I have flashes of guilt.
~Just know that you are doing the best you can. Your siblings and Dad—all doing the best they can. Tempers get short. You extend each other love and care. Impatience. Patience. Impatience again. All the feelings. No family really knows how to do dementia—we all just muddle through. Hugs. K.
Thank you for being so honest and heartfelt in this post. My Dad had Parkinson’s related dementia and I returned from working overseas several times with these same very mixed emotions, but when he died I realised how valuable every visit had been, for both us us. Remember your ‘real Mom’ , not this pale shadow that dementia has made xxx
Well, that made me cry. Really beautiful writing. I miss my Mom so much. Fortunately, she was lucid pretty much until the end. But, she was ill and weak and afraid. Like you, my brothers and our spouses took turns being with her. I remember one moment, after I had tricked her into drinking a protein shake by telling her it was a frappuccino, I lifted her out of her chair. My arms circled around her waist and my legs solid to the ground, she clung to me. "I gotcha, Mom. I gotcha." What an honor to be able to be there, to care for her as she had always cared for me. You're right, it's those moments.
You break my heart. You have put into beautiful words where and what we are at this stage of our lives. I've followed you quietly for a few years now, as your journey has mirrored ours (but for us France, not Portugal in the end), and I love reading you. But this one - wow. You have put words to all that I am experiencing too. Thank you, and sending love and tears.
I'm sorry that you're experiencing this endless grief as well, Julia. I wouldn't wish it on anyone. There are so many terrible ways to lose a parent, but I have to imagine this is right up there with the worst of them. Sending love right back at you.
My grandmother has dementia and lives in Iowa so I can completely relate to many of your feelings. I will be back to visit in April for the first time since we left the States. I don't miss the camo and scary deer encounters but it will be nice to hug those I love. I'm sure your help and your presence is greatly appreciated on your family farm.
Beautiful and powerful and hard.
Oh Honey. . . . As you know, both of my parents had dementia. What I learned in 18 years of dementia-tainted living, in no particular order:
~I cried a lot.
~I found I saved myself a lot of pain and argument by just playing ball in their ball field because it’s the only one they know now. To mix metaphors, her neurological intersection of Logic, Reason, and Memory is nothing but a mass of torn-up pavement, crazy orange barrels and detours. Just go with her detours. If she says there are a bunch of guys living in a single woman’s house, I suggest you resist the need to fix that bombed-out intersection in her brain. You can’t. It is literally, neurologically, destroyed beyond repair. There are literally potholes in her grey matter where logic and reason and memory should be. She can’t go there. There is no royal road to memory for her to drive on. She’s on a detour. So, when she brings up those non-existent men—just ask her whether they’re nice guys—do they keep the place up? Are they willing to do chores?
~The brain space where music resides is often the last to be ravaged. Often, if you sing an old familiar song to a person with dementia, they’ll remember the tune and all the words. They’ll sing with you. If you’re very lucky, you’ll “get them back” for a few moments.
~Dementia is a traumatic, exquisitely painful, prolonged kind of familial grief. I told my siblings that it’s like picking up a white-hot cauldron and not ever knowing when you’ll be able to put it down. Next week? Next month? Four or five more years? Tomorrow morning? You don’t know when you’ll be able to put down that white-hot pain. It is a long, excruciating, immensely stressful caregiving with no reward at the end—in fact, quite the opposite.
~In the end, I felt relief, and then I felt guilty for feeling relieved. And slowly, I kind of, sort of untangled the guilt, more or less. Sometimes, still, nine years later, I have flashes of guilt.
~Just know that you are doing the best you can. Your siblings and Dad—all doing the best they can. Tempers get short. You extend each other love and care. Impatience. Patience. Impatience again. All the feelings. No family really knows how to do dementia—we all just muddle through. Hugs. K.
You are always a great writer, but this one is...WOW. Sending you hugs, and also to your parents. Safe travels back.
Also, the photos are really powerful. 👍
Thank you for being so honest and heartfelt in this post. My Dad had Parkinson’s related dementia and I returned from working overseas several times with these same very mixed emotions, but when he died I realised how valuable every visit had been, for both us us. Remember your ‘real Mom’ , not this pale shadow that dementia has made xxx
I'm floored by this. Crying-type floored. Just... wow. You say the important stuff so SO well.
Love you.
This one hits home. Your words are eloquent and painful. Wishing you the best of this experience.
Lovely, you nailed it with the moments of ‘dragon treasure.’
As always, perfect.
How lovely and heartbreaking
Well, that made me cry. Really beautiful writing. I miss my Mom so much. Fortunately, she was lucid pretty much until the end. But, she was ill and weak and afraid. Like you, my brothers and our spouses took turns being with her. I remember one moment, after I had tricked her into drinking a protein shake by telling her it was a frappuccino, I lifted her out of her chair. My arms circled around her waist and my legs solid to the ground, she clung to me. "I gotcha, Mom. I gotcha." What an honor to be able to be there, to care for her as she had always cared for me. You're right, it's those moments.
This is absolutely stunning. Thank you for sharing…
You break my heart. You have put into beautiful words where and what we are at this stage of our lives. I've followed you quietly for a few years now, as your journey has mirrored ours (but for us France, not Portugal in the end), and I love reading you. But this one - wow. You have put words to all that I am experiencing too. Thank you, and sending love and tears.
I'm sorry that you're experiencing this endless grief as well, Julia. I wouldn't wish it on anyone. There are so many terrible ways to lose a parent, but I have to imagine this is right up there with the worst of them. Sending love right back at you.
You're so good at capturing the most intimate and subtle moments that will stay in your heart forever. Best to all of you.❤️
My heart is with you on all this. And I have been to Pizza Ranch. ❤️
This is absolutely beautiful. You’ve brought tears of...recognition? to these old-man eyes
My grandmother has dementia and lives in Iowa so I can completely relate to many of your feelings. I will be back to visit in April for the first time since we left the States. I don't miss the camo and scary deer encounters but it will be nice to hug those I love. I'm sure your help and your presence is greatly appreciated on your family farm.