Can others understand?

Petra the mindless comments from others are wellmeaning but just that, mindless. Best to ignore because it takes too much energy to correct them or to stay irritated at them. The folks here get it. This forum is my lifeline in an otherwise very lonely world right now.

Petra, I am one who thought I knew all about dementia. My MIL had Alzheimer’s and I took my shift caring for her. My BIL lived with her and looking back I never had a clue what it must have been like for him. If he was still alive I would tell him. Now it’s me with my husband. I truly believe no one can know the depths of what we go through unless they have lived it. I just pray none of our children have to go thru this. It really is a lonely road.

Oh, Petra, your last line really got me: "it makes me feel lonelier when people think they understand but to me they have no idea what it’s like to have your life partner fading away"

We've been married for 62 years and now he doesn't remember most of it. And the hardest part is he doesn't care! He isn't a bit curious about what is happening to him..and he is a retired PhD medical school researcher and faculty member. Brilliant.

This is the heart of my grief…for example, my DH doesn't remember anything about my last job, not even the name of the college where I taught for six years! He doesn't remember our vacations to Italy, Germany, Ireland, all from 2012-2018. He only participates in activities and gets to doctors' appointments because I stay on top of everything. If he misses something (play practice today) he says 'why didn't you remind me'? I did, four or five times today, but I had a video conference with my therapist at the same time, so I didn't see that he hadn't left for play practice. And I just 'lose it' inside when he says I didn't remind him! My life as I've always known it, my body particularly, is leaving me, and at the same time I'm losing my life's companion and we're heading to both of us needing a great deal of paid caretaking.

All this while my progressive polyneuropathy is worse every day, it seems. I cannot walk, I am in constant pain, now my hands and finger tips are very numb, and even typing is difficult. I even have double vision now! And my DH is MY care giver! We are racing each other to what will be a horror show. I will never be able to give him any physical care, and right now he's the one who does the laundry and dishes.

I know I must accept what is happening to both of us with some modicum of grace. But mostly I fail.

Thank you for sharing, Petra.

Elaine

Hello, all. No, others can't understand. I am of the age where most of my friends have had a mother, father, sister, brother who has or has had dementia, or even a terminal illness. But as much as they care, most go home after their "shift". They haven't had to "give up " cajoling their partner to change his depends before coming to bed…because all the words won't make him do it. And knowing it will be another bed change in the morning. Or knowing that 3 hours of your life on any given day will be given up trying to get your LO ready to go to a doctors appointment

Words I have come to hate, even though they are well meant, include:

"Be sure to take care of yourself…" my self care is a 6.30 AM gym class, and a every 2 week counselor session, followed by picking up groceries, all with a hope of getting home before he wakes.

"I just read an article that…" yep, read that one.

"Have you thought about memory care…" no, hadn't occurred to me

"You took care of your late husband 30 years ago when he was dying of cancer, so you have experience...". I was younger, more energy, and he was still my partner until the few weeks before he died.

"Can't you find a support group somewhere…" yep, sure. The one at 10 AM? The one at sundowning time?

The list goes on.

I am thankful for my friends, who do still listen to my rants. I treasure their love. But no, they don't and can't get it.

I am thankful for the family members who understand that we have every intention of showing up, but may not be on time, and may not show up.

And, I am thankful for those who say, "I can't imagine what your life is like, but I am here for you the best I can be.

It's 6.30 AM, a non gym morning, and I have to go get an info sheet together to try to sell a boat, before my boyo wakes up and can't find the coffee.

One thing I do for my sanity is needlepoint, and I leave you with this pix of one small piece I did last year for a friend. It's a forget me not. You all will understand. Kathy

@Petra2024 Nope, i don’t believe an outsider can “know what you’re going through”. I do believe, those kinds of proclamations or statements are an effort to show understanding and empathy. But goodness NO, they can’t unless they have lived it themselves. I would say even within the group of us “partner-full-time at-home caregivers”…there is a wide range of experience.

I was told, upon meeting a new at-home caregiver that came for a few hours while i went to work: “oh, i know all about this”…and upon asking i would find their experience with it was caring for a friend’s Father “ who wasn’t as bad as your Husband” for a few hours a day for a few months. ARE YOU KIDDING ME? Someone who can go home, maybe spend time with their mentally in-tact partner or friends or even in solitude, and re-energize, engage in life without the gravity of their PARTNER slipping away from you as you desperately try to keep them cared for, safe, reassured while losing your mind in doing so….they can’t begin to fathom the differences in your experience vs their “drive by” experiences with dementia.

I stopped wanting to verbally illustrate for outsiders what it was like,,,,when i did try to explain, i ended up feeling more misunderstood and isolated. My loving compassionate best-friend, i consider a sister, was my sounding board. Outside of that, my words were brief about living with dementia. If others ask me, either because they need advice or help with dementia from a partner perspective or because a family or friend has it, i will always offer what I’ve learned. I just won’t need to further the talk with trying to make them feel what i felt—-at most “it is profoundly difficult in ways i can’t begin to express”. Moving on…I’d rather tell them things that seemed to ease difficulties (even if short-lived) over verbalizing the agony they may/may not live-out themselves. To some degree, going into the dark without knowing all that could lurk, feels easier….safer.

On the flip side, hopefully, i can offer compassion and empathy to others whose struggles i haven’t experienced first-hand, without those minimizing, sometimes infuriating, false-equality statements of experience. Writing now, the phrase “i feel your pain”…pops in my head. Maybe a better phrase is “i see your pain”. Being acknowledged may be better than risking reducing someone’s experience.

Wishing you the best.