Can others understand?
I think I know the answer… but friends and family are interested and care for me and my DH, but when they say things like “I understand, my mom had memory issues and I had to help her twice a week“ I realize they have no idea of what it’s like to be the sole caregiver at home for your life partner. We’ve not (yet) been for neurological tests as DH is so freaked out by the idea of a diagnosis. But he has memory issues complicated by heart issues (CHF), and the last months have been mostly hellish/sleepless with him getting shingles near his left eye with excruciatin g pain, then post shingles pain. It is getting better now, but it’s still on duty 24/7 since I never know when he’ll have a lapse and all practical items are on my plate. I try to keep up with my outer life — but sometimes lack of sleep makes it impossible. But I’m coping, finally getting some good outside help for him — just got aphasia diagnosis and that’s leading to some therapy that’s covered. I write all that to say, it’s a lot… though I know many here are under even much more pressure and harder roads. What I’m wondering is, is it possible for friends and family who haven’t had a partner who’s very impaired to have any idea what this is like? What do I do when they say “I get it, my cousin had cognitive issues “ etc? I know this is maybe petty but 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…
Comments
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I understand your pain completely. This illness SUCKS!!!
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It truly is very difficult for anyone who has not been in this position to understand it. And each individual has a different level of impairment, which changes daily. I suppose the only place I've found that this "understanding" has been of value is when I've had to curtail outside activities because of my DH's condition. They let me "drop out" without asking much more…not great, but it's the only thing I've found. YMMV
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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.
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Petra…. As an ‘other’, I can honestly say no I don’t get or understand it totally.
I get part of it- when mom had her urosepsis crisis, I was there 24/7 for several days getting her and step-dad moved, and then 12-14 hours a day in the hospital. Then rehab, and then we moved them to AL in November 2019. I’ve been pretty involved ever since, but not 24/7 and she’s not my life partner. This level is draining enough but I can’t pretend to understand your level.
My life partner doesn’t have dementia, but dies have vision issues and lots of conditions. There’s some caregiving involved, but not like caregivers of dementia. However I see the handwriting on the wall for my future as a caregiver. I’m not looking forward to it.Please do what you can to escape when you can- and that includes reading and chocolates.
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thank you all, it helps so much to read each of your comments— it’s amazing how much it helps to hear your replies… and to “Quilting brings Calm”— thanks for your post from the “other” side — I was there for years with my husband’s heart condition and lifelong learning issues and also my mother’s last year or two with cancer—none of that included dementia—but it was also terribly hard — none of it is easy, and I wish you the best possible future— I’d be horrified if my post made you feel at all left out — it sounds like you’ve had so much to deal with… we’re all in this together. After I wrote my original post it occurred to me that my friends and family must also have troubles that I can’t fully understand. So I suppose we just all do the best we can. I will surely adopt your suggestion of reading and chocolates!
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I try to remind myself that those who say that are really trying to say they care. And I can appreciate that.
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Petra- I wasn’t feeling left out. Just acknowledging that our journeys are not the same and answering the question you asked.
I’m going to guess that some people on the outside think they do know your struggles - and that adds to the frustration and sadness.2 -
I can understand from both sides…now. I used to assist my FIL about 2 hours every afternoon after work. He was 88 caring for my MIL with Alzheimer’s. I felt overwhelmed at the time. Now after caring for my husband with the same disease, I realize that I truly had absolutely no idea what my FIL was going through…until now. I also was one of those people who would say that I understood what others were going through. I really didn’t. I let it go when someone makes that comment because I know they think they do understand. But sometimes I do want to scream. Thank goodness I have self control.
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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.
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Thanks I just wanted to make sure, and I really appreciate your posts ;)
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I’m very grateful that this space exists— it helps so much…
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I don’t think my family gets it at all. I don’t fault them on that. I do think that people are well intentioned. I know myself that sometimes it is hard to know what to say in some situations. It’s impossible to know what it is like until you’ve been there. I find being a 24x7 caregiver of a LO with dementia is a very lonely place. I am so so so grateful for this space as I know you all understand, care, and are willing to help whether listening to someone vent, sharing experience or advising.
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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
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Elaine i had been wondering about you, am glad to hear from you though sad everything is progressing. You have more than a modicum of grace in very difficult circumstances.
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Elaine D I’m so sorry— that’s such a lot to deal with— and heartbreaking that you no longer have your DH as you knew him to be a support and companion with your own pain — I hope that you can find other sources of support as you go forward, including this space…
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This string was very helpful for me. I so agree that people who say they understand your pain really do not unless they have lived it. I am the sole caregiver for my LO, 24/7. His adult child has stayed with us now for maybe a month to help out, and it drives me crazy when the adult child attempts to provide unwanted advice to me who is living the nightmare 24/7. I sometimes feel like saying "you don't really understand unless you lived it everyday" but I don't becos I need the help. I know they mean well and want to help and just don't understand. They read all the information on the internet about the disease but its not the same as actually dealing with it.
I apologize for sounding frustrated.
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Thank you so much for this conversation. I can relate to so much of the dialogue and I am blown away by the compassion and understanding that is found among the replies and for each other. I am so grateful to have found you all. I will carry this conversation with me as I navigate my own feelings of frustration and loneliness. Thank you.
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@ElaineD
It's nice to hear from you even if the news is not what one would wish for you. I am so sorry things continue to progress for you both.1 -
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
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Thanks for your post, which rings so true to me, and the photo of that beautiful flower.
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I understand how you feel and how frustrating well-meaning comments can be. My relatives used to ask how my DH was doing. I would give them the details and always get the same responses … “I am getting so forgetful too. I did this and that blah, blah, blah … and forgot this and that blah, blah, blah.” I used to just about cry after talking to them because they acted like what my DH was going through was totally normal because they were getting forgetful too. Now, I don’t let it upset me (most of the time anyway). When they ask me how he’s doing, I say … we’re doing good; taking it day by day. That doesn’t open the door for them to tell me how forgetful they are getting too. I do know that they think it somehow makes me feel better to know they forget things too.
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every comment you made about what can be irritating about what people say was spot on. I was speaking with my sister-in-law just the other day. She’s a retired nurse and she wanted to remind me that my husband who has COPD could just be dealing with low oxygen, I really tried hard not to show my irritation, his oxygen levels run 97 and 98% consistently, he’s not on oxygen. So I gave her some examples of what he does and says, and I said it’s not a lack of oxygen, he sounds just like his mother. She means well, but this has been going on for years. It didn’t just start yesterday.
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Lovely. Both your post that says exactly how I feel about this, and your precious needlepoint. Forget me not. Yes, this entire thread is so poignant and true.
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@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.
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THANK you — you said many things here that resonated, and I have just been realizing that I don’t even want to explain everything that is happening — it was good to hear your take on all of this. Thank goodness for this community!
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(I mean I had been wasting energy trying to explain to friends and family “how we’re doing” and I feel better saying less, and keeping energy for the important tasks. And because of all of you I am more aware of how others are often just trying to be supportive, so I can appreciate that even if I don’t feel they understand my situation. And as Howaboutnow said, even here on our board there are so many differences in our challenges. And yet we manage to help each other…)
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I spoke to my brother today. He always ask how DH is doing,then goes into what is happening with him,memory wise,. I told him today. Every time I you ask me I'm going to say fine. It's not but he doesn't really want to hear want to hear what is going on. There isn't really any sense in saying anything else. Probably wasn't the nicest thing to say but it was a rough morning.
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I had a coworker that asked about my dh so I gave her an update. She kept asking so I finally showed her a picture and she says, "Oh! He looks GOOD!" I finally realized that she just wants the "fine fine" answer, so that's what she gets now.
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I always just say, "We're hanging in there." Nobody wants the brutal details.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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