What's the one thing that gets to you the most
Just curious. What is the single most difficult aspect of your LO's behavior that gets to you the most. For me, it is the constant vocalization of my DW. I know that many say that silence is even more difficult but that is hard for me to imagine. From the minute she wakes up until she goes to sleep 12 to 14 hours later she is constantly vocalizing. It takes on several forms but mostly it sounds like a whimper. I'm actually almost getting used to it but usually by 4 or 5pm my nerves are shot. Yes, I have airpods but they're not 100% soundproof nor would I want them to be since I need to hear where she's at for those times when I let her wander to another part of the house for a few seconds. I dunno, it's saturday, the football game is a blow out so far, she's asleep so I figured I'd ask.
Comments
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I would just wish that she would recognize me as someone trying to help her.
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For me it used to be, “let’s go!”
From the moment he woke up he’d start in about going somewhere, or going home. Go, go, go. Since he’s immobile, I’d use going somewhere as a way of getting him to cooperate with me in getting ready for the day. He doesn’t say, “let’s go!” as much anymore, but he has amped up the resistance to allowing me to do his ADL’s for him. That behavior is much harder than go, go, go!6 -
Mom has anosognosia and believes there is nothing wrong with her. She believes I put her in a nursing home because I am cruel. She doesn’t trust me and really just doesn’t like me. I think that is probably the hardest part for me. My mil didn’t know who I was, but she knew I was someone she could trust and that she enjoyed talking to and spending time with me. The repeated, circular conversations were annoying, but I would rather that any day over what’s going on with my mom.
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One thing that bothers me a lot is the repeated question. My DW will ask the same question 3 times in less than an hour.
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Hi @persevere and all
For me it seems to be the changes that seem to happen more and more frequently. Just as I am starting to find the right approach to deal with driving, or repeat questions, or talking in his sleep, or saying “I know that!” (When he doesn’t), to today thinking he in a hotel and we need to ‘go home’, his behavior changes and I have to stop and come up with a new way to be there for him! I just want this whole mess to stop for just a brief time so I can get my wits about me and be the kind, compassion and gentle wife he needs. Instead I am a frustrated teary b**** reacting in the moment!
All that said I am describing ME and my behaviors that get to me the most, not DH’s. Dear God, please give me patience!
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Good morning all.
For me I think my husband’s anosogosia is the most challenging/frustrating. His lack of understanding leads to anxiety and anger. He’s late 4 early 5, so I know things will change and get much harder. My stepson took his father for a few days over the weekend so I’ve had a break. Used the time to clear part of our garage, two truckloads to the dump. So a break, but not a restful one. Still, I’m grateful my husband can still enjoy his son’s family.
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Great question. So many things are hard and come up along this journey. My DH is now in stage 7, and just recently become incontinent. Just the last couple of days he is fighting me on changing him. This is pretty stressful and I’m still working on how to get him to cooperate. We have been through the constant wanting to go home and taking multiple drives a day or asking to go see Mom and Dad, and the constant moving things around in the garage and house. These have all been hard to handle, but the worst part of this whole disease is him not knowing who I am. I remember the first time he didn’t know who I was and how that scared me. And yes that one thing has made everything else hard. It was the end of our marriage and the beginning of just being his caregiver.
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My mom was in stage 5 when she passed, so not truly at the worst part yet. It was the anxiety … the calling me repeatedly leaving multiple tearful voicemails if I didn’t answer, the neediness if I wasn’t at the facility on her time schedule.
My step-dad had totally different symptoms -probably not more than stage 4 when he passed. With him? It was the paranoia, lack of education, and stubbornness that made it so difficult for me to manage their finances and medical needs. He had moved half their money ( all that had been intentionally made accessible to me in the beginning) to an account only in his name and then wouldn’t understand why checks needed to be written off that account to pay their bills. I couldn’t talk to anyone on his behalf unless he was sitting next to me giving verbal ok( because of no POA) so handling anything was much more complicated than It needed to be. Because he certainly wasn’t capable of handling it - nor did he want to, but he wouldn’t give me authority.
3 -
Dad and I didn't share a very warm relationship, but watching him morph from an unusually attractive, articulate and well-groomed man into some sort of yeti with crumbs in his beard wearing a tee with bearing remnants of last week's breakfast in stage 6 was hard to see.
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This may not help but this is why they verbalize:
Dementia vocalizations are disruptive sounds like screaming, moaning, muttering, chanting, or nonsensical noises common in later dementia stages, often signaling unmet needs (pain, hunger, anxiety, loneliness) or simply serving as self-soothing behaviors due to altered brain function. They can stem from distress, environmental triggers, or cognitive changes, requiring caregivers to look for underlying causes, reduce stimulation, use calming techniques, and recognize these sounds as attempts to communicate distress or internal feelings.
Identify the Need:Check for pain, hunger, toileting needs, or restlessness.Reduce Stimulation:Minimize background noise, turn off TV/radio, create a calm environment.Provide Reassurance:Calmly talk to the person, make eye contact, use touch if appropriate, and reassure them.Simplify Communication:Use simple words, speak slowly, and use gestures or pictures.Distraction & Redirection:Gently redirect their attention to a pleasant activity or familiar object.Address Environment:Use rugs, soft furnishings to reduce echoing, and create quiet spaces.Consider Medication.
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at this point it is DH constantly asking me to find brain pills that will fix him. He thinks the doctors are not reliable because they haven’t given him anything that works. He sees the prevagen or neuriva commercials and wants to know why he can’t try those. Because we have and it did nothing not to mention the cost of them. He has FTD Semantic variant so nothing available. He believes there is a cure but we are hiding it from him
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Diane, you are quite right. I do all of those things to try to determine if there’s pain if she is hungry, etc. and spend lots of time trying to soothe her. Keep things quiet. It pains me to think that there’s something I’m not doing that would make her more comfortable.
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The thing that most gets to me, with my dh in memory care, is the constant mental calculation of how long my dh will last vs how long the money will last. I do not look forward to the day I will no longer be able to afford to keep working.
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It isn't a behavior it is how long this has gone on and not knowing how much longer it will go on. Wishing it was over while at the same time knowing I will be sad when it is. Not being able to really remember the good times.
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sometimes the less you speak and try to direct the better the results. I see how the Hospice aid works with my wife. And a lot of times she’s just very quiet with some gentle direction. I find that helps too when I’m working with my wife on toileting and getting dressed and things like that.
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I will try being more quiet. He just started resisting me taking his underwear (adult diaper) off. Just another change and will have to work through it.
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I ditto what BPS wrote. The long slow wasting away of mind, body and abilities, the loss of my partner, friend, and liver. Not knowing how long this will go on is mentally difficult.
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That’s a great tip! I keep notes on my phone so hopefully I’ll remember this when the time comes. TY!
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hi everyone. I’m not really sure what to say because my situation is a bit complicated. My partner wasn’t diagnosed officially, but there is a possibility of beginnings of dementia. I believe the main thing that caused a lot of the issues we have was her drinking. Her whole family are/were drinkers and a few alcoholics but none of them will even acknowledge a possibility of a problem, all for different reasons. Everyone sees there is a huge change in her but I get the “there’s nothing wrong with me, I don’t need a therapist/dr” etc. it’s exhausting. And if it is something, she doesn’t want to know and won’t do any treatments. Not very fair to me of course, but she just doesn’t get it. How do you get a loved one to a doctor to get tested when they are so obstinate? Thank you for reading!
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What an interesting question and look at all the interesting responses, well here goes.
For me, at the moment, I think it is two part. First part is what is the most frustrating - DH standing in my way, filling the bathroom doorway, the bedroom doorway, the back door front door, laundry doorway the passage and the kitchen. My DH seems to know where I am trying to go and bingo there he is. He is so unsteady on his feet and moves so slowly I can’t get past him or round him and I just want to scream “get out of my way” but of course I don’t and then I feel bad inside for just thinking it.
The second thing is what makes me the saddest, that is not being able to talk with him and hear his lovely voice and hear some of his very creative and adventurous thoughts, to share our experiences and hear him talking with our children.
It sucks. 😥
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Right now, it's the continued wandering during the day. I had her mellowed for a couple of weeks, then his weekend she's up and literally running again, except now she's weaker and even more unsteady. I hate the stress of being on her every second of her waking hours, but more so the responsibility I have to make the best decision for her on how many more drugs to give her to see if I can stop this craziness.
I'm going to increase her dose of Seroquel during the day now, which pains me so much. But, she won't sit for more than a few minutes at a time and I am running out of gas in my tank.
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For me right now it is resistance to care. DW cannot dress, bath or toilet without assistance. I am committed to be there for her and provide the assistance. Much of the time, she just fights every attempt I make to help. The simple act of changing out of dirty clothes has become a dreaded ordeal.
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Poop and the cleaning up of the same.
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The constant heartbreak.
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💕
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It's the repetition. She constantly asks questions, and no matter what I might be doing, solving a problem or communicating with a health provider, she asks questions with such urgency that I have to drop whatever I am doing to answer the same question repeatedly. Sometimes only five seconds pass and she asks again, with the same words and exactly the same tone. What time is it? What month are we in? Where do we live? Who is the president? Where are we going? Why are we going there? Meaningful conversation is a thing of the past. I know I should be more tolerant but this is so intolerable. Nine years of this. And now she is losing her long term memory as well, so we can't even talk about the past and our 62 years together.
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please consider looking into depakote. It has been good for my DW
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Yes, sometimes DW is all over me. Just kind of hovers and bumps and tugs. It’s affectionate and annoying at the same time - lol
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our first test was with our primary doctor during a routine visit. If you tell them you suspect memory loss issues they have some very basic questions to the patient to see if anything is going on. Try it
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Anosognosia! !
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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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