People don't understand

JDancer

This is mostly a rant..

I saw a neighbor last night that I don't know well. When I explained who I was, he said that he knows my husband (stage 6) and "talks to him all the time." My husband spends time on the front porch during warm weather (it's been cold for the last 3 months) and talks to people who pass by. I mentioned that my spouse has dementia and I got a blank stare from the neighbor and another comment about their conversations…WTF??? Why are people so clueless??? How would you have replied? Today I thought of several snarky replies, but it's probably best that I was speechless.

Thanks for listening, I know you folks understand

Bailey's Mom

None of my neighbors realize that DH has dementia…he can have a perfectly normal, superficial conversation with someone and then not know how to read the dials on the clock when we get home. As long as the conversation doesn't involve any problem solving or anything remotely complicated he can pull it off. I really thing that most people don't listen when other people are talking anyway! It is very frustrating.

Bailey's Mom

midge333

My wife still "presents herself" well (groomed and appropriately dressed) and fools most people until they actually talk with her a while. It baffles me how some parts of her cognition still seem intact when everything else seems gone.

Windsock

I understand what you are experiencing. Even when I talk with my closest friends about my LO they many times just say nothing and change the subject. I was probably the same way before living this nightmare myself…………I wish I had been more informed and compassionate

Stan2

In casual conversation with strangers nobody would realize my DW has a problem. Only those who know her well and spend prolonged time with her are aware. I , who spend 24 hrs a day with her, see a multitude of small changes in her behavior and her personality. I guess that is one of the things that make this so hard.

Chammer

@JDancer in your situation, unless there has been some harm to your DH from the neighbor, maybe say, "I'm glad you enjoy conversations w DH" Unless I missed something, it doesn't sound like neighbor was being rude w his silence , just maybe as flummoxed by your revelation of dementia as you were by his silence.

LindaLouise

A lot of people just don't know how to deal with dementia/Alzheimer's. I was thinking the other day about how many friends/neighbors have said that they will go out for coffee or a walk with me - then don't follow up. I have a few real friends who are reliably present for me, but it's surprising that many intend or want to, but they don't because they just don't know what to say or how to act. I agree with the comment that before this, I was probably not as compassionate as I would have liked to be, due to not understanding at all what this journey is like. My plan going forward is to follow up with those I really want to spend time with and cut people a lot of slack if their reactions don't feel right or are not what I expect/need. TBH - I'm still not very reliable to myself - sometimes I want to be alone, sometimes be with other people, and other times not sure what I need. The sadness and missing my DH are ever present (he is in MC), and sometimes I just can't face other people with "normal" lives. Such a rollercoaster of emotions~

JDancer

I think my neighbor was coming from a place of kindness, saying something nice about my spouse and treating him nicely when they see each other. I just felt so unseen and misunderstood.

Pat6177

Before my DH was diagnosed with dementia, I knew nothing about dementia. Before I started reading this forum, I had no understanding of all the issues and emotions that come along with this disease. And my first profession was nursing. I expect nothing from people that I tell. I’m always surprised by the people who do have some understanding. Usually they are people that have a LO with dementia. If I need something from that person, I will explain. Usually if I’m trying to make an appt, I explain that my DH has dementia, he can’t be left alone and I only have coverage at certain times. Then they make more of an effort to accommodate my time restrictions. Since dementia presents in so many different ways, even if the person has some understanding of dementia, it may be completely different from what my DH is experiencing. The person you are talking to might have known someone with FTD and they think all people with dementia act that way. And if your LO is still a calm, laid back person or maybe apathetic, they may be completely baffled by your disclosure.

BPS

I agree people don't understand even those that are close and see all the symptoms and are fully aware of her condition don't really understand and even though they can't do much to help sometimes I just want someone to really understand how I feal. My wife who I love (but not like I did) and resent for cheating on me and even when caught would never be honest with me (I find diaries that she hid or other things that show me that she was not being honest even after being told the not being open and honest after she was caught was doing more damage to our relationship). Now she has had two strokes and is in MC. When people ask how she is going I say not bad for someone with advanced Alzheimers and two strokes. I think most of the time they are asking out of social norms not out of truly caring. To be honest when I read some of the post here I want to say something but I don't truly understand what some of you are dealing with. My wife gave up driving easy and I have never felt like I was in any danger due to her condition. It amazes me how strong you all are. I feel sorry for myself sometimes but I am safe and comfortable just not happy.

Grandot

This is one of the most frustrating parts of the disease. I tell friends my DH has Alzheimer’s and they look at me like I’m the one with it. I just wish they would believe me and show compassion.