Unhelpful

CorrieG

I’ve received a lot of comments from my family and coworkers in the last couple of months. “You must be a saint!” “If I lose my memory, I’ll probably kill myself.” “Maybe the kindest thing would be if he died quickly.” And my favorite, “you need to get a man on the side- you’re still a young woman!” I feel angry hearing all this and even more alone.

It’s like instead of seeing my DH as a person with an illness, they see him as the problem, itself.

I’m soooo not a saint- I’m an okay wife who loves her husband and made a promise. He is a husband that is doing the absolute best he can and still endures my imperfections and impatience and loves me back.

Our life can be difficult but it’s not an unending misery. He’s only mid stage so we can still talk, eat dinner together, smile, sorta play cards, and sit on the patio. As he progresses, I hope we will find new ways to connect.

I’m not saying I won’t be relieved at the end when we can both stop fighting so hard and he won’t be suffering anymore. But, I’m still going to miss him and it’s still going to hurt. I don’t expect dating will be a focus of mine anytime soon.

I guess I can see they are trying to sympathize but wow, how hurt would I be if I was the one with dementia and overheard someone saying those things to my husband?

Side note: I'm so grateful I found this place to vent and commiserate. I work from home and check in several times a day. I use your advice and feel so much more prepared for the future. So thank you, truly!

SusanB-dil

Hi CorrieG - Those are not helpful comments at all. Probably a lot of us have heard at least some of that, or a version. Not sure it is even sympathetic, as much as it is more clueless. I found it is more often easier to just keep quiet around other folks that just don't know. DH and I care for his mom, and I also often deal with my mom, who thinks I am her sister, now. They are in different stages, but no matter what stage you find yourself with, a person still should be treated with dignity instead of as 'a problem'.

M1

The long and short of it is that most people don't know what to say. It's a conversation stopper, to be sure. And one of the reasons this is such an isolating experience. Hard on family and old friends, and a barrier to new ones (except in forums like this, with shared experience).

GothicGremlin

@CorrieG said:

I guess I can see they are trying to sympathize but wow, how hurt would I be if I was the one with dementia and overheard someone saying those things to my husband?

Right?

Like @SusanB-dil said, it's about dignity (among other things). I know in my sister's case, she's told me on many occasions that she "wants to be a person again." It took me awhile to figure out what she meant by that, but what she means is that she wants to be a full participant in society again. And that's Peggy talking, not the Alzheimer's. She would be crushed if she heard some of the things people say.

I suspect your husband would feel the same.

But yeah, I've heard many of those same things, and I think it's people wanting to say something and not knowing what to say. They end up saying something inadvertently hurtful. Now I only tell people on a need to know basis. Thankfully, we have this place.

FAHNJL

You're a good wife. This is the 'in sickness and health' part we signed up for.

dpw52

My husband has been showing signs of memory decline for the past 3 - 5 years. A year ago, he went through the testing and neurologically was given the diagnosis of MCI and arterial sclerosis. The neurologist said "there is no evidence of the scary diseases". A year has past and I have been watching the decline and trying to make a safe, secure, loving environment in our home. A week ago we went to his one year check up. The neurologist used words like "I'm worried about the memory decline" and actually used the words AD. This past week has been a blur. I have so many questions. I have been scouring the internet looking for resources for caregivers and resources for caring. I feel lost. Last night he caught me crying and asked why I was crying. I told him it had been a rough week, but he did not seem to recognize any reason. I need help knowing what to say and what not to say to him. I don't want to make him feel bad by saying something that would upset him. We just had our 45th anniversary and he did not remember it. I got out our wedding album and we went through it and I felt connected to him. I assume that reminiscing is ok but I shouldn't say things like "do you remember"?

I would appreciate any advice, experience sharing and tips that you can give.

Cosmic

Yup. totally agree with all the above. Cant remember how many times I've heard the angel comment.

Also agree, 60 years ago it was for better or worse. At the time it didn't mean much (other things on your mind) Now it comes into play.

All your real friends would not say anything as hurtful as those comments. You live your life with your hubby and let the others pound sand. Take advantage of every opportunity you have, hold hands, touch when you are close, just sit together on your patio or whatever, make every moment count. A classmate of mine has just lost his wife to vascular dementia and we talk / text often. He says how lonely it is. Love 'em while you have 'em.

Taking a small trip in the car is a great escape for both of you, even to pick up a carton of milk. Hold hands when you walk together. Others will smile at you to see an "older" couple so much in love.

CorrieG

Thanks, everyone, for the support and advice. Writing about it helps me deal.

These folks are family visiting overnight, so I felt they needed to know but I try not to tell people if it's none of their business. I guess I should either ignore them or tell them why their comments aren't helpful. Hopefully, they care enough to take constructive feedback.

Dpw52, I'm so sorry you're dealing with this! I'm glad you're researching how to deal with dementia and this site has a lot of really great tips. I don't usually ask do you remember? I usually say, "I remember this," and then describe my memory and how I felt. If he does remember, he will chime in and it often ends up being a fun discussion.

Jeanne C.

We haven't been on this journey for very long, but already I find that many people are clueless and uncomfortable facing dementia. I mostly ignore thoughtless comments and behavior unless it's causing harm. Even those who have had friends or family with dementia, unless they're on the front lines, just don't get it. Vent away, Corrie, because we have all been there.

@dpw52 welcome and I'm sorry you and your husband are going through this. I recommend posting questions as new posts so the amazing people on this forum will see your posts and offer advice when you ask for it. They have been a lifeline for me. I also recommend calling the Alzheimer's Association helpline: 800.272.3900. They have social workers available for free who can help get you pointed in the right direction.

SDianeL

CorrieG: My husband is about your DH's stage. My daughter said if it gets too much she will insist he go to Memory Care. I said not until I have to. She said she is worried about my heath and emotional well being. I said "he would do the same for me" -- that usually stops anybody cold that has something negative to say. I do believe he would do the same for me and that's what keeps me going. I think I would tell them that what they said was hurtful to both you and your DH and please don't say things like that again. I do believe they are clueless and don't know what to say.

SDianeL

https://alzconnected.org/discussion/comment/177162#Comment_177162

dpw52: My DH is a bit farther along. He has been showing signs of memory loss for about 3 years. And was diagnosed with possibly vascular dementia 2 years ago. Please read the book "The 36 Hour Day" if you haven't already. It helped me so much. A year ago my DH could no longer stay by himself because he can't use the phone. My DH lost his emotions and has no sense of humor, no empathy. We no longer go out to dinner because the menu is overwhelming and he doesn't recognize some foods anymore. He can't find words to speak sometimes. He's angry & agitated. He refused to shower. I used tips in the book The 36 Hour Day to help with those things. I think there is caregiver training on this website. You will need respite care soon. Maybe a family member? I use a company the VA recommended. It's called Assisting Hands. In our area Visiting Angels gets good reviews. They do have locations nationwide but not everywhere. Get a DPOA done as soon as possible. About a year ago my DH could no longer sign his name or understand what he was signing. I have used it many times. In the last 6 months my DH has exhibited many more symptoms. Can't remember grandkids names, can't understand relationships & calls his grandson his daughter's brother. He is having something like hallucinations at night. He us sound asleep, and jumps out of bed looking for something that's not there. It's like he's sleep walking. He went in the closet instead of the bathroom. When I got up to help him he said "I got lost" I told him he was just dreaming. That behavior made me realize it may be time for some medication. I would suggest making a list of his behaviors but don't let him see it. Then when you speak to the Neurologist you can tell them specifically what he's doing or not doing. I found that my DH masks his memory loss by compensating when we are at the doctor's office. A list helped me communicate with them. You are right about long term memories to connect. I try to talk about our RV travels. I tried talking about this Marine Corps buddies he served with but he looked puzzled so I changed the subject. Routine is key. He's so much better with a routine. We have breakfast together every morning and "toast" our coffee cups. We may have to toast more than once because he doesn't remember whether we did it already but that's OK. Someone asked how we were doing and I started to say taking one day at a time and I changed it to "taking one minute at the time" I make lists. That seems to help me stay in control and stay calm. Doesn't always work but I'll take it sometimes. One important tip. Don't argue. You can't reason with someone with memory loss. They have no logic or reasoning capabilities. They also want to remain useful. My DH has his "chores" and if he's unhappy I ask him to help me with something. Works sometimes. I know you feel overwhelmed. It's heartbreaking and terrifying. This forum is a life line.

dpw52

Thank you for the wisdom, support and comments. As I read through some of the comments posted, I see my present life and unfortunately get a glimpse into my/our future. I am trying very hard to stay in the moment and remember that no matter what the disease takes, my DH is still the gentle, kind and loving person I fell in love with almost 5 decades ago. I have been struggling with bizarre behaviors and knew something wasn't right. Ignorance wasn't bliss. We argued, lost patience with each other and struggled with time "wasted" on looking for common items like his wallet, glasses, keys (when he was driving). It was awful. We fought more in the last 2 years than at any other time in our life together. Frustration was a common emotion in the house. At least now, I have a network of people who truly understand and can offer support and advice that is on target. With understanding our new "normal", I feel that I can make this journey better for both of us. He may reach the point where he doesn't remember me (already had one incident where he did not know who I was for about 2 hours) BUT I remember. My goal is to make him as happy and comfortable at the end as we were in the beginning. We still hold hands, cuddle on the couch and take our daily walk. Never before has Carpe Diem seemed so relevant. Thanks again to all of you and for sharing your experiences.

eaglemom

I really think those comments are from people whom think they have to say something, then they say it without thinking it through. I'd prefer people say nothing rather than something like that!! On a personal note, any guesses whom makes the worst comments about my DH? His mother! She is so clueless, and I'm being very nice here!! "Has he gotten better yet? Why doesn't he remember things? Can he put his socks on?" Those are just some highlights. I limit her time to talk with him because she always says "but he sounds so good."

I try to let the comments roll off my back, but sometimes I just look at people and wonder!

eagle

ButterflyWings

dpw52 - such a great attitude to have. Carpe diem indeed! My DH and AD have taught me or reminded me, that today - this moment - are really all we truly have. So, I try to make the most of every day and find (or create) something good in it.

Yes, for us too...there was a time just before diagnosis when we both thought maybe we were breaking up? There was just no rhyme or reason for the disagreements, frustration with each other, and new sense of pulling in the opposite direction after so many years of total compatibility and amicably sorting through things together as needed so as to end up on the same page, usually in a very short time.

eagle - the immediate family comments over here are tone-deaf and just the worst. It seems like with just a tiny amount of effort they would get it and understand a bit better. But as I've said before (learned it here) those who are useless, are useless. Like the old beer commercial used to say: "why ask why?"

Iris L.

IMO,not much has happened over the past decade as far as raising awareness about the nature of dementia. Fundraising goes toward seeking a "cure". Meanwhile, care needs continue. I'll expect the same questions and comments for a long time.

Iris

harshedbuzz

People say dumb sh*!. Given your ages, I would expect your peers would be more prone to ignorance on this subject and freer with their "advice". Sorry.

Having raised a child with special needs, I was so familiar with the sort of ghastly things people say, that I was kind of past caring. What other people say is more about them than you at a time when it really isn't "about them".

Ironically, two of the loudest members of mom's circle of "save yourself" chorus were two contemporaries who'd been primary caregiver for a particularly difficult parent with dementia. These were folks who were formerly close to my dad. One was my dad's brother's wife and the other was a dear couple who my dad set up in business and lent their home to one spring when they were "between homes" because of construction delays. They came to the situation with lived experience, albeit not a spouse, and suggested placement as soon as dad was diagnosed having gone through hellish times themselves trying to honor a request to keep someone "home" while raising their families.

HB

CorrieG

I had a good chuckle about 'useless people' and people say dumb sh*t." Thanks for that.

My hope is to keep my husband home as long as I can and to get support from people who will be truly supportive. My sister and I bought a house together knowing that we would need to support at least our mother and my husband. She is coming here to live in a few days and I think having an 'insider' by my side will be truly amazing.

I do thing MC needs to be an option when my stress level and the severity of the illness make living at home counterproductive but I hope we have a few years, before that happens. At the very least, this has helped me be more circumspect in what I say to other people. I know I've been clueless and given poor 'advice' more than once in my lifetime.

Grateful52

Hello New Family! I just found this site today and after browsing through some discussions, I have already been so enlightened. My DH has been diagnosed with mid to late onset Dementia as of 2021. He is still pretty independent thus far. However I've found that coping with the mood swings and agitation as being more of a challenge than the memory loss. Somedays, he's himself as if nothing is wrong and other days it's just not him at all. He's not wanting to go anywhere or socialize. On the few occasions when we do go out or attend church, he really seems to enjoy himself. He no longer drives and I know that has really affected him greatly. Just a little venting and look forward to visiting and learning from site.

CorrieG

Welcome- so glad you’re here! I agree the mood swings and agitation are much more difficult to deal with than simple memory loss. And for him, slowly losing his independence is such a blow.