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HangingIn · April 29

How would you handle this? A relative regularly calls me to check up on us, and I’m very grateful for that. But nearly every time I talk to her, she says to me that she’s so glad that although her husband has numerous health issues, at least she can have a coherent conversation with him. And every damned time she says that, I feel as though she’s telling me what a rotten life I have.

I’m reluctant to speak to her about it because I’m quite sure she has no idea exactly how her comment sounds and I don’t want her to stop calling. Of all my friends and family, she is the only one who calls me to see how things are going. I don’t want to hurt her feelings and I don’t want to appear overly sensitive, but I really, really don’t want to have to listen to my life being viewed so negatively. We’re doing our best to play this rotten hand we’ve been dealt. And DH and I are often (if not always) quite capable of having coherent conversations.

Jeanne C. · April 29

I'm sorry. People can be thoughtless. My guess is that, in her way, she's trying to acknowledge your situation. I'm glad you have a friend who continues to reach out.

ImMaggieMae · April 29

I would continue to do what you have been doing, for the same reason you mentioned. People drop away and stop calling and visiting because they don’t know what to say or they can’t deal with this disease. We have to hang on to the few that do call and just try to ignore remarks like that. It’s important to have people to talk to when we’re so isolated.

concerned_sister · April 29

If I were to try to imagine such a conversation, I'd probably start with the quote, "we don't know what we've got to it's gone", and I'm thankful it's not completely gone. I give thanks that we can still …

There might even come a down day to share, "Thank you for caring. There are days I miss …"

trottingalong · April 29

Just laugh and say “oh, we still have great conversations.” I really think most people truly don’t know that what they say may hurt our feelings. Some people are fearful of saying the wrong thing, so then avoid even talking to us.

JeriLynn66 · April 29

I'm sorry this happens. I don't know where you live, but down here where I was raised, we would end that story with "But bless her heart, she means well, her heart's in the right place". Surely it is because she still calls. Sending you hugs and wishes for a good day today.

Iris L. · April 29

My very close friend told me she was backing away and giving me "tough love" after I told her about my difficulties with my memory loss. People don't know what to say or what not to say. She is a nurse, btw. I guess she thought I was an addict.

Iris

ButterflyWings · April 29

@Iris L. that is just mean, or stupid. I am sorry you had to experience both the loss and insensitivity of a previously very close friend. What she said and did is not very loving at all.

@HangingIn maybe the next time she says that, you can just say "Ouch!" and not make a big deal of it (this time) but hope that she takes note. I agree to not just suffer in silence even though you don't want her to stop calling. I find we have to really protect our spirits and feelings. No one knows how truly heavy and emotionally + mentally exhausting this dementia caregiving is. If she doesn't realize how hurtful the statement is, let her know gently and if she cares, she will stop. If she doesn't…you will need to develop even thicker skin, or change the subject somehow, or maybe have a sudden need to answer the door (and end the call) when that line of discussion starts.

harshedbuzz · April 29

@HangingIn

I'm sorry. It's difficult to be on the receiving end of tone deaf conversations.

I'm a believer in teaching folks how you want to be treated. Options around that, without being confrontational, might start with looking at why she says this.

Perhaps she's unfamiliar with dementia as a progressive condition and doesn't realize symptoms can be subtle in the early and middle stages. Until you've lived dementia up close and personal you might not realize that many PWD are chatty— my dad was conversational until he died. I used to be irked by the people who asked if dad still knew who I was as that was some sort of defining line for personhood.

Perhaps she's thinking of you both but doesn't know what to say. Maybe you could redirect the conversation back to more pleasant topics being especially careful not to turn the call into a venting session.

Or perhaps, you could tell her how her off-hand comment hurts. She probably doesn't know. I like @ButterflyWings "ouch-approach".

HB

midge333 · April 29

I think your friend is acknowledging how much your situation sucks. I can understand that you don't want to focus on the negative but I think your friend is trying to be supportive. Most of us have experienced friends/family simply disappearing or if they show up, they quickly change the topic if we discuss our LO's decline. I am sorry. This is all so hard.

mommyandme (m&m) · April 29

my thought is… if you decide to mention how her comment makes you feel, however you do it, and she doesn’t call back… give her a call first and let her know you miss your conversations and ask if everything is ok in her world. If she seems distant or hurt, you can ask her if your response upset her, and you’re sorry if so, you didn’t mean to offend, it was a bad day…etc…and you really appreciated her calls and they help you not feel so alone. I know it’s not ideal to try to take care of someone else’s feelings while you’re deep in your own despair and dementia caregiving, but it might be a short 30 sec conversation that heals you both. If this relationship is important to you and those initial words come between you, being open and honest could bring an even deeper relationship you can trust.

To some this might be petty but sometimes the little things need to be cleared out of our thinking so we can move forward. I’m so sorry for all the struggles related to this hideous disease.

Iris L. · April 30

https://alzconnected.org/discussion/comment/207528#Comment_207528

BW, I don't think my friend meant to be mean or stupid. I posted as an example of just one of the CLUELESS things that were said to me regarding my memory loss. For about the first three years after I joined these boards, my postings were about how hurt I was over the many clueless things that were said to me. There were too many to count. I finally decided, I was not going to base the rest of my life on other people's CLUELESSNESS. By other people I include professionals who work with older adults and doctors. I had to let it go or I would be forever triggered and traumatized, I don't want to live like that.

Iris

WIGO23 · April 30

My sister in law says unsupportive things. For example, I have made a very difficult decision to move out of state near our daughter as my husband is declining. My daughter and son in law will help support me. They have been concerned for over a year that I need their help.

My sister in law said “0h, you will be back in a year. They don’t have time to help you”. And then she went on to tell me my brother, her husband, is “depressed” about our move because I am his only remaining family. I told her, I think the moving decision is good and I will be back to visit when I can. I love my sister in law, but she is indeed clueless and careless with her comments. She has always been this way. 🤷🏻‍♀️

ImMaggieMae · April 30

Wig023, does your sister in law and brother help you with your husband?

WIGO23 · May 1

https://alzconnected.org/discussion/comment/207694#Comment_207694

No—my brother’s health is precarious. They have a lot to deal with on their own.

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