Just need to vent and have someone listen.....

CStrope

So, This past week I made the decision and arrangements for Bob to go to a memory care facility on 4/1. By far the hardest thing I've ever done. I still work full time, and I finally admitted to myself that neither my job or my husband/patient were getting the attention they need and deserve. Something had to give, and since I'm not old enough to retire yet, I need to keep working.

So tonight, my son (30) stopped at a bar/restaurant in town to grab a bite to eat with his buddy, and the buddy's dad and step mom. Another woman that is friends with the step mom (I've known her for 20+ years also) showed up a while later. This other woman, Becky, started going on and on about how its so good that I'm placing Bob and that I took HER advice in doing it. I've spoken to her once in the last 3 years! Then she preceded, to my son, to tell him that Bob will end up dying by suffocation, because that's what happens to ALL FTD patients. She also added that Bob's FTD is because he used to smoke weed when he was in college!!! My son was so upset, he just announced it was time for him to leave, and walked out.

I am so upset. He should not have had to listen to that. Also, it feeds into all the fears I've had about how I've cared for Bob and my decision to place him. I'm always worried about what other people are going to say and how they will judge me and my kids, and this just made that all worse.

Sorry for the long post, but I needed to vent to others that are going through this hell.

Jeanne C.

I'm furious on behalf of you and your son. Truly POd. I suspect this Becky person makes everything about herself, but to insert herself into Bob's story is sick. I'm also frustrated about the lack of genuine information about FTD. That's a different soapbox I won't get on today.

You are a great caregiver for Bob. You're doing the right thing placing him and that's a decision YOU made so you can take the best care of him and yourself. You'll be his wife and advocate. I'm proud of you for all you do for Bob. Sending you continued strength.

CStrope

https://alzconnected.org/discussion/comment/202376#Comment_202376

Thank you for the wonderful response Jeanne, I needed that today.

FTDCaregiver1

CStrope- Can't say enough how terrible it is when others around us make it all about themselves concerning the decisions we make in caring for our spouses, including the excruciatingly painful one you had in placing your DH in MC. I felt my soul tear a year ago when I had to do it with DW, you have my respect, empathy and 100% support. Have a brother whom I love, once close, made it all about him as well and he eventually called me one night saying he didn't agree with my lifestyle and closed with saying it's not up for discussion. Talk about a pompas a##. You have enough on your plate without having to manage others' emotions as well. Stay strong, you're doing a great job!

GothicGremlin

I'm angry on behalf of both of you @CStrope and @FTDCaregiver1 !

Putting the most positive spin on it that I can - maybe their behaviors (especially the judgements) are based on fear of getting dementia themselves, or imagining themselves in a caregiver role.

Whether or not that is true, doesn't make it okay. It's very much not okay.

@CStrope - you've given Bob great care. FTD caregiving is not easy, as we know all too well. And, not everyone dies of suffocation - Becky showing staggering levels of ignorance. My sister Peggy's death was quite peaceful. She mostly stayed asleep (as she had been for the last several days), and then she just stopped breathing. I'm so sorry your son had to hear that, and please don't let Becky and others get to you.

@FTDCaregiver1 - your brother doesn't like your lifestyle and it's not up for discussion??? whoa.

FTDCaregiver1

https://alzconnected.org/discussion/comment/202750#Comment_202750

Love my brother but he's always had a narrow view of life, white/black and simply lacks insight and empathy, his judgement was over decision to move DW into MC and out of the home. Some people's emotional intelligence is very limited, he's one of them. Can't see the forest spite the tree in his face kinda guy....It is what it is. his cross to bear, not mine.