Managing the Late-Comers

CindyBum

I wonder if anyone else has experienced this and has a good way to manage it.

As it goes, the cavalry has not come, except I've been super lucky to have one of my DW's sisters come give me a couple of respite days every couple of months, so it could definitely be worse. That said, now that I've updated folks with the info that my DW was accepted into Hospice, a few folks are coming out of the woodwork, desperately wanting to see my DW now.

I've had one come, who did nothing but complain about how hard it was for her to see my DW now and who kind of ignored her and cried on my damn shoulder the whole time. She's now calling me almost daily to "check in". Her stepdaughter is also finally coming to visit, but has been hounding me with texts about presents she wants to buy DW because, "she's just thinking about thing that will make DW be warm and comfortable", a thing I most certainly have never once considered. Lol.

What I can see from them all is their terrible sense of guilt that they haven't come before. With all of these folks, I have lost count of the number of times I've tried to work with them to arrange visits, only for them to never quite have the time. The stepdaughter couldn't even manage to find the time when we came to her town for a visit, which was infuriating beyond measure. I imagine I'll have one more sister, who's never been anything but difficult, try sometime soon, though she didn't even respond to my update about her sister going into Hospice. I really don't want that bitch here. Tell us how you really feel? ;-)

This is my question. Have any of you finally said, "No more visits"? How did you manage their terrible need to assuage their guilt, with what may or may not be enjoyable for you LO and which will draw significant emotional and physical energy from the caregiver…i.e. me?

While they may want to use a last ditch visit to not feel regrets about their earlier lack of interest, I'm not sure I'm able to participate in that b.s. anymore.

Victoriaredux

Kind of reminds me of award shows when the stage fills with a flock people we never saw on screen - sure they could be behind the camera wonders but I always wonder if a few just wandered in to take a bow and grab a free nosh .

If they don't make YOU feel better don't invite them . They may have "guilt"- that's their issue to work out on their own time. Or they may be circling for a cut of the pie.

We thought we knew the characters involved when a relative was dying - instead unknown people showed up to request items the dying had "forgotten" to give them . Even after death we got presented with checks they'd acquired . I guess they figured if they waited until after death it wouldn't be elder abuse.

You offered them time before - they declined. Treasure your time together.

Chance Rider

Would your DW recognize and be happy to see any of them? If seeing them would bring her comfort or joy, I’d suck up my own feelings (hard for me too do as I’m stubborn) and selectively set “appointments”.

I would have no problem telling people that you’re not accepting visitors at this time. Their guilt is their problem.

My husband’s daughter distanced herself from us over 25 years ago. Didn’t visit, call, or even send a card when her father was hospitalized with a broken back 15 years ago. We sent her daughter Birthday and Christmas gifts for 18 years without ever a thank you. I can’t imagine ever welcoming her for a visit.

Hard and hurtful situation for you to be in. I’m sorry and know you’ll do what’s best for your DW and yourself.

BPS

I have some of the same feelings. When my wife started hospice I sent a group text to her 6 siblings. I told them she was on hospice but that hospice for dementia is treated different than it is for other diseases because there is no treatment to stop so she might be on hospice for a year or more. I was trying to give them an out so they didn't feel there is a rush to see her one more time. I don't try and stop anyone from visiting but now I wonder what the real motive of anyone calling or visiting after so long. In our case a couple texted back once that they were sorry to hear that and a one sister that has visited a couple of times came to visit once after the text. It is kind of a catch 22. At this point I don't think my wife cares or ever thinks about them and I don't really want them to come, but for a long time I did want them to show their sister that she mattered enough to visit or at least call. It would have mattered before.

CindyBum

https://alzconnected.org/discussion/comment/263392#Comment_263392

Sounds like our situation. My DW is the oldest of 6. I tried so dang hard for years to get anyone from the family to come see her. Mind you, this is family that makes a huge show of how great they are and how much they love being around each other. I got one sister and her daughter to come. Five siblings and 14 nieces and nephews. I know if any one of them were sick, DW would be there for them in a heartbeat. She has done that for all of them her entire life. I wanted desperately to see them treat her how she had treated them — unconditional love and support and being there for them. Nope. She definitely noticed too, which was heartbreaking.

psg712

So so sad. My mom has two brothers who haven't seen her in years. One of them, whose daughter has repeatedly offered to bring him several hours' drive to see mom, finally admitted that he "is scared to see her like that." I will bet that the other brother has similar fears but can't voice them.

Mom is still at a point that she might be able to enjoy a visit, although she can't articulate her pleasure or remember the visit afterwards. But they won't come. I can leave that decision to them, but I don't know how I will handle their grief at her funeral. I try to keep in mind that they are men in their 80s, and in their generation men were not given permission to have feelings, let alone any guidance on how to handle them. Sad and frustrating.

Lgb35

I think it would depend whether your DW would even know who they are. If not, I would feel like it would be reasonable to tell them she is not taking new visitors due to it causing her confusion and is unsettling for her.

BPS

I don't have sympathy for those that say they don't want to see them like that. I didn't want to see my mom or dad in the condition they were in toward the end and had to make life and death decisions with no help. I don't want to see my wife in the condition she is in. There are a lot of things we don't want to do but that is part of being an adult. You do what you need to do. You do what is right not only what you want.

Sorry just a little flare up over hurting dyeing loved ones (past and present)

H1235

Well said!

SDianeL

I would say no visitors and ask that they respect your privacy at this time. I would also worry about some of their motives this late in the day.

trottingalong

I had a very close friend. She was my trail riding partner for years. We rode almost every day and when we didn’t, I was at her house (where my horse lived) cleaning stalls. Then she got terminal cancer. She was a feisty 74 year old. All of a sudden she had people calling her to come over, etc. she told them no. She told me that if they couldn’t come to visit when she was healthy, they sure enough didn’t need to visit when she was dying.

CindyBum

https://alzconnected.org/discussion/comment/263444#Comment_263444

My family has the same suspicions about motives. I don’t quite as much, but them trying something also wouldn’t surprise me. Good thing we locked all of our trust/power of attorney and will stuff down years ago.

psg712

https://alzconnected.org/discussion/comment/263418#Comment_263418

I hear you. I sure don't like to see my mom in her current state, but she is my mother and I'm going to be there and advocate for her as long as God gives me breath.

Her brothers not only don't want to see her this way, they also don't want to hear about her decline so they rarely contact me. I'm not harsh with them, but I don't sugarcoat mom's situation for them either.

Timmyd

It is hard to comment on the situation without knowing any of the people. I aspire to have standard for how I treat others which is unrelated to how I am being treated. The disease is horrible and damages some many people around PWD in so many ways. Anytime I see an opportunity to extend some grace and make some friend or family of DW feel a little less worse about the situation, I take that very seriously.

"be kind to unkind people, they probably need it the most"