Both of my parents have dementia and are in memory care (as of last summer). As I have posted many times my family has pretty much turned their backs on them and me. As a result, I really do not look forward to holidays. Most of the higher functioning residents at the memory care get to go out for the day during most holidays. I do not take my parents out but instead go to the facility and visit them there. I have a lot of guilt about not taking them out but I am afraid I won’t be able to handle them both by myself. Yesterday I was the only family member there spending time at the memory care... all the other residents went out for the day or were left and had no family visiting.
Anyway, my brother is the only sibling (of the 3 ) who even bothers to occasionally call. He hadn’t called in over a month but will call for holidays. I brought my IMAC Pro laptop so that he could facetime with them. He decides to facetime in the car while he is going to look at some land that he is buying to build his retirement house on. So all kinds of talk about buying land, building a house, beautiful sunny day where my brother lives... cloudy here where we live. My brother speaks to my parents as if they do not have dementia... and it all sounds pretty good... my parents say ... wow.. is that a tree?, why are you buying land, where do you live now? I can feel the tension building as the conversation goes on... the picture is crystal clear on my IMAC… I know my brother is talking about things that are triggering my Dad (who is inexplicably having a very lucid day).
So when they hang up the call we are sitting outside and both parents start in on me. Why are we here? Why can’t we go with your brother? Does he know we are stuck in this place? Where are the keys to the car? Will our car make it to where my brother lives? Lets go! I want to buy land like that …. Etc etc etc. This is the hardest time I have had with them since they moved into memory care. I panicked and I just left and ran towards the door. I went out in the car and cried…. It hurts to know all the life they have sucked out of me and they think my brother will treat them better. I was the only family member that was willing to spend any time with them on Easter! My brother has no intention of them visiting… yet on the call he said.. come on down! I knew when the call was going on there was going to be trouble. There is a reason I only talk about certain things with them.. no major life events.
I want him to call them.. yet I don’t think I want to go through that again. He has called on facetime before and I didn’t get that result…. I think it was a combo of the IMAC PRO screen that looked very real time, my Dad having a very lucid day, and my brother cluelessly talking about buying this land, building this house.. look how beautiful it is out here in the country .. etc etc. It really really triggered both of them.. and they turned on me big time.
I just needed to vent and get it out… I guess this too shall pass. I am grateful at least they are in memory care and I could just leave when things got really hard.. I imagine how that would have gone if they still lived in their apartment.. ugh!
And sadly, your brother might honestly have thought that prattling on (video and all!) about something that used to ring dad’s bell was.....thoughtful or appropriate. Thinking only from the P.O.V. of shared interests, and zero insight into the dementia aftermath. 😣
Is there something in the air this spring?? This thread has some other Easter doozies. And my friends in real life mostly had a rocky holiday weekend.
Gotta say, my Easter was a bust, too. Started by explaining for the bajillionth year in a row that Good Friday is a workday for me. AS ALWAYS. Sometimes I think everyone has dementia!
Without going into the deep-dive, I’ll just say that Friday evening through Sunday evening was colored by A___’s drinking problem and B___’s drinking problem and C___’s pill addiction and D____ refuses to acknowledge that her son is developmentally delayed and E_____ has an eating disorder and F_____ is under federal investigation. And so on.
No one was drunk or wasted in our presence, thank heavens. But the conversations were exhausting. Just when we thought we had heard it all, someone would drop a new bomb.
The food wasn’t that great, either.
I think my brother knows they can’t leave the facility (on some level anyway).. they probably could leave for very short outings if I wasn’t all alone with them. My siblings all live many hours away so they have a good excuse for not being around.. or they think they do. He is not around dementia like I have been so I don’t think he realizes that they can’t process things like a normal person… you can’t have conversations with them involving any real life events. When I visit I try to bring music, or watch something on my laptop, read a book, walk.. anything to avoid having any kind of involved conversation.
I did text my brother when I was out in the car about their reaction to his conversation and how upsetting it was. I don’t think anyone can have any idea how it feels to be in that situation unless you are in it.. I told him but I don’t think he realizes how hard it is on me to be stuck in that.
My parents are very difficult to just have a conversation with so Facetime is the better option and he has been able to show them his dogs or the grand kids playing or something like that and that has kind of worked out in the past. I think all the talk about land, buying land, building houses.. really really triggering for my Dad (and my Mom as well). When my Dad retired he made a hobby out of looking at land and dreamed about buying land out in the country, building houses… etc. He is always looking at the paper to find land.. so you can see how triggering that was for him.
Sounds like some of you guys also had a bad Easter.. sorry to hear that. I do think holidays are difficult enough because of the pressure to maintain traditions and be happy. My parents really don’t know about holidays.. or if they do they quickly forget.. their facility usually decorates for each holiday otherwise they wouldn’t have any idea. Probably best just to treat it like any other day.
MsMadge, I think I'm going to need to put The Scream emoji on a shortcut key before Hoca finishes with us.
Gotta say you're a good story teller and like Gershun I had a chuckle - I hope you enjoyed leftovers today
Easter at hoca was no picnic either - they did absolutely nothing to observe the occasion and only the same family members who are there every Sunday anyway came for lunch
Short staffed both day and night shifts - a couple of family members were trying to voice their concerns on staffing but there was no management on site
The day ended with a deceased resident being rolled out the front door through the tv room full of residents
Fortunately there was still an order for a breathing treatment for mom as she was sounding pretty congested and so I stayed with her past bedtime so she wouldn't pull the mask off until finally I took it off and went home exhausted
Katie, so sorry about that experience you had. Unless people spend a lot of time with someone with dementia they haven't got a clue. I remember my sister suggesting we bring Mom to her place for Christmas. I knew it wouldn't be a good idea for various different reasons which I wasn't going to take four hours out of my day to explain to her. So I just said sure, but you'll probably have to take time out of your meal extravaganza to go get Mom dressed and ready, Mom had refused to shower at this point so you can imagine her state of dress would have been. Then drive her to your place and then drive her back again. I guess she had assumed that would be my job. She changed her mind pretty fast.
I think when you are the sole care provider in the family you have to lower your expectations of help from the family. It's the only way you'll survive. The anger eats away at you and distracts you from what's important. And trust me, I know of what I speak cause three years after Mom's death and I'm still griping away about it. I know I shouldn't but it's like that sore tooth that hurts when you touch it but you do it anyway. It's not worth it.
You and I certainly had a crappy Easter. I'm sorry you got the brunt of it. Even though you can justify that "they've got dementia", that doesn't make it all better. People without dementia can still get their feelings hurt from people who have dementia-EVEN IF THEY DON'T MEAN TO HURT US.
Here's our out of this world Easter experience;
Hubs asked on Friday if we could invite his sister, mother and aunt for Easter. Yeah, OK. Quick dash to the store and $77. later, I'm ready.
You need to know that my youngest sister in law and family used to live across the street from us. The mid-sister who was coming for Easter had given her niece a secondhand motorized kid's car. It quit working after a few months so the youngest sister just left it there. Unfortunately, when the mid-sister came over, she saw it through the fence. This mid-sister is a bit mentally unstable (anger issues) and "blew up". Why didn't they take it? Who is responsible for it? I want to get it back, right NOW!
She became completely irrrational and started screaming in our driveway. She called her younger sister and screamed at the top of her lungs that she wanted this broken car. My husband went out to calm her down and she took a swing at him, ripped his clothes, tried to push him down and hollered obscenities that would make a sailor blush!
He defended himself and gave her a black eye and a bump on her head. My poor MIL was out there trying to calm everyone down and then his aunt went out.
I had set the table with a bunch of appetizers and drinks. MIL asked for disinfectant to clean the cuts and scrapes. I stared getting very upset and gave the phone to hubs to call the police. (I could have called-it's 911 here too, but I get tongue-tied in Spanish when I'm upset.) Well, hubs didn't call-I guess family problems don't get reported to the police in Mexico. Some weird code of honor, I'm supposing. Auntie and MIL came in and said they all were leaving and were sorry. I never saw my SIL again.
Off they went and we were stuck with 5 pounds of BBQ'd Carne Asada, chicken and hot links, macaroni salad and cherry pie. I was too upset to eat.
We won't do THAT again next year (or any year!) I've got 3 years, 9 months left in Tijuana before I can retire and then high tail it outta' here. The farther away from this wackadoodle family, the better.
Ain't holidays grand? Happy Easter.
You might also want to join a support group of people caring for those with dementia. I found a local in-person support group and an online discussion board to be tremendously supportive. I hope you will, too.
Siblings sometimes just don't get it, or even care to get it. I speak from experience. There is a lot of good advice above, and I hope brother would be receptive.
Best wishes for you, and may God bless you in this trying time.
Continue to love them as you are, I know it is difficult but, there will be a time when they are not there. So love, so that you have no regrets.
I have similar issues with my brother. My husband and I have always hosted all of the family holiday get togethers. But with the recent responsibility of my dad’s care needs with Alzheimer’s and helping him get through a divorce and closing his business, etc. we’ve had to change things up. Thanksgiving and Christmas, I brought my dad to our home and did not invite any other relatives, just our adult children. My brother and his wife and my adult niece were upset that they weren’t invited but they weren’t willing to have anything at their place. So, as Easter was approaching I reserved the private dining room at my dad’s facility for a party of 12. I tried to put something together for Easter Sunday but everyone declined. I wanted my dad to have a holiday with his family. So I put the invite out again for lunch the day before Easter at my dad’s facility, I invited my dad’s side of the family only, and half of the family responded. The facility chef met with me beforehand and we built a menu together. It was a steal at $12 per person. The chef greeted us all with fresh lemonade and a Veggie platter starter. They offered unlimited beverages, clam chowder bread bowls, mixed greens with berries and slivered almond salad, and then plated each guest with ham, scalloped potatoes, green beans with onions/mushrooms/sliced almonds. For dessert, coffee or tea or any beverage plus peach pie, ice cream and or my dad’s favorite root beer float. My dad and everyone was happy, had a great time and the food was great. Afterwards, my dad had us all come back to his room to show off his new window bird feeder. I put reflective mirror film on the window so he could watch the birds but they can’t see him. Even though we all had a great day, I’m still a bit put off that my brother didn’t offer to split the tab.
However, our Easter Sunday potluck up at our ranch with the other side of the family was awesome and made me realize that bigger holiday get togethers are not always better. It was kinda nice to have someone else cook and prepare the day before for the half that don’t appreciate all that we do anyways. It felt great to spend quality time spent up at our ranch doing a family potluck with the family that do appreciate us on the actual day of Easter. The day was guilt free, as the facility sent me pictures of my dad enjoying all of the Easter festivities with his “facility family”. I’m learning.
But did he give any time during this conversation to asking how they were, or what they'd been up to? And even more, did he give any thought to how they might feel about this little glimpse of paradise he was treating them to?
It is incredibly unfair, not to mention ironic, that you, the only child present at the facility, were the one to get the hard time from your parents.
And some of the questions, such as why can't we go with your brother and does your brother know we are stuck in this place... well, only one thing for it. Next time, you'll have to say to them: "let's ring him back and ask him, shall we?"
Perhaps a chat with brother and a gentle reminder that seeing his life in full screen is not the best thing for mom and dad? I'm sure he meant well, and honestly, I know my DH face timing with the grands is hilarious--he doesn't know what to do or say....so sometimes he falls asleep and I can hear the kids yelling "Nonny!! Papa fell asleep while we were doing our dance! We can hear him snoring"--so I run to the rescue.
Just FT with brother when he is sitting in a spot that is VERY uninteresting--like the LR with very little background "stuff" to distract.
And I "get" how trapped you must have felt/feel as brother goes merrily about his life and you're stuck.
Be grateful you have ONE sibs who "sorta steps up". Many people are dealing with aging parents and completely MIA sibs.
I know my brother went to the DR for vacation and my mother heard about it from a 3rd party and she was so hurt--just b/c she never knows anything about his life. She didn't want to GO, she just feels totally out of the loop.
Sometimes, hoping that family members will see the light, get on board, adjust their comments, is not realistic. Would it help if you text brother 3 minutes before the session to say, Remember, no talk of them visiting or leaving the place. Perhaps, that would help, but, I'd still have a list of things to say to placate them, like sure, we can make plans for a visit, Let me look into the schedule, travel arrangements, accommodations, work schedule, etc. Is there any reason to not just keep them happy? Wouldn't they forget about it by the next day?
It's sad to have both parents in that situation. Do you have a support system with friends or colleagues?
Give him a call before his next holiday call and tell him what a touchy situation he creates for you with his unthinking remarks. Explain to him that your parents cannot leave the facility and he needs to stop leading them to believe they can. Be kind and thank him for calling, But be firm and tell him if he starts leading them to believe they can do things they can’t, you’ll cut the conversation short.