I'm sure this post has been written before, maybe someone will have the time to find it for me. Dh's brothers, sister and spouses are here for a few days to visit. I was hoping for some comfort and understanding, but instead got DENIAL. I heard he looks great! He seems strong. Heck, he's sharper than we are. I was so uncomfortable. I just wanted to run home and jump into one of your arms for a big understanding hug. I'm so anxious, my feelings are not asked about, my wellbeing is not asked about, I'm so frustrated after just ONE visit. I know you have all been there, and that in many cases, this is an expected reaction. I was just hoping for some comforting hugs and maybe a "we're here for you". "We understand" Nope. I texted a friend from the bathroom stall, during dinner, saying "get me outta here, I need a hug!" No that's bad.
Susan, big HUGS from me and others on this board. My DH has 3 brothers and 6 neices and nephews. No one will visit, no one cares about him or me. In my DH's situation, I think they are all afraid that they will get it too. They are also very uncomfortable being in his presence - they speak about him like he's not there (I've told them he understands everything he just doesn't remember), they don't treat him with dignity or respect. I have to beg them to come and then get told "sorry, too busy".
Susan, good thing I have strong arms, so you leaping into them didn't even throw me off balance. (-: Please feel a huge comforting hug. I've been where you are. Family are in denial for probably several reasons - don't want to acknowledge the extent of the problem, even to themselves, it's too sad. Won't really "get it" because they don't interact with your DH on a daily basis. Dementia patients are uncannily good at being "up" for brief visits. Don't want to acknowledge because they don't want to have to get involved in this care. As usual, the load is on your shoulders. Meanwhile, cyber family is here for you.
Susan I almost caught myself saying the same stuff. My neighbor's husband has LBD. He still drives and can carry on a logical conversation. An outsider would not have a clue. If I didn't know what was going on I would have missed it. I know it really hurts you to not have your knowledge validated by the family.
Even though my family gets it now. In the past, my father-in-law....whose wife passed away from dementia, thought that my husband just needed to tell himself that he didn't have dementia. Complete denial. As with some people they think if you don't address the problem, there is none.
Dearest Susan...I get the same stuff from my DH's family. I just chalk it up to "can't deal". It doesn't bother me anymore, I know what's going on and I don't have to deal with them very often. The last time his younger sister talked to him, she sent me an email telling me how good he sounded "better than he has in years". Well that goes to show you how oftern she talks to him. Maybe I'll send him up there for a month and then have a conversation with her. Hang in there, you have enough to deal with. Arms around you!
Susan, Somewhere, and many years ago I read a book in which the last line was "Don't let the bastards get you down." (Wish I could remember the book). Over the years I have always said that to my kids when the going gets really tough for them. Same thing here: "Don't let the B----- get you down!" as the saying goes. Hang in there and just know that you do have love and understanding from us at this site. Wish I could give you a real hug but a cyber one is here for you ((((HUGS)))).
Hi all, today was even worse than yesterday. They just treat him like nothing is wrong with him and ignore me! After a nice lunch out (he had a 4 hr pass) Jim wanted to go to the Nursing Home that we are pretty sure he will be transferred to. He was anxious for everyone to evaluate it and for them all to see where he probably would be until the VA has an opening. We pulled up and got Jim out of the car and that was it! No one wanted to come with us!!!!! Jim was shocked and disappointed. Later when we brought him back to the hospital, they were going to let him go up alone!! I took him up. When I came down, like always I was teary. They all turned away from me. On the way home (we had two cars) I asked if everyone was coming back to the house to relax. The brother I was with said no they were all tired. It was 5:30????? Now I had heard another brother mention earlier that he had brought the brandy (a family tradition) but need tonic water (for Gin & Tonics). Then when I said something about stopping to see our house when they dropped me off, they said, just for a minute, the "girls" were shopping in the next town and then they had to get back to the motel. So they are all sitting around together having their brandies, and I'm here with you guys. And you know, after all the crap, I'm glad I'm hare with you. I am opting out of the trip tomorrow, sending my Mom in my place to watch over Jim. I'm exhausted, I will take the boys to the lake and relax. I'm so sad, no hugs, no nothing.
Art's brother use to call monthly but after telling him Art had MCI we have not heard from him. His brother is the one that lived with his parents the last few years before their mom killed herself caring for their dad. He is the one that has guardianship of their dad. When I talked to him back in February, his comment was something like "I guess I better stay away from Art and Carolyn'. Carolyn is their sister that was diagnosed in 2005 at age 55. His brother is between the two of them and has a load of heart/circulatory problems including a heart attack years ago.
So, yes, they are jerks and selfish when they pull the disappearing act or 'he seems normal to me.'
SusanL--Be grateful--they're only there for a few days. Soon they'll leave and you can do the same toward them as they do to you---"out of sight;out of mind". Only, you do it because you must focus on the important things for your family. I learned that my job as caregiver has to be about my caregivee--you have several. Even though you know his family doesn't "get it", you can't get yourself involved in fixing that. You can keep them informed (general terms)if you feel the need, but you can't open their minds. Don't tie yourself in knots even trying. Be thankful that they aren't staying a couple months and that they aren't actively interferring in your DH's care. My DH's one sister comes from out of state for 2 full months every summer. This year, while he's on Rx to stop smoking, she's providing "some cigarettes to tide him through the quiting." I'm glad she cares about him, but I'll sure be glad when she goes home!!!!
Dear Susan, as carosi said so well, they're only here for a few days. I feel for you, and I think taking the boys to the lake tomorrow is an excellent idea. I call that Grandma Therapy! Nothing better! Sending up warm thoughts and prayers!
Well it's too cool for the beach so the boys and I laid around in our jammies til late in the morning. Mom marched out of the house, as only she could do and announced to Jim's family, "Hi, I'm coming today". God Bless her, she has a sharp mind and at 76 she has remarkable recall. She will be sure to sing my praises, tell it like it has been with Jim's condition and my caregiving and God Bless them, they WILL need ADvil, lol. Jim was couseled last night on family denial and was better when I check in with staff before turning in. Very often because of Jim's full head of beautiful silver hair, he and my Mom have been mistaken for a couple with me as a daughter, LOL. So I told them they would make a lovely couple today.
Carosi, with help like that, I'd put up a "NO VACANCY" Sign!
Susan, it has to be heartbreaking for you that they are not supportive! I'm so glad your mom is there and took them on!!! <grin> and that you and the boys had time together too! ((((HUGS))))