Mary, follow your heart and some how sooner or later this will work out. Lets just hope that your daughter does not find that she will have regrets to live with in the future. Life is so short and none of us know what tomorrow will bring. You, to, should have no regrets. As the oldest child in my family I always tried to be the peacemaker.
Mary, I'm speaking from experience. You may want the whole loaf, but you're probably not going to get it. Try to be happy with the crumbs you are offered--it may, in time, even turn out to be a few slices. And when we're talking about kids and grandkids, anything is better than nothing.
I have come to the conclusion that no matter how much "educating" of your daughter and SIL you try to do, THEY DO NOT EVEN WANT TO TRY TO UNDERSTAND THIS ILLNESS, IT IS EASIER TO BLAME YOU FOR ALL THAT IS WRONG, FOR THE PROBLEMS DH HAS BECAUSE THEY THINK YOU DIDN'T TAKE GOOD CARE OF HIM OR WHATEVER IS IN THEIR IMAGINATION. You can drag a horse to water but you can't make em drink.
You have offered so many suggestions as to how you can meet with your daughter and see the wee folks and get Grandpa involved too. On the one hand, your daughter and sil are coming across as manipulative and selfish. At the same time, you are refusing to go to their house unless your DH can go along. So you both seem to be pretty dug in to your positions and until one of you says " uncle" nothing is going to change.
I know this sounds hard but, my goodness, you, Dear Mary, have been banging your head against a wall to get them to understand what is wrong with your DH and there are none so blind as those who will not see. They don't even want to see..My heavens what will happen, God forbid, if one of their kids becomes ill with something? Will they just stick their heads in the sand as if to say " if I can't see it it does not exist"?
I agree, take the bits of crumbs and get over to see the grandkids. Oh I forgot, your daughter wants " the whole family". See how that goes. We can all see how much you love your daughter and her family. But your daughter, quite frankly, needs to grow up before it is too late and she then suffer the regret that she surely will feel when her dad is gone and she realizes how much time she wasted on this tug of war.
I honestly think, were I in your position, I would be inclined to put the hammer down and deliver a bit of tough love to these two adult children who are behaving in a way that is causing so much stress and strife because they WANT THEIR WAY and to hell with what the real facts of the matter are. You deserve more than this. You are the full time caregiver for your husband and that job is tough enough as it is, we can all attest to that.
I still can't get past the reaction to the birthday card and necklace. Take a nice gesture by you for your daughter and she turns it into a guilt trip for you. Stop this.
If you have not been able to get the nail driven home to these two adults that your DH is seriously ill with a fatal disease then it may not happen at all and the loss is theirs and when she and he start to put out a pity party because " they just didn't understand" at that point, were I you, I would walk out of the room.
Honestly I don't mean to sound hard as I know this does tear you apart. It is just at some point you have to establish a boundary at which point this behaviour has got to end and it is for your own health physical and mental, and emotional'
One other thing you have mentioned and that is your daughter has often said that with regard to her father's illness that " you could fix it if you really wanted to"..I think if one of my 3 girls said that to me I would invite them to come and take care of their dad for a month and put their money where their mouth is.
I have no wisdom--my kids are 20 and 17. But I would be tempted to do whatever your daughter wants--which I gather would be for you to go to her house without your husband--and focus on the grandkids. Give up on trying to teach her or holding out for anything, just turn the other cheek.
Well, I never encountered this situation, thank God...but, I would go and see my grandkids no matter what. We get one chance to forge bonds and memories with them. It is not their fault that their grandfather has contracted a horrible disease and his mind is impaired. They are not going to remember that, what they are going to remember is that they didn't get to spend time with their grandmother.
Just remember, some day you may be alone......a widow......kids and grandkids are the anchor that keeps you on an even keel when you feel "lost at sea".
We know this disease very well, if your dh has hurt their feelings, even if they all make up, it is bound to happen again. AZ patients don't realize how hurtful they can be, and it doesn't stop. You may as well go ahead and mend your relationship for you and daughter and SIL. It doesn't make sense to stand by loyally defending the alz disease.
One of our sons had valid issues w/his father years before he was diagnosed, but we visited him. Finally, one day our son asked me to come visit him alone. I did. We talked a long time. Conclusion: son never wants to see his father again. I continue to visit son (he's not married; no children) and don't feel I'm betraying hb or did when he still was more functional. Visit your family w/o your hb. Keep those bonds intact. The disease seems to have taken your hb. Too bad family doesn't understand the disease, but....
Mary--it is clear that your daughter has her own psychological issues going on with your husband's illness. Anyone with a computer can Google Pick's disease/FTD and in 10 minutes get a grasp of what is going on. For some reason, she doesn't want to. I agree with the others, to focus on maintaining a relationship with your grandkids without your husband participating. This whole issue is apparently weighing on you emotionally and I think it will help you to work out a plan that you can live with re seeing your daughter and the grandkids and pursue it. It is challenging enough to do the day-to-day caregiving without stressing over family dysfunction as well.
My younger daughter still has issues with DH after psychotic episode at her wedding 6 yrs. ago, long before diagnosis. When I finally was invited to meet her two little girls at a nearby park when they were in town I was told that DH was NOT invited. I understood and went alone. Her husband brought the children for the visit and she was less than cordial when she came to pick them all up. However, a recent birthday card, the first one in years, had her return address on it, so now I know just where they live. I e-mailed a thank you for that and the picture of the new baby and mentioned that DH had been placed and that obviously the psychotic problems started a long time ago. I'm sure she recognizes this as an acknowledgment that I was wrong in defending his behavior earlier. One small step at a time.
I'm curious how you all handle see your spouse sad over being avoided by family. Not only DD and SIL but also his sisters and mother. He does have a brother and our son who call and stop by from time to time, but not very often. I wrote earlier about his mother telling him that she hated him. He goes through stages where he gets mad and angry, and then he get so sad about it. He can't understand how I can love him when "no one else loves him." This is the same thing that he told DD on the phone last weekend. This doesn't consume me by any means, it just is so sad to witness and I am at a loss for how to respond to him. He still has his memory for the most part and it is on his mind all the time.
My son has been talking with my daughter and trying to do things with her. She called me yesterday and told me that Son incouraged her to re-connect with us. He told her that DH wants to "mend fences" but probably doesn't know how. We had a good visit and she will try to visit next week. She still has some expectations of DH that I asked her to not bring to the visit. I told her that she needs to be aware that he might hide or not talk. I said that if this happens that I can't control it and that DH will be happy that she visited. I also told her that if SIL visited and gives DH a hug and says some nice things that DH will probably be very happy. She asked how to handle it with the children if DH acts rude to them. I told her that kids are resilant and to explaine to them beforehand that grandpa might act strange and that it will be because he is sick. I told her that this is how I would have handled it with her and her brother when they were young.
I told DH about the call and he seemed happy. Then, late last night, he told me to let him know "when those people" come to visit so he can leave. I ask him "what people" because I really had no idea what he was talking about. He told me "those people who called and want to visit." I put two-and-two together and figured that it was daughter. I told him that it was his daughter he was talking about and that he loved her very much, and she loved him. I told him that he better not leave because she was coming to visit us both. I reminded him that daughter and he talked on the phone a while back and that it went well. He kind of laughed it off.
Mary in Montana, Good Luck. I hope the children will see AD for what it really is, an uncontrollable disease. Good for you son...he is trying to help mend the family.
Three Cheers and Four Hoorays for you son who is seemingly able to get through to his sister. I hope your daughter and her husband finally come to understand how ill your husband is. If the grandchildren are really really little and Grandpa might scare them, not meaning to of course, that visit maybe should be short. I wonder if your daughter could make a little video of the kids to send to her dad so maybe before the kids come to visit you could review the cast of characters before hand and maybe that could make things go easier?
Daughter is coming to visit tonight with the two girls, age 2 1/2 and 7. She will be there for about 30 minutes. DH knows and at first was not happy. This morning, he asked what he was suppose to do during the visit. i told him whatever he wants, that he can sit and be quite or he can visit with the girls. He told me that the girls won't remember him. I told him that the oldest will and will be happy to see him. It has been almost a year. The little one had never seen us so much as the oldest one. DH keeps bring up how SIL treated him and I told him that this is not SIL visiting it is Daughter and that she didn't tell him the things that upset him.
Son told me that Daughter asked him what she was supposed to do if DH didn't talk to her. And he told her just to visit anyway that DH would be very happy that she visited. Son told her not to expect anything just to keep coming to visit and that DH would eventually start to talk to her again. Good advice, huh?
Yes..I hope the visit goes well an your daughter needs to grasp the one step at a time concept with him. Maybe if she understands it from the frame of ref of her small children getting to know a baby sitter..once they become somewhat familiar they will relax around her..same with her dad...once he finds a comfort level things hopefully will go smoother.
Our daughter came over last night for about an hour. She was alone. She told us that the girls went to the store with SIL. Step-son was at sports practice. She visited calmly for about 10 minutes and then started crying and asked DH, again, what she could do to fix things. She said that SIL doesn't knwo what he did wrong. She talked like it was all DHs fault. She wanted to know why DH doesn't talk to her. It was quite sad. I tried to keep quite and let them talk. DH did some yelling and daughter got on the defensive for her husband and they got a lot said. Then DH calmed down and started talking rather rationally to her. He told her that she can't fix anything because she didn't do any thing. She brought up the time when DH wouldn't hug grandson. Even though DH and I had talked about it last week, he did not remember. Daughter told him that it really did happen and that may be he didn't remember. I told her that may be she is putting expectations on how she expects her father to act and that when he doesn't "measure up" that she thinks that he is doing something wrong. DH reminded her about how he cooked her dinner for her birthday last year and we brought it to her house. Daughter said, "Yes, I remember but you didn't talk to me or hug me that day." He siad, how many fathers would have done that for their daughter.
This went back an fourth and then I told her that DH and I both loved her and her family very much. DH told her that they could all come to visit anytime they wanted. He reminded her that SIL banned DH from their house; but that DH did not banned any of them from our house. DH also told her that he really likes her husband and that he could be a really nice guy. He also told her that he missed having him around. He told her that it is just too hard on him to have people treat him bad. he told her that he can't handle it any more. She asked if there would be anytime when DH could forget about what happened. DH told her NO that only fools forget when people do bad things to them. I told her, and DH agreed, that they could all come visit anytime they wanted and that as long as they didn't keep bringing up the things from the past that we would all get along. DH told her that if she kept trying to make DH appologize for something that he didn't do that there would be trouble.
All in all, I think it went pretty good. I wish it would have been a quite visit with the children but at least she came over. I explained to her that we were not used to having our children be disresepectful to us. I complimented her and her brother for how they have treated us over the years. DH agreed with me. I told her that when SIL treats use that way that dad did not have the energy to ignore it anymore. Before daughter left, she told DH that she see things a little differently and that she can tell that DH can't handle the trouble any more. She gave him a hug and he huged back. He also told her that he loved her and told her good bye at the door.
Daughter got to experience DH getting very angry and not remembering. She also got to see him explain how he felt. Whether she actually sees the problem, I'm not sure. DH brought up at least 20 times about SIL wanting to beat him up in a park. I'm glad that she got to see how much he is dwelling on this. I don't think that she believed me when I told her how much he talks about it.
We also explained to her that when DH withdrew and didn't talk as much that he was doing it for her and trying to avoid problems. This was an eye-opener for her also.
I sure appreciate everyones comments and suggestions.
Mary-any chance of you getting a third party like your husband's doc to explain the disease to your daughter? It does look like she is starting to understand what is going on-a bit.
We're not that far along with the doctor yet. DH needs to see his doctor in the next few months and may be he and the doctor can have a "heart to heart" about what the doctor feels is wrong. The problem is, like others have experienced, DH is so normal at his appointments. Since I had the conversation with his doctor a couple of months ago, may be this will move the discussion along.
I'm going to keep your advice in mind though. When my mother was ill, I had to do this for one of my sisters. It worked really well.