My husband hasn't wanted his adult children to know about his MCI so for a year I've kept quiet but today I talked!!! and talked!! A big birthday is coming up and I had told him about my plans for a big party some time ago. He said he didn't want anything but just him and me on his birthday. He has grown children and grandchildren and I knew that would hurt their feelings so I suggested a family dinner in his honor. Nope - he wasn't interested and wanted me to stop planning things. OK so I quit but kept thinking I've got talk to his kids about his birthday b/c they knew I was planning the party. I mentioned to one of them that he didn't want anything but I didn't tell them he didn't even want them! (He says the grandkids get on his nerves too much now) Anway - this past weekend one of his children asked him how we were celebrating his birthday - she wanted to help with the party or the dinner or whatever he wanted. He told her to talk to me that I was in charge of his birthday...so she calls me this morning and very politely says she'd really like to cooperate with me if I'd please allow her and the other children to participate...I felt so upset that she would have the impression I was trying to cut her out. I love her! So I went to her house and sat down and told her what's been happening with his memory, inappropriate public behavior, etc., and that he had told me not to do anything to celebrate this year. I told her that I was willing to facilitate anything that would be fairly stress free for him. And that I was being open with her against his express wishes because if things progress she and the others will need to know that they can trust me. Of course, she tactfully asked if maybe I was making too much of things, expressed ambivalence about believing this, etc., and I told her I have all those same thoughts and feelings, and that I hope I am over reacting and that everything will be OK. I told her I was glad he seems like his usual self around most people most of the time and that no matter what happened he was still her same wonderful father inside of him. He did seem better to me after he'd been on Aricept a while, but I didn't know what that might mean. She did ask if I was giving him his medicine or making sure he takes it and I said yes. I also told her I knew that I was several months ahead of her in adjusting to these ideas and that I had no hard feelings about her ambivalence. BUT NOW - I have a terrible headache, I'm terrified about what my husband will do if he finds out, and I wonder if I should tell him (but he gets really mad really easy these days). I am so stressed!!!!!!!!!!!!
Just thinking-I believe you did the right thing. Families often don't want to admit to the problem and you are the one dealing with it day to day. I gather this is a second marriage for you. Our loved ones can act "normal" when they know they have to for a while. His family needs to know there is a problem so they don't start blaming you.
I agree with bluedaze - You did the right thing - they needed to know.
Since you were able to sit down with his daughter and explain things, I would suggest going back and telling her how important it is (for now) to not let on that anyone knows about his condition - that it would upset him too much if he thought his children knew. Then explain that he doesn't want a birthday party, and perhaps they can visit separately for short periods of time on different days.
I know how hard it is to go public about this group of diseases. I had to do it too, both with extended family (what little exists) and also with my local community. My husband doesn't have a clue that I've done this, by the way.
My suggestion is that you tell your (his?) daughter to tell the others what is going on, but that you also tell her that he prefers that no one knows so she can pass that along too. And since you've told her what is going on, make sure she also knows how you got the diagnosis. What kinds of doctors you have visited with, what tests were done, etc. My own experience is that most people have an easier time with the denial if they have some idea of what the process was.
I sometimes wonder if there is this much family denial if the diagnosis is cancer. Or major heart problems?
If I were in your shoes, I would get his doctor to write a short letter, and take it to the daughter you have already talked to and show her so she will come closer to believing his situation. I agree with Bluedaze, Joan and Starling as well, but I would tell each child myself, rather than have her tell them, unless you are not close to them. If I told one child and asked them to pass it on, the others would be hurt that I hadn't told them myself.
The children will be in denial, and you have to face that. It took a year before my son who lives too far away to vist would believe it. I considered that his problem, not mine.
My husband can only stand two or three people visiting at a time. If all the kids came at once, he would probably go hide in the bedroom! It's like a circus with all three rings full and they can't keep up with everything, so they shut down.
We have to remember, while we love our spouses (spice) more than anything, self-preservation is utmost. If we die, who will take care of them??? Our emotional well-being plays a very important part of our health, and we have to build barriers, because we must protect ourselves (and our health) to be able to take care of our dear ones. You have to do what you think best, and know that you have done your best, and let the rest go.
It would be great if your husband could understand the need for his children to know the truth, and that they will be hurt if they are left out of his birthday celebration. The one-at-a-time visiting could be the best answer for him. Maybe his doctor would be willing to tell him that his children need to know (if you have a good relationship with his doctor - who would do that). Either way, you made the first right step.
You are absolutely right to tell his children, they have a right to know even if he doesn't want them to. Sadly, your situation is all too common w/denial on his part and on theirs. But it's really all understandable, some things are just too much to accept--it takes a while--if ever. At least you're not in denial, too, as so many are. As others have suggested, you have to protect yourself first & foremost and you have to educate his family about AD. You, yourself, had to live it to believe it. Along with the other suggestions, you might copy Joan's blogs to give to her. One from Aug 23 where people keep saying, I don't see anything wrong, and #162 about being normal in public. I wish it were true that it's all about being a drama queen/king. Good luck, you are doing the right thing, and I wouldn't tell your DH at this time. He'll find out soon enough and there will likely be a confrontation then, but his children should know what is going on, absolutely! Think of how much worse they would feel if it all came to a head & they had no idea--then they'd be upset with you for keeping it a secret.
I am such a beginner with all this! Thank you for the education suggestions, and also about how to proceed with the other children. I am closer to some than others, and some live out of state but we plan to visit them later this summer. (yes - it's my 2nd marriage - we have been married 11 wonderful years and he is 12 years older than me) I am less tense today but my jaw is hurting where I must have been clenching it for the last 20 hours. Advil took care of the headache last nite. I am still scared but I feel stronger today. Thanks to you all.
JustThinking-You were right in telling his children. For over a year I helped hide my husband's condition from his children. Finally his neurologist said I needed to start telling people the truth. The MD said: "If I tell them he can sue me, he can't sue you". I told his daughter and I felt so relieved I didn't have to pretend everything was just fine anymore. His kids all said they would talk to the social worker, docs, etc. however nothing is being done and they are back to denying. He is in such a state of denial it is unreal. Now I tell anyone who is close to me, I can't hide it. He suspected I had told someone and he was angry but so what? The stress of living with dementia and then covering up is too much for anyone.
I agree Asy. I was keeping things from my DH about his sister. When he was diagnosed they found evidence of a small stroke and several minis. When I did tell him anything he would go off the deep end----It was like he didn't or didn't want to believe what Alz could do. I stopped telling him because I was afraid he would have a major stroke. Well now the you know what has hit the fan with his sister in Ohio and we are, more than likely, going to have go to Ohio and try to get his sister either in ALF or a NH. That is going to be one biiiiig hassle.
Jean, did I miss something? The last I remember (HA!) you were thinking of e-mailing her doctor to advise the doctor of the status of his sister, and that your DH didn't want to do anything. I don't remember reading an update. I must have missed it.
There is one thing I have noticed - although my husband can't remember what he did all day, or what movies he watched, he CAN remember when I tell him I'm going to bring him some doughnuts the next day!!! Selective memory???
Jean - I found the last post from you - the update. I just hadn't gotten to it! I think both of them have always known that they can count on you. That is why you are in the position you are in today. That rock and hard place. But you will have what it takes to make sure his SIL gets the care she needs and he will have you to take care of him. Just keep telling yourself it is the AD, it is the AD.
Mary I didn't post about what has gone on with my SIL but the nurse said they didn't have an e-mail address which I don't believe. It would take too long and take up too much space to go through it all. The main thing is there is to be a grievance hearing on or about the 15th. The woman from APS is going with my SIL but I don't believe the hearing will make a difference---she is going to have to leave the Seniors apartment. We are waiting to find out what the outcome is and then hit the road. We both have doctor's appointments on Thursday and I didn't want to cancel them because it takes months to get another one. Sometimes you have to put yourself first!!!!
Absolutely,Jean! My prayers are with you! I hope the doctor for your DH will give him the medications that will help both him and your ability to take care of him easier. And we all know we have to take good care of ourselves so that we can take good care of our spouses (spice).
Just Thinking - telling his family what is going on was the right thing to do. It is better that they know now instead of finding out about it later and learning that he has had it a long time. I have step-children also and my husband did not want them to know at all. They live half way across the country from us so we don't seem the often. One of the smart things that I did with all of this was set up 2 e-mail distribution lists. The first one was for family members and the second one for friends. I have used these distribution lists to keep everyone informed of what is going on and it has worked beautifully. The best part for me is that I don't have to call all of those people and keep saying the same things over and over - I also like the fact that I can think through an e-mail and make sure that I put everything that needs to be told in there. One additional positive "note" with the e-mails is that I kept them all and sometimes when I feel defeated and down, I go look at them and realize how much effort I have put into making sure that my husband is well cared for. That can really help a frustrating day when I feel like I am not suceeding at all.
therrja, What a great idea. I get so tired of repeating myself and then I can't remember who I have said what to. The best part is using the e-mails as a diary of sorts as personal validation. I think I'll start setting up my distribution lists. Thanks for the suggestion.
Some thoughts and things I have done on this topic: 1. put his name on the list at a NH that I know well (about 1 1/2 yrs ago), then sat on the front porch and told him, emphasizing that I will not be able to care for him as this disease progresses (as I have told him upon occasion); 2. arranged then took him to his mother's house (about 2 yrs ago)where we met with his siblings and their spouses whereupon he told them to the best of his ability ( with much of my help) what was going on and the decisions we had made, care, funeral, etc this way they had it from his mouth not mine alone; 3. told our children (who all live out of state) what was going on with their father, let them read the letter from the doctor who performed the 5 hr testing on him); 4. quietly tell people about his AD and request their patience.
This puts all things out into the open. Yes, I know I will run into trouble when the time comes to put him into a care facility (I'm not so dumb as to believe that they are going to believe me) but at least I have done what I believe is the best thing to do.
By the way, none of his siblings have offered to help, have him come to visit so I can have some relief, or even come here so I can go shopping, etc alone or with friends. It's all on my shoulders!
My FIL had this horrible disease. My MIL never told a soul. She protected him for years. We knew there was something wrong but not what it was. Three weeks before she died, she told me she needed my DH (her son) to take Dad to a doctor because he was getting so forgetful. When she died, we found out he had advanced AD was not capable of taking care of himself.
You did exactly the right thing.. If anything happens to you and then they found out, it would be terrible for them. There's no way to hide AD forever.
My prayers are with you and as far as telling DH what you did, let the kids bring it up. You did nothing wrong!!
How awful to have to do what you did, but how wonderful it is for you to have a strong husband who was willing and did take part in the decision. God bless both of you.
My daughters live near and have occasion to stay with my husband for short periods and have a first-hand look at part of the situation. Enough so, when I tell them things he has done they realize the situation is for real. Nothing like being "in the situation" for a while. The longer the better. Of course, he is on "good behavior" when someone else is around but still some things can not be covered up for long.
My husband has not been abusive, verbal or non, as a rule but he has physical limitations, mainly from his spinal stenosis that causes him to walk extremly bent over (much like a gorilla). Actually part of that may be the Parkenism.