Here is the situation: Kevan was called by a son and invited to visit this Monday, Tuesday returning home Wednesday. This call was made over a week ago. As the time grew closer for the visit I noticed Kevan was sleeping more and complaining of pain around his ear and trouble with allergies. This morning I asked if he was concerned about visiting and he said yes. I told him that he didn't have to go if he was sick. He was concerned that our son would be upset. I assured him that it would be alright. He called our son and cancelled. He then slept from 09:15 to 11:20. This afternoon he watched tv and slept off and on in his chair. When I checked on him at 16:30 he was up beat and happy. I asked what was the change and after some going back and forth he finally admitted that after he decided to not go he felt better and " GUESS WHAT" allergies symptoms GONE, Head pain GONE!!! Two other sons want him to go and visit!! How do I get them to realize just how difficult this is for him? As far as they are concerned I am over protective and I exaggerate how this affects him! I don't want to keep him from them but I don't want him suffering like he did this last week. He doesn't want to hurt them so he says yes then this happens.
I agree that you don't want you to come off as the bad guy - IMHO Kevan is at the stage where he prefers the familiar and routine, and visiting his sons, as pleasurable as that might be, takes him out of his comfort zone and gives him stress. I think his sons need some education on how to deal with people with dementia, so a family meeting might be appropriate.
I don’t know about FTD, but with AD, it’s all about routine, consistency and familiarity. What was proposed here was not just stopping over at your son’s house for lunch or something – it was a two-night visit. To your husband, this might have seemed like being asked to climb a mountain.
Does your husband ever leave the ALF? To go for a ride or out to lunch or for an ice cream? If so, couldn’t your sons do that with him? And if one of them lives close by, maybe an hour-long visit to that son’s home might be nice, but with no big fanfare ahead of time.
Our sons all live over an hour drive away. My daughter and I take him out shopping and for lunch and she takes him to watch the boats. He says he would like to come and visit me for a night but I am not comfortable with him. He has been so mean and aggressive to me. He says he is comfortable with me but not with them. This evening he decided to send them an email to tell them he can't go over night anymore and how it makes him so upset and sick. I am going to see him tomorrow and we will talk about this email. It has to come from him or his Doctor not me, that's the only way they will accept it. Maybe not, they never accepted the diagnosis from the testing Neuo-geriatric Psychiatrist or the geriatric Psychiatrist or nurse. I hate to see him so upset. I know he would like to go with them but it has been years. 4 or 5 years ago he wouldn't visit them unless our other son who lived near us at the time was with him. I guess it will all work out. If I have to I will get the Doctor to write a letter that I can send to them. I have tried the family meeting thing twice now but they just won't come. Their loss.
He has AD as well as vascular and fronto. So it is all over the place. With fronto it is structure and familiarity and activity. He hates change. Even taking a different route to coffee upsets him.
I think you answered your own question. You said: “With fronto it is structure and familiarity and activity. He hates change. Even taking a different route to coffee upsets him.”
As far as what to do now, why do anything? Your husband has already cancelled the visit. So no further explanation is necessary. If your son insists on an explanation, your husband can just say that his condition makes it stressful for him to leave the ALF overnight. If the invitation is extended again by any of your sons, your husband can thank them kindly, but say that because of his medical condition, he prefers not to stay away overnight. There is no insult in that.
From reading your posts, I see how difficult your husband can be. He is lucky to have you on his side in this. And BTW, it sounds like you and your daughter are giving him some very nice outings. How fun to have lunch and watch the boats!
Thanks for your support and suggestions. I can't imagine how he feels. It must be terrible to be so upset about a visit like he was to go on. We thought nothing of taking off on short notice to travel across Canada or down to the States, now he has difficulties like this. I just hate to see him so upset to the point where he becomes sick or in pain. He still has the ability to decide whether to go or not but doesn't connect the illness with fear of the now unknown. It will be easier to help him realize what he needs to do when these symptoms come again. Now I know the reason for them. He will be writing to the family as he wants to tell them himself. He says he has to think about it first. Formulating his thought to put on paper is now becoming more difficult for him. He now struggles to find the right words in conversation. Thanks
Kevan has had two god days after cancelling hid days away. He sent a letter out to all our children explaining how it affects him. He wrote a very good explanation and is settling down again. It's a good thing he didn't go as our son had planned to take him to the outdoor celebration. I know that would not have been good. Kevan can't handle lots of noisy or large crowds. When will these boys ever learn!!