For the past year and a half I have moved three time to try to be where I can spend time with DH. I am now close and pick him up every Saturday and return him on Sunday afternoon. Then I pick him up on Wednesday and take him home then take him back for dinner. His Ward nurse told me a few weeks ago that every time I take him away he is terrible to care for when he goes back. I have known for sometime that I would have to stop this schedule but I was afraid of his reaction and how it would affect him. He came on the week end and it was lovely. We had a really nice time. On Sunday night he asked me to come and get him on Monday morning but when I got they he was so nasty and mean. I asked him if he would rather stay there but he said no. He was no nice all day even shoving my hand away when I tried to touch him. He has been sleeping during the day and I was concerned that it was depression. Last night he took his meds at eight thirty , went to bed at nine and got up at eight fifteen. He felt great and was upbeat. I spoke to him this morning and told him that I thought that his coming home so often was causing him to be upset and he agreed. I told him it was best that he not come here and he agreed. He now knows I will say no if he asks to come here. I will be going to visit him there and having dinner with him once a week there. He says two visits a week is enough. This just breaks my heart to do this but it is good that he realizes that he needs to be there not here. He feels secure there. It's home now. Now I need to let go and just keep a close eye on how he is cared for. I feel so lost. So alone!!
Well, you're not alone, Jazzy, because you have us. And you have been an inspiration in building a pleasant life for yourself outside of the caregiving role that you do so well for your husband. Try to keep moving forward in your interests, your home, and your pet. It is hard, I know, but you are an important person, and it does not have to be…and in fact, should not be... all about your DH all the time. I'm throwing you the rope--here it comes! Tie a big knot and hold on tight. (((Hugs)))
Hi Jazzy, It's nice to hear from you again. When I read your post, what came to mind was Yogi Berra's phrase, "Deja vu all over again." Since you moved into your condo, you and Kevan tried the "staying overnight on Saturday night" experiment three times and every time you said it did not turn out well and there would be no more overnight visits. Even his doctor said no more overnights. I take it that this latest overnight was Kevan's idea. When he brings it up again, you just have to say no to him . If he insists on going, refuse to drive him. Stick to your guns. Just as you took control of the finances, you must take control of the decision about overnight visits.
I completely sympathize with your loneliness - I feel it, too. We dementia spouses have been hit with a double whammy. We have our grief about our spouses long decline and we also have the loneliness created by their loss, whether that loss is cognitive decline or physical absence. We can't do anything about the first problem - what is happening to our spouses - but we can do something about our loneliness. Elizabeth's advice is good. You should try to continue the activities you told us about in your previous posts: the mall walks, the Family Council, the church group and the patio garden. Grab the rope she threw to you.
Quote for the month of April. “As I get older, I just prefer to knit.” Tracey Ullman.
I have my one meeting tomorrow night, and just waiting for my soil to thaw to garden. I am knitting and doing odd jobs around here that I have left undone. I have no intention of bringing him here except maybe at Christmas depending how he is. I may just go there for dinner. He is loosing memory of words and is replacing them with words that don't always fit. I spoke to his nurse today and they were glad I let them know about this action. He is being very busy and active there now and sounds very upbeat. I hope it lasts. It is very lonesome and we have to remember that they are" here but not here" I am finding it difficult to have to deal with that part of this disease. I think it's time to re read the book " loving some one with Dementia" maybe I will be able to find some help on living with this. This disease just turns your life upside down then spits you out then starts all over again, behaviour is very unpredictable.
Well now he is really giving me a hard time. Our DD went to see him Tueday and it seems that Ithey agreed that am a mean, vicious mother of all times. He yelled and screamed at me that night telling me all my faults, and how cruel I am to the kids. My DD has a husband that is never home, and a special needs 11 years old daughter. I don't ask her to help or to visit. I feel she has enough, but I have told her to go and get help and if she can't live with him she has two choices, either divorce him or get councilling and try to make it work. I never see the rest of the family or hear from them since Dad was diagnosed. I asked for help at first but that didn't happen. I guess I am a mean nasty mother after all. I can't understand why she would go and dump on him. She knows I gave a difficult time with him. He is so changeable. I never know what mood he will be in when I see him. Today when I spoke to him he was really cold and distant. I really feel pounded on tonight. I just want to disappear and never be found. Do you ever feel, during all of this, that you have nothing to look forward to or to be on this earth for? Well that's how I feel tonight. At least I have Willy. He senses that I am in real distress tonight. He keeps cuddling up to me and giving me kisses. Isn't it terrible when you feel that the only one who cares is your dog? No, I'm going to be fine. Seven years not so bad, eight years of abuse and he'll. Looks like many more.
I know it will make him angrier, but you need to learn to hang up when he starts ranting. I have a daughter like that. If she can't say nice or at least neutral things I don't want to hear from her - so I don't.
Jazzy, he has a dementia. All that nonsense he hands to you--I would consider the source and ignore it. And DD needs to understand that his mental status is not normal…she would be doing herself a favor not to get involved in his rants, either. It is no use feeding into his dementia issues. If he yells and screams, just leave and go home. Or hang up if you're on the phone. If he is cold and distant…well, that's the dementia talking. We all know we can't win, Jazzy. Or at least, we can't win against the dementia. We can win in other ways. You are making great strides in building yourself a quality life--tonight you are just going through a bad patch. Hang in there with Willy, and try to rest and have an enjoyable evening…even if it just means vegetating and watching something stupid on TV or whatever. Just give your emotions and yourself a break for awhile, have a quiet pleasant evening without putting pressure on yourself. Everyone on this forum cares a great deal. You are not alone, dear Jazzy.
Jazzy, I don't see this scenario as daughter vs. Jazzy. Rather, I see it as daughter's inappropriate conduct toward Kevan. A visitor to a dementia unit simply cannot go in there and get the patient riled up, especially when the patient is as emotionally volatile as Kevan is. This applies whether the subject that got him angry was you or national politics or hockey. Your daughter got him all upset and then left you and the staff to deal with the emotional mess she created. How would she feel if you went over to her house and got her 11-year-old special needs daughter so upset that the girl had nightmares? Your daughter would say that you had mistreated the child. Well, that's what she's doing with Kevan.
If you want to raise this issue with your daughter, why don't you call your her and calmly tell her that whatever she said to Kevan got him all upset, which is not good for him. If you want to you could also say that if she has any complaints about you, she is welcome to talk to you directly. You're a big girl - you can take it. But Kevan is emotionally vulnerable - he can't take it.
I agree with Charlotte and elizabeth about what to do if Kevan starts yelling at you or speaking in a mean or angry tone. If you're on the phone, just politely say goodbye and hang up. If he does this in person, just stand up and leave the room. Above all, do not react in his presence.
Especially the part about not taking part in these conversations. It took me a long time too but hanging up or leaving was/is way better for me. And for my husband because he is not given the chance to escalate.