So many folks and kids love the rollercoaster. I myself, having an aversion to heights, never took that ride. I have now come to the realization that the life I am living for the last few years is a rollercoaster life. Fronto with bv is my roller coaster. Through in the VD, AD and now it looks like there maybe Parkinson's joining the party, I just hold on and close my eyes. We had three months of just lovely attitude and behaviour but last Thursday I started to see that evil behaviour sticking it's ugly head out of the sunshine. I went from " my lovely caring wife and sweetheart" to" I live here because of you, because you are so sick and don't know how to look after me". I'm just starting to recover from a very serious lung infection. He was so caring and seemed concerned but that wasn't it. I saw no love, caring, compassion as I coughed and choked my way out of this with pretty heavy Meds. The cold uncaring eyes, the do as I say attitude. He took taxi's by himself to come and care for me, yes by himself, and I will deal with that next week when I am hopefully better. Now I am relegated back to the " mean, pushy, bossy, treating me like a baby" person. I found out that the RPN just left his pills on his desk and left, not knowing if he took them or not. I'm tired, feeling crapppy, ran out of groceries and had to beg my DD to come and get me some. Am I Pi..ed off? You bet I am. I looked into the capacity test and guess what? If he says no they leave, no test and I pay five to seven hundred dollars. Am I ranting? You bet. Three months of peace and back into the nasties we go. He is so good to others and treats me like sh.t and then gets mad because I don't visit him alone anymore. They tell me he is going to put me in my grave but that is not going to happen as I will transfer his care over to his son's and live!! He says he is afraid I will steal all his share of our money, really trusting. We don't have much but I am hoarding what we have to take care of me one day. He is having eye surgery in the next six months and wants a new computer. Not just anyone but another iMac with all the bells and whistles. So far I have been able to hold him off until we see how the eye surgery goes. After that I will let his nasty son deal with the computer problem. He has agreed with me, no new computer. WOW! What a rant!
Jazzy, good to hear from you, but sorry you are going through this. You must take care of yourself, and just let "the system" or other family members take care of him. Remember, he is in a cocoon of care, but you are not. (((((( )))))) Hugs.
It is so hard to accept isn't it Jazzy. So very hard and it feels so personal and abusive. Which it is and it is the disease. My years with FTDbv - I coined the phrase, "The unpredictable is the predictable." My husband's behaviors changed like flipping on a light switch and I was always the target when things were not going well in his world. I was often terrified of him. He died March 21 and I think I might never recover from the wounds. Our husband's diagnosis - a vicious form of the disease.
If you can give yourself permission to transfer Kevan's care to his son that might be great in terms of your health. And it might create a whole other set of issues. We (spouses) can't win with this disease.
Jazzy, I'm so sorry you have to deal with this. It surely doesn't help you to heal, does it? One question - I don't understand how he is free to call a taxi. Is he in assisted living, nursing facility or what? Don't they watch over his comings & goings? Just not understanding how he can "go"....
In Canada we have a human rights law and each Province is a little different, not much but a little. In some of them the family Doctor can do a capacity test and declare him incompetent but not here. Here I have to hire a specially trained Doctor and if DH refuses then no test. DH is able to do as he wishes until he does something really dangerous to himself or another. He will also need to loose more memory before anyone can get that control. Until then we can't, by law, stop him going out if he wishes. This scares the hell out of me because I see the inabilities but their not enough yet.
The boys live to far away. He gave alternate to our daughter and she often handles the lay down the law things as he will listen to her not me.
Now it's possible that familial Parkinson's is starting to cause him difficulty with his gait and shoulders and back. If that is happening then things may change faster.
Jazzy, I'm coming along, doing better each day. I see the surgeon tomorrow, will learn when chemo is supposed to start. Don't know how I will feel once that begins.
Now I understand about the question I asked you. My, but that doesn't sound good to me, as you said it could prove dangerous for him.I guess there is nothing you can do but wait for more decline (not meaning to sound harsh, but just the reality of it). Keep hangin' on girl!
My best friend had third stage anal cancer about 8 years ago and she is now healthy and just as sassy as she ever was. Because of my so often lung problems I was not able to go near her but we were on the phone two or three times a day. She just reminded what a bitch I was to her when she felt like giving up. I guess I yelled and screamed at her when she would decide to lie down and give up. She told me she got up because she thought that if I thought she was good enough to fight for her she better start fighting as well. He hubby was dieing with COPD at the time. She's cancer free and pretty sassy. Her 73 birthday was yesterday and guess who has been sick and unable to go. ME! Is your DH placed for good now or just until you kick this stuff to the curb?
Sorry Jazzy. I obviously misunderstood your comment, "After that I will let his nasty son deal with the computer problem. He has agreed with me, no new computer."
No "sorry" needed His sons live about an hour or more away and if I need back up they come or call him and talk to him. The nasty one does the best job of setting things right with his Dad. Just says no and has a good reason. If I try that I get screamed and yelled at and accused of taking away his independence or treating him like a baby. Today I had to call his main nurse and make sure staff are making him take his Meds in front of them and also told her that I think the staff are afraid he will report them if he doesn't like the rules being followed and so they let him do as he wishes. Not going to happen anymore. He has to be treated as all the others and go by the same rules. No special treatment because of fear of lossing your job. I could see on Thursday that he was going from good boy to bad boy by his eyes. Really change!! I'm getting better at diverting him and just saying not now! I feel like I am back caring for a spoiled nasty attitude 7 year old. I'm to old for this stuff. I am Metis. I am of indigenous ancestry and have begun returning to my native life traditions. I have a hand drum that I can use to lower my stress level and meditate. These changes are helping. I need to care for me. I can no longer allow the guilt and fears to run me. He is in long term care and I now just check withe staff to make sure he is alright. I can no longer take his word on how it happened.
Jazzy, It sounds like you are taking the right approach to this. As we have read on this site, those of you whose spouses have FTD usually face challenges the rest of us do not. I don't see how you can survive if you let Kevan's whims govern your life. I'm so glad you have found place of peace in your ancestral traditions.
Question did you get a representation agreement section 7...I think it's 7 been so long ago. I am in full control of what happens with him. He is in a nursing home though. But no one can take him out without getting my ok first. Which means he can't get out either.
His sister that also has Alz died last night. She was about 1 1/2 years further along in the disease than him. Just took to her bed a couple of months ago and sleeping lots and finally passed.