I suffered years of unreasonable behavour, verbal abuse, mood swings before my husband was diagnosed with this awful disease. Now PSP has took hold , mentally he seems alot more chilled than he has been. His sexual appetite does appear to have reappeared and like you I have no desire to have sex plus he has ED so its not really possible. However the years of bring treated bad have destroyed any sexual urges on my part and even his touch is not the same since this disease has took hold. I care about him and will care for him but I have no desire to have sex or any sexual interaction. It's difficult so I either pretend I'm asleep or go to bed later than him to avoid the issue and I still work so I'm up before he wakes.
I do understand how difficult this is and the frustrations and stress the caregivers go through. I joined a gym about a month ago and it's the best thing I've done. I feel mentally and physically better and stronger mentally so its helping me so much in dealing with this awful disease.
Stay strong.xx
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Joze121
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Exercise is a cure all. I hadn’t been able to get to my basement where I have my home gym in three weeks. I got down there today and did my 15 minutes. It will wipe me out for the rest of the day but I feel better for having done it.
Jeff, I'm glad to hear you got downstairs to your gym. Keep it up. Being wiped out from exercise is a good way to be wiped out. I hope you're holding up okay.
I'm so sorry weve had to endure the years of verbal abuse and mental bullying. I had sort of just accepted it until my friends said this isnt right, something isnt right with him and he needs help.! Then he started with other symptoms and here we are!.
I try and blame it on the illness but I agree that I dont have to same love that others on here have for there partners.
It makes me sad really and maybe that's selfish as its him that's ill but I feel I've put up with more crap than people could ever imagine over the years and now I have to care for him as my obligationsand duty as a wife. Dont get me wrong, i would never walk away as I'm in it for the long haul but god it's hard sometimes as life for me now stops and caring for him is priority. I try to give myself time to myself and that helps but I totally understand and am truly sorry that you've already suffered similar to me.xx
I am so sorry for what you have gone through and are going through now. I simply could not do what you are doing. It was hard enough when I had love to help me. I hope you take care of yourselves, you and Kmacgamwell. You have such a hard row to hoe. Love and peace, EC
Thanks for your honesty I think you speak for all of us or most with the years of mental abuse before anything was diagnosed I hear you in the end we know why it is but it doesn’t make it any easier does it to do what we do !
I’m glad that you have the gym to go to. Your personal space is so important. I don’t think I would be able to be a caregiver for someone who is or was verbally abusive and/or angry. There’s a reason for the saying of “you make me sick!”. Some people can become physically ill because of their surroundings. If you reach a point where you cannot cope there is nothing wrong with placing your loved one in an assisted living home or a type of daycare. Do you have help from family or friends?
At least for now he’s chilled out some so that’s good. I hope that you can stay strong too. Be good to yourself.
Thank you for your comments. I have no children and no family close by apart from a nephew who has children of his own and one who is disabled. Fortunately he has chilled out although still stubborn. He gets an idea in his head and wants to do it straight away but I'm coping so it's ok. I suppose as hes still able to walk at the moment, I've not got to the really tough stages of this illness but I'm hoping I'll be able to cope. Fingers crossed.x
I think the stubbornness is part of the disease unfortunately. My husband can’t work a remote control or handle the mouse on the computer so he’s constantly telling me that things are broken and that we need new ones. I’ll show him how to make them work and he pouts because he wants new stuff and says that I never give him anything 😳
Most recently he tells me that he wants a drone. Seriously! What the heck will he do with a drone? He brings the subject up everyday! He doesn’t know this but I have found two different neighbors who are going to meet us at separate times to play with drones in a nearby park. I’m hoping that this will be a nice outing for us and that hubby will be satisfied enough to stop talking about it. We shall see!
He also has OCD now. I’m glad that he can still shower by himself but he washes the same body parts 3, 4 and 5 times. Over and over again until there’s no hot water left. I started setting a timer to let him know that he’s clean enough and to get out. But now... he can’t hear the timer or it doesn’t register with him. So... I sit outside the shower and tell him that he has already washed his hair and it’s clean. I tell him that it’s time to wash the next body part. He says that I yell at him, and I probably do, but if I don’t shout it doesn’t register.
And so we keep on keeping on. It’s these little idiosyncrasies that make me laugh later, after it’s over and sometimes months later.
Like you, I have no family and my close friend moved to another state. We have a neighborhood app called Nextdoor and I went on that website to find someone who could spend sometime with us and their drones. Next time, I’ll post that hubby needs a buddy and hopefully find someone else in a similar state who would be willing to trade help in order to get some alone time. Would this be something that you could do?
I’ll take pictures of our drone flying and post them. I just try to make the best of what I can out of difficult situations.
Yes I experience the stuboness and yes things that dont work as they should are Shit! Or not working!
Re the drone, yes thanks to Ebay and amazon etc we have had multiple purchases of things he one minute impulsively needs and the next has no regard for. I feel like my house is cluttered! We have a drum kit, telescope, guitars, remote control speedboat and I could go on! All these were purchases needed but used only a couple of times.
As for the OCD behaviour, yes I've experienced this also. He used to wake during the night and sit on the end of the bed winding up watches. (He has approx 40 watches).
It would drive me mad and keep me awake when I had work in the morning. I had to contact our doctor who prescribed some tablets to help him relax and sleep. He also seems obsessed with picking at his skin till he makes himself bleed. Sounds awful I know but he will scratch or pick his shins or arms till he makes himself bleed then spend the next few weeks picking at the sore skin hes caused. Drives me mad, weve had do many arguments about it.
Good luck with the drone flying.!
They seem to go like children and we are the baddies telling them off. I'm constantly called a know all because I try to help him but he just retaliates at me so I bite my lip and keep quiet. It's hard.
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Liz has passed on - Thank you for the wonderful responses
