I was watching tv with my husband and I had just taken him to the bathroom. About 15 minutes later he said he needed to go to the bathroom and I said ok wait a minute. He then said it again and I said I know and I tossed a small pillow. He picked up the pillow with his left arm and slammed it into my face. I got up and did not say anything to him took him to the bathroom. When I brought him back into the living room, he says that I deserve to be hit by him. It’s funny because he can’t do anything for himself. He really can’t talk that much and it just surprises me when he says stuff like this and when he gets mad I normally just ignore him. I guess he is just as frustrated as I am.
My husband was a really mean person before he got a dx and I don’t even know why I stayed married to him back then. Every time he does something like this just brings up all the bad memories. I still care about him but I just can’t ignore when he does this.
Hi Penny I hear you my husband can’t do anything for himself either I am trying a nursing home for respite at the moment would you believe he seems happier there than he is at home he’s normally very moody and depressed and I just can’t do much with him anymore after doing all the necessary stuff I’m exhausted The carers there say he loves a laugh 😳I’m like wow
I’m just saying we have tried a few I am thinking of leaving him there
Sometimes I think I am just in denial he’s not the same and he hasn’t been for about 10 years I really do care for him but I wish I could get in his mind sometimes and understand what he really thinks but we can’t have a conversation anymore just the thumbs up down
The personality really changes doesn’t it so confusing to know what to do
I would love to know what goes on his head. I’m retiring and my last day is 2/26, so I’m hoping it helps.
My husband is on hospice care and I am going to put him in respite care in March or April for 5 days to get a break. I’m just hoping it doesn’t make him worse.
I think sometimes it’s better for them sometimes worse I’ve experienced both I always ask him questions and he puts his thumb up or down some people are just good at thier job and we have to trust them but alway ask your husband the questions and if something isn’t right don’t be afraid to go and tell who you need to tell Good luck with it all have some time for yourself xxx
Hi penny1956!The impression that I have had in the trip with PSP is that the character of the patient is a mixture between his character before the disease and the influence of the disease itself in proportion that depends on the impact of the different phases of the disease.
By sending a patient to a nursing home, the usual environment changes radically, the parameters have changed and feels insecure. Perhaps then exhibits her best social skills with the idea of earning the opportunity to return to his usual environment that he masters better.
The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom. Also it is exhausting being on call 24 hours a day 7 days a week.
From our experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential, supposed an effective and intense help with trained personnel throughout all the year.
As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.
Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”.
There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.
It is worthwhile for the caregiver to report on the typical progression of the disease and then take each day as it comes. All patients are different and even with a lot of accumulated experience about the disease the caregiver must be prepared for what he did not expect.
Finally, reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Hi, PennyI agree with all the advices and comments, specially Luis Rodizio.
I see two problems: the rescue of your own health and the guilty of leave your husband in a care home. Is your decision to priorize your health or not.
Hi Penny my husband had PSP and he could be horrible, I think they are so frustrated with not being able to do things for themselves, it is not an excuse for him to be horrible to you, but Psp is a horrible illness, I remember crying and my husband laughing, but him saying to me I am crying inside, he is more than likely depressed, is he on any antidepressants? My husband passed away over 2 years ago, I still remember that hard times but try and focus on the good times. Big hugs. Yvonne x
My husband's aggression was very hard to deal with also. They are frustrated with their absolute loss of control.. There is a lot of medication to calm that. Seroquel, ezitemibe(sp), trazodone. That was part of my husband's mix and worked til he started hospice. Then all the comfort meds, tranquilizers and morphine. It's such a ordeal for we caregivers, but we must hang in there. I promise your peace will come. Prayers for you
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