Tearing my hair out

[bsilverman]

I don’t know how to help. Sometimes the rants make sense. Like water water water water.... but today I’m hearing trash trash trash trash. I tried playing 20 questions to try to figure out what he needs but I’m getting nowhere. He will answer Yes to every question even if he means no.

Then he gets himself up from bed, gets into his stairlift and goes down to where we keep the trash. Then he goes back up and continues his mantra. Trash trash trash trash.

I’m so frustrated I could scream. Then I think about how frustrated he is.

Oy. Now he’s just repeatedly calling my name. That’s it. I acknowledge him but still can’t figure out what he needs. Oops. He’s back to trash.

How do you deal with this?

[Mikey12345]

I have no experience with that behavior but can imagine the frustration you both feel. I'm sure someone will relate. Hang in there.

Hugs,

Liz

[Hidden]

My dad was like that a lot. We were lucky to have a ton of supportive family caregivers so that we could switch off and have a break. I hope you have help!

[Tippyleaf]

My husband becomes obsessed or fixated on something but we haven’t yet had the trash!!

The only thing I find which helps a little is distraction he has a number of twiddly or fidget toys all small hand size he quickly gets engrossed and it breaks the cycle.

My hubby’s default answer for every question is No . When you ask him again it usually changes to yes but Family and carers seem always listen to the No!!!! 😤

Love Tippy

[racinlady in reply to Tippyleaf]

My husband does the same thing. No seems to be his default answer to any question. It doesn't seem to help when I tell his other caregivers to question him again to be sure he really means no. They accept 'no' because it gives them an out from doing something they didn't really want to do anyway. At least that's my cynical take on it.

[NannaB]

One of the symptoms can be obsessive behaviour and the obsession your loved one has appears to be trash. My darling’s obsession was the water pressures on the boiler and the water tank. Every hour he had to check them several times and as the tank is upstairs, I had to help him. I know your frustration. I found there was nothing I could do about it other than distraction. I’d take my husband out if it was a nice day. As soon as we returned home he would want to look at the tank and boiler again. He never did while eating though so he had lots of soft snacks.

The obsession will pass though.

One thing that kept me sane was keeping in contact with friends and inviting them round. One of my friends husband’s would sit with my husband and watch tv with him when cribbage got too hard. Me getting out and having a good laugh with friends kept me going. I also invited lots of folk round for takeaways, afternoon tea etc. My husband used to like that as well as he could listen to our conversation and laugh with us. It gave him a bit of normality. When he eventually left me, I still had loads of folk around me as I never allowed myself to become isolated and soon found life is good after PSP, although I’d still prefer to be living my retirement with my healthy husband.

I hope you are doing stuff for you as well. I’m sorry to say things will get tougher than they are now but you will get through it if you can still keep up with hobbies and friends. Love him and care for him but do the same for you as well.

Very best wishes.

XxxX

[Satt2015 in reply to NannaB]

aww Bev your so so wise! X 💕

[Cuttercat in reply to NannaB]

Alas Bev I’m alone now and unless I reach out people leave me alone. I’m hard to be around while I grieve which will take the rest of my life. But I inch along

Cutter

[NannaB in reply to Cuttercat]

Keep inching along Cuttercat. It's still early days for you. Grieving is such a personal thing and different for everyone. I still miss Colin a lot even after 2 years but get through it by keeping myself busy doing things that I enjoy (I don't get much housework done!). I imagine he is with me when I'm having fun and know he would want me to make the most of every precious day. However much I miss him, I can't bring him back but am sure we will be together again one day. That thought keeps me happy. My sons have also told me what a relief it is for them, knowing I am getting on with my life.

I hope things get better for you and you will soon be able to get back out there. PSP brought so much heart ache and sadness but now it has gone from my life, I'm not going to let it continue to drag me down.

Sending you a big hug Cuttercut.

Lots of love

XxxX

[AliBee1]

Poor you. I have no answer apart from maybe not asking the questions as you won't get the answer and that is so frustrating especially for you. I have a slightly different problem. Nigel has recently started waking up in the night and getting really frustrated because he 'cannot get a phone line out'. I have tried asking him who he wants to phone with no luck. Last time we did end up phoning our daughter and when he got her he said 'I don't know why I am phoning you' but it did calm him down. It made me realise that he does not know the answer himself. I have a friend who has an autistic son who is 19 and she says that when he is upset or tired he goes on the trampoline and just continually repeats a mantra of a Thomas the Tank engine song. I guess having something wrong with your brain due to PSP or CBD must have a similar effect. Nigel is highly intelligent and the other night when he was insisting 2am was not the middle of the night I showed him dark outside and he said 'dark means night, night means sleep' to which I replied 'that's right' to which he replied 'Yes Ali but that is NOT what my brain is telling me'. I am sorry that I have not real answer for you but I do feel that questions just end up in a circle of frustration on both sides and if one can just try and distract, it can sometimes help but questions make it worse. The other answer a friend suggested is ear plugs. Not sure that is a good idea. Good luck AliBee xxx PS. Have you read 'The Selfish Pigs guide to Caring' which made me chuckle a lot and did me the world of good. There is a bit in that about finally in frustration just standing in a corner and screaming. Made me realise it was not just me. xx

[bsilverman in reply to AliBee1]

I'll look for the book. Sounds like good respite!

[Hidden]

To date Larry’s obsessive ideas haven’t hung on long. He gets an idea in his head and it is real for him. I tell him I don’t understand and try to move on. Some times it works. He gets angry at me for not understanding. I can live with that.

[bsilverman]

Thank you all for your thoughtful replies. I suppose it's good to know we are not alone although I wish none of us had to deal with such things. I think distraction is a great way to go. And realizing that he may not know what he's after might help as well. Onward....

[Dadshelper]

Dad never did anything like this. I'm taking a wild guess but maybe show him a small trash can let him see you take it out if the house. Hope things work out for you!

Ron

[raincitygirl]

Dear B;

The only thing I could do when hubby fixated on something was think about all the things to do with that subject that MIGHT bother him and then make statements about the subject to see if that calmed him. Eg: "it's not trash pickup day: that's Friday - I will take it out Friday" then "I checked the trash - it is ok" "There's nothing bad in the trash" etc. Sometimes he would just laugh... Whether it was the absurdity of the situation or a pseudo-bulbar effect, I never knew. So hard for them!!

Anne G.

[Marilyn_cbd12]

Hello. I have been reading a lot of good advice that others have offered you. What rings most true for me is the observation that "it will pass." For two years, my husband, who has CBD, went around our two-acre property, finding twigs and branches which he insisted on cutting into 4-inch pieces. As you can imagine, surrounded by woods, there were a lot of sticks! Then, when that passed, he began to pick up magnolia leaves one by one with a long tool that had a nail on the end of it. We have thousands of magnolia leaves in any season, so that was a daily task for several years. He read something about this kind of perseveration in a book about Parkinson's which he picked up at a neurology clinic and was relieved to see it has a name. He even read it aloud to me - I think he was aware of the behaviors, at some level, and disturbed by them, and I also think he wanted me to understand, by reading the text aloud, that he just can't help it. (I used to get so frustrated about it at times and, yes, I would shout that he had to stop it.) Now, with severe neck dystonia, he can't see his surroundings and walk by himself and the days of picking up sticks and magnolia leaves are gone. He does word games and crossword puzzles for hours as he sits in a chair. Not sure whether it would help you, but I bought an Alexa/Echo unit and find that playing music on it calms him, and he gets to choose the music.

It's hard, and I hear your frustration. These conditions are cruel.

Marilyn