Dealing with a loved one with CBD Dementia - PSP Association

PSP Association

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Dealing with a loved one with CBD Dementia

Hastings2021 profile image

Is there any one else out there dealing with this cruel disease

20 Replies

Yes here we all are CBD and PSP are very similar so sorry you had to be diagnosed I’m a carer for my husband who was diagnosed in 2013 originally for CBD but now they are saying PSP Just come on this site you will learn a lot and get support

Hugs to you x

I am just feeling very alone, he only got diagnosed in July but just in the last 2 months has got so much worse I never thought he would go down hill so quickly

I was diagnosed with this in 2017 but I had very mild symptoms since 2013. I have been on numerous research projects at addenbrooks but now they think It is MSA ,difficult to say. Either way,it is an insidious disease but this site is full of information. By the way,is your user name got anything to do with the place,cos I lived there for 23 years before coming to where I am now?Jane

I am going to Hasting in a couple of weeks with my husband and his family x

I have no reason to go back as both my parents are long gone.spent my childhood there and left when I was 23 because of work and long before this wretched disease!Now happily married. Jane

You have landed on the right spot. Please take some time to check out older posts. There's a plethora of information and experiences, you'll be able to identify with.


Hastings2021 profile image
Hastings2021 in reply to daddyt

Thank you

My husband had been diagnosed in 2017 with CBD. He passed away in January of 2020. He had the dementia. So although I’m not caregiving anymore, those days are still fresh in my memories. If you have any questions at all, please do not hesitate to contact me. I’ll tell you what I know from my experience. And this forum is what helped me more than anything. Doctors can only help so much. You have the wisdom of those who are living/caring for those who have the diseases right at your fingertips. Just reach out.

I am so sorry, your lose came so quickly did he go down hill quickly. Was you still looking after him or was he in a home, I am struggling to work full time and still not got any help

Yes. He progressed quickly. We lived next door to his mother—so she watched him when he couldn’t be trusted alone, as I too had to work full time. And my 27 year old son still lived at home so he helped out. And after my mother in law (who was in her 80’s) had to tap out because it was too much for her, I had a friend/neighbor step in to help. A little crazy trying to choreograph everybody. And if you are like me and hesitant to ask anybody to help because you don’t want to bother them…guess what? You need to get over that. I remember I had a doctor appointment for myself once and needed someone to watch my husband. I enlisted the help of his brother and our sister in law. I could tell they were nervous about doing it. But they showed up and helped anyway. My husband’s diaper that they changed was put on all wonky and he had slid half way down in his bed—but he was fine. They were fine. Everybody was fine. BUT they’d have never helped me at all if I didn’t ask. All they can do is tell you no. And most people would like to help you in someway.

Caring for my Hubby with CBD

And how tough is it for you?

Pretty tough at times but you know we have been married for 53 years and I’ve known him since I was 14 so I will care for him all the while I am able I won’t let him walk on his own now as to many falls He has no use of right hand , arm and right leg not good ,no side vision in right eye no co-ordination gets confused ,but we can still laugh And have great support from our 2 daughters who visit regularly .we are all on a journey .The very best of luck with yours and remember everyone is different and are at different stages some progress slowly others not so Hubby was diagnosed in 2019 after having neck cancer in 2017 after treatment was cured and they say unrelated to CBD x

Caring for husband with PSP. Symptoms began early 2015, progress slow, but accelerating lately. You have found the right place for caring support and amazing information. Sorry you are having to cope with this illness.

I am so sorry you are going through this. My mum was originally diagnosed with Parkinson’s but then got re diagnosed with CBD. After the diagnosis she deteriorated quickly and passed away in April this year. Do you have any health professionals involved? You need to make sure you get them involved early as we struggled and ended up getting them involved when we were in a crisis situation. You will need occupational therapists, physio and SLT. My mum went into a hospice for a few weeks, this may be a good idea for you to get the professionals involved that you need and to help you to make a plan and to give you some time to breathe. It is one of the cruelest diseases and not many people understand what we all go though with it. The PSPA helpline is amazing, we used them a lot as they were the only one who understood. Please remember with the dementia that anything said or done is not your husband it’s this horrible disease. Hope this helps xx

Thank you so much for replying. We have an amazing Professor in London who is always on the end of an email and I have a social worker coming out to us next week to offer us some different packages. I find the hardest thing is when he laughs at me when I am struggling to do something for him. He falls a lot more now so worry constantly.

GoGreen profile image
GoGreen in reply to Hastings2021

When my husband, who had PSP, would laugh when I was frustrated with him when taking care of him, I tried to think that he's really crying because of it. They're emotions don't always come out like they are really. My hubby passed away this past Feb. and I have time to process what was really happening in his mind. Take courage, and keep going on!!

My wife has PSP and doesn't always see the situation as I do, one of the side effects of the drugs she is on is Apathy and I just put it down to that.

Sotul meu are Dementa in boala Parkinson Are episoade de pierderea luciditati de 1an in proportie de 70% intr-o zi .Dar cel mai greu pentru mine este atunci cind nu stie cine suntIsi aminteste trecutul dar prezentul nu.

Nu este nervos doar preocupat de rezolvarea unor situatii de serviciu, de familie .Dar in perioadele bune este sotul meu dintodeauna, bun, iubitor, grijuliu

Noi sotiile trebuie sa fim tari pentru ei

I was diagnosed with CBD in 2016 but had symptoms for a few years before that. My left side is affected. I can still do most things myself but sometimes the effort is too much. My husband is a great support for me but we haven’t had it really bad yet …I’m deteriorating a bit faster now . It’s unfair your husband went down so fast It really affects everyone .differently. The hardest thing is people’s reaction to it , they have never heard of it so therefore it can’t be that bad ….. there will be a lot of support here for you from people who have actually lived with this and looked after loved ones. Sending you hugs from Belfast xxoo

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