Advice : Hi everyone, my mother died in jan... - PSP Association

PSP Association

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Hi everyone, my mother died in jan of PSP. Aged only 60. All these months down the line and I’m still really struggling with the reality of losing her... does anyone visit therapists or have any advice websites they could recommend? Thank you x x

25 Replies

Hi my husband passed away in 2018 still finding it hard to cope with his death, I have started having counselling which is helping. I hope you find a way forward, sending you a big hug Yvonne xxxx

You’re very strong to seek out help. Definitely speak to a professional ASAP. I suggest psychiatrist as opposed to psychologist.

PSP related death is so unique, a doctor would be more equipped to handle the effects on family after dealing with psp. -

Ask your the psp Central doctor that Treated your mom for the name of a psychiatrist that specifically deals with psp if that’s possible.

There are medications that help with depression. Don’t be scared to get an anti depressant- YOU suffered long enough leading up to your mom’s passing- pSp effects the family.

Good luck

You’re not alone. It’s so hard.

Hi, to lose your mum at such a young age is always difficult and to lose her to such a terrible disease only adds to the grief. I would recommend finding a therapist/counsellor. A psychiatrist would be able to prescribe medication but a counsellor will listen to your experiences and help you to make sense of what has happened. If you are in the UK I would recommend looking at the BACP website (British Association of Counselling and Psychotherapy) and go to their ‘find a therapist’ option. A lot of therapists are working via Zoom but there are some doing face to face (I know as I am a counsellor and doing the same!) If you are in crisis remember there is always The Samaritans phone line you can call and speak to.

Although it would be good to have someone who knows about PSP, any good counsellor will have experience working with grief and loss. I hope you find some support soon.

Take care.

Sophie2019 in reply to Hdee

That’s a great help thank you so much for the advice I will look it all up now!! X x

redkilt in reply to Hdee

I would agree with Hdee's comments - therapist/counsellor rather than a medical professional x

I’m sorry for your deep loss and ongoing struggles. I have liked the website

which has a blog with thoughtful and helpful discussions and creative ideas to help process one’s grief.

It has not actually been that long since you lost your mother and the pandemic has suspended a return to normal life with its helpful distractions. Eventually you will see the light again, and find that you have grown much in the process.

I think your totally right about the pandemic! That’s a great website thank you so much! X x

I lost my husband to psp in March and started getting some counselling at the end of May .By then I thought I would explode if I didn't get to talk about the grief ,the guilt and the awfulness of the illness.It really does help.I hope something will help you.Love Susan

Oh I’m so sorry to hear. It’s so heartbreaking I can’t imagine what my dad is going though also...

I have sorted some counselling and I hope it can sort of help me as much as it helped you!!

X x

Hi Sophie2019!

Yes. In my town hall there are courses on "psychological support" for caregivers of long-term patients. Caregivers can attend the courses before and after death. Group therapy is humanly richer but if it cannot be individual treatment it can also be effective.

A big hug.


You could try your local hospice. The have bereavement support If your in the uk cruse is a bereavement charity.

I lost my father in March, it's a very difficult time.

Sending a virtual hug xxx

My husband passed away on Boxing Day 2018 and I am still really struggling and this lockdown and everything going on in the world isn’t helping. The way I try to cope is firstly by travelling as much as I can so that I always have something planned to look forward to but obviously this isn’t happening at the moment. The other thing I do is a lot of exercise I run 3 times a week ( very slowly!) but it really helps, I often have a good cry in the first mile but always feel more positive at the end. I haven’t had any counselling yet but think I might like to join some sort of group, I am not sure that I want a one to one. It’s just so difficult and I also think grieving is not a quick process- you don’t ever get over it you just start to adapt I think but I still feel that I am in very early days even after all this time. It’s hard because people that haven’t experienced this almost think it something that you get over but I don’t think it is. Take your time we are all here for you and many people in this site are in the same boat. Sending you a hug love Sarahxxx

Real grief takes time. The more attached to the person you were the longer it takes. The pain never fully goes away. It hurts a little less every year.

So sorry for the loss of your mother, I just lost my brother 2 months ago, 10 year battle with psp. Yes it is very hard to lose the one’s that you love so dearly, my only advice, is to think of all the good times you had, be positive, get out of the house and start doing things, keep busy, start a new project to keep your mind busy, younwill heal in time takes a while, but you will be there one day. Nettie♥️

Dear Daughter of a very strong mother,

We are very sorry for your loss. May her soul rest in peace aamen!

We pray you get stronger & stronger each day. Just remember every mother wants her child to be happy and if you are not her soul will not get peace.. You have to do for her sweetheart.. do things what make her happy. its a hard journey but you will get through it.

blessings and prayers with warm hugs.

Sophie2019 in reply to mimikhan

So much love, thank you x x

Hi Sophie, I finally went to seek help last year and this was through my GP counselling service. It was group to therapy, which I was really really nervous about, but it was actually really good to share our grief, our memories of great times and the hurt, anger, guilt, rage and sadness we all felt.

It took me a long long while (12 years) to recognise that I had never given or allowed myself the time, space or Indulgence to grieve for my dad. I had just my first child, who turned 1, 17 days after my dad died from PSP. I just threw myself into the daily ritual of life and coping day to day.

Good on you for seeking help and wanting to open up about the pain you are feeling.

PSP is so cruel and hard for others who haven't been through the nightmare of seeing them destroyed by it.

Mostly I felt angry about why my Dad had PSP, devastated he wasn't there any more, bitter that my kids had their OPA stolen from them and hated that we had wasted time during his last year's with us always seeking a miracle

I hope you find a way to cope with your loss, and finally be able to think warmly of your mum without the shadow of PSP.

Sophie2019 in reply to RolsDutch

Thank you for your message. I can 100% relate as my daughter was only 6 months when my mum passed away. I through myself into caring for her and my dad and siblings...

I hope you have had help? X x

Sixty is such a young age and my heart goes out to you. l agree with Yvonne and the others about counseling... it can help us when we are ready. I will add that not every counselor is a good fit, so don't hesitate to find a different counselor if you feel the need.

There is no right or wrong way to our feel grief when we lose a very important person in our lives. PSP also took my mom... she was in her 80's. I put a favorite photo of us in my laundry room, it makes me smile. Mom was 26 & l was 5. We used to sit and fold laundry together. l now treasure the good times in little ways... but still wish our lives had never been attacked by PSP.

I believe everyone handles grief in their own way & time. Sending you hugs of support... Granni B

Sophie2019 in reply to Mottsie

That’s such a lovely thing to do, I’m actually going to take that and do the same with a picture of my mum...

Thank you for the advice x x

Mottsie in reply to Sophie2019

I also placed a photo of mom on the bookshelf next to Tim's first PSP book... l haven't got the second one yet but l am looking forward to reading it. Please take care of yourself... Granni B

Hi Sophie. My deepest sympathy. I lost my dad over five years ago to what was later found to be CBD. I had counselling but found my own way forward eventually. You're still reeling from your cruel loss and losing your mum at a young age. Give yourself lots of time and be kind to yourself. Take care. Fran X

So very sorry for your loss, Sophie. Good for you to reach out and as others have shared, get all the support, medically and the psychotherapy you need to help deal with this. My mom has struggled with PSP for several years and as you well know, it just gets worse. She is now 78. It's truly a cruel disease. I share this as I can appreciate the mom/daughter relationship. I hope you also have some family and friends physically close by that can be there for you as well.

Keep us posted and thank you for sharing. Oxoxox

I really would like to say a massive thank you for all the kind words and comments that have been left here.

My daughter had only just turned 6 months when my mother passed away and think I had to just get on with it back then... but now it’s hit me hard and I just miss the little things!!

I have decided to seek some counselling and visiting the PSP website (UK) for the counselling hot line and it’s really helped in a little way!

My love to all of you as we all know exactly what we are going though x x x x

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