PSP Association

The Last Chapter

Have not written for a while. Mum has had PSP for 8 years now but only diagnosed last year!!! Six weeks ago she went into respite care for a week to give me a little break and because she had needed five lots of drops in her eyes for ulcers on the cornea (make sure you keep your loved ones eyes lubricated with Visotears!) There were other medications she needed also so we thought proper nursingcare would be good. Wrong! Within 72hrs she was slumped over a chair and rambling. She had a water infection and was delirious and it really wasn't noticed by the staff! I got her out quickly and called her GP who gave her antibiotics. She picked up for 3 days at home and then one night the demetia started again big time so I called in the Paramedics who found her heart racing.

I went with her to the hosp armed with my PSP folder as I knew I would be repeating myself over and over again. 12hrs later I was taken over by an horrendous virous similar to Gastroenteritus. A phone call from the hospital told me the whole ward was closed to the Norva (?) Virus. I could not see Mum for 7 days!! I was distraught. Katie Rigg PSP Nurse was such a help to me over this time. I was sure she was sick of hearing from me.

When I eventually got back to the hospital I saw a big change in Mum. She had lost weight, couldn't eat or drink properly, couldn't walk and was still confused.In my absence my family of two brothers and sisters-in-law had a conflab and decided it would be best for Mum to go into a nursing home for her sake and mine as I couldn't cope! This same family who visit Mum once every 3 or 6 months whist I have been there every day for the last 8 years and main carer.

Mum had cried and asked not to go back into care.

The consultant told me what I already knew...Mum was declining fast. It could be days or weeks! The U.T.I had thrown her completly downhill.

So here I am today ready to do whatever I can. We fetch her home today and I will move in to her warden aided flat and stay there for the duration whether it is days or weeks. I know she will pick up a bit and then decline. I am not a nurse, I am scared, really really scared but somewhere I will get the strengh to cope and lavish the love and attention on her. I have a great team of carers at hand and friends who have volunteered to sit so I can get home for an hour. But this I must do.I can never repay her for all she has done for me in her life. All I can do and will do is show her that love she has given me.

Yes my family will be without me for a while but I will return to them...Mum won't. xx

7 Replies

Dear Jan,

I'm so sorry things have been difficult for you and your Mum and that you've both been so poorly.

Like you, we find that Mum deteriorates dramatically whenever she goes to hospital/respite and it is to be avoided as much as possible!!

Is your Mum known to the palliative care team in your area? Many hospices offer a "hospice at home" service and can give you lots of extra support. It might be worth talking to your Mum's GP.

I think you are doing an amazing job and hope you have a special time with your Mum and your own family over Christmas.

Do take care of yourself




You have my sympathy, not a lot of help, I know. My husband had PSP and he died three and a half years ago. You say you have good carers and friends, which is great. I do not know where your Mother lives but I would be very pleased to help by sitting with her when you need a rest or visiting her if she has to go to hospital again.I drive so can travel to you if it is not a very long way away. I live in Northumbeland. You are doing a wonderful job, but it is really tiring,not just physically, but also emotionally.

I hope you can somehow enjoy Christmas with your Mother and your family.

Best wishes from Anne


Dear Jan,

Just found information about you and your family and see you live in Nottingham so unfortunately I cannot help you.

You will, nevertheless, be in my thoughts and prayers

Love from Anne XXX


Thank you Kathy and Anne.

Not picked Mum up yet as they are having to give her an enema as she is so badly constipated. My eldest son and Mums eldest Grandchild flew in from Germany 4 days ago to see his Gran and he has just left to go back. He was due to come after Christmas but due to the time element and not knowing he came over. We both went to see her this morning and I left him with his Gran to say Goodbye. It was heartbreaking to see a 18stone Para sobbing as he came out the hospital. I am so proud of him for coming, he has helped me get everything in place and given me the emotional support I needed.

I have a social worker looking into the night sitting but think I will do that..just in case.

What a horrible horrible disease this is. xxxxx


Dear Jan,

It sounds as if you have been having an awful time. Please do accept whatever help you are given, there are no certainties with this illness and you need to look after yourself especially as you have been ill recently too.

Praying for you



Hi Jan

It was so sad to read that you and your Mum have had a terrible time recently. I hope that you are able to share a lovely Christmas with your Mum.

Love and Best Wishes



Hi Jan

I haven't been on the forum for a little while so have just seen your blog. I am so sorry to hear about your mum and totally understand your comments about being there for your mum as she has been for you as that was the way I felt with dad. I have to say that although dad went into a residentical and then nursing home at the end I was still in there with him twice at day and put him to bed at night until the final 3 nights. I send my love to you and your mum and my thoughts will be with you


Lesley x


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