PSP Association
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Accepting help when you need it!

Nearly a fortnight ago I think since I blogged and I was so down and desperate. My new friends (all of you) were amazing and suggested I went to see my GP which I did and he gave me some anti deppressants. It wasn't just Mum though who was getting me down looking after her. It was trying to be superwoman and doing everything else as well, full time work, husband and 2 teenage lads, a puppy and a massive garden that needs upkeep! The anti deppressants knocked me out for 2 or 3 days and I cried and cried about Mum and everything. Feel as tho I have been on the biggest pity party ever!Hubby and the carers and friends had to look after Mum..but hey guess what? When I saw her after 3 days I had 3 full bin liners of washing to bring home!

One of the things that broke the camels back was every Sunday we fetch Mum to ours for Sunday dinner. This sounds awful but evry Sunday is the same...I eat alone on the table with Mum and have done for the last 3 years. The lads cannot cope with the spluttering, coughing, dropping of food and noises that Mum makes so they eat with their Dad in the other room.Mum doesn't think or realize it! I sit with her for maybe 4hrs whislt she is at ours and darent go out the room in case she decides to do an 'Andy' of Little Britain and move (which she does!) I miss Sundays, going out, being in the garden, going away for a weekend...all gone! The sadness I felt for myself overwhelmed me and as the rest of the family carry on as normal I just broke.

Now I feel a lot better...have given up the job I love with all my heart. Hubby and the youngest lad have said they will help round the house more (yeh!)and the middle one is moving into a house with his mates today (another reason to cry...not!)

I read every question and every word on this site and I have you all there as back up! I can read answers to questions that I need to know too and I can cry with you too. I know I am on the way up and not as low as I was and yes I have another doctors appointment for Mums eyes that are so sore today so I will be there as normal.

I won't let myself get as low as that again, Mum needs me and my family need me too. I have promised myself that I will blog...even if it is something that seems so stupid.

Please all of you, use this site, use the support of PSPA and use all of us as a coping mechanism. As someone wrote quite recentley this is not just an individual illness, it affects all the family but especially the main carer!

My love, thanks and prayers to you all xx

8 Replies

hi jan

you r very brave to be lookgin after your mum and giving up your job too!

i do not have any children to care for me but that is not important and you need some free time away from teh Psp and your mum;s illness

i have psp and am makign the most of my time each day

love jill


Bless you Jill. I am only the carer, you and Mum have this awful illness!

Even though you don't have children, I do hope you have the support you need through friends, relatives, GP and the PSPA.

Please use this site and anytime you want to talk ...just contact us.

Look after yourself xxxxxx


Really pleased you are feeling better, Jan. Like you, this site is my saviour at the moment. I am good at telling others what to do and how to go about things, but I tend not to think that I ever need any help. I am realising more and more these days that I do! Both my daughters are not local - one in Wales and one in Vancouver, so not much help there. However, my daughter from Wales is very kindly spending a few days up in Cumbria with her dad and me in a couple of weeks. It will be nice having someone to talk to and to help with my hubby. I think she will realise just what hard work it can be. I appreciate she has her own family and a job, and occasional help with her dad does help, but I really don't think she understands the pressure of caring for someone 24/7. Also - she is 20 years younger than me and that makes a heck of a difference!

Hope you continue to feel better and love to your mum too.

Take care...............SuzieQ xx


Ah, Jan, hugs :) I'm glad you're feeling brighter, but so sorry you had to give up work. PSP is a horrible illness that robs us of so much. It's hard for anyone else to grasp.

All warm wishes

Fiona x


Thanks glad your daughter is coming down and yes she will see how hard it is! Also thank you for your love and advice to me ...I took it! Lots better but think yes now for me like you it is knowing you are all out there. Hope you have a better day too today.

Fiona..thanks for that lovely smile and big big hugs to you too.

Jill....We are all here xxxxxx


Dear Jan,

So glad you are feeling a little better. Hope the anti-depressants start to kick in soon and you continue to feel more able to cope. Also pleased your family realise how much you were struggling and have said they will help out.

Blog when you can, we are here and we, more than anyone, do understand that there are good days, bad days and downright $*!££! days!!

Take care

love Kathy x


Hi Jan K, I have just read your blog, like you I think I am trying to be superwoman and keep everything going at home. My husband is still fairly mobile but he does have several falls during the day. We have managed to have a laugh about some of them because he has fallen in my tomato plants, the oregano, the mint and today the butternut squashes got it! On the other side of this illness, my husband is not talking to my daughter and myself, he spends a great deal of time watching television and very little else. It is difficult to know if this is psp or he just isn't making any effort. My husband can still speak, he has just had a conversation with his brother on the phone albeit a little one-sided.

I am feeling incredibly tired at the moment but I am realizing I do need to take a bit of time for myself. My daughter is back living at home and has been amazing in helping us to cope with day to living, but sadly her father seems to disregard her most of the time, which is very upsetting.

Sorry I am now having a big moan, but you are so right about the benefits of blogging, it really does help.

My best wishes to you.



Hi Peter, I really empathize with you, Mum is just the same! Please don't think your husband is disregarding you. Mum is is a warden aided flat (at the moment) and the times I have gone over for an hour either from work and some other time and she has completely ignored me and carried on listening to her talking full volume! I have been so angry and thought 'Why did I bother?' 'How rude!' She comes to us on a Sunday for dinner for about 4 hrs and often doesn't say a word, she just sits and reads the same page (tries) for the length of time. I have to sit in the room and can't move out of it in case she does something impulsive, gets up and falls. Any family gatherings the apathy and seemingly disinterest is there. However when she gets back to her flat she will tell the warden what a lovely time she had?! Horrible isn't it?

Glad your daughter is at home to help. Take care x


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