Mum

[lindsey48]

I can't remember what mums voice was like before PSP, how can that be?. Mum asked me to made her well again, but it's the one thing I can't do. Sitting here not being able to sleep, and crying

[Sharon637]

Oh Lindsey, I feel for you so much. There is nothing worse than when the helplessness hits on top of the devastation, the suffering, the exhaustion and everything else that goes with this illness. I know how you feel, you've reached out, and many will respond with love, prayers and virtual hugs, wishing there was more they can do for you. A request you can do nothing but ignore or deny is heartbreaking, and how we all wish it was within our power to make our loved ones well. We would move heaven and earth, give the moon and stars, if only we could. No consolation but I am crying for you and with you. xx

[coyle51]

Hi Lindsey

I really feel for you, we have all had those utterly miserable times when we simply don't know what to do with ourselves. You will remember the important stuff like the love. I don't know your circumstances but do try to look after yourself, get some help. My son calls them 'air hugs', so air hugs and best wishes.

Coyle51

[Hidden]

sO SORRY to hear your message.Im still struggling to understand why there are pockets of real suffering dotted around in the midst of busy people who notice very little. Lots of people reading your message will really feel for you. As a practical suggestion have you explored all options speech therapists can provide. For my part, whem I lost my mum 30 y ago, I realised quickly that I had forgoten her voice so quickly. This time with PSP, my wifes voice has been recorded before it gets too bad. best wishes jmbb

[jillannf6]

hi all

a good idea to record the voice and ge ta speech therapist in1

not much else one can do apart from ensure that your mum know s you love her- she is still in there wholly despite this PSP

lol jill

[NannaB]

A few days ago my husband came over to me where I was reclining in my chair, bent down and kissed me and said clearly, " I love you so much". For a brief moment I was so happy but then I woke up. I had fallen asleep in the chair near him. He was asleep. I left the room and sobbed. I, like you, had almost forgotten what he had sounded like before. Thinking of this I am crying again, for me, for him and for all of us world wide who are living through this nightmare. I'll be ok in a minute though. I'm about to get breakfast and get my husband ready for the hospice day centre and have a few hours to myself. None of us can make our love ones better, but we can make it the best it can be with help. I do hope you have time for yourself and your son ( I think you said you had a son). I do cry with my husband sometimes when I see a tear falling down his cheek. If the TV is on it is sometimes the music or story that has started him crying so I always say, " is it a happy cry " and usually get thumbs up but sometimes the thumb goes down but he can't express why, that's when we cry together and have a hug. most of the time I cry alone.

Right, off to pull myself together, get breakfast and put a smile on my face as I feed him.

Sending you a BIG hug.

Nanna B

[Hidden]

Lindsey

I find it so difficult to reply to situations like yours because I don't have any answers, but simply to feel deeply about the different type of sufferings that you and your mum are going through.

We all know that when our loved ones pass away we pass through a grieving experience. I feel that since the day my wife was diagnosed with this wretched disease, I have been grieving on a daily basis (and often crying inwardly). However, I have to somehow rise above it for her sake, and just show her love and comfort as much as I can. Family and friends help me a lot to do this!

It breaks my heart to hear her say (in her soft slurred voice) so many times recently she "wants it all to end".

Take care of yourself so you can take care of your mum. We all share your distress as we travel this PSP road.

T.

[quickgel]

Oh Lindsey, I like many others reading your post will be crying with you. In my case the question that I wished I had been better prepared for was "am I going to die"?

In spite of having been married 50 yrs I can't get a feeling of Margaret's presence in any meaningful way. I live in hope this will change because, like you, I wonder "how can that be"?

Keep strong and loving, kindest regards, Jerry.

[jillannf6]

Hi lindsey

j

how r u today ?

i have replied 2 your earlier post of 2/3 days ago

and hope your mum is a little better today

love and xxxxx to you and your family]

Jill

[littlesupermum]

I phone home to listen to mum on the answer phone on days I know she's out. Eg day care. Sometimes she still manages little gems of wisdom which I will always treasure. But at night in the quiet and dark I lay awake and cry. I hate this disease and I miss my mumx [ ♡ ] hugs

[Hidden]

Hang on in there kids, you have a hell of a lot more crying to do before you will come to terms with it all! There is not a great deal of comfort I can offer, perhaps turn to good friends and share the pain. It is just one of those journeys of life. I went to the hospital today about my bad knee and whilst I was there saw a couple of really poorly children, and I mean really poorly. We have to be grateful for what we have had when everything was good. These poor babies and children and their parents will not had that even, for them there will have been suffering right from the very start of their lives and relationships. In some ways we have been lucky and must try to be grateful for what we have had. Was that a good rant? A

[Heady]

Lindsey, cry, cry and cry again! It's Ok. We all feel this way. I lost my Dad, some 12 years ago now (cancer) and yes, I can't remember what he sounded like. Or even what he looked like, I know I have pictures, but somehow, it's not what I need! I know that sounds stupid, because it's obvious what I want, but I would like a clear memory, sound and picture.

Now I am going through the same with my husband, his voice is changing daily! I am lucky, in the way, that S made loads of videos of all our travels, with excellent commentating, I watch them all the time. Nothing new, it's how I get through the ironing pile!!!

I know it's very lonely, sat there crying, especially as you can't do anything. Crying is the body's way of coping with the uncopeable. It is very important to have this release valve, so please don't feel bad about it. We would be extremely worried for you, if you weren't crying. Make time to be able to have a good cry, scream, whatever, take a bath, turn the music up loud and scream and scream and scream.

If you are a person that is able to use someone's shoulder to cry on, DO IT. Unfortunately I'm not, have to cry in private. Had a session yesterday, still feeling the affects, but I got up, feeling that something had to change, so I sorted out the mountain of a problem I had. It was quite simple really, I just passed it to someone else. I wish all problems could be dealt with that easily, but yesterday, I thought the world had tumbled in on me!

So come on Lindsey, cry your heart out, then wipe away the tears, put your happy face on and give everyone you know a big hug. You need it. You will get through this, you will be able to cope, you are coping!

As we always say - one day at a time!

Lots of love

Heady

[coyle51]

Hi Lindsey me again I would agree with Strelley, it is like a grieving process. I was very distressed about my mum's condition and it took months and months to come to terms with it, but things did get better. Someone posted once about finding positives and when I thought really hard, my positive was I now have a much better relationship with my brother which is so important as we are a small family. Despite my mum's significant disabilities she still smiles sometimes and we still see a wicked glint In her eye, she is still in there somewhere. It would be great to know how you are.

Coyle51

[lindsey48]

Thanks for being there. I don't get upset in front of mum, but it's when I get home at night that I cry. I am trying to make life less boring for mum. I know she must hate sitting in the chair all day, so I try and get her out a couple of times a week. The only trouble is, I have back problems, so afterushing her in the wheelchair, I am usually in pain for a couple of days. I just know she hates being like this, sometimes when I lift her up to transfer her to the chair, she just hugs me.

It's good to know I'm not alone.

Thanks for all your replies xx