Rollercoaster

[Opope]

I visited mum on Sunday and I've noticed that more and more often she is asleep or her eyelids just remain closed. On Sunday she just slept. I sat watching her for an hour feeling so sad and sorry for her. What must it feel like being trapped in your body unable to speak or do anything. How frightening. I left and sat in my car in the hospital car park, called my sister and cried until I could cry no more.

Yesterday I visited after work, I was extremely anxious. I went into mums room and the nurse was feeding her with pureed food. When I asked mum if I should take over she said as clear as daylight 'no' both me and the nurse laughed and so did mum. I knew it was going to be a good visit. Eventually she allowed me to take over. I chatted to her about what had been going on...told her the sad news that Deidre from Corrie had sadly passed away and again she clearly replied 'I know' (mum has a tv in her room) I asked if she saw it on the news and she replied 'yes' I cant tell you how happy it made me feel. We watched Emmerdale (one of her fav soaps) and she said 'Sam crossroads' The person on screen was in fact the character Sam but i reminded her it was Emmerdale and not Crossroads we both laughed.

When dad arrived she was in even better spirits she laughed when I cuddled and kissed her. When I left I was over the moon. Mum even waved as I left.

The reason I'm sharing this is I've started to realise that with PSP there will b good days and bad days. Yesterday was definitely a good day and I have to accept this will be a rollercoaster ride.

[Hidden]

You are so right about good and bad days. In the end it was the wave, sometimes regal sometimes a little more emphatic, that always brought smiles of delight from the receiver. Strangely, if I was favoured with a wave when I kissed Roisin and said goodnight, I always knew that she would have a good night - which supports the view that there is a psychological aspect to a PSP sufferer's well-being.

Christopher

[NannaB]

May there be many more good days and opportunities to laugh. We had friends over the other evening. My husband had been quite unresponsive most of the day. During the conversation with my friends, one of them commented that C was still asleep and very clearly, eyes still closed and without moving he said, "No I'm not". We all laughed.

I chat away to him if he looks asleep or not. I tell him what I'm doing, who has phoned, comment on the TV news, read letters and postcards and read the bank statements to him etc. One day, when I was getting fed up with the sound of my own voice, and getting no response, I said, " I expect you are saying to yourself, for goodness sake stop rabbiting on woman" ( he would never have spoken to me like that really). Both thumbs went up. I laughed, eyes still closed he said, "Only joking" and he laughed his funny humming growl as well. The little moments like that really lift my spirit, and I'm sure my husbands.

[nannygoon]

I was amazed and delighted to read your post today, my sister has not been communicating at all just now and I have been posting how sad I am about it.Today myself her son and sister in law visited and we were joking with my nephew to make some tea and when we looked at her she had the most biggest lovely smile on her face! It was great and it definitely is A Roller Coaster!!

[cabbagecottage]

it doesn't take a lot to make us happy does it . I told John to raise his hand if I am talking to much. which I do !!

it often surprises me when he comes out with something that I didn't think it was possible he could know .

as far as the soaps are concerned even I get those mixed up . they are on so often and cme in two parts ,

so many new characters and story lines .

we all have to dig deep .

[Opope in reply to cabbagecottage]

Thanks for taking the time to reply

[nomansland]

Tears and laughter,both come without control when you allow yourself to really think of the situation,best regards,Rollie

[Opope in reply to nomansland]

Rollie

Thanks

Opope

[jimandsharynp]

Yes, PSP adds emphasis to the phrase "Live one day at a time". Each day is different to some extent. Just when you think you've found a "normal" things change. My wife could not talk and was dying and her sons came from NJ and VA. When I said "Your sons are here" her eyes widened and I knew that she still understood what was being said and going on. So tell them you love them OFTEN and touch them OFTEN. The human touch from a family member is soothing to those struggling. I can't tell you how important these two things are (love and touching). Stay strong and try not to "out-think" PSP. Jimbo

[Opope in reply to jimandsharynp]

Jimbo

your responses are always uplifting. Thank you

[suziewong in reply to jimandsharynp]

Hi Jimbo. I feel that I have let my husband down. After 18 months or more as his full time carer, I was finding things increasingly difficult with lack of sleep etc and we eventually agreed that would be easier if he went into a specialist nursing home where we could have some quality time together.

Just 2 days in they called the Dr out thinking he had a chest infection but Dr said it was just secretions pooling in his throat. Another 2 days later, last Thursday, they phoned me 9.30am to say he had been taken by ambulance to hospital with chest infection and high temp. I got to hospital where he was kept in ambulance for 3 hrs in great discomfort as A&E was full and 7 ambulances were in a queue. Once in A&E he was put on Oxygen and IV antibiotics. 4hrs later he was transferred to Acute medical unit. He was diagnosed with pneumonia and a urine infection. He is very poorly and despite physios suctioning off large amounts of liquid 2 or 3 times a day, his oxygen levels are very low even with the oxygen on full. I feel that he is giving up as he no longer has any quality of life. He can't eat, drink, see, mobilise or speak. The only sense he still has is his hearing. He can listen to a little music and quiz shows or the news and that is it. Now he is not even at home and at present in a hospital bed I fell he has lost the fight to go on. I am living day and night (when not by his side) by the phone expecting the worst.

On the one hand I know it would be kinder for him to be put out of this living hell, but on a selfish note I will miss him so much. The only consolation I have is that he came into faith last year which has helped him cope also.

Sorry to offload all this on you but I had to speak to someone and having been there I know you will understand how I am feeling.

Best wishes

Suzie x

[Opope in reply to suziewong]

Suzie

I thought Id respond as I initially wrote the Rollercoaster thread which Jimbo and others kindly responded to.

my mother of 83 was only diagnosed with PSP about 6 wks ago after going into hospital with a chest infection which turned out to be pneumonia. I felt like u that every phone call was going to be that one. Mum looked so poorly had n NG tube for feeding was on Iv n had a catheter. She caught 2 infections whilst in hospital the worst e coli which was in her urine.

as awful as it sounds I prayed to god asking him to take her. This isnt living its existing.

As mum kept puliing the ng tube out we decided to risk feed. 6 wks on pureed food and the change in her is remarkable. Like ur husband she can't do anything for herself but she suddenly found the strength to fight for survival.

your husband is very ill and his strength has gone.

im sure the hospital are doing all they can.

have you considered risk feeding to build his strength up. Or is he now peg fed

thinking of you

[suziewong]

Thanks for your comments. Unfortunately my husband also has a trismus (his jaw is locked shut) so he is PEG fed. Today when I went into hospital his oxygen levels were dangerously low even with the oxygen on full. I tried speaking to him and at one point his eyes were slightly open. I don't know if he could hear me or not. He couldn't squeeze my hand. I am glad your mum has come through it.

Suzie

[Opope]

Suzie

mum is def alot better thank you. Im so sorry for what you are both going through. Is trismus another symptom of PSP?