Feeling so sad.

[nannygoon]

After visiting my Sister today who has PSP she is 81 has had it for 4/5 years I cried all the way home, she looked so sad and thin and had her eyes closed most of the timno no communication tried to get her to take some tea but it just kept dribbling back out her mouth again. I have posted on here a lot and appreciate all replies finding it hard to cope!!

[NannaB]

Hi Nannygoon, it is sad seeing loved ones deteriorate and feeling helpless because you know there is nothing you can do about it. Our sons visit regularly but see a change in their dad if they don't see him for a fortnight. I of course notice changes in my dear husband but being with him 24 hours a day, It doesn't come as such a shock.

All you can do is visit as often as you can, talk to her, tell her you love her and hope she has heard you, which she very likely has.

You will feel sad, we all do, so all we can do is send each other hugs and let you know we are thinking of you.

X

[nannygoon in reply to NannaB]

Thank you so much, I will take on all the advice and I love this site so much it is a great comfort.

[easterncedar]

Oh that is hard and sad, dear Nannygoon. Awful. I hope your knowledge that you had a good sister and a closeness with her that many people would envy helps you through this.

Shortly after my beloved father died, several years ago, I was having lunch with a friend I had not seen for a while. She had traveled far to spend time with her parents, since her father was ill. I asked how he was, and she said "he survived, dammit." Then she looked aghast and apologized to me, thinking I might be hurt at that thought, but all I could think was how awful for her to have had such a terrible father - he WAS abusive and vicious - and how blessed I was to have had the father I did, even if he was gone. I was the luckier one, by far.

So I wish you the comfort of the memories of the love you shared.

And when you go back, maybe you could read a bit of a childhood book, a story or poem you think she might remember. It might comfort you both.

Love and peace, Easterncedar

[nannygoon in reply to easterncedar]

Thank you you have helped me so much.

[Opope]

Nannygoon

as you know I am new to this site and this evil disease. I feel your pain. I can remember all the times before diagnose leaving my mum and feeling so so choked and so very sad for her, my dad and our family.

This site has changed that. ...yes I will still feel those dark moments but I niw know I have you all to turn to.

Nannygoon remember that.

I hope that the next visit you will feel happier and know we are all here to support you.

[nannygoon in reply to Opope]

Thank you for your reply it was a great help knowing others share my pain.

[Hidden]

Nannygoon, having seen my wife, Roisin, in a similar "locked in" state, I was and am convinced that behind the frozen expression her mind was working normally. If your sister has a CD player, you could play some music to her or listen to an audio book, holding her hand, touching her face, stroking her hair. That's communication as well. And so is just being there on your visits even if it leaves you feeling sad and helpless.

Christopher

[formercarer]

I agree with Barnacle. She is still in there! She wants to hear your news and views, gossip, perhaps a few jokes! She will still benefit from feeling the warmth of the sun on her skin, or a short, well planned drive.

Touch is a wonderful way of giving comfort and energy to a person. Hand and foot massage with moisturiser. Her intellect is probably largely unaffected. She needs stimulation and exposure to positive emotions. She may not be able to express her appreciation, but your visits will lift her day.

[nannygoon in reply to formercarer]

Thank you so much your reply was a great comfort.

[pollyannajo]

Hello nannygoon.

Isn't it the hardest thing to try and stay strong in front of your loved one when you feel so helpless? I lost my brother to this awful disease last August and witnessed his decline. I knew I had to keep being there because that's all I could do .Sending love at this most difficult time .

pollyannajo

[Malm1959]

I had to buy some stuff called thicket. You add it to liquid and then you have thick liquids which don't dribble out. It has been a real life saver.

[Heady]

Hang in there Nannygoon, I know it's hard, but your sister does need you!

Sending you lots of love and hugs.

Lots of love

Heady

[Hidden]

Dear Nannygoon

Please take barnacle and formercarer's advice. Mum is 84yrs and we still play her the music she loves, read the newspaper to her, give her massages, hold her hand, cuddle her, tell her we love her and tell her all the family news (she probably gets tired of our voices!!). We make sure she has some perfume on and that the carers brush her hair every day (she's always loved having her hair brushed). We also get rid of any 'stray hairs'on her face something she made us promise to do long before she was diagnosed with this horrendous illness.

Although Mum has no communication at all now, we know she is still 'in there' as, if someone visits she hasn't seen for a while, her eyes widen when she hears their voice, and sometimes when we tell her some good news about the family.

Hang on in there Nannygoon....we're all with you.

xx

[nannygoon in reply to Hidden]

Thank you I will take all the advice, most days I am fine just sometimes it gets to me.As you say her eyes do widen when she hears the voice of someone she hadn't seen for a while and there is a Male nurse called Asu and whenever she sees him it is amazing! Her whole face lights up! It's great to have all the support on here it is a real comfort!

[jimandsharynp]

Stay strong!! Your children and grandchildren and others will be watching to see your strength during this PSP ordeal. Set a good example for them. Sorry we all have to go through this awful disease! Jimbo

[nannygoon in reply to jimandsharynp]

Thank you what a lovely reply, and I enjoy your strength.

[Doglinton]

This is so hard to bear. I do believe that the love is felt and ,in the end, that may be all we can give. I agree with all that has been said about touch and talking. Sharing the memories is so important anyway as we get older, isn't it ? How lucky for you and your sister to have had such a bond. A real blessing! Thinking of you Jean

[nannygoon in reply to Doglinton]

Thank you so much I appreciate your time to reply.

[Rexs_daughter]

I'm also finding it hard to cope, nannygoon! Dad's physical state and your sister's sound so similar. I read comments made on here all the time, but don't usually post, I just take comfort from knowing that other people understand exactly how this condition affects sufferers, family and friends. I always go to see dad with a smile on my face, but very often leave in tears. I just try to make sure dad knows how much he is loved by everyone, even though many people find it too hard/upsetting to visit him now. He doesn't speak much but I know he still understands everything happening around him. As Barnacle says, try playing some music to your sister. Dad very much enjoys CD's still and his feet 'tap' along as best they can! He still enjoys a joke too and its great to see his face change expression briefly when he (silently) laughs! He is definitely still 'in there' somewhere!

Sending you hugs and I will be thinking of you when I'm sitting with dad tomorrow, Julie x

[nannygoon]

Thank you Julie, I will think of you to when I go to see Rose,today,what I find hard also is I have one visitor who is so good at going to visit but treats Rose like a baby and will say to her are you going to open your eyes? We have came all this way to see you and your eyes are closed!!! No matter how much I try to explain to this person about the illness she does not understand. Take care and enjoy your visit today with your Dad.

[GenaBenedict]

Nanagoon i go through that a lot & i',m the one that has PSP . You'll judt have tobe there for her. Don''t let her see yoy upset or scold her if she does something is not what you might do correctly, be compassionnste & if you have a friend to that friend and you will get some help. gena