PSP Association
5,632 members7,691 posts

Dance with my father again

I don’t post as often now but rest assured I do check in and read daily!

I just thought a little update is overdue, my Dad is still suffering the horrors of Psp, he sleeps a lot more now, his appetite appears to be lessening but some days he eats quite well. He is desperately confused (is this really my Dad I’m talking about)?! Sadly yes! My Dad’s speech is clearly getting worse but then again some days it is better!

The care at the nursing home is generally good and the real plus is they do absolutely think the world of my Dad! That is most likely because he is so utterly sweet and rarely moans and always says please and thank you, bless his heart!

My Mum visits near enough daily, me, generally between 1 to 3 times a week. I personally now find it difficult to know what to say to my Dad because all I actually want to do is cry, but I’ll be buggered if I’ll let him see that!!

I cannot believe that we are now heading into February 2018 and my Dad is still here.....I have a sneaky feeling he’ll be around for a good while yet........if it were me, I know I’d give up, but my Dad is a proper fighter!!

Anyway here’s a song my Dad loves, as do I, obviously I wouldn’t play this to my Dad now cos he’d cry, this song doesn’t make me cry (too much now) just makes me think a lot!

Thanks for reading my ramble.

Hugs and much love to my dear friends x

37 Replies
oldestnewest

Lovely song. Made me cry for my father, who died 20 years ago !

He danced with us too.

Don't know what to say to you, Amanda. You are all in limbo. I'm glad its a good Home.

Big hug from Jean xx

3 likes
Reply

I’m so so sorry Jean! I didn’t mean to make you cry!!

Limbo is exactly it!!

But yes, generally the home is good and the carers 95% are really lovely which obviously is what my Dad needs!

Big hug back my darling x

Reply

Amanda very sad played it while cooking our dinner, you are a very strong lady, you had to fight for your dad, you are an amazing young lady xxxxx

3 likes
Reply

Aww thanks Yvonne, and for the record I think your absolutely amazing too!! X

Reply

💕💕💕💕💕💕

Reply

Hugs to you Amanda

Great video, great voice.

It made me cry... How I would love to dance with my Liz.

PSP is crap!

Hugs

Kevin

xxx

2 likes
Reply

Bless you Kevin, sorry!!

Thinking I may have f***** up here, sharing this song/post!

Hugs my darling

Day out soon, spring getting nearer 🍷🍷🍷🍷 x

1 like
Reply

No, it's good to cry.

We have all suffered so much with this illness the carers and sufferers both.

I'm good to go - that is what we carers do.

xxx

3 likes
Reply

Bless you, true K, true x

1 like
Reply

We cry anyway, Amanda. At least this is crying for a good memory.

xxx

2 likes
Reply

No regrets...I think it takes a thoughtful heart to share this with others in the same boat.

1 like
Reply

So sad Amanda. You have moved everyone with your lovely post. We all relate to it entirely. I miss my lovely mum every single day. Can’t understand why all our lovely loved ones have to suffer this awful PSP. A big hug to you all. Julie xxxxxx

2 likes
Reply

Bless you Julie! I can’t understand it either, would love someone to explain ‘why’!!! X

Reply

Love that song Amanda. My dad always danced with me when the music was a waltz, how I wish I could do it again one more time with him. He died 18 years ago this week but it doesn't seem that long.

Your dad is a fighter and you take after him. Remember all those hard battles you fought to get him the care that he needed and deserved. Then your mum wasnt well and you had to look after her too. Amanda you are an amazing daughter, a credit to your parents. Just take each day as it comes and deal with it in your own way.

Sending you love and a big hug. xx

2 likes
Reply

Aww that brought tears to my eyes!

Thank you too for your kind words, I think all of us are fighters, we have to be eh? X

1 like
Reply

We certainly do. xx

1 like
Reply

Amanda well that made me cry too...for you. I actually never managed to dance with my father because he died the month after I had turned 15 but had been ill for some years previously. So although I have music that reminds me of him it's all classical music.

I do have one that reminds me of G though. Chris de Burgh Lady in Red. He hated dancing but for some reason that song reminded him of me and he would even request it so we could dance!! I hated the song then and am not too keen on it now but it does remind me of him dancing with me! Oddly enough I played it last night so my Granddaughter could hear it and know we danced to it.

So what will we do with you? You need to talk to your Dad while he still understands and can maybe say a few words back. I wish I had talked more to Garry in his last weeks. However I did talk to him and pushed back the tears.

I think I told him I loved him more than I had for years and he appreciated that as he always wanted a kiss when I said that to him.

When I felt the tears coming I made an excuse to leave the room and then come back a few minutes later when I had given myself a talking to. Amanda we all beat ourselves up for what we didn't do but don't let that be one of the things you might feel guilty for. We all know how much you love your Dad so make sure he knows too?

Great big hugs to you and lots of love. That wasn't meant as a telling off by the way, just a plea, so that you have no what if's! Or at least as few as possible.

Marie x

2 likes
Reply

Aww thanks Marie! I tell my Dad all the time how much I love him, he knows that at least.

Ooh so were you the lady in red? Another beautiful song

Hope you are ok Marie and getting by ok x

Reply

Amanda I go up and down a lot! A few weeks to G's first Anniversary and that is dragging me down!

My daughter's Birthday first then mine 3 days later. Then 10 days later G's first anniversary. So can't imagine much happiness until it's over. Might well go crashing down again.

Oh well...keep telling myself I am not the only one and that is true. In addition there are so many on the road I was on this time last year. Nothing seems to make life real again once PSP comes on the scene. Same with CBD and MSA. I could go on and on? Life is so cruel to nice people. Don't know the answer to that one either.

I always remember the lovely photo of your Dad you know? He is very much in my thoughts as indeed your poor Mum is. Then there is you! Talk about an original.😁. You should come on here more often as we miss you! I can always lecture you too? 😇.

Yes I was the lady in red! One of my favourite colours I have to confess. I am still amazed it made G dance with me though! So he has left a really special memory even though neither of us realised it at the time. A strange old world Amanda? I listened to your Luther by the way. It was lovely. Have to confess I have never heard it before though! So you educated me! Not hard to do. 😊

Love and hugs to you.

Marie x

1 like
Reply

Aww Marie, your soooo sweet and I think of you often!

I know I must join in again more! Time seems to be continually against me!

When’s your birthday then? We should at least raise a glass of 🍷 to you and G x

Reply

Well Amanda it's the 12th! First one without my love. Thank God he didn't die that day. Don't think I could cope with that. My best friend died in February too. So it's a mixture of happiness and heartbreak.

Love and hugs to you.

Marie x

1 like
Reply

Think of how you’re getting on Often Amanda ... same boat here holding tears in ... mum has changed so so much !

Grew up on Luther ... some great memories to his music!!

Sending you strength and love for today is another day .

Jude

1 like
Reply

Bless you Jude!

Me too! And wait for it....I saw Luther twice at Wembley arena!! What a man, what a voice!

Huge hugs back to you and your dear Mum x

Reply

My partner, Sam, is going through the same thing. Awful PSP. Seems his progression is similar. Sam is still home with me & wonder from day to day what’s. going to happen. Loved your post & listened to song. 😢 Sam was never a dancer but loves music. I’ll play it for him today. He’ll try to him along. Prayers go your way.

Kathy

1 like
Reply

Thanks Kathy! Sending love to you both x

Reply

Lovely update in this ugly world of PSP. God bless you with the ability to continue.

1 like
Reply

Thank you x

Reply

hi Amanda, you are doing an amazing job, and keep remembering ur best is the best u can do xx my dad is not as far down the road as yours but already I can't believe the things we've had to contend with or go through, and still be functioning. would never have imagined it this time last year.ur mum and dad must be so proud of you, hang onto the good memories and the joy ye have shared being a family xx

1 like
Reply

Thanks Catherine!

Admittedly it’s the most exhausting stressful shi**y time ever, but somehow we get through.......

Much love to you all x

Reply

Big big hugs Satt xxxxxxx

1 like
Reply

Hi there Amanda - and I have just listened to this beautiful song.....unfortunately it didn't make me cry (but it seems that nothing can these days unless I have a stupid fall)........but I can imagine it would have back in the day.....before PSP@@@@@@ it is just so lovely having different things put up on this website and I am sure that I am not the first person to make this statement. Anyway take care everyone - you are a very special group of friends on this website, I must say!!!!!! actually, has anyone here heard from Jill recently????? I am just hoping that everything is ok with her...cheers everyone and love BIndi x x x x x x x

1 like
Reply

Hi Bindi

Lovely to hear from you and I’m pleased the song didn’t make you cry!!

Sending you a big hug x

Reply

Hi Amanda

Oh what a great song that is I’m not surprised that your dad and yourself loves it

It’s nice to see your post too unfortunately I’m the same as you but I come on daily to have a read but don’t put anything on

We have been fortunate that since September Archie has not been in hospital the carers now are very good and really are on top of things with him so I think that helps a lot . I had CHC yesterday for a review because his needs are more so will see what happens

You take care Amanda and love and hugs to you all

Sue x

1 like
Reply

Hey Sue great to hear from you and I’m pleased the care is working out well for Archie, take care my lovely and keep in touch, even if only occasionally x

1 like
Reply

This is so beautiful! Today on the way back from ucsf where I got a infusion of the PSP trial drug, my husband and I stopped by the cemetery to “visit”my Dad, so my emotions are all over the place. I couldn’t believe you had posted such a beautiful piece. Thank You! Love, Mary B.

1 like
Reply

Bless you Mary! Please let us know how this medication goes x

Reply

My husband was always cuddling and swingin and playin pony with my children. And yep, they went to dad when they couldn't' get their way and were turned right back around, but this time with a smile on their face.... Love you Bruce,dad....

Thanks, S

AVB

1 like
Reply

You may also like...