Rubbish day

[Tillyhugs]

Oh dear having a really rubbish day today. Just found some photos of DC and I taken about 40 years ago. I sobbed my heart out it is all so unfair. I hate hate this PSP!!! Hopefully he will be home soon and not stuck in hospital

[Babowen898]

Crying is therapeutic. And now if the perfect time to shed those tears--while hubby is away. I know you cherish the memories, and I am guessing some smiles and tender feelings creep into your heart, as well. Sending hugs for you and D.C.,

Ann

[Tillyhugs in reply to Babowen898]

Thank you Ann I miss him so much, just want him home. Hugs to you x

[Kevin_1]

Tillyhugs

I hope you have him home soon.

Is it a brief visit?

I hope he's not too bad.

Hugs to you

This illness is cruel.

Warmly

Kevin

[Tillyhugs in reply to Kevin_1]

Hi Kevin

He has been in hospital for 16 days now. At the meeting men the needs 2 people to care for him. I have look after him on my own for the last eight years. But now I need some help he is going to need hoist, special bed etc downstairs. Just having a very emotional time I guess. I lost both my mum and dad in the last 2 years. So all a bit much really. Thank you so much for your support.

[abirke in reply to Tillyhugs]

I cry for you Th

[Kevin_1 in reply to Tillyhugs]

Hi Tillyhugs

Two parents in two years and this on top?

My goodness, you have been through the mill.

I'm a little speechless really. I am not sure I could have coped with that.

And, eight years as sole carer? I managed two before I was on my knees.

You must love your man an awful lot... that is so wonderful.

I'm sorry if this post is a little stilted. What you have said really has left me a little speechless and a little tearful as I love my Liz deeply too and so this sort of thing hits a nerve.

Can you get someone in to help you?

Your strength is unbelievable. I guess love has something to do with that.

Sorry to ramble.

I've read your post to "our Liz" who has PSP and we both send you hugs and hopes of things getting better.

Warmly, with admiration and hugs

Liz and Kevin

[Tillyhugs]

Thank you both so much. I do love my husband more than anything in the whole world. It is 46 years since we met and we've been married 43 years. I love him so so much. He is the kindness, gentlest, caring person. I am so lucky to have him for my husband

I am sure you feel the same about Liz. I have finally reached the point where I need help. I'm never t one to complain really just felt so down this week and someone from our PSP group told me about this forum. I want to thank everyone for their kindness and understanding. Let's hope we all sleep well and are stronger tomorrow xxx

[york]

I know it's not nice for you to be apart but use this time to get some strength back. Looking at your photos brought happy memories. Why not get them made bigger and put on the wall for when your hubby comes home. We've done that will Mam and she smiles and reminiscences about days gone by.

Take care of you xxx

[honjen43]

Hi, Tillyhugs! You have done well to care for DC for 8 years without help! Hope you get help quickly to put all in place to have him home soon. It's a steep learning curve to understand what is needed. The time it takes for personnel involved to put all together in the home, along with the care package can be very frustrating! At least with a diagnosis, everyone should understand what is required, tho there seem to be some paperwork areas that are pedantic and penpushers that are 'thick'! Hope all goes well and smoothly.

Hope you have a better day with DC. Take those photos with you! Remind him of what memories you will always have! Take some little treat! Music is good for the soul if he enjoys it. I took Christmas cake and then chocolate while he could eat, and fruit and grapes when needed. They got quicker results sometimes than the little red pills!

Look into respite care availability. I gather Hospice have some daytime sessions that would give you some time for you to relax, meet friends, or even sleep. It may also help DC understand what seems to have been christened "the new normal" here on this site!

We had no time to do these things. When J went into hospital it was because he could no longer sit unaided. All suddenly over a couple of days! I had care coming the next week and had to cancel as had no wheelchair showef access. Handrail ordered a month before this event, was ready to install 3 weeks later when he could no longer walk.

Thinking of you as you go through the turmoil of home alteration, as well as the constant and necessary hospital visits. Keep up your spirits and strength! Shout and rave here if you need to! Ring the slow pokes who are not delivering! People here will tell you whose 'button' you need to push to get something moving more quickly!

Hugs to Tillyhugs! And DC!

Jen xxx

[easterncedar]

You are amazing, and your love is inspiring. Warm wishes, Tillyhugs. I hope you are resting and regrouping for the next shift. Love, ec

[Julieandrog]

Tomorrow will be better, you develop an acceptance , almost a numbness as this cruelty progresses. This illness is like a living bereavement , be brave and try to gather your energy again. You like all of us here are so so scared.

Lots of love

Julie x

[Katiebow]

Don't know how you have managed for eight yrs with no help, Ben was diagnosed 2.5 yrs ago and after his broken hip last June I have had alterations downstairs, he sleeps in hospital bed and carers come 6 mornings to shower and dress him which is one less job for me to do. I am considering evening visit if they don't insist will be 7pm, far too early but all they had on offer originally. I sometimes climb into his bed for a cuddle, he squeezes me so tight and doesn't want to let go, breaks my heart as I know he misses sharing a bed. We always did the Times crossword in bed and it was the time we would put the world to right, how I miss all that. I can't believe the difference in our lives that this awful, wicked disease has robbed us of and I'm sure you are feeling just the same, it feels so lonely doesn't it? Try to stay strong and you will be grateful of the bit of help the carers give to relieve you of all the responsibility of looking after your dear husband. I wish you both well.

Love Kate xxx

[Tillyhugs in reply to Katiebow]

It is hard as you say but I have just soldiered on for the past 8 years he has deteriorated so fast put him to bed one day next day he could walk!!

It is a great blessing to know people understand.

You take care of yourself and your dear husband.

I am here if you want to let off steam

Tillyhugs

[Robbo1 in reply to Tillyhugs]

I agree with what has been said. I hated having to accept that we had to get carers, now I embrace it. It means that I am showered, dressed, and ready for the day when B. is and ready to make breakfast without being rushed or stressed. Therefore, better for him too. I got a flat pack 2'6" wide bed, put it together and sleep downstairs alongside him. We. have both slept better since. Hoping all goes well. X

[Tillyhugs in reply to Robbo1]

I was wondering what I am going to do about sleeping. Think will have to see how much room there is when he equipment is in place. That is a worry as well x

[Robbo1 in reply to Tillyhugs]

I hope it all works out for you. Big hug. X

[Tillyhugs in reply to Robbo1]

🤗

[pzagy]

I am on this site because I feel that writing, journaling and letting go of emotions and feelings onto some type of platform is theraputic.....let it all out, say what you have to say and dont hold back because one day it will all be too late

[daddyt]

I know this can be very difficult... sending you hugs xx

[JantheNana]

Yes,looking at photos from better times can release a torrent of emotions that we tend to hold in on a daily basis.I try not to feel envious of older couples that I see who are enjoying outings with apparently good health,but it is hard.I just can't help wishing I had my husband back as he once was.Tears!

[Cuttercat]

Oh my dear, I know. I hate this PSP. It's the worst and since it's so rare no one understands, but we do. Sorry and hope he'll be home soon as well.

Cuttercat