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This strange new life!

Well yesterday was Rene”s funeral. We had a beautiful humanist ceremony and his older daughter gave an incredible eulogy. I tried so hard to keep it small just close family and those friends who have helped us on this PSP journey. We will have a bigger memorial service for friends, work colleagues, patients, etc a few days before what would have been our 25th wedding anniversary.

House slowly changing as beds, chairs, equipment collected.

So many new challenges - how to shop, cook, sleep, slow down!!!

I have so much to learn now on my new journey , thank goodness for this site !!

Love to all

Tippy xxx

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Dear tippy

I'm glad you had the beautiful ceremony for Rene it was obviously very important to you to keep it family and close friends.

Sending love and hugs to you as you begin this strange new journey.

I hope you have lots of support and yes thank goodness for this site.

Lynda 🌷

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Oh Tippy sounds like Rene had a lovely send off, brings back so many memories, been thinking about you, take things at your own pace, the new normal is hard to get use to, Tippy sending you a massive hug, hopefully will see you the end of June, will give you a hug in person, look after yourself take time for yourself. Yvonne xxxxx

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Thank you Yvonne I was thinking of you earlier as I start to organise the memorial services.

Love Tippy xxx

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The first year of grief is probably the worst year. So many firsts. As you know we are always here when you need someone to talk to.

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Sending you a big hug Tippy. You’ll get there in your time.

❤️ XxxX

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Strange indeed! May all of your new firsts bring you a sense of peace. 25 years of memories, wow! Stay in touch and let us know the answers to your new challenges, especially the one about slowing down. How does one do that?

Xoxo from I SewBears

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a big hug Tippy!

Luis

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How is your wife, Luis? Is she still exercising? Is it working for her?

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Hi aliciamq!

This March has been 7 years since the first specific symptom was presented.

She continue doing "passive" gymnastics. She can barely stand for a few seconds on her own. Eat acceptably but slowly. Sleep well. His vital and analytical constants are good. He has a relatively good mood (except when I have a few days of vacation !! ;). He always moves in a wheelchair. Go out to sunbathe whenever we can. We maintain an acceptable level of social life but always in a house. Today we have birthday celebration with children, grandchildren, ...

In summary. Given the phase in which we are ... acceptable.

Thanks for your interest.

Hugs

Luis

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One step at a time.

Hugs, Alice

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I am so glad that you had a lovely ceremony. Take good care of yourself now and get plenty of rest. You will find that your exhaustion from everything you have been doing will be like no other exhaustion and take a long time to fade. It’s now nearly 5 months since I lost my lovely Steve and it’s been very up and down, it’s really hard work trying to keep positive. The exhaustion is never ending as you try to build up your new normal so take any help offered and rest rest rest. Thinking of you and sending big hugs

Love Sarahxxx

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Thank you so much for sharing your experience Sarah- it is helpful for me to have some realistic expectations!!

Love Tippy

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So pleased everything went well on Tuesday. Now it’s time for you to relax and look after yourself you have done an amazing job looking after Rene. Catch up soon . Love Pauline xx

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Thank you. Now organising the memorial services -need to keep busy!!!

Xxxx

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My sincere condolences for your loss.

Kerry

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It's always a big hurdle to get through the Farewell ceremony, see the house change back to the way it was before and to have time on your hands. It took me a lot of readjusting to. Once this and the finances are more or less sorted and the new normal sets in you may find it very strange and take time to settle into your new life, I'm still struggling in lots of ways but it seems that people vary in how long it takes for them to move on. Be kind to yourself Tippy and don't feel pressured into moving on too quickly, do things your way as it's the only way for you. You seem like a strong and resilient lady and that will help.

Sending love and a big hug

Kate xx

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I found the funeral comforting as Chris would have enjoyed it so much !

The next bit was much more difficult than I had expected. Couldn't believe how tired and empty it felt.

Do it your way Tippy. I hope to see you in June.

Big hug from Jean xxx

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Takes lots of time to talk and grieve. Big hug and lots of luck for you’new’ Life. Jayne xx

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Love and hugs and warmest wishes to you in coping with the next phase xx

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So sorry to hear that Tippy. Please keep in touch with updates on your next steps xxx love to you

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So glad the funeral was as you wanted. We had humanist services for my Dad & brother and I felt they captured the person so well and made it a true celebration of the person and all they meant to others. I know there must still be lots to sort out but take it easy and be kind to yourself. Thinking of you xxx

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Hi ,it's great to see Rene had a beautiful funeral,and for you the psp journey is over,and it will take time to adjust ,take it easy ,we are here

if you need to talk,all the best what future brings you xx. Peter

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Me too it is all very strange I understand x

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Bless you Tippy! You have done amazing so far and I’m sure you’ll continue to carry on with this new chapter in your life. But I know it is very strange and horrible but your a fighter and I reckon you’ll get through somehow....we are all here for you darling x

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Glad everything went well yesterday. It will give you lots of comfort in dark days to follow.

Tippy, I won’t sugar coat this, the next few months are going to be the hardest of your life. Take your time to do every thing. If you don’t feel ready to do something, then DONT! As others have said, there is only one way to grieve and that’s your way. I hid under a blanket on the sofa, others go out as much as possible. Both are right.

The only thing I will say is, stay in touch with us, family and friends. Nothing is going to make you feel better, equally nothing can make you feel worse. Remember that, if someone invites you to do something.

Sending big hug and much love.

Lots of love

Anne

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Dear Anne

Thank you. It is good to have this feedback which will help with realistic expectations. Not sure anyone can prepare you beforehand for the exhaustion. People keep saying that I must be catching up on sleep and recouping but it is the exact opposite!!

It will as you and others have said take time to learn a new way of living!

Love Tippy xxxx

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I found I was " on alert " for ages after. It was a long time before I stopped leaping up when I heard a noise and checking in the room he had been in although the hospital bed went immediately.

I agree about going out but I also found it really hard to be with my family without him. I feel the loss of him before PSP took over more now. It's hard , Tippy even when I know everyone says how well I'm coping.

Big hug from Jean x

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I’m glad it was what you both would’ve wanted. 7 months after my mom died, I still have to remind myself not to cram getting milk or gas into any free 10-minute window of time. Slowing down is so hard. So is the emptiness- and I have a spouse and two lively young sons. Still, the void - especially in her room - is huge despite a 7yo old now occupying it. Ride the waves and be kind to yourself. Rene would want that for you, I’m sure. Big hugs.

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Thank you do much xxx

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Sending warm hugs your way.

Tim XX

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I can’t add to any advice here. Everyone said it perfectly. Just go slow. People will be hard on you for it but it’s your grief.

Cuttercat

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The very best of luck on your new journey. There is a future out there. Rob

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Bless you Tippy for all the advice and support you have given. This difficult part is the grieving and the release. I glad you have friends to help you through these sad times. Take care... Val

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Sending you love and best wishes for the future.Acorneater.

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oh, Tippy! May support flows to you and accompanies you. Much love from London

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Just one step at a time Tippy on this new journey...Hopefully the memories will help carry you along...Hugs

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Start slow this new journey, smile a lot. Stay with us on this site, you can help others and and also fieling how others acompanies you. A big hug Pitty.

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Dearest Tippy... You are love & loved... Sending Hugs... Granni B

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Love to you too Tippy and big hugs for this sureal new period of your life. Love AliBee x

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Dearest Tippy

My heart goes out to you. I dread the day that it happens to us but take comfort in the knowledge that "The fight or o'er, the battle donr" and that he will be at peace.

So my dear, keep on keeping on.

Love n hugs

Anne

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Dear Anne

It is the strangest most surreal time. I think our role of carer gets into our DNA and is incredibly hard to shake off. But i do recognise it is early days for me.

Take care of yourself

Love Tippy xxxx

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Dear Tippy sending hugs at this sad time stay in touch and be kind to yourself it’s your time now

hugs my friend xxxx

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Dear Tippy, I haven't been on the site much recently as have been away from home and whilst dipping in to old posts yesterday I was so sad to see your post on Rene', but it made me smile that you you were able to give him the beautiful final goodbye that you and your family wanted and were able to make it a personal tribute to him, something that I am sure will bring you comfort as time marches on. It's been 7 months since Rod lost the battle, life will never be the same without him but it carries on and we do find yet another new normal. Don't worry about the challenges ahead, Tippy, let the tide take you but don't allow it to let you sink. Best wishes to you as you navigate the twists and turns ahead, just make sure you embrace the straighter stretches. Love HilsandR. X

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I'm very sorry for the loss of your husband. May comfort and peace embrace you.

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Good for you planning a warm supportive event on your wedding anniversary - I had the celebration of life on our 28th anniversary and it got me over that "first" nicely!

I'm just 10 months ahead of you Tippy, but already I'm starting to have some normal feeling days and don't want to die and join him - every day, at least!

Hang in there - you're not alone. ❤️❤️

Anne G.

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Dear Tippy, sending you love and best wishes as you encounter new challenges. Take good care of yourself now. Lots of love, Nanny857xx

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