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Not looking forward to Christmas

Not gonna lie, I hate the thought of it! Don’t mean to be a grumpy old humbug but I’m really not looking forward to it! People and friends keep asking what I’m doing? I feel like saying, are you actually stupid? What do you think I’m doing? Answer = spending time with Dad at the nursing home, his new home. Then they ask, so you’ll do your dinner when you get home? No, course I won’t, are you mad? I’ll do a jacket potato or chicken nuggets etc etc! I cry as I type because this sounds so sad, but it bloody well is! And I’m sick of it, for my Dad, for me and for my Mum! If we are in the same situation next Christmas I’ll probably have a breakdown......I won’t wish you all a happy Christmas because I personally think that’s stupid! Nothing about Psp makes you want to celebrate, you just need to take it day as it comes...a very fed up Amanda x

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Amanda I feel for you. You don't owe an explanation for the way you feel.

Enjoy your potato and nuggets.

Much love, Althea

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Aww thanks Althea, so kind, when you have so much to deal with yourself x

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Hi Amanda

I know it’s hard love but unless they totally understand things about this illness they don’t know

Remember you do a brilliant job with your dad and also your mum and through talking to you on here you are a very strong person

Last Christmas Archie was in hospital nov to jan so it was quite here didn’t see a sole only at hospital

This year he’s home but again I’ll be doing same but mine might be a pastie as he’s on a peg

You do your visiting to dad with your mum and please enjoy the time when you get home have your xmas feed baked spud or nuggets enjoy then and get your favourite tipple and have a well deserved drink or 2 or 3

You take care Amanda and I know it’s difficult but get your chin up love and do what we all do and crack on as normal

Sending lots of love hugs and kisses to you and your family

Sue xxxx🤶🤶🤶

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Thank you Sue, sending you huge hugs x

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Hi I am cooking Turkey I am going to have to do everything as always all the cooking and washing up but am going to make sure I have my christmas dinner thats for sure. I was expecting all of this to be over by 2018 but seems not the case, goes on forever never ends . Merry christmas to one and all xxxx

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Your right Escada, it never ends! 💕 x

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Yep it's amazing how it continues on. Bless you

Cuttercat

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As long as you open a bottle of bubbly to go with your nuggets. Then that's fine!

Amanda, if last Christmas taught me anything, it was there is such a thing as the Christmas spirit. I'm not reglious, but I think, it should be about love and caring for each other, especially yourself. I felt that in spades, last year. We were meant to be going to my sisters for lunch, so I had nothing in the house. Some how we managed a lovely dinner, quite a few people gave us food, even had a Christmas Pud! We were shown so much love in those small gestures. it was just my daughter and her partner and me. We took it turns to eat, or sit with Steve. In the true meaning of Christmas, it was probably the best I have ever had.

Yes, it is sad that you won't be able to sit down with your Dad, but there is still you and your Mum. You still need to feel that special love and so does your Mum. You will celebrating the love you feel for each other, don't let the evilness of PSP get in the way of that.

So get out your Christmas jumper, go buy that bottle of bubbly and have a wonderful Christmas, feeling the love that it is meant to celebrate.

Lots of love

Anne

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Bless you Anne, sorry because I know this isn’t a good time for you, I remember last Christmas only too well for you and Steve. Thank you, as always, for your input and kind words x

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I knew last Christmas was going to be our last together, even before I knew he was in the final stages. I was determined, it would be a good one, that I would never forget. OK, that wish was granted. For all the horrors, it still was a very special time and being Christmas played a very important part. What I am trying to say, very badly, there is no need for you to dismiss it, because you are going through a terrible time. In fact, quite the opposite, embrace it, to help you get through this. Do it for your Mum, make her celebrate, for you.

Lots of love

Anne

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Anne, I read through tears, thank you, I’ll try! Must must must try to stop being a misery guts!!!! X

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Don't give yourself a hard time, Amanda dear. You have been such a stalwart fighter. You are allowed some down time. I know you will carry on when you must. As they say, if you find yourself in hell, don't stop there.

Love, Sarah

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Thank you Sarah, huge hugs x

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All of us feel those feelings. We all have despair at the same time as trying to finds bits to treasure.

Big hug for you, Amanda xx

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Aww huge hugs back jean x

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Amanda you know what? I agree with Heady. Last year was not a happy Christmas but it was G's last so we put decorations up for him. He probably couldn't have cared less but we wanted him to be in a nice festive room. We spent time with him on Christmas Day and after he had eaten his lunch we went and had ours in a local pub.

I was alone in the evening and that was so difficult I must say. However I am glad we had Christmas Dinner. This year he isn't here and I really wish he was. Not the man with PSP and MSA though. I wouldn't wish that on my worst enemy.

Amanda people don't understand what you are going through. Maybe if you had broken down and shown how upset you are they would? However we all try to be so brave and self contained don't we? Maybe it's our armour to help us survive? The trouble is everyone thinks we don't need help or an invite to dinner? We do!!

So my friend Amanda be angry at PSP. Don't be angry at people who don't understand how heartbreaking it is. Tell them the truth!! That is the only way people will ever understand.

Love and hugs to you and your Mum. Her heart must be breaking? Just as yours is. Take her home and forget the nuggets! Cook some chicken and veg and buy a nice desert. Have a glass of wine too. Your lovely Dad wouldn't want the pair of you to be sad and alone.

As a matter of interest could you order a meal at the Care Home and all eat together? I often did that with Garry. He loved it.

Take care Amanda. Hugs to you darling.

Marie x

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Marie, I cried reading your reply, thank you, wise words, that I ‘should’ follow! I’ll try and take note!! X

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Amanda I wish you were near me. You could come with your Mum to have Christmas Dinner. Just remember what it's about though?

You will laugh now but I went Carol Singing in a pub last night! It was great! They wanted to know what choir we were 😇. Actually two of the women are members of a choir! They made up for the rest of us! 😁. Some kind person has taken me under her wing and invites me to meals out and concerts. Last night it was a meal and Carol Singing. That was new to me I have to say but I really enjoyed it.

I suppose it's called normal life? Like everyone else, that is put on hold when these evil conditions come into our lives. Give your lovely Dad a big hug and an extra one from me! The same to your dear Mum. As for you madam you are hugged to pieces! You are a lovely daughter. Remember I told you I wanted to adopt you? The offer still stands! 😊

Cry when you want to but don't forget to smile too?

You will get through all of this just as the rest of us are doing. It's not easy but you will do it. You have an inner strength which you might not realise but the rest of us do.

Lots of love to you.

Marie x

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Aww Marie you are simply adorable and more than anything I’m so proud you, you are at last venturing out!! Good on you!! X

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Hi Amanda it does sound very bleak but last Christmas my hubby sat at the head of the table with my family. I cut his food into small pieces and fed him also putting a glass of red wine to his lips. This year the head of the table is empty....... and as my family sit around it we will not wish each other a Happy Christmas because our loved one is not with us. Yes no one can deny PSP is vile ...horrible .... disgusting and takes everything from the one you love. Enjoy your dad .... however hard it is make merry with chicken nuggets and a glass or two of the good stuff. I know you love your dad and he loves you .... make this Christmas special. Will be thinking of all PSP sufferers and carers this Year. Love Jxx

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Thank you Zeberdee, my heart breaks for you 💕 x

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Hi, Steve's place was at the head of the table. It won't be left empty. That's my place now. I will sit in it with pride and no doubt a tear. We will toast him and every other family member, no longer with us. Then one to ourselves, the ones that have to carry on living, to prolong their memory.

Lots of love

Anne

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Well done Anne take your place with pride, I have a very important job to do on Saturday, Horace has bought the turkey from our local butchers for more years than I can remember, I managed to take him for it last year and on leaving the shop there was tears falling down the butchers face, this year Horace is in a nursing home, he cannot speak, see or walk but on my visit today the word Turkey came out clearly, I asked if he wanted to go for it with me on Saturday and there was a big smile and thumbs up, how the hell I am going to do it I don’t know, but I promise I shall it’s always been his gift to the family and I know how important it is to him, so wish me luck in bending and folding him into the car to do this very important job with him

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Go for it!!! So it takes you a couple of hours to get him in and out of the car. What price for giving your man something he really wants to do. The memory and comfort it will give you, is priceless.

Sending big hug and much love

Lots of love

Anne

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I know how you feel, Amanda, as do many of us. I found years ago when I was faced with sad and lonely holidays that I would do a couple of things that were really treats for me...a walk, a movie at home, some food and drink that I liked. It was not always easy to do, and maybe just being home and having a good cry is what you should do, but whatever, try to think of your taking a little time to care for yourself. You are not alone. We are here. Love, Sarah

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Thank you Sarah! Again you are always here for all of us and I treasure that, thank you my darling x

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Hi Amanda

Bloody well is sad!

Miserable.

Waiting, loving, caring, watching and waiting.

Well tomorrow its Solstice and I've got some fireworks knocking about so I will send a rocket up for you and your Mum and Dad. I'm not actually a Pagan, but I do like the idea of calling the light back after we reach the greatest darkness.

Hugs and love to you all.

Kevin

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Solstice does mean something in the northern latitudes, and I am with you in that, Kevin. Fire away!

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:)

Yes, asking for another planting season, breeding season and a confirmation that life will continue.

A celebration of what might come on this beautiful planet.

(Yes, I've moved away from the fear of a dark Spring etc...)

Wassailing is tougher... beating an apple tree and singing to it whilst drunk is not easy... and might render me liable to arrest.

xx

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Lol Kevin I’ve absolutely no idea what solstice is? Sorry I didn’t pay much attention at school x

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Amanda!

Its when the days are at their shortest. The Winter at the darkest.

In old times folk would have a festival... Holly (with red berries) and Mistletoe would be hung on the doors as they were still green and represented life.

(This is where the Christmas decorations come from BTW - That tree was a celebration of the green and life).

Back then folk were trying to get through the Winter with whatever food they had stored. It could be a hard time and cold. They celebrated the end of the shortest day as the next day the Sun would be in the sky a little longer. The days would lengthen and eventually there would be the renewal of Spring with hope and planting. with what food they had stored.

It is a welcoming of a return, a hope for better things.

Hugs to you.

I can only guess at how sad you must both feel as your Dad suffers and struggles.

Love

Kevin

xx

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Ooh thank you Kevin for explaining! X

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Solstice sounds like a symbol for our lives now... Thanks Kevin - never thought of it before.

Anne G.

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Steve and I always celebrated the winter solstice. Just a clink of glasses. Love the idea of fireworks. Yes, folks, the nights are going to start drawing out again. Bring it on. Hate this constant darkness.

Lots of love

Anne

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I shall clink my glass with you both.

Folk are still with us whilst we love and cherish them and the journey then is still shared.

In sadness but warmly to you both.

Kevin

xx

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Hi Amanda

Don’t let the vileness of PSP spoil your Christmas. Celebrate with your mum and dad. I don’t know what stage your dad is at in the illness, but if you can........take pictures, record video (I’d give anything to hear my dad’s voice again) and see his smile at me being goofy! Make special memories that you can treasure and that will take you through the hard times ahead.

We’ll be raising a glass to dad this year, an empty seat at the table........

It’s a hard road, but don’t let it win and drag you down......you are all worth far more than that.....

Will be thinking of you and all the other PSP families......

Hugs

CJ xx

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Thank you CJ x

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You have every right to feel like you do Amanda 😢 PSP strips away every bit of happiness out of life. You and your mum enjoy the day in the best way you can. God bless you ❤

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Awe bless you, thank you x

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Like Zeberdee I remember last Christmas. Chris was able to feed himself and enjoyed the meal and demanded two puddings ! We were so happy for him.

Its so much more difficult in your position. I know I would find it hard too. However you need to find a way to make it special too. Sharing memories ?

This year is hard for many of us.

Big hug from Jean xx

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I know it’s extremely hard for so many jean and actually I feel rather guilty now, for writing this, but as we all know, sharing on here soooo helps x

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Amanda so sorry to hear how sad you are feeling, I hate psp, George would always sit at the head of the table, feeling sad also, George is coughing and choking, I think this will be his last Christmas, sat holding his hand today, while he was watching tv, he raised my hand and kissed it, so sad.

Our children have had a bit of a full out, so I am stressing about that, I hate arguing, have left them too it, just want to sit and cry, George has been sleeping well, but I have been awake every day at 4 o’clock so much going on in my head, feel like I have aged over the last week. Love to you all Amanda I wish also you was near us your mum and yourself would have a seat at our table. Like Anne says open a bottle of bubbly, get something nice from the shop that you can put in the oven, with a lovely dessert and raise your glass to your dad. Big hug. Yvonne xxxxx

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Thinking of you Yvonne.

Sending big hug and much love.

Lots of love

Anne

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Bless you Yvonne, thank you, sending much love to you both x

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Dear Yvonne, it seems life is pretty tough at the moment, what with George being so poorly and you not getting a good nights sleep. On top of that the children having a bit of a tiff. I would think that is all to do with the stress that PSP brings with it. I'm sending lots of love and hugs to help you through and hope that all turns out as best it can be over the Christmas period. I had no inclination to do any of the Christmassy stuff but the family are her for Christmas and I put in a bit of effort and am pleased to have some twinkling lights and a few decs. Some friends have popped round the last few days and the bubbly has come out, I feel all the better for it. As Anne says, get some lovely ready made food and treats and open a bottle. I will get raising a glass to you and all the other lovely people on this site.

Remember to think about yourself and enjoy some delicious treats.

Lots of love

Kate xxx

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Thank you Kate hope you have a lovely day with your family xxxxx

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Thank you Anne xxxx merry Christmas xxxx

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Rage works for me.

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Me too Jeff me too x

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Hi Amanda,

It is a very cruel disease.

Christmas Day for us will be going to see my dad in his nursing home then leaving feeling very guilty to spend it with my in laws.

I’ve been through emotions this week. I spoke to the council querying their report over my dad being “assisted whilst brushing his teeth”. I wanted to know what that entailed. It meant the staff watching over my dad as he attempted to clean his teeth. My dad can’t brush his own teeth or wash his own face which I mentioned too. My dads face around his beard has food left in and his eyes after his drops are very crusty and looks like he has conjunctivitis.

The nursing home had a word with me after receiving a complaint from the council and told me to to not make a small problem into a big one again and that it was the last bit of independence my dad was having.

Yesterday , I received a phone call from the home to say my dad had fallen out of his wheelchair whilst stretching to pick something up from the floor. He’s grazed his head and arm. The thought of him falling and not having strength to support himself as he landed and wondering how long he was on the floor until someone heard his cry for help upsets me.

Try and have a lovely Christmas.

Mel x

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Hi Mel, not liking the sound of your Dads home! I’ve actually just been chatting to Kevin, the entire care system needs a massive overhaul but I doubt it’ll happen in my lifetime....hugs x

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its so easy to say dont be sad but living with this cruel illness is hell have a lovely xmas with your dad and mum

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Thank you Laila x

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You have every right to feel angry bit dont let it drag you down. Your Dad certainly would not want that. Take some time for you and your Mum. You deserve that. I am spending my first Christmas without my Dear Liz but friends have refused to let me stay on my own I have been overwhelmed by invitations. Liz is free now from PSP and she would be annoyed with me if I sat and wallowed in my sadness. Losing her is still raw (its only been 5 weeks) but she would insist on me having some ME time. So dont let it win. I wish you and your Mum & Dad aPeaceful Christmas. Lots of hugs being sent your way. x

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Thank you, sending you much love x

Your bravery is inspiring x

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Good for you George! Hard as it must be I think you are doing the right thing to bite the bullet and take up the kind offers from good friends. I'm sure that your Christmas will get one of mixed emotions, enjoying time with friends and missing Liz. Enjoy.

Much love Kate xxx

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Thank you Kate for taking the time to reply. Your right, I will miss her badly as I do every day, but she would not want me to wallow, so I will raise a glass to her and think of better times before PSP. She loved Christmas and always wanted everyone to enjoy themselves. May all the wonderful people on here, whether cared for or carer, have a peaceful Christmas and create some wonderful memories to hold for ever, and for those like me who have lost loved ones, celebrate their lives and lets be thankful that they no longer have to suffer this horrible illness. May they all Rest in Peace. God Bless you all.

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Lovely sentiments George, I will raise a glass to that. xx

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Hear hear !, George.

love from Jean x

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I feel exactly like you. I put a tree up in our house to make it a little cheery....my hubby is still home....but at thus point i do Everything for him. I left my work lunch once the conversation became...."what are you doin.....". Worse is when his own family.....who wont see him....only a few hors the 24tg....tell ME to have a nice time with my famiy! Uhhhhh...I will make the best of it bur I will be doing the caregiver things like ebery other day....while your brother suffers another day....but tgsnks for stopping by! Ugggh

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I totally get you!! Hugs x

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This time of year is so hard. I've never enjoyed Christmas anyway, always found it a sad time with one thing and another.

I so can't be bothered this year but I have put up some decorations this week. We don't know when our loved ones eternal peace will arrive. I didn't expect Mum to be here this Christmas but she is and we will try to make some memory on Christmas day, just the two of us.

What you have written I'm sure many feel and those who have their loved ones absent this year would love them back home for the day.

Also with the solstice too we've been living in the dark which certainly doesn't help the mood.

I will be so glad when New year is here but then it will be ...did you have a good Chritmas, what did you get up to!?

Big hugs and I hope you are able to share love with your Dad and Mum. It will be hard I know for us all and many others who are suffering across the world with illness.

Xxx

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Thanks Spiral, huge hugs my darling x

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I hear you... it has been hard here too. Not a scrap of a decoration up (I used to be known as the Christmas Queen in the family) -- and that doesn't really bother me -- what does is that I thought I would take pleasure in others' celebrations, decorations, lights - and I'm not. It's hard to go into stores, everything looks so depressing to me now. I want to avoid others for fear that my despondent mood will bring them down. So yes - will be spending Christmas day a bit with mom -- either at the nursing home or at ICU (where she is currently due to a PE). Hoping for a better Christmas next year -- but really hoping for the medical condition to be cured.

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Bless your heart! I totally understand what your saying x

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Hi Amanda. Don't be sad and mad. Today is the shortest day and knowing that helps me through the dark because i know the light is coming bringing hope for longer, brighter and, please God, better and maybe more peaceful days. Do ask the home if you and your mum can eat there. You both need some kind of normal to help you both keep strong and well mentally and physically for your dear dad.

I have just picked up gerrys ashes from the funeral home so he can be with me and our children, all adults, this Christmas. That was their wish.

A tearful, sad time for all but we will get through it and be stronger, more compassionate people for it. All the best to your and your mum.

Marie

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Bless you Marie, quite how you find the energy to respond to my grumble is rather humbling, thank you x

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Since Don’s death 5months ago,I have experienced my first anniversary,his birthday,Thanksgiving,and now Christmas without him.Each event has brought brought it’s own special sadness.I think back to last year and wish I had known those would be the last ones with him so I could have made them more special for him.Hindsight can be painful,can’t it?

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Indeed it can! Huge hugs Jan x

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I was feeling just the same Amanda, wanted to forget Christmas didn't want the family here but they are insisting they good an I'm feeling a bit more Christmassy now. Small tree and a few decks, friends dropping in for a quick glass or two. I hope that Ben can cope with the noise and chaos as they are all here for 5 nights, will face to be strict about Ben getting enough rest and delegate cooking to them. I hope that you and your mum get some kind of enjoyment and the home your dad is on seems a good one, he should be fine. Get to M&S to get some yummy Christmas ready made meals and snacks, get a few bottles in when you get home from visiting him.

Love and hugs

Kate xxx

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Hope you all have a wonderful time Kate with much 🍷 x

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Amanda, I can think of no words of comfort for you. But please know many of us share your sadness. I am happy you can be with him this holiday.

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Aww thank you x

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I feel the same way but I decorated, threw a little party and tried to feel normal. We will be by ourselves happily on Christmas. It's such a busy time and then it's over. One day at a time!!

Love,

Cuttercat

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Well done you Cuttercat!! I went to marks and Spencer’s today, a simply crazy carry for one day!! But at least I got my Dad his food for the coming days x

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Amanda: 68 replies and counting: You may not be looking forward to Christmas but you sure united this community in deep sprit with your sharing :-) Love and peace to you during the dark days....

Anne G.

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Blesss you thanks Anne, I LOVE this community!! No where else like it!! X

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Ditto.

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Sorry Amanda. Its another one of those things this disease has stolen. Only those who have been through something like this could possible understand, even then we each deal with it differently.

I have been hosting Christmas as my house the past few years as mom doesn't need or want the added stress. Christmas is not the same now that we don't celebrate it all crowded together in the the old farm house we grew up in. Since my siblings and I are in the journey together we don't get the "stupid" questions, we have a million unanswered questions of our own. What is sad as we have had to make a backup plan. Dad may refuse to come or will insist on leaving quickly after arriving. In this case, my siblings and I will go to mom and dad house to hang out while the rest of the family, husbands, nieces, nephews, ect will stay at my house. This will be heartbreaking as this is one of the few times a year where all 30 of us are together. Its one of the few times a year we get to see my brother's kids, my great nephews and his wife. My brother passed away 7.5 years ago, we don't see his family as much as before, however they ALWAYS come to the big holiday events.

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Well done you for still trying to keep everything as ‘normal’ as possible, sounds like you have a big family! I hope you all get to raise a glass to your brother x

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This is my 1st Christmas by myself and also the 1 month anniversary of my husbands passing! I don't know what I'm going to do. I'm so numb inside and just going through daily motions! I'm sending y'all love and hugs for Christmas, that is my gift to all the caregivers out there!

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Bless you, thinking of you and sending much love x

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Thank you Satt2015

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Way late,but a virtual hug,hope you founds some cheer.

Dee

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