Just me and my mum today, she is late stage PSP. Finding it hard to keep motivated today for the both of us.
sending lots of love and strength to everyone who is going through it this holiday season, and if you are managing to bring some joy to it all I salute you and keep on keeping on! It’s definitely no easy feat.
Came here for the first time, to post something similar. I’m not alone with my Dad but felt like it was all a farce of a real Christmas, whilst he lay bed bound next door with his carers coming in to see to his needs. In the midst of it all I feel I have to put on the show for my young son, who shouldn’t have his childhood marred by this terrible condition, but who I really can’t protect from it. Whatever you’ve done will have been your best. May you and your mum have some peace and joy again soon, it’s all I hope for for my family too. Xx
That doesn’t sound easy at ALL. Having to be all things to all people with so much playing on your mind! But I bet your da loved listening to Christmas next door and you’ll be reading into your son’s childhood more than your son is, he’ll simply remember this day as brilliant fun and he is lucky to have you there. I hope you managed to get a bit of time for yourself to recuperate and relax, I couldn’t imagine balancing actual parenthood with having to parent your parent as well! Sending you peace and joy to your family too, it sounds like you’re doing a terrific job in heartbreaking circumstances. You got this! X
Courage. A small contribution in the right direction is a lot. No one is obligated to give more than they can give without hurting themselves.
A big hug.
Luis
Love and best wishes to you both. Christmases were especially hard with dad. Be very very kind to yourselves. X
I so agree with you about “ a farce.” My husband is late stage PSP with the added complication of progressive pulmonary fibrosis. Yesterday my wonderful daughter, who has moved into the area to be nearer us, turned up with a cooked meal +her husband and 10 yr old daughter. I kept feeling overcome with deep sadness as I watched my husband sitting in his chair, struggling with food and drink,fatigued and now unable to talk. As my life partner of 53 hrs, he is slipping away from me which is desperately sad and I really worry that I don’t have the physical and mental strength to keep my promise to him to enable him to end his days here at home. I fear what 2022 brings. am very lucky that he has CHC funded 24 hr care, hard fought for but that is a whole other story! ( Thank god for this group! Sending love and solidarity X )
Courage. A small contribution in the positive direction is a lot.It is normal for you to feel fatigued and sad about what you see and expect. I remember Anne-Heady's words that have supported me until the end:
"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
A big hug.
Luis
The sadness is so real. So much of this disease cuts you off from the person you used to know. I hope 2022 brings you both joy, sending lots of love!
The Christmas atmosphere that you can create also reaches the bed where your father is and the caregivers who take care of him.
A big hug and courage.
Luis
Thank you for sharing I’m in the same boat such a horrible disease that know one can understand or wants to unless they have a family member that is suffering we’re all hoping the same thing that this is their last Christmas but our hearts are breaking at losing them but we’ve already lost them haven’t we ? We’re just battling for them every day so much ignorance in the world
Stay strong my friend x
Very true words.xx
Thank you 💕hugs to you
Courage. A small contribution in the positive direction is a lot.It is normal for you to feel fatigued and sad about what you see and expect. I remember Anne-Heady's words that have supported me until the end:
"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
A big hug.
Luis
Thank you, so accurately put that we’re both losing and have lost them. Sending hugs!
Hi super, we are more lucky as my daugther and her husband and the two lovely kids came visiting, affording a very long travel. So our Xmas was less and less a solitary one. But even if you are alone, be sure that the community of psp is with you !
Thank you and it’s a relief to hear there can be good times too! Have a wonderful new year x
Thinking and praying that they will not suffer more than they can bear. My husband is in his useless body too and it’s been 10 years since the onset of PSP. May God give us all strength.
Snap, we’ve just finished our tenth year since diagnosis. Agreed, so much of the sadness comes from the wish for them to suffer as little as possible, just feeling so helpless too. Love to you and your husband.
Christmas 2018 was relatively normal although my Mother had died earlier in the year. However by Christmas 2019 my darling husband was end of life and not expected to last over the holiday. He did, bless him, dying on the 27th minutes before the family were due to arrive. The District Nurses were superb as was our GP who came as soon as I called on the 27th.So the past two Christmases have been difficult, dratted Covid and necessary restricions. Christmas has always been joyous as our darling daughter was born on Christmas morning. But, sadly no so these days.
I'm reassured that it will get better, so I keep on keeping on.
Hugs xx
The bad times will pass. The loss of those who left and the sadness will remain but remain encapsulated.There is much life to live and many loves and tasks that need us.
A big hug.
Luis
I’m so sorry that’s a really sad run of christmases! Your positivity is incredible though, and things WILL get better. Hope 2022 has good things and happiness in store for you and your family. X
Keep going, your Mum will appreciate every moment even if she's not able to show it. I lost my Mum 2 years ago just before Christmas and though Christmas has its poignant moments of reflection I am very lucky in that there are lots of lovely happy memories which I know are the ones Mum would wish me to think of most and I'm sure your Mum is the same. xxx
The memories are such a lovely salve for this bleak set of circumstances. Hope you are doing well and thank you for your words, have a great new year too!
I know what it feels to be alone. So lonely but I cannot cry. I have MSA and few people want to know. Taking its toll on hubby,who has gone to football,hope I am not here next year there’s nothing to look forward to,only worse progression . How do you cope ?
It is lonely but you are not alone here, I’m sending you so much love right now. I wish I could give you a big hug! If it’s all taking it’s toll on your husband he may be struggling to show you the love he has for you, and I know too well that feeling of people not wanting to know… remember you are lovable and loved but it just can’t be shown in the same way it used to.
how do I cope… gosh it is hard, but I guess the only thing that works is to try not think too much about it. I am usually a very positive person but struggle to bring any humour to the situation, which I’m just trying to accept and stop beating myself up about.
You are having to be incredibly strong and give yourself credit for that. I’m sorry life is testing you in this way. I hope 2022 brings you happiness and love.
I’d love to get your perspective as you are the patient not the caretaker and it’s difficult to talk about these things with my mum… What would mean the most to you for your loved ones to do, what would make you happiest, how could they make you feel better?
It breaks my heart to watch him watching me going through this. Seems each day we have something new to contend with
There's a site CurePSP - current news and some help if you want to be involved with zoom meetings for the issues we're all facing. It helps me to know there are others out there who understand.Kind of glad holidays are over. Sad. We didn't enjoy the same kind of Christmas either. It wasn't just the PSP. My family is feeling the fatigue from the covid and all of the bad news.
They have to deal with a lot of aggravation on the job. I didn't want them to try to visit as normal on Christmas- as they all need time to rest and be with their family.
I do feel blessed that the caring people who help us out a few hours a week are still coming and we've become like a special little family.
It's healthy to nurture ourselves as we care for loved ones. When we aren't exhausted we can do loving things that will matter. I wonder how many people are handling caring on their own, I heard a statistic 1 out of 5 families. For me, as I sometimes feel down, I count all of my blessings. I know this will pass, I focus in the moment, and am patient with the constant needs. I've let my own health slip, really have to get back on track. we all come out of this as different people, I think. I hope I've learned how to love and appreciate each person in my life so much more. In a way, I also learned so much more about myself and my capabilities.
I saw a sign on a church bulletin- a diamond is a chunk of coal that did well under pressure. H.Kissenger
Shine on.
The struggle is over, the fight was difficult the warrior strong.
Walking very difficult now
Finding things difficult.
Difficult decision day today
Difficult decision coming
