I'm only (ha ha) 57, even bringing B****y PSb****yP into the equation, I did not expect to be on my own just yet, I thought F had at least a year, maybe 2, at least another 6 months at reasonable quality of life.š¢š¢š¢, just can't believe I am on my own so soon
Can only say to those at the start of this treacherous road, as others said to me, do things while you still can, and I personally think there is no timescale on this illness, my husband was diagnosed in just over a year, and has sadly passed 15 months after that.
I hope that post doesn't upset any sufferers on this site, you are obviously really doing well to even be reading/posting
Properly need another group hug,
Feeling lonely already
Lots of love
Debbie xxxxx
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Debbieann
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Oh, Debbie, I'm sorry you are feeling low, although of course you are. Fred left you so suddenly. You have to get through this, somehow, and all I have to offer is sympathy and hugs, and knowing that this will pass. Everything does. Hang on. Hugs to you, and love, ec
Debbie at the moment I am sitting in A&E with Keith, his swallow has got really bad, he's dehydrated and has agreed to a peg feed, I understand how you feel and I wish I could make things better for you, but as we all know I unfortunately can't for any of us on this devastating road, I'm thinking of you Debbie and crying for you as I sit here wishing I had a magic wand to make it all go away....
Hi Amanda, it's now 8.20 in the morning, I haven't slept at all or had anything to eat since 2pm yesterday, Keith isn't good, we are now in a specialist department because his potassium level is low? He's pulled his fluid drip out at about 5am this morning, nurses have just fetched me a brew and are making me some toast, I'm exhausted and feel like I'm going to pass out....xx
Pat!! You simply HAVE to look after yourself, you don't want a bed in there too, do you? (Well maybe you do, to sleep)?! You MUST get some rest and eat, it won't help by you becoming unwell! I'm pleased your gonna have some toast and tea! I think potassium is found in bananas but don't really know anymore than that?! What a bloody awful worrying time for you both! Please make sure you eat properly today and get some sleep darling x
I wish, I daren't take my eyes off Keith cos he pulls everything out, all his drips, catheters, you name it, bless him, I look and feel like an old zombie! xx
Oh honey, of course you're lonely. Hang in there and remember the best times. Sending hugs. I also think someplace warm in March is a good idea. Planning and organizing will do your mind good.
Hi Debbieann It is OK to feel sad and cry at such an early stage! Grief counselling might help you if that can be arranged - or talk to someone who knows your circumstances. It helped me. Don't bottle up your feelings or stay home too much. I found people who have become my friends - at church, groups I was in loose contact with, nurses and other carers. Family have been good too, phoning and calling in the first few months. This should be happening for you.
It takes TIME to grieve. You need to give it some time! Get rest, good sleep, walk, scream and cry, and learn to relax, read, listen to music, and learn to get comfortable on your own. Your lovely Fred is at Peace! No longer with you, but all around you in your memories! Remember the good ones!
At 57, you have time to grieve, move on gently and gradually, and think of things you always wanted to do.
I am 73, and in last 6 months have realized that what used to be on my bucket list is probably not all achievable! I spent my 50's and early 60's being a full time nanny-carer to 3 of my grandchildren. Then found myself caring for my man.
I bet neither of us would wish our lives any different in that we both did what we felt was necessary at the time.
Be proud of what you have done. We here know what an effort and sacrifice it has been!
When you can, think forward and start to plan YOUR LIFE! But first take time out and learn who you are now. Draw from the strength you have used in the past to pull you through.
It has been said before - this is your NEW NORMAL! Try to look forward, but learn to enjoy your memories of happier times together!
It does get better!
And there are - sadly - at present, many on this site going through the same process alongside you! They will be having the same feelings as you. Talk/message them too!
Big HUGS from me. And HUGS to all you other wonderful carers who have finished their duties!
Debbie I am so sad for you, this PSP is the most horrible illness, even the professionals don't understand it, sending you a great big hug, the offer to meet up is still there?
It is early days, and still a shock to you that Fred went so quick, scream and shout, good idea to go somewhere warm in the spring, so many people on the site are going through this as well, so sad.
Aww Debbie, of course you must be absolutely heartbroken and sooo lonely! It's actually really difficult to know what to say, except I'm sending all my love and if you want to message me, we can swap numbers and chat, I dunno might help a bit? And maybe not?
Debbie it is so hard for all of us who have lost our dear ones but it must be extra hard for you as you weren't ready. I dont think any of us are ever really ready but at least in my case I know that D couldn't have gone on as he was, suffering so much and completely unable. I think that as well as all the other completely natural feelings of loss, you are probably suffering from shock as well because it was unexpected. Do try to get some bereavement counselling if you can. Perhaps the Hospice can help with that. Be kind to yourself, it is very early days and if you want to have a little while doing absolutely nothing then do that. When you are ready, plan something small and easily achievable to look forward to. Don't feel you ought to do all the things you always wanted to do now if it all seems too much. Small steps are easier. I am a couple of months further on than you and it is still very hard at times, but the initial feelings of panic do lessen a bit and the times of feeling on an even keel get a little longer as days go by.
Hi Debbie, have you had the funeral yet? I felt in a kind of lost limbo until we could all say goodbye properly. Your darling has only recently left you and you are going to feel empty, angry, lonely. You are grieving and we all have to grieve in our own way. Do you have friends and family to support you? If you do, ask them round, go out with them, as others have said, try and have a holiday, my first one was offered to me at my husband's funeral with, "I know it's probably inappropriate but will you come away with us". Within 3 weeks I was laughing with friends in Hungary. I still cry every day when I see my darling's photo but say out loud, " Hello darling, I still love you, you know that don't you". Then I get on and do something to keep my mind and body occupied and if I'm going through a tough time, I ring a friend, go for a walk or visit an elderly neighbour, anything to stop me from thinking too much of what I have lost. When PSP was first diagnosed I decided that when I was finally on my own I would volunteer for the National Trust or to work at our local Hospice shop so I wasn't alone too much. Now I've reached that stage, I don't have time to volunteer for anything.
It's still so early for you. You are still, to most of us, very young and hopefully will have many years ahead of you. I imagine my darling looking down on me and know he wouldn't want me miserable so I say to him, " OK sweetheart, I'm off out tonight. I wish I was going with you but you will be with me in my heart". My way won't suit everyone but in time (not too long I hope) find your own way, but one that doesn't keep you at home alone with your thoughts too much, unless they are happy memories.
I'm sending you a great big hug Debbie but wish I could come and take you out instead.
Oh Bev good on you, I am sure Colin is enjoying being in your heart a visiting different place, meeting with friends, and trying to move on with your life. ā¤šø
Roller coaster end of your journey, I have met a few bereaved girls at our local psp group, what you are feeling is grief , the process itself is healing eventually, the women I have met once rested and having time to reflect although very sad have looked physically new women.
I say I am grieving through this nightmare but I am kidding myself I know. The panic I feel at each cascade down due to the unpredictability of the illness is awful.
I'm sending you love right now and strength to cope ... everything you're feeling is normal . I really do wish I could do more for you to help . You are not on your own .. we are all here for you no matter what! X
Hi Debbie, 15 months from diagnosis to the end shows a very aggressive form of the dreaded PSP which robbed you of F. In many respects you have gone through carers hell which many of us have, blaming yourself for not doing everything you planned together, not being able to heal him swearing when he did the things you did not want him to. You must not beat yourself up, you did all that PSP let you do for him. Now is time to grieve but also to get yourself back to society doing things for yourself again. Do things slowly but do things.
While preparing for M's funeral I have come across a poem which sums up what I think all bereaved should read. It is "Courage" by David Harkin: "You can shed a tear that he (she) is gone, or you can smile because he has lived..." Google first line for rest of the poem.
I thought 65 was young but if M had lasted 15 months rather than 6 yrs I would have been in your boat 57 is so young to lose your partner. Anyway virtual hugs and do not feel guilty for crying (or in my case not). This is an intense period but you must move on after a short time of grief.
You say you haven't cried? I guess crying has never been a manly thing, although I don't see why not, you guys have feelings as well as us girls. But I guess grief isn't just about crying, yes I can cry easily at the slightest little thing, but I haven't cried as much as I feel I should, maybe Im all out of tears considering the last 18 months I have lived, and I have cried/sobbed my heart out almost every day, I am so so sad though. But I don't have any guilt about crying, right now I'm entitled, although I must admit I'm avoiding going in the chemist or the 'corner' shop, where they will ask how my husband is, I don't want to cry in public!
I hope everything is going well with your funeral arrangements, I guess your better prepared than me. We'd not really got around to the finer details of his wishes, it being a touchy subject. The last conversation we had was he'd leave it up to me, but I guess that's how he was in life!
I know you once said you didn't do hugs, but sending you one now as I think you need it as much as me
please accept my sympathies but i was told that it's not the psp that kills you but the effects like pneumonia or trauma due to falls , at the risk of being too cold I would really like to know the cause of F's demse
I'm so sorry Debbieann to read your post. PSP is so cruel to everyone that comes on connect with it. The progression of your husband sounds like my mum, we're 12 months from diagnosis and she is a shadow of herself. I feel your pain, however I hope and this is difficult to write, but I hope my mum goes peacefully. Sending you my love, I hope with the help from family and friends you can begin to pick up the pieces and live life again.
Dear Debbie, your pain and grief is so apparent from your post, how I feel for you. I'm guessing that the funeral hasn't taken place yet and that you are feeling like you are living in limbo land and can't get to grip with your feelings. I know that there are several stages of grieving one being disbelief and another anger before the acceptance. You are at such an early stage of the process Debbie and I suspect your mind is either numb or racing all over the place. I hope that you are seeing or speaking to family and friends and let them help you through this emotional time. Have you contacted the hospice to see if you can have bereavement counselling, it will help you to make sense of your feelings and help you to understand yourself. Please look after yourself Debbie and keep posting for support, we are here for you.
I really feel your pain and loss as my mom just passed away a week ago. No length, no way, what could we have done more, why and all questions are ....ringing in my head. I am very sorry to read many of our loved ones from this site passing away.
Let us be comforted our loved ones don't have to fall down and crack their heads anymore, and don'tneed to be confined in a wheelchair.....
They are free from all the suffering and our love for them will live on forever.
You take good care of yourself and I believe life will be more smooth for you and I.
All these replys....you are loved! You are not alone. Take the time you need to grieve. Yes, you are too young to have gone thru this, but unfortunately we cannot write our own story. But you made it thru and there is life out there for you. You have learned a lot thru all this, I'm sure. Give yourself time, it does help heal. We all wonder if we're going to make it thru this PSP caring for our loved one,you did. And you did a good job! Breath, rest, be good to yourself! May you be blessed! The sun will shine again!
My heart breaks for you, for me, and for all going thru this journey.
Dearest Debbie, my heart breaks for you. Fred going so quickly was not what you expected. Indeed none of us expected it. You are grieving and that takes time. You are 57 so with good luck can do things some can only dream of? Not for thinking about now maybe but don't get too down. You have to get through the funeral first? Just take one day at a time. Live tomorrow as it comes and on Monday we will all be thinking of you. I wished I lived near you but sadly I don't.
I am living like a hermit at present and here I am telling you what to do! Going to see a neurologist on Monday with G! Worrying about it, especially as nobody seems to be sure what he has.
God Bless and take care Debbie. You are always in my thoughts.
Dear Debbie, my heart goes out to you and I wish I lived close by so I could call in with you and personally give you a big hug, have a chat and go out for a coffee. Unfortunately that's not possible but please know that I'm keeping you in my thoughts and prayers and that you will get that strength to carry you through these hard times. Sending you love and lots of hugs. Nanny857xx
I feel so sad for you. Do you have family and friends who you can reach out to? If so do do. They may be afraid you might think it too soon. Let them know you need their company. Huge hugs to you.
Dear Debbieann wanted to let you know that yesterday In memory of your Fred and in honor of the care that you have given to him, we did an act of random kindness at a local nursing home. Thinking of you and a huge hug.Noella and Ron.
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