Does any one relate to this? I seem to be able to try to maintain my sanity most of the time, trying to carry on as normal , but suddenly, I get caught out. I was in B&Q of all places, looking for plugs and hinges, when I was overwhelmed by grief, as I realised how much I missed B.( He was at the Hospice.) He was always doing DIY . Our house is full of stuff that he has put up, made or altered. I have been dealing with such things for at least six years, so I was shocked to have this reaction now, totally out of the blue. I had to fight back the tears. I hate PSP. It steals your beloved from you while they are still there. We did so much together, now I do it alone or not at all. I love the man I have but I miss the man that I had so much.
Caught Out: Does any one relate to this? I... - PSP Association
Caught Out
I hear you R1!
The other day I was skiing, and this cute little family were taking home movies of their day having snowball fights and scenic touring on the lifts (no skiing) (actually that's all I did since my shoulder wouldn't let me ski) ...I just sat down on a bench at the bottom of the run and sobbed....Dad used to take home movies of us skiing and bein silly on the mountain......My daughter burned all the movies to a dvd for her grandma's birthday, but it wouldn't play on her grandparents dvd player! So yah R1, I relate.....God bless us one and all
AVB
Sorry your feeling upset. I havent got that far along the psp road , its only been six months since my husband was diagnosed, some times he still tries to help me do the chores around the house, and gets in a muddle. This then drives me mad because it makes one job into two. He is good at preparing the veg and helping me to cook. Im having to learn to do the meals which is somthing I hate . Thankgoodness he is still able to help me with advice on cooking. The best thing I ever did was to marry a chef.... Brenda..X
My brother was a chef...., I got none of the cooking skill or love thereof.....Yep all I got is lack of height and semi wittiness or is that witlessness.....
Yep! Seeing older couples holding hands destroys me, I feel very numb most of the time now, we have little conversation, today rog was particularly drowsy and difficult to move, I get frightened then, thinking how much worse can it get.
Today was my birthday, lots of visitors but glad it's over for another year.
Sleep tight wherever you are
Julie X having a little cry.
Julie
I've been doing that today too! Crying I mean. It is hard when they are there but they are not the person you once knew. It is worse when you can't even hold their hand or give them a kiss. The feeling of being alone is just awful.
So treasure what you have even if it's not the same as it used to be. I wish I could just hold Garry's hand and tell him how much I love him. I wish I had done it more often.
Marie
Oh Marie! I know that feeling of helplessness and hopelessness? Nothing I can say will make up for your loss. If I could, I would. All I can do is to send. 100 hugs to you and keep you in my prayers. X
Robbo1
Once one of these conditions come along we have very limited time together? Although we know that we still fool ourselves that somehow we will get longer or they have made the wrong diagnosis. Anything which gives us hope?
Eventually we have to face the reality of it all. It is so cruel. So many nice and decent people suffering from it? I so hope they find a cure before more have to face it.
Like you and your beloved we were the youngest people to have to face death. Nobody younger had died apart from my sister-in-law who died with MS and other complications when she was only 60. So both my brother and I have had to face losing our loved ones in the past 3 years. He is grieving more now than he was before. As he has said we must have been very bad in a previous existence. I wish he hadn't moved to Spain though! Miss him a lot as he's the only sibling I have.
Love to you and big hugs. Hope that DIY goes well. I am useless at DIY! Wish I was more able in that way.
Love Marie x
Oh Marie, you are right. We live in hope!! I like DIY, but am bogged down with paperwork and other things that B used to do. I have no siblings, Bs family are lovely, but are elderly or are dealing with family illnesses. Thank goodness for all the friends on this site! Love R. XX
Julie, I read this late last night, but it was too late to send a reply. I just want to send you a big hug and congratulations on your birthday. It is much harder to celebrate isn't it with all the other stuff going on? Like you, I look at other couples, especially our circle of friends and feel lonely, because we can't be the couple we were. Ironically, we are the youngest amongst them! Then I think about how lucky we've been and all the good times we have had and how compared with people who live in war torn countries, we have nothing to complain about. I thought I was a rational being and was so surprised by the rush of overwhelming grief I had in the DIY store. It just shows, you can kid yourself most of the time, but not all of the time, truth will out! X
I agree , you do get to a level of acceptance but the feeling of being cheated out of just spending well earned years together is harder
Julie
Yes robbo i do relate to those feelings. Having someone there but not there really. No conversation, jokes, company and having to do all the things yourself that they did or you did together. Just some silly little thing can set you off unexpectedly. B....y PSP. Most days I'm ok with all this but others I'm in the pits of despair. But somehow god gives me the strength to pick myself up and start all over again, as the song says. Same old, same old. Take care and be strong. Marie
Oh definitely. I think B and Q was my husband's favourite place! Now everything is such an effort to do on top of looking after him. This weekend I will be attempting to do the garden with him looking on from his bed. He loved gardening. What a cruel disease. Thinking of you. Grief always catches you unawares. X
i no what you mean my husband was a builder we did the house toghether now no one there to help
Know exactly where you are coming from.Its horrible and lonely.I am not good at DIY and miss hubby,s skills.We cant be good at everything.I think being at full time carer for a loved one is an exceptionally skilled job mentally and physically.Give yourself a big pat on the back xx
Thank you. Give yourself a big pat on the back too, millywigg2 ! X
Xxx
I can totally relate to what you said.I just plug along trying to get through each day and think I am doing pretty well.Then something triggers those feelings of grief-maybe a photo of better times,or a thought of things we had hoped to do in retirement and will never be able to do.The doing alone is so familiar also-I have gotten pretty good with a drill and a weed eater! I have to keep reminding myself that things could be so much worse.
I suppose we are grieving for what might have been all the time. We are just good at hiding it. Big hugs all round! XX
I totally feel the same way. My husband is still with me but isn't the man I married and is so different in personality. I feel so alone and miss talking and sharing things with him. When I try and have a conversation with him he is so slow in responding and so quietly spoken. He doesn't think logically about things anymore and worries and ponders over trivial things which then makes me worry.
I try and treasure the time we have but find it so difficult as even going for a walk is hard work. Where I find my husband differs from other PSP suffer's is he doesn't fall very often but is very immobile with fine motor movements, but he can't move once he is in bed and has great difficulty getting in and out of a chair.
I have good and bad days and sometime ( quite often ) i am overwhelmed with emotion totally out of the blue. If someone had said to me 6 years ago this would me my life I would have never believed them.
I too miss my husband so much
Yes feeling just the same, George was a building surveyor, he loved his work, he says he is going to build an extension in the garden, when the weather gets better, he can't even walk let alone build anything, so sad, this horrible illness is, takes everything away Yvonne xxxxx
Oh Yvonne, poor poor George. In fact poor everyone whose lives are touched by PSP and the other neurological conditions. Your life is just ripped apart and you have to do what you can. Sometimes you have to do things that you really don't want to but there is no other option.
Then your loved one goes for good and you feel lost. I don't know when I will ever feel human again. I feel like I am going through the motions and some days can't be bothered doing that. I keep crying now. Before I didn't and thought there was something the matter with me. Now I cry everyday and feel so alone it defies description. I lost my Dad a month after I turned 15 but really thought I had handled it well. I know now I didn't. I can't stop thinking of him too. My Mother died when I was 38 and at least I did grieve for her. Now my husband and this is the hardest of all.
I don't think you ever truly get over losing the love of your life. I wish we were all closer to each other and could at least have a coffee once a week and pour our hearts out. Nobody actually understands all of this unless they have gone through it with a loved one. Other illnesses can be devastating too but these conditions are truly beyond cruel.
All my love to those of you battling with these conditions and the carers who deserve medals. You might have a day when you are cross with your loved one because of sheer frustration. The important thing is love though. You all love your poor and sad (?) beloved ones. I know my husband was sad and I know he wanted to be dead. That breaks my heart but I do understand why he felt like that.
Big hugs to all of you. You are hero's and heroines! Those of us who have gone through it are too. Nobody will ever recognise us but we know what each one of us is feeling.
Marie x
Marie sorry you are feeling so bad, but Gary is in a better place with your dad and mum to look after him. Wish we could all meet up once a week would be amazing. Big hug Yvonne xxxx
That would be so good, to meet up sometime. Marie.
I know I haven't grieved properly for my Dad who died 12 years ago. I had to keep strong for Mum. I know that we bottle up grief. I was writing a piece about my Grandad some years ago. He had died about 20 years before. As I wrote, I began to cry buckets of tears and I couldn't stop, the floodgates had opened. I was absolutely shocked at this and at the anger I felt towards the doctor who had sent him home from the hospital saying that his heart was as strong as an ox. ( He died of heart failure, that night.) It just goes to show, you can't get round it, grieving is a painful but natural process and we have to go through it. I think we feel that we show weakness when we cry, but it is really a sign that we are loving, caring, human beings who have loved and lost. It has to be done. Sending hugs to all. X
Robbo1
Many many times this has happen to me. My dad did so many things in my house and just as simple me and my mom going shopping. Now I have no energy to do things in the house and I go shopping alone something I love so much I hate now. This is like having someone and you can't hardly enjoy them. It so sad. As you all know I have my mom and dad with PSP.I get depress very often. Then I snap out of it because they need me. I still have a long way to go with my parents and I will make them as comfortable as I can but I do missed them so so so much.
Oh Judith, you are a kind, loving and dutiful daughter, but I hope you are getting some support for yourself. No one can carry that burden alone. If you haven't done so already, please speak to someone about it, maybe your doctor ? Sending a big hug. X
Chin-up! So sorry to hear your sad reaction in the DIY store. We all sympathise with you and know when our love ones are not with us, we will be feeling exactly the same. It is very hard to control emotions when they just want to flood out. Don't feel guilty, it just shows how much you love him. Best wishes and lots of love from me Janet.
Thank you Janet. At present, I am preparing for B to go into hospital. Another hurdle to get over! X
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