I'm almost ashamed writing this because so many of you are also suffering the strain of caregiving. And some of you have suffered loss and are grieving.
Is it possible to be grieving when they are still here? It's been such a hard few weeks. Steve has had several bad falls, three broken ribs and two trips to the ER. But that's not the worst part, I think dealing with the apathy and how he is so disconnected from me is the hard part. I know he's scared and frustrated and it's easy to redirect those fears, and I've been trying to practice the RETREAT instead of REACT, but it's just so hard sometimes. He's just not the man I married, and I miss him. Yesterday, I was cleaning out old papers and came across some papers of his, back when he could work, back when he could write, and it just made me cry... life as we knew it has been stolen from us, and it's just so sad. He's so young, I'm so young, and I'd hoped for so many more years with him, it's just not fair.
Since these last few falls, he had agreed to use his wheelchair more in the house instead of the walker. So, it's progressing , it's happening, and all the praying, crying, and grieving isn't going to stop this disease from taking him from me.
Thanks for listening , I truly feel like you all are the only ones who understand these lonely times, and somehow it's comforting know you are all out there
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Khartt
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Oh yes... It is most definitely grieving that we go through as we lose our loved ones to this disease even though they are still 'alive'. My first two to three years with hubby's disease (CBD for us) were the worst: he wasn't bad enough to need carers, but he withdrew from everything and everyone; stopped doing 'anything', all our retirement plans were dead, I was stuck with all the chores including ones he'd always done (computer stuff) and I never got out as he couldn't drive and had to be accompanied everywhere or he would just sit on the couch for 12 hours. I'd come across something he had hand written (he's had no writing, texting or normal speech for years now) or a picture of him "doing" something and laughing, and it would just give me a jolt of heartbreak!
And it may be true that there are 4 stages to grief, but don't let anyone tell you that you process through them in order! Grief is non-linear: you go through denial and anger then bargaining, acceptance, back to denial back to acceptance back to anger and so on!
It's like I thought I was retired and about to live the 'good life' and suddenly got yanked out of my reality, given a huge new job with no training and told that someone's life depended on me doing it right!!
I've often said that this site helped me keep my sanity: I didn't find it until year 4 and I don't know how I kept sane up until then.
A lovely response Anne, you described it in a nutshell. Having to do all of the chores really got to me sometimes, things like putting the bins out, mowing the lawn don't know why as I invariably did those jobs anyway. We always shared chores, no job was for one person although I did take charge of the cooking as he was pretty hopeless at that. It's the fact that you had to do it full stop or it didn't get done. I'm sure this upset Ben in the early stages of illness but he came to accept that's how it had to be. It's tough being a carer, a tumultuous task both physically and mentally, there are no two ways about that and we should give ourselves a pat on the back for coping with it. I was lucky enough to nurse Ben to the end but I always had it in the back of my mind that I might no be able to do that.
PSP / CBD robs the sufferer and the carer of all their dreams. Lives are shattered and then you are left alone to face further challenges of which there are plenty because the person you relied on is no longer by your side. No need to be ashamed we have all been there so grab a little bit of relief and let off steam on this site, it helps to keep the wheels turning. Hugs to you both Jxx.
I have definitely been grieving my Mum for some time, despite the fact that she is still fighting PSP. It is what is lost already already, the relaxing mother daughter lunches we can't have, the assistance with my children, her grand children, that she can't offer, all those 'normal' relationship things that change when our role changes to carer. I am not even her full time carer, my dad and additional carers deal with that, but I still grieve the mum I am losing.
The other thing I wanted to say was that you almost described my mum's progression, with falls and breakages, my mum has now been in a wheelchair for a couple of years. Although this meant, due to circumstances, that she lost the ability to walk even aided, very quickly, it has meant that we have only had one broken bone in 2 years, prior to then we were rushing to the hospital as a result of falls every few weeks and she was falling several times a day. Now although sedentary, life is a lot safer!
Dear Khartt,I had councelling at the hospice when Ben was first diagnosed, he was in denial for a year but had the same symptoms as Steve. I found the apathy one of the hardest symptoms to deal with but learned to deal with it as time went on. During the counselling we discussed the matter of grieving and she said it was 'anticipatory grief' and was quite normal for people to suffer when a loved one had a progressive illness. Does Steve attend a day centre at you local hospice? If so I would suggest you have counselling , it's invaluable in learning to understand your feelings and offload the deepest and darkest of thoughts that go round in your head. I also had massage treatments there too, it was the one place I felt Ben was really in safe hands.
Dear Khartt, first, never EVER, think you should apologise or feel ashamed in our presence or anyone else's, come to that! What you are going through is the pits. Could use a lot of different words, none of them polite!!!
Everyone of us could have written your post. Most of us have, at some stage, almost word for word.
If anything, you are probably at one of the worse stages of PSP. The falling is increasing, wheelchairs are becoming an every day fixture. Life is so obviously going downhill. PSP is now a reality, there will be no magic wand to rescue you both. You wouldn't be human, if you didn't feel as you do.
Yes, grief does start now. You have already lost so much and know what the future is going to bring. I was very angry at this stage. I started going to counselling, which did help enormously. I could rant and rave, cry in front of someone, in a safe environment. She taught me about the RETREAT/RE-ACT. Of course it's hard to do. In fact, impossible most times. But, when you can, you will feel so much better.
I feel for you and totally understand the Apathy. My Steve had this, by the bucket full. My lovely husband, was so full of life, a sportsman, business man, never sat down, lived life to the full, I use to get exhausted just watching him. Once PSP joined him, he sat in the chair and let it take over his life. One thing I could never get use to. Although, I always discribed this apathy as Steve's friend, my enemy!
I am sorry, there are no real words of comfort, just know, we all understand and are always here to lend a much needed shoulder to cry on, listen to your rants and we all have our arms around you in a massive group hug.
i am so sorry you have to go through this. When i was told about my dad, i felt physical pain, that took some time to leave me. Every now and again i will see a photo / video and remember what he used to be like. Then i feel awful, because he is the one having his movements taken from him. It is so very difficult to be supportive all the time, but still have space to grieve. The man you married is still there, he is just different now. I know that if he could, he would go back to the way things were. Just enjoy the good days, and don't feel guilt at any outbursts - from you or him. B x
Supporting each other is a very big part of what this site is for. I would have been lost without it. Asking for support is what we are here for as well as sharing information.
I know the change of plans feeling. When the neurologist, who knew what she was doing, gave Larry his diagnosis I had a moment myself when the reality of how our lives just dramatically change sank in. It is an adjustment. Not a pleasant one.
Hope your venting helped. It helps me when I do it.
Khartt hugs to you. We have all felt the grief you are feeling as your loved one succumbs to this awful disease. I never left my husband with tears rolling down my face but boy did they roll once out of sight! Nobody would wish this on their worst enemy.
You will grieve for what you have both lost and when he passes on you will grieve again. Tell him you love him as often as you can even if there is no reply. Inside that body is the man you love. Because of this disease he might not be able to tell you how he feels. On the other hand he might shock you one day by telling you the same thing. He can hear you but his poor body can't always react and that includes speech.
I think everyone has told you that you are not alone? We have all gone through it. We are here for you anytime you need us. It will help to get it out of your system.
Well said everyone agree with you all, life just stopped when psp entered all dreams flew away, just wished we had done a lot more while George could, feel like our lives have stopped for PSP to take over everything. Sad times. But we have all be brilliant careers they have had the best care we could give them, fought there corner for them. Yvonne xxxxx
Grief is all about "loss" and "missing the presence of your loved one and the changes occurring in OUR life".
Yes, it's common and normal to grieve when the person is still with us, but slowly leaving us. It's a subject brought up in both of my past grief groups. Books written. I saw my son changing, deteriorating. So far removed into denial was I and knowing so little of PSP (finding this site just a month or so before his death but so little time to read), accepting (from the Neuro) that death was a good 3 years away that........
Each of us takes a path and there is no right or wrong path in our grieving. It comes when it comes and it takes as long as it takes.
I find sharing with another, as in this site, who has experienced the PSP, is much more comforting than a book, or a general "grief group".
It's important, when time allows, and when with those that have compassion to share your thoughts and feelings.
Oh yes! I definitely did most of my grieving while my darling was still alive. I nursed him for 6 long years and he died peacefully with me asleep next to him, holding his hand. He was my best friend, lover, soulmate and husband for 44 years and when he left me, although I love him dearly, it was a relief to know he was no longer suffering. He believed, and so do I, that he was going to a far better place and had no fear although he said a few years earlier that he didn’t want to leave me here on my own. I still have a little weep sometimes and talk to him constantly but don’t feel I am grieving, or if I am, don’t recognise it as something bad or depressing. I am enjoying life and not feeling guilty. For 6 years I had a heavy weight in my heart knowing what was to come but the moment it did the weight lifted and I knew we were both free. Of course I would rather he was with me as he was before PSP but if and until we meet again I know what happens now is up to me. I am having a good life, doing lots of new things, visiting other countries, making new friends, filling my days so when I am alone in the house at night I’m not lonely. When I used to come home from work, C would want to talk to me as he did most work from home and I used to say, darling, give me half an hour, I’m all talked out. That’s how I feel most evenings now and it’s good to be on my own, with my own thoughts, bringing back happy memories of our years together. Last week my son told me it is such a relief to him and his brothers that they know I am OK and have such a full calendar they don’t have to worry and feel guilty if they don’t phone as much as some “kids” do. “ we can never get through anyway, you are always out”.
So yes, I did my grieving while C was with me and now I’m making the most of every day.
Sending you a big hug, knowing a bit of what you are going through.
My heart breaks for you. I just found myself thinking the other day, ‘how would my mom cope with my dad’s psp if she were still alive.’ I know how hard it is watching my dad fade away, I can not imagine how hard it is to watch your spouse go through it. I pray better days or at least moments, are ahead for you.
Yes. We grieve the losses afresh at each stage. The stage of impulsive behaviour and frequent falls is so stressful and the apathy, lack of energy and non-communication are so distressing. The knowledge that its all downhill from here is so depressing. Then its all over, you're exhausted and grieve for the person pre-PSP
We just have to grab the moments of love and laughter still there. I can't be the only one to end up both on the floor and laughing !! There were still precious moments of love and tenderness.
I'd like to echo nannaB about moving on but its still early days for me.
I cried when I read your post as I feel like that! All although we carry on with life hubby going to work, still having meals out with family and friends, holidays more this year in case I can't go next year! (It's my excuse anyway) I'm know I'm really lucky in many ways because if you saw me in the street you wouldn't know anything was wrong with me unless you heard me speak or watch me eat. My sister said to me I don't know how you get up on a morning but I do it be easy to give in because inside my heart is broken! CBD has taken away our dreams and growing old together all those things we planned to do when hubby Retired. Please don't think I sit here I sit here everyday crying because I dont but sometimes it's hard and some things get to me and I think how things should be . So tomorrow morning I will get up shower get dressed put my on lippy ready to face other day and to hospital with a smile on face hopefully! Jeanette xxx
Difficult one, like you we were fairly young when the nightmare began, retirement dreams dashed. There will come acceptance to a degree of the awful emotional damage this illness does both to sufferer and carer.
When i was caring for rog i now see that i was so busy and scared of the future that i did not just sit and be his wife. The system is broken so realistically everything falls on you.
When they have gone there is grief, so just take a breathe and sit with your man and tell him how much you love him, although the caring is so hard the grief is another painful journey.
I’m so sorry to hear about your difficulties. It is clear we can all relate! It seems to ebb and flow for me with my mum - sometimes I don’t feel like I can admit/let in the extreme sadness of watching her steadily decline, other times I shut myself in the bathroom to cry - with she and my small kids in the other room. Yet I am thankful she was hit later in life than so many here. And the wheelchair phase (while harder physically) is certainly less stressful as I am not in constant fear she will fall now that she hasn’t the strength. The times of genuine connection, relationship are rapidly diminishing. I can see how the end is a relief to so many of us. And I feel grateful for the beautiful humanity that we share on this site. Thanks for telling your stories and reading about ours. It really does make a difference.
No need to apologise, I certainly echo your sentiments on some days! So don’t feel guilty about it.
What I find helpful is to just let go (privately) of my emotions (of fear, frustrations etc) and cry it out if I feel like doing so, and I just pray and lift it up to HIM.
I would somehow come out of these “private theraphy” quite refreshed and peaceful. I have heard that crying( much like laughter) is equally a good theraphy.
Khartt , What a sad reminder of the last few years. Your post is such a reminder of the stages of PSP. I know that as each decline along the way happened, I went through what you are going through. The realization that there's no stopping this disease and it will progress at it's own pace. During each plateau, you reach your new normal so it's shocking when you recognize the next decline and realize there will be no more; driving, walking, talking, or whatever the next thing is. As you and your partner lose all of the things you loved doing together, one by one, it's impossible not to grieve. We lose a little part of our life each time. Yesterday, I made my first visit to the cannabis store to buy CBD oil in the hope that it will relieve some of his pain without resorting to heavier duty drugs. My heart goes out to you for what you've lost and what remains to lose. We just have to hang in there. Some days it's easier than others.
Totally understand cause I feel the same, wish I could do somthing to make things better again. I just didnot know how to write down but you really said everything the I feel. we are from canada where are you from? Take one day at a time and make the most of it. life is so unfair.
It sounds as if you are talking about me. The stories are so similar and there is nothing we can do. Hugs dear lady. Prayers for all in this situation. Nancyxxx
Oh my dear, this lost brought tears (which are never far away).
Yes, yes and a thousand times yes...you will most definitely be grieving for the loss of your husband. And grieving for someone who is still here is an awful situation to be in.
We lost our dad 8 weeks ago, but have spent the last 2-3 years mourning the loss of the great man that he was. This wicked disease robs us little by little, daily of our loved ones and it's only natural to mourn that loss. PSP affects the whole family, more so the loved one who is subjected to it's effects 24 hours a day.
My heart goes out to you, you're right, we understand. And please don't ever feel bad for posting and using the support on offer here x
Yes, we absolutely understand your feelings because we have them, too. Some days I find the apathy to be absolutely overwhelming. I miss my husband, too, even though he's right in front of me. I remember things he used to say or do that would make me laugh or see photos of him before this all started, and I find myself filled with sadness.
Please don't ever feel ashamed or as though you should apologize......we will always be here to listen.
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