I think it is important to realize that what I feel as "depression" is better labeled as "grief". It is not a pathological state to be treated but a normal life reaction to a horrible ongoing loss. What makes it doubly difficult is that the person I am grieving for is still very much alive, and extremely difficult to live with, and that goes on and on and on while the grief continues. I feel that the supports and understanding that would be here if my husband had died, is missing, and also maybe a bit of healing and maybe even a bit of acceptance. But to grieve for a living person who daily leaves me bit by bit is not depression.
So when I cry in the grocery store or in the bathroom or late at night or walking down the street or drinking my coffee alone, or sitting by the computer I think to myself "No I am not depressed I am in mourning for the love of my life, my dearest friend, the only person who really knows me, the vital, smart man who is no more, and that I am still capable of joy in joyous situations." That feels different to me.
Jill
Costa Rica
Written by
zjillian
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Hi Jill, I think you have just summed it up. That's exactly how I feel? Added to the, "when will all this end?" "How am I going to survive when it does". "Don't want it over, but can't cope with life as it is".
Oh Jill, how DO we get through the day, I am so tired at the moment. Don't think I even know how to sleep anymore. S is up every couple of hours, takes at least half an hour, for him to use his bottle, then change his pad. The whole idea of both of these, was to stop him having to get up, but that seems to have back fired. Takes me a couple of hours to nod back off, only for him to wake up and go through the same silly business. had a GOOD night last night, must have slept for at least three hours, three more than the night before! So my day off today, was spent catching up on a little sleep! I was offered a night sitter by the hospice, for a night, but turned it down for the moment. Hopefully the Bladder Clinic will come up with something, next week. Pigs might fly, I know!!!
S has been with me for the last twenty five years, we worked together, played together, rarely been separated, I really can't cope with this slow, oh so slow decline in everything he does. People may think slow is good, but I can only see the cruel ness, that this illness is doing to him. Me, what do I do? Shout, scream, cry and make his life even worse than it is.
Heady feeling so sad for yoy and and myself I feel so guilty for shouting and getting upset I think that is one of the worst part feeling guilty after getting upset, we have been married for 46 years we grew up together through good and bad times love to you all Yvonne
You certainly don't make his life even worse than it is......the fact you are grieving so much shows the depth of your love for this man. You are only human, you can only cope with so much, you are allowed days of wallowing, tantrums and sadness but ultimately you will find ways to be strong because there isn't another alternative.
Have you had any offers of grief counselling? Sometimes talking to a complete stranger (but one who has experience in this field) is very therapeutic just to be able to offload with no judgement. You can speak freely and have a good old cry if you need to.
Shout away on this site, we all hear you, we all understand and we all have days where we just can't cope......
Nobody has offered any counselling. I have asked for it, especially for S, but I just keep getting ignored!
i have been offered a place on a carers support course which lasts about six weeks and I think they touch on all aspects of caring, including the emotional side. So may get some help there. Should be on a course, the end of Feb, but have differed it until June, when we get back from South Africa!
Thank for your kind words and support. Need all I can get at the moment!
Oh how I relate to your thoughts too, you have said it just how it is, how do we carry on, my man is not as far into this awful thing but ech day brings it hom that it is getting worse, it is a very lonely place to be for both sufferers and carers, and heady, we don't scream do we, if I started I might not stop, lots of love xx
I suspect it is a bit of both- of course one is mourning for the loss of the person that you have loved and shared your life with , but the daily grind and the "no light at the end of the tunnel "makes for depression.Yes of course there are lighter moments and I am the first to admit that sometimes things can give you pleasure but I have to say that I don't get out of bed each day with anything other than a sense of dread as to how I am going to find a way to get us both through the day .And there is a sense of relief when I have put my wife to bed and I can have a little time - is that awful - I don't know anymore . I mourn my loss and am depressed by the situation if that makes any sense .I am probably talking rubbish- take no notice - the meanderings of someone who has had a not good day .
And Jillian and Georgepa I can relate totally to everything you say. And to you as well Heady. Jillian, I haven't cried yet on the grounds that if I start I won't stop. We watch DVDs daily and I find I am blinking back tears more at some moving/sentimental scene in a film than when I watch C's decline. My self-control would seem to be very effective! Georgepa I also feel relief when I get him to bed at night and can relax for an hour or more before I also go to bed. And I sneak another hour in the morning - that's what I am doing now. Over the past couple of weeks he has developed a real phlegmy cough which is clearly his swallowing function finally starting to go. He still eats well and can speak normally but the cough increases. We had planned to go to neurologist yesterday but, fearing she might instigate the feeding tube discussion (he doesn't want one) we have put it off till next week. And the 'what about when it's all over' concept hovers somewhere at the edge of my consciousness. He wants it to all be over asap and, had we had the money, we would have taken the Dignitas route. But we have chickened out from DIY alternatives and decided to let things take their course and avoid, as far as possible, any medical intervention. But how long will it take? Who knows. If only someone could put a time scale on this disease (and I have done the US one but have doubts about its accuracy). Anyway must get on, enough rambling.
I agree with everything that has been said. We also thought about dignitas but it means dying before he is ready. When he is ready it will be impossible to make the journey. At present the disease is progressing slowly and we are into "live for the day".I know it will get worse and I don't know how we will manage. We have our 53rd wedding anniversary next week !
I feel if I let myself cry I will never stop ! Chris doesn't let himself feel sorry. He feels sorry for me. We both cry at other things instead, like all the world troubles.
Had a good day watching rugby and cried at the national anthems.
We are still loving to each other but also more anger and tension than we have ever had. Its really frightening.
So its grief and depression about loss. Not clinical depression.
Its in Switzerland.Google dignitas and all info is there. Costs a lot and you have to be able to travel to Switzerland and swallow the drugs, which means while you still have an acceptable quality of life. It says parts of USA have euthenasia. Jean
Jill,we are certainly all the same,if Madeline had murdered someone and was on death row the difference would be that we could still communicate etc.,this sentence is a progressive execution...extreme maybe,the only difference is our loved ones never even hurt a fly...!!! Rollie
I think we are all grieving and as Georgepa says, that process itself is depressing so it's a combination of the two. I totally agree with you that grieving for someone whilst they are still alive is just the most horrible feeling and almost impossible to explain to others who have not experienced something similar.
I ask this question not just for you but anyone else who might be reading this but is their counselling available for those caring for PSP sufferers? It seems to me that grief counselling would be very appropriate and I'm sure there are organisations that specifically help those who care for loved ones with a terminal illness?
I'm sure you don't feel you have time for counselling or maybe it feels too intrusive but I personally am looking for some help to help me process the feelings of loss I have for my Mum as I'm aware this could be a long drawn out process and I have to find coping mechanisms for me to get through this time and also be able to support my Mum and Dad.
The problem with counseling is that we are in Costa Rica and services are not the same. I would be in any kind of counseling available but here what they do have is far away and in Spanish. I tried really very hard to find something 2 years ago and it was impossible. I found two therapists..one disappeared, literally vanished and the other only wanted to talk about my childhood and had no idea about women from non-Spanish countries especially pushy Gringas.
Made me feel very sad reading these. All too familiar feelings that I'm sure all of us feel. My dad lasted about 7 years from beginning to end. It was 7 years of horrible drawn out grief. Many tears on many days in many places. As you say no one could ever begin to understand how all consuming watching someone you love die millimetre by millimetre and have all dignity stripped of them, is. Many people seem keen to put a time line on grief. There are lots of people who have commented that 1 year to 18 months should do it. You feel like saying, what about the last 7 years? It didn't get better when he was alive. New normals occurred, with multiple waves of grief all along.
When dad died the long lingering death he had in July , taking two weeks to die of thirst and starvation. PSP denied him the opportunity to say goodbye. At a couple of points on his death bed, he simply cried. He'd not shown any communication for a very long time. He didn't want this to happen. Nor did we. it was heartbreaking.
It felt like a long labour that had come to an end. Relief, but pure hatred towards the evilness that destroyed him and left him at his nadir. Since then mum and I experienced grief that felt like craziness, like the world was spinning, then calmness, then waves of disbelief and then pain, then Christmas happened and he was so missing. I went singing the other day and couldnt get through the notes without crying remembering him. Again, more adjustments to the new norm. It's impossible to believe such a good strong man has gone. Right now, it's impossible to believe that we will ever get over what we saw, what dad went through. Well wishers always talk about the good memories coming through, but right now, psp still dominates. I'm not convinced it will ever go away. How can it?
You can get grief counselling through Cruse. They will help and do understand that diagnosis of terminal illness can be the start of grieving process, (although there usual role is intended for post death). I'm so sorry everyone. This illness is a complete bastard. I hate it and always will and my thoughts are with you. You ARE understood and are not alone in the way you feel. x
I just reread your reply and started crying....I do not believe it is possible to "get over' grief...I believe that it might change but the loss is so huge after the long illness and so exhausting and the love so woven into the fabric of our very being that to get over it is not a possibility and not something to want to have happen. The only positive thing about suffering is that it connects us to the world of suffering to all those experiencing loss and grieving.
I feel totally at one with everything you are all saying but I have a confession to make: although I started grieving about seventeen months before Roisin died, I would give anything to have her back with me and still to be looking after her, night and day. I remember the feeling of dread each morning, my daily resolution to be patient, compassionate and kind all the time, not just when it came easily - and now each morning I wake up longing, longing for those times.
And it is the most selfish part of my grief, shameful I have to admit but I cannot esacpe it.
Hi Christopher, please don't feel guilty. You have nothing to be ashamed about. Of course you want your wife back, at any price! I realise what I am going through at the moment, I will be giving any thing and everything to get back soon. Even last month, seems a such an easy life, compared to today, no doubt, in a couple of weeks, I think about today's challanges as a walk in the park!
So please stop beating yourself up about your thoughts, they are totally normal and understandable and sorry, but I got to say it, part of this extremely long winded grieving process we are all on. Just another wonderful part of this "£&@£&&@@@@&&£&&@" disease!!!!!
Hi everyone can relate to you all George can still eat by himself I just cut up his dinner and he will only eat mashed potatoes he can still speak but not writing anymore coughing all the time so sad for all of you every day changes, people come and say how George has changed, don't realise it when we are together every day. Yvonne xxxx
I was a counsellor and so am fortunate in having some qualified friends. A well trained counsellor could help and would follow where you wanted to go. The problem is we are all constantly grieving for the most recent stage on top of the previous stages. And part of us wants them relieved of their suffering [ and us ] and the main part can't bear to lose our life partner. Personally [ I am 78 ] I can't imagine wanting to go on alone. Its pain where-ever you look. We need to make the most of NOW . I think we are all amazing in how we manage all this.
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on grief and loss
my hero Geoff 
