It's coming up to three weeks since my David left me, and I 'm confused.
I am spending my time wondering why I didn't do things differently, etc etc.
I'm looking back and wondering why I didn't just sit and talk to David, or take him out on the patio in the sun. He was always just stuck in the living room or the bedroom, and only went out for appointments.
In reality, I know I was working 45 hour weeks plus regular Saturday's, and every day when I got home from work it was a three hour job to make dinner, feed David, tidy up and then toilet him etc. By which time it was bed time. But I'm feeling rotten about his quality of life, especially when I read some of the wonderful posts about trips to respite, sitting in the garden etc.
I feel like I got it all wrong, and I'm sobbing my socks off again. I feel like I was the worst career in the world.
I just don't understand, I can't make head or tail of it.
Written by
Ratcliffe
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Don't blame yourself it sounds as though you had your hands really full , working 45 hours a week as well as looking after your husband . Caring for someone with PSP is difficult enough without holding a job down as well . The fact you did both is remarkable - yes you might have done things differently but we all think that when we lose our partners . The grief will be with you for a long time but it will gradually get better ( so I am told) so take heart and don't blame yourself in hindsight -you need to look forward now . Easier said than done I know .
Please don't punish yourself, it's perfectly normal, so I'm told, to feel like this when you lose someone you love, I'm still feeling guilty and it's 8 months since I lost my husband! It's so hard! Thinking of you....
I can't believe you managed to work and look after David. I see the posts about trips etc and think that would be so nice but whatever I suggest to John I get a NO so don't beat yourself up. David knew how hard you were working to keep things together. You did your best and that's all any of us can do. Xxx
Hi, I know it's the last thing you want to hear, but the "Guilt" phase is something we all go through. Of course it would have been nice to take David out more often, sit in the garden with him. Please remember, when you have read these posts, that it was probably one trip out that someone taken, another that was sat in the garden. Steve's final trips out, were to the local supermarket, how exciting was that???
David getting PSP was not your fault! You did your very best, caring for him. Holding down a full time job, to keep that roof over his head, food in his stomach. Plus doing everything else, that caring involves. I honestly don't know how you managed. In my book, you are well and truly near the top of the pile.
Of course you could have done things better, in hindsight, but couldn't we all. We all have to live with the fact, we did everything to the best of our ability, with the circumstances that were given on any particular day. End of!!!
This phase will pass, in time. Not sure how long it lasts, I'm nearly ten months along this road and I still have the guilty days, along with the angry ones, the lonely ones, why us days, every miserable day that you can think of. Equally, there are good days, days I achieve things, days I forget to be all of the above. The last being few and far apart, but they are increasing.
Nothing can change the way you cared for David. When I stop and actually think what I did for Steve, The way I coped, the things that became normal in our world, I'm not sure, even with hindsight, I could have done anything any different or even better. The only thing was perhaps, accepting our plight and I was the best carer he could of had, even with all my imperfections. I loved him and cared for him, until the moment he died, who, in all honesty, could ask for more? I think, I hope, Steve and David for you, would agree with me.
Accept your tears for what they are, you are missing the man you loved. They are NOT tears of guilt, but tears of pain, of loss, tears that come with grief. Nothing to be ashamed of, or to hide.
I fear it's going to be the same way for me when my mother passes. On one hand I know I'm doing way above what the average person would be expected to do given that I am unexpectedly managing her business, my sisters business and my sisters estate including the probate processes. I don't even have time for many of my own needs - it's rare that I get a full load of laundry done, I haven't been on a vacation in years - I don't even cook for myself anymore or even go shopping. My visits with mom are usually about matters that need to be dealt with: business, care issues - and I don't often have time to sit and talk and listen to her or just idle away some time in front of the television. We've only sat outside in the sun once, though I had every intention to do it every day this summer. (She did fall recently and has been in and out of hospitals and rehab facilities for the last month or so but still...)
So, from the outside hearing your story - I can say nothing more could've possibly been expected from you and I do think the aspect of grieving you detailed is very normal -- even if you had more time to do those things you are regretting not being able to do, I'm guessing you would still feel this guilt as one of the phases of the grieving process.
Thank you for being a reminder to me to try harder to do these things and I hope you know that you are not alone in your doubts. Hugs to you and wishes for the day that the sun will shine for you.
No no no! You mustn't blame yourself - although I have been kicking myself for EXACTLY the same thing; hearing another person in the same place I can see how misplaced that self-judgment is. We worked very hard, all the time. We cared and loved and were there all we could. All the feeding and toileting and lifting and dressing were acts of love. I bet your David, like my Henry, wasn't feeling the passage of time as we would and really didn't mind the lack of stimulation as much as they would have if they were well. Hang on. These emotions are things we have to work through, and there are no shortcuts, and you will feel better, bit by bit. Please be kind to yourself, as you truly do deserve. I wish I could really hug you. I know you are suffering. I know how you feel. Love love love to you, Sarah (ec)
Thanks again everyone, its so nice to have people who understand. Everything is still fresh. On the one hand I have all his medical equipment being removed etc, and I have been rearranging bits of the house to make more sense, and put it back to being a normal house again (apart from the lift, wetroom and hoists!!), and on the other hand, I'm doing all the paperwork, and the funeral isn't for another ten days due to delays and the post mortem.
I guess its all so raw, and my mind is still a mess at the moment. Thanks for all the thoughts and comments, at least I know its "normal" given the situation, and that others have felt the same. Thats a comfort, if you know what I mean.
I can see this site being just as big a help now as it was when I was doing the caring and readying for advice!
I still have almost all of the medical equipment and supplies, although I have made some room for myself, slowly. The stairlift is staying so my mother can visit. I don't know what I will do with all the rest. I have a hoyer lift (slightly bent), three wheelchairs, two commodes, three walkers, a bed rail, and one electric lift seat cushion. Exhausting to think about. And bales of paper products. One carer has said she could take some of the incontinence supplies to someone who needed them. I must arrange that. Meanwhile...
We are having the gathering for my Henry at his (now his children's) place in the mountains this weekend, 4 months now since he died. (Feels like yesterday.) I am anxious that it go well - so many people are traveling long distances to be here, and the place is far from the next town, a problem if I have failed to foresee any need. It will be good to be with family and friends and to talk about Henry. There will be laughter and food and music.
I keep imagining that after this is over I will have time to grieve properly. But then I don't think I will ever be truly done with that. I hope David's funeral goes well and you receive comfort from the people there. I will be thinking of you, Sarah
All the portable equipment like the transit chair, rotundas, hoist slings etc were supplied on loan from a company the local authority uses, so I just rang them, made an appointment and they came with a list of what they needed, so it was easy. He had only just had a pad delivery so I called them and they collected them back so they could be resused. I want to see all his stuff reused where possible, as the system provided as much as possible for us, and its no use just sat here when someone probably desperately needs it just like we did. So I go moving quickly on that.
For some reason I wanted all his medical stuff out of the house, as it was all sitting there reminding me about the PSP all the time, and it was stopping me from seeing his nicer personal posessions, books CDs etc. Plus it needed to go back sometime.
I'm not getting rid of clothes, books, knick knacks etc, that will come with time when I am ready.
The gathering you are doing sounds good, we are planning a bit of a party here with some of the daily carers once I get sorted out. I was having a decking fitted out the back so that I could wheel David out of the patio door instead of out the front door, down the ramp round the corner, down the entry and into the back but unfortunately it never quite got finished in time. So we are going to have a party and name it after him
I am going to stay technical because it is what is.
Humans are hard wired to self blame when someone close is lost.
Functionally it is thought to be a survival mechanism. When someone close is lost the 'guilt' forces us to review and review again what more we could have done to have helped them more.
This hard wired repetitive review, powered by 'guilt', ensures that you will do it better next time.
So step back from modern times and think primates in the forest... that is where it came from.
Review and then forgive yourself. Say it to yourself, really, and mean it, "I forgive myself, I could have done better, but I am merely me, I did what I could."
I have been through this one with my mother, I will go through it again with my lovely wife who has PSP... I do my best, it is not enough, I could do better, but I just try to do what I can within my poor limits.
The guilt is being driven by the endocrine system in the brain... It is not always so cognitively correct.
I hope his makes a little sense.
Most warmly from someone who has been there personally and sadly all to often professionally.
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No win situation Part 2
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