I don't tend to post very often on this site but read others posts frequently and have found it an invaluable support through my mums PSP journey. I lost my beautiful mum in the early hours of the 9th June, it was a total shock and unexpected despite mums PSP and other ailments and so I have been wanting to post on here my thoughts as I think you all are the only people who might understand how I feel. Mum was about 5/6 years into PSP we estimate when I lost her, she could walk a little in the house with lots of support, could still eat certain foods and thickened drinks and could still talk albeit difficult to understand. She had a PEG which was fitted 3 months before which for mum was so worth it to administer meds, fluid and laxatives. Mum had been suffering from increasingly worse choking fits and had a prolonged three hour choking session a few weeks before her death, but her mood could still be positive and we had several trips planned we were looking forward to. The day I lost mum she'd been to the hospice for a few hours and had a nice day then id taken her around a few shops and she bought new pyjamas and some outfits. I took mum home, made her some dinner and we watched a documentary on Tutankhamen (she loved Egyptians) and then I put her in her new pyjamas and put her to bed. The night carer arrived and i was relieved to be off duty but for once I didn't drink, I freely admit I have drank too much most nights since becoming mums carer. Mum was really restless and the carer called me in as mum had chest pains (I lived with mum so was always on hand), mum felt clammy and was saying her pain was 10/10 on the chart i made but she looked as calm as a Hindu cow. No grimacing or clutching her chest etc (as TV suggests) and she was unable to describe the type of pain to me. I gave her paracetamol, put a thinner duvet on the bed and turned the fan on as it was a humid evening. I went to my room hoping to sleep as I felt very tired but could hear mums bed alarm sounding continually so went back. The carer had given mum lorazepam to help calm and rest mum but mum still felt very anxious and asked me to call 111. I told them to go into the lounge and I went to make the phone call. I could hear mum calling my name from the lounge and i walked in and snapped at her that i was on the phone. The operator asked me quedtions and I got irritated when mum wouldn't / couldn't answer them. I was annoyed my sleep would be interrupted and was hoping we wouldn't have to go to A&E for several hours. They sent out paramedics who arrived quickly not long after midnight. They seemed relaxed and slowly went through some tests whilst chatting away with us all. I explained that mum often complained of breathing difficulties and occasionally of chest pains but that we'd had several ambulances/trips to A&E in the past which had all turned out fine. I believed it was anxiety linked to the PSP and had taken mum to a cardiologist and respiratory consultant who had both given mum the all clear. They ran an ECG then repeated it and all seemed to be acceptable. I didn't at any point that evening hug my mum, reassure her or tell her I loved her, I was annoyed I was being kept awake for mum being anxious and so was quite surly. Once the ECG was complete I think we all relaxed and I sat on the floor opposite my mums chair and made little jokes like how my mum was wearing her lovely new pyjamas hoping for some attractive male paramedics but two women showed up instead. I remember looking at mum and thinking she looked beautiful, her blonde hair framing her face, a little smile on her lips at my silly jokes and her lovely new pyjamas on. I didn't say it aloud of course but I hope I was at least smiling nicely at her. She then started to make strange noises like snoring and the paramedics asked me if this was a PSP symptom!! I said I'd never seen her like that and we all realised something was horribly wrong. I let the paramedics commence CPR.... One of them asked me after a while if mum had a DNR.. I hesitantly replied she did, only signed the week before but said I honestly believe mum wanted it for end of life stages and we didn't feel she was anywhere near there yet! Mum wanted to grasp onto life for as long as possible and had said she wanted active treatment for all illnesses. The paramedics continued at my, perhaps with hindsight selfish insistence, but after a second ambulance appeared with a horrible mechanical contraption and almost an hour of resusc, the new paramedic told me nothing else could be done. I'd lost her.
I didn't know what to do and the paramedic asked if I should call someone. I told her my sister lived ten minutes away but that I didn't want to talk to her. I'd argued many times with her over the last two years since I'd become mums full time carer. I moved back from Australia to care for mum and my sister used that as a reason to withdraw and do little. My sister hadn't seen my mum in the last ten days despite living so close and only working part time and averaged a visit a fortnight pretty much at that time. Her lack of support for me and mum, despite my continually asking her for help was a big bone of contention in our relationships. My mum idolised my sister and it was only in her final weeks she began to see how selfish she was, I'm ashamed to say I compounded that by moaning about my sisters selfishness and lack of help far too often. Mum had said to me a few days before 'why doesn't she want me' and I'd told her that my sister loved her very much, but loved herself even more. I now wish I hadn't put those thoughts into my mums head. We all have regrets when we lose a loved one but my mind is teeming with them. Because I was there all day every day I took my time with her for granted, I sat on my phone, I complained about how tired I was, how I missed my old life and having a job, I was preoccupied with how mums condition and needs affected ME not my poor mum. I read an article that said 'our lives as carers are collateral damage for trying to keep our loved ones alive' and this resonated with me. I yelled at her the day before for spilling her drink all over herself and the chair and then again when it happened an hour later. I accused her of doing it on purpose. I apologised later saying i was just tired and grumpy but my frustrations and exhaustion from caring meant towards the end I wasn't a very good carer. I got all the paperwork, medical info, shopping and rosters for carers sorted etc but let mum down on what she needed most, love and support and hugs and attention she deserved. But you see I thought I had so much more time! I thought mum had at least a year, perhaps two left on her journey with PSP and I was so busy looking forward, planning for when we would need hoists, planning to make music CDs to play to her and slide shows of her achievements, looking at how to purée nice meals and thinking I'd have time to say all the nice things when she was bed bound and that would make up for my mood swings previously. I didn't cherish the here and now. I'd also just arranged for an agency to take over mums care 24/7 and that was is in the process of completion when mum passed away. If it had been a few weeks later I wouldn't have been living with mum, I had wanted to go back to work, have my own place to live, take a step back from caring and mum was very sad and anxious about this although she accepted it. She'd told me the day before she didn't know how she'd cope without me. I'd told her I would only live a short distance away and I'd still manage all her meds and paperwork and see her as often as possible if not every day, but that someone else would be spending the bulk of time in the house with her. I'm glad mum went when I was still her main carer, I'm lucky I was there and awake and in the room with her, I'm glad she was in her new pyjamas, sat in her favourite chair. I must sound callous not taking my mums request for an ambulance seriously, I honestly thought it was anxiety, and I think all of us, paramedics and mum included, thought mum would be going back to bed and that would be the end of it once the ECG was fine. But it wasn't fine, and I lost her, and I never got to tell her how much I loved her and how I was sorry I was so moody and took my frustrations out on her, I wish I'd been more sympathetic. It's too late now for any of those things and having to pack up and move mums possessions has been heartbreaking, especially finding pictures she kept of me I didn't know she had and every card or letter she was ever given. She deserved so much more and I wish I'd given it to her. Perhaps I should be glad that mum went quickly and within her own home, I know many are not so fortunate, and she was spared horrible infections and hospital stays and the Liverpool pathway. And others tell me it was for the best and it's good she's free from PSP now, and I know they're maybe right but mum wasn't ready to go and I wasn't ready to let her. I feel like I've had her snatched away from me too soon and am left with the guilt and regret of words and actions left undone. My boyfriend gently reminds me mum could be difficult and say mean things to me which made my moods more exasperated but that doesn't help me now. For those of you still caring for loved ones with PSP, I know how hard it is, exhausting and (depending on the person) a thankless task at times but please also try to make time to cherish still having them and try to make them smile or laugh or tell them you love them. If you're struggling, get help! Keep pushing, ask the government, ask family and friends, don't accept no. I went on for too long with mum thinking I could do it all and it led to me becoming bitter about my role as a carer and that was to mine and mums detriment. I also lived hours away from the rest of my family (my dad and two brothers live in Wales) and all my friends as my mum had moved to be closer to my sister whilst I was abroad, and this I think compounded the feelings of depression, isolation and loneliness for me, especially as my sister was the only person I knew in the area besides mum. If you see these warning signs in yourself then try to get help, if I'd had that extra bit of help or free time to myself I think I would have been a better Carer and perhaps losing mum would have been a little easier as i would have always treated her with love and respect instead of sometimes yelling and bickering and feeling resentful.
Anyway I think I've waffled on for far too long already, well done if you're still reading! My love, thoughts and best wishes to everyone on this journey, PSP sufferers and carers alike. At mums service I read a poem she wrote many years ago, it almost seems prophetic now but mum has always had spirituality if not religion per say and thought I'd share her words with you all for comfort. Love and light, Kelly xx
Do not stand and weep for me,
Now from my body I am free.
Gone the ailments and the pain,
Now I'm well and whole again.
To a new land I have gone,
I've said farewell to earth's sojourn.
In the twilight of the years,
You too will come and shed no tears.
Do not stand and weep for me,
Now at last my spirit's free.
Rejoice and know that it is so,
That to a new life we all go.
Written by
Kelly55
To view profiles and participate in discussions please or .
I'm sorry for the loss of your mother. I'm sorry for the compounding of guilt and sadness you felt or feel, thinking, "if only I had one more day" or "if only I was more sympathetic to her needs. "
Don't you know that we all go through the what if's ? You are guilty of nothing but trying to set it all straight in your mind. Your mother loved you and PSP took her away. If you are going to be angry at anything, be angry at this horrid disease!
I appreciate so much that your wrote to your fellow carers who may be going through all of the things you just went through...They need to know they are not alone. You Kelly, are not alone. Sharing your story here will help not only you but someone else....
You worked so hard for your mum....even travelling half way round the world. You took her out; you gave her a bit of normalcy when there was none. You were the only one there when she took her last breath. You may be the only one right now of your family who is feeling guilty, "that I could have done more!" And yet you were the ONLY one doing Anything.... You were there for your mum, and your love was self evident by everything you did for her.
Don't beat yourself up ...give yourself a hug. You made your mums life a little bit better whilst she suffered.... May I add, don't beat your family members up either....Mum is gone no need to bring her memory down by bringing up their selfishness...
Be good to yourself Kelly You deserve it.....know that you have one more facet on your diamond of life that makes you a little more beautiful.
Take care of yourself .Cry laugh and relax, walk away when you feel family member are getting on your nerves (haha) And start your life back up...it's waiting for you.
I loved that poem your mum wrote! Indeed it was prophetic...true words of comfort that shows your mum understood the relationship between carer and patient; between this life and the hereafter. I too have words of comfort, though not my own, but My Lord's. May you find Him a comfort and a strength in the coming days.
Thank you so much for writing,
AVB
Trust Him at all times; ye people. pour out your heart before Him: God is a refuge for us. Psalm 62:8
For he has said , I will never leave thee, nor forsake thee in.
Dear Kelly55, that is a lovely, brave post. Thank you for writing. I hope you find a way to forgive yourself. You really shouldn't give yourself such a hard time. You sacrificed a great deal for your mother - don't let a few momentary lapses overshadow all the goodness and loving kindness you gave her. You were there. You crossed the world for her, and took care of her, day and day out. You made her life possible. Your calling the ambulance earlier would not likely have changed the outcome for the better; instead she was able to die at home. Everyone wants that, and very few get it.
A sudden death always leaves the survivors with that heap of words left unsaid and other regrets; you are not alone there.
I will try to benefit by what you have shared here when I get impatient and scold. I already have enough regrets about my failure to care well enough; I don't need to add to them. It's good to be reminded. Thank you for that.
Now please, try to remember all the good things you did, and let the rest go. Treat yourself gently and kindly, rest. Your mother was lucky to have you.
Hi Kelly, I did read it all to the end and am very moved by what you have written. Don't be too hard on yourself. We all know what tiredness and being constantly on call can do to us, often bringing out the worst of us. Your mum would have had times like this during her life as well. She would have known you loved her enough to move back from Australia to be with her. I hope your relationship with your sister improves. I think I know what you are feeling as I was the one who had to care for my parents. One brother lived 15 minutes away, the other 3 hours away and when either of them came it was like the return of the prodigal son with me making the tea while they chatted and laughed with dad. Now, two years later we are great friends, something we never were as children.
It probably was the right time for her to go, although heartbreaking. She would have deteriorated, she would have hated being cared for by others and you would probably felt guilty not being with her all the time.
Now she has gone and is free, give yourself time to grieve but try and think of yourself and your relationship with your boyfriend. You probably haven't had much time for relationships. You may now be free to move away to somewhere nearer to friends and family when you are ready to make big decisions. You miss working so finding a job may help you to make new friends.
I wish you all the very best now your caring role is over and hope you soon manage to find a new, happy life free from PSP.
I'm crying my eyes out and I'm so deeply sorry for the loss of your mum!
I think the guilt is normal and I'm sure we are all guilty of getting annoyed (regularly) although now my dad is bed bound and deteriorating daily I try hard, very hard, not to get upset and annoyed!
You have done the most wonderful job of caring for your mum and putting YOUR life on hold whilst caring!
For the record I feel like and actually know my life is on hold and has been for approx 2 mayb 3 years, how selfish does that sound?!
Your mum is now free of this truly awful heartbreaking illness and can rest in peace!
Your poem is beautiful and if I had the guts to stand and read something at my dads funeral it would be your poem!!
Sending you loads of strength for your future and the biggest hugs
So sad, but when you are tired, we say things we don't mean, she knew how much you loved her, and by your post you loved her very much. She is free of this horrible illness. Like NannaB I was always there for my parents, even though they lived near them, would not of had it any other way, now brothers and sisters are close xxxxx take time to heal xxxxx
PSP took my husband July 18th.He was so poorly no regrets.Your Mum knew you loved her,no-one can be perfect 24/7,she had you to go shopping with,eat with,be with You did well Love to you Px
Hi Kelly - I took care of my dad for the last 10 months of his life, with help from my mom - my sister lived 10 mins away too but she would only drop in for 10 mins or so - I got pissed at her a few times but I think it was too emotionally hard for her to look at my dad in that condition, plus she had a family to manage so sparing some time was difficult too - so I just let it go
I too left my job to take care of my dad - he was bed-bound by the time I joined him - my mum took care of him before and she left her temper a lot with him - caregiving for a dementia patient is just hard
I resonate with almost everything you said - all I can add is that my dad suffered too long - the disease becomes horrible and there are lots of complications that can happen - I am glad my dad didn't suffer too much but I am also sad he suffered like he did
Hi, Sammy - it's good of you to check in with us. I'm wondering how you are doing now. I hope you are getting your own life back together, and that you have been treating yourself well. Peace, Ec
Thanks very much for your kind words, easterncedar :))
I started working again, after almost a year
I don't miss my dad too much, I read somewhere that caregivers of dementia patients mourn their loss while they are alive and after they pass away, there is a period of numbness or relief even that their loved one is not suffering anymore
It seems like my sisters and mom miss him more - I guess women handle loss differently than men (trying my best not to sound sexist here
I hope you are managing well too Best wishes and prayers
Thank you Kelly for your courage and truthfulness, written with the aim of helping all of us carers. It brought me to tears but has strengthened my resolve to bite my tongue or put the irritation out of my voice. Jon is nowhere near the difficult stages many of you are dealing with but I still recognise the feelings and know I have much harder times to come. I'm amazed you are able to open up so honestly for our benefit and very grateful to you. Like the others who've responded I can tell how much you have loved and cared for your Mum and hope the guilt you are feeling at present will not permanently outweigh that. It may take some time to get it all into perspective.
I wish you all the best in the very different life you now have ahead of you. Thank you so much.
Iread all your post Kelly,it was v well written and so true,we carers do struggle with feelings i am just the same.Your Mums poem was beautiful.Please take care and remember what a fantastic person you are for having cared for your dear Mum xx
It brought tears to my eyes and I think how hard it is for my daughters. I must remember that when I feel neglected because she is spending time with her children " Sorry about your mum a big hug for you xxx
Hi Kelly, like everyone else, I thank you for your honest and heartfelt post.
Grief is a strange creature, affects us all differently. But in general, follows the same pattern. First the numbness, then the GUILT, afterwards is the anger, only then can you come to terms with losing your loved one.
Even if you had been 100% perfect, the guilt would still be there somewhere. Caring for someone you love, who has a terminal illness, has to be the hardest thing going.
I have had a terrible week, have not been able to cope at all. S at this moment is nursing, yet another bang to the head. Yes, my temper has been very short!!! That doesn't mean I am a rotten Carer, just someone, like you, at the end of her tether!
Your Mum knew you loved her, you may not have told her enough, but anyone can say the words, actions have always spoken louder than any word. Your actions proved to her, on a daily basis, how much you loved you her.
Please accept this guilty feeling, for what it is, part of your grief, let it run its course and move on to the next phase. If you really want to show your Mum how much you loved her, when you are ready, get on with your life. Start enjoying doing things that have been put on hold, go outside, look at the sky, breath. Most of all, go and live the new life, as in your poem.
May you have peace and only remember the many good times.
I lost my wife on 7/9, just a little over 3 weeks ago. I have many of the same regrets and what-ifs. But my bride is in heaven and awaiting my arrival someday.
Thank you everyone for your kind and thoughtful replies. I've been thinking about, and meaning to reply, every day since I posted my comment but I'm sorry I haven't as yet. I'm not sure why I haven't but it's also been a very busy few weeks... I had to move out of the home I shared with mum and have been living in different friends houses ever since. I had an interview for a temp job a few days after my post and was asked to start immediately. So I moved myself back to Wales and have been working full time since. Today would have been my mums 71st birthday. I really thought she'd be here for it with me. And then my birthday is tomorrow. Just wanted to say love and best wishes to you all and to raise a glass pleas to those we love and those we've lost. I intend to raise several later!! I will reply better soon, I'm sorry if I seemed ungrateful for all your efforts. Love and thoughts with all of you xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I don't know what to do
Vacant look
feel like I’m failing
