Is it just the pages I have found? Or are they all so smooth and lacking any gut reality tone with regard to the hard work, the 'fails', remorse and exhaustion?
Then for many of us there is occasional resentment about what has happened to our own lives as we are compelled to care.
This Australian article plays with a slightly straighter bat. Good ol' Oz!
As we know all to often carers not only have an immense task, but caring often leads to considerable isolation. It's tough at times many of us trip, get up, dust ourselves down and carry on. We do OK!
The occasional resentment? That's normal. We are not bad people. We wouldn't be doing the care if we were. Please, we need to do three things, get as much practical help as we can and some time away from caring and sometimes share with someone who really gets it.
Yes, I hear you: I never found anyone outside of this forum who really 'got it', Caring led to isolation and getting practical support (of a decent quality) was a constant fight. Time off?
Eventually we loose the one we love. Then there is a possibility of survivor guilt.
'Could I have done more?' 'I wasn't good enough'... With it sometimes comes shame, 'Why oh why did I have that hissy fit', or whatever the event that shames us was. We remember all of the 'fails', little of the good things. We get endless replays of what we might have done, if only we were good enough.
Now with proper rest, the stress and the heartache of daily care gone, it's easy to imagine we could have done better. Well, sorry, no we couldn't. Tired, worried, stressed beyond belief sometimes. All we could do was our personal best.
I remember years ago reading a book by a child psychologist. In it she said, "There is no ideal way to raise a child in the real world. All that we can do is be a good enough parent."
All we can do is be good enough carers.
Please don't all phone the Australian helpline! But getting a little emotional support or counselling can go a long way to finding a self acceptance that we are doing, or did, was all we could do and that might not be quite as good as the next person. It might also be better than others could have done.
There is a saying in one particular school of cognitive therapy. "It is what it has become. Accept that."
It's not easy.
Wishing us all self acceptance.
Warmly
Kevin
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So right Kevin. I am very familiar with the good enough mother. I tried to apply it to my carers role but found it more difficult. Perhaps because I didn't seek it. In fact I resented it. I now, after 9 months, I keep remembering the times I didn't stay with him because I needed space. I forgive myself and so does everyone else but I still am full of regret. It's hard to remember the stress and exhaustion. I know this is a normal stage but it's hard.
That rings a lot of bells...even now! So thank you for sending it to us all. It's worrying to read the grieving can last years!! I won't think of that...too much! A worrying thought that everyone could think I am a miserable old woman until I die?
I am going to the cinema with my Granddaughter tomorrow and in two weeks time we are going on holiday to Dublin. Trinity College have an exhibition on at present and one of the books on display has never been on show before. So that's one day sorted! I met a Professor from there a couple of weeks ago and he told me to contact him if I went to see it. So I will do that but I have a horrible feeling someone I know who knows him is going at the same time! We shall see! He will feel he is being inundated with visitors. Not that I will be there for more than a day.
We are staying in my Granddaughter's favourite hotel! She is very fussy! She also says it's my fault she is like that! 😂. I think she is right. My Grandson wouldn't even think of coming. It would be too dangerous without his Mum apparently! He never used to think like that so it's sad. Still he has had a holiday in Greece already.
So I am trying to do a Heady and ditching the guilt! Have no idea if I will succeed but can only try? It is one of the things I have struggled with. Just one you note?
So when you are finished with the stick I might ask you to send it to me! Hoping the break will make me feel more human.
Take care of yourself. I know this is a big struggle for you. Guess what though? I think you are doing really well. We are our own harshest critics?
Marie I hope you have a lovely holiday with your granddaughter. My sister and I are going to Dublin at end of August to see Wicked the musical and staying overnight in a nice hotel. Our birthdays are on the same date so a joint celebration for us. And all possible because my daughter is coming to stay with her dad while I'm away. xx
What a shame I didn't go a bit later. I could have met you for an hour or so. I might even have sang Happy Birthday to you and your sister! I hope you have a good time too. Hope your hotel is nice.
We have stayed at the one we are staying at a few times before when G was alive. So I guess there will be mixed feelings about it this time? Something I have to face though. Maybe my Granddaughter too?
Glad you have a kind daughter who will stay with her Dad to allow you a break.
Take care and have a good time! This is the first time we will have had more than 3 days away for the past few years.
It would have been lovely to meet up with you. I'm sure it will be emotional but hopefully this will ease and you will create a new precious memory with your granddaughter.
This is going to be my first night away from W and I am slightly anxious as he needs help getting to the bathroom during the night. He is a big man 6'2" and unsteady on his feet so I'm hoping my daughter hears him trying to get up. I think I'll get a wireless doorbell that will alert her. I think others have used these. Other than that she can give him a few brandys and he might sleep right through 😌😌 (lol).
He will be well looked after. It will also help your daughter understand how hard it is for you? No bad thing? So just relax with your sister and enjoy yourself!
How lucky your daughter is not to have to take responsibility, but merely blame you for things!
Bravo on getting to Dublin.
Grieving does take time. There will always be a small scar and an space where your lovely man once stood. But it does get a lot less disabling. Oh, I do with you some healing.
Maybe we should have a national meetup where we do some sort of weird Morris Dance with our Sticks?
Thank you. I will enjoy myself. Just looking at my Granddaughter's face will ensure I do. I am sure there will be some sadness too but I have to face that?
Not sure the Morris Dancing is my thing! 😂. Would love to see some of the men do it though! You volunteering Kevin?
Ahhh you read it wrong! I said looking at my Granddaughter's face would ensure I enjoyed myself. She is coming with me! My pal. She has been so kind to me and is only 15.
Mind you I will be broke as she always wants to go somewhere expensive! Even going to the cinema yesterday we had to have an ice cream first! To be fair she only wanted a cone but I bought us both sundaes! I felt so full after it! It was a massive one. Then stupidly I had a Latte. I felt sick by the time I was on the way home. So had to take Alka Seltzer when I got home!
Just had my telephone doctor appointment after 2 weeks! I have to have another blood test on 10th! 😕. Oh well. Life eh?
You and me too! Feeling like a pin cushion. It's put a bit of a dampener on the holiday but I will get myself together again. Wasn't expecting it so soon to be honest although thought he would say that. Couldn't he have waited until AFTER my holiday!! Flipping doctors eh? It could have waited for another 2 weeks! He asked me did I drink too!! Another one!
So guess my liver is not doing what it should be doing? I feel fine though. Apart from when I have a Latte after a sundae! That was just being greedy! 😅
Hugs to you. Can just see you doing a Morris Dance now you know? 😂
Marie x x
I joined this site eleven months ago. Over this time I’ve read numerous posts which have given me a lot of information and support. I know I’m doing the best I can. Larry may fall sick and die from something but it’s to be expected with this disease. I will deal with his death as best I can when it happens. It will be hard. Having gone through loss and major grief before I have some idea what to expect.
I do wonder if he will be the first to go. Both my older brother are dead. My eldest brother made it to 75 the other not even that. I’m 70. I have told both Larry and his cousin Diane, who is the backup person incase I die, this could happen.
Lovely post Kevin. I hope you don't mind, but I have copied it and sent it to a friend, who is struggling at the moment.
Your words are very true, its just such a shame that none of us realise this at the time. An ounce of pride about how good a carer we all are/were, would have gone a long way to make our loved ones life, that tiny bit better.
I see so many wonderful people struggling with this.
And as I typed that last sentence I heard many voices quietly murmuring, "Well if he only knew how badly I fell down." As you know that is all part of the syndrome!
I have learned a lot from you and others here. I am trying to get my head sorted out a little on phase one before phase two hits.
Kevin, I think one of the most important things you can do, is exactly what you are saying here. Ditch the guilt, feel proud of yourself, the way you have helped and cared for Liz during her journey. I refuse to go through this guilt phase, I did care for Steve to the best of my ability and beyond. Without me, life would have been a whole lot worse for him. So I have forgiven myself, for all the MANY mistakes I made.
Dear lovely man, as usual you strike a chord in all of us who are, or have been carers and the guilt we can feel at not having done something that we could or should have done in that role. We are all human and have failings and keeping up to gold standard 24/7 is just not possible unless you are a saint. It's great that we can support each other on this subject as none of us want to feel that sense of guilt when in fact we have done our very best, day in, day out, for a sustained length of time. All give yourselves a pat on the back for doing your very best even if it's not perfect.
Oh Kevin I am always thinking could I have done better, and I getting upset with George to often? I should not shout but I am human, he can’t help being ill, some days I think I have given up so much, then think about it, george has also be deprived of his retirement, I look at him and my heart breaks, what must it be like living in his body, coughing and choking? Not being able to enough eating his favourite dinner, having a glass of his favourite wine. Throw the stick this way please when you have finished with it please Kevin. Wonderful post Kevin. My children don’t realise what I am going through, they ring up and ask how is dad? One of the children today phoned and made me feel bad for not picking up my granddaughter, but there is something wrong with my car, I have to do everything now, cars are my worse nightmare, feeling like rubbish tonight. To be honest I am not doing alright. Yvonne xxxx
Yvonne I wanted to say hello and send you some support from a stranger but also a friend as we all are; the we who know the disease and care for someone with it in whatever capacity. I look after my Mum in a remote capacity from abroad and also my partner day to day who has a different condition and is 20 years younger than my Mum. Mum is lucky to have live in Care in her own home and I admire her so much for her spirit and her get on with it attitude. However those who I admire more are the carers - amazing people of which you and many others on here are one and I know how hard it is to care for the person you love but I do have understanding from all the family but still I know that no one sees the day in day out things and when someone asks how he is you find it hard not to be sarcastic! This is my first post on here and I felt I wanted to say something as I felt your pain acutely and I also for right or for wrong felt bad for you with the situation with one of your children and the pick up of your grandchild. Oh and don’t talk to me about cars either!
Hope you rest well and tomorrow is a new day for us all and somehow we all keep going - it’s what we do.
Thank you Emma, I think children are great but at times you could kill them. Well tomorrow is another day, loads of things to do, it suppose to be a free day for me but a list of jobs to do. Welcome to the site lovely people on here always ready to help, kind words to pick you up, like you have just done for me. Sending you a big hug. Yvonne xxxx
Awww Yvonne, be clear on this this, crystal clear my darling, you are an absolutely amazing wife, mum, grandmother and friend! The love and the way you continue to care and battle for George is actually quite astonishing! How you feel is completely NORMAL!! Don’t beat yourself up honey, bloody hell, no one could do anymore than you do! Your NOT superwoman! Your a human being and a wife, NOT a carer or nurse! You’ve never received any training! If you’d have wanted to do this, don’t you think it would have been your chosen career?!!! Just remember this, you couldn’t possibly do anymore than you are!
When my Mum fell ill last year, one of the hospice nurses (now one of my best friends) said to me, your dad is terminally ill, your mum is not! So find a good nursing home for your dad then look after your mum and get her strong again because she will have a life!
What I’m saying Yvonne is don’t kill yourself trying to do everything, it isn’t possible! You have to keep well, your the one that HAS to survive and you will, just ditch the guilt! You have no reason whatsoever to feel like that!
I love you Yvonne, you know that, be kind to yourself else I’ll come round with that stick myself! X 💕
Ha ha! No rest for the wicked Yvonne! I can give the advice but at the moment I can’t actually stop, it’s like being on bloody auto pilot.....hey ho, it’s ok x
Yvonne, I so identify with what you've said. Both our children live in other parts of the country and really have no idea of how Chris has deteriorated since the spring and particularly over the past few weeks. I am fortunate to have a few close friends who keep me going and appreciate what we're going through.
That was my situation Anne, our boys two hundred miles away and not really understanding the full implication of full time caring. The last year of Bens life was a quite dramatic deterioration so when they visited they were always shocked by that deterioration but it's the everyday rituals, constant medical people, carers, they don't fully understand the strain that has on you as a carer. My friends kept me going, especially a selected few who went above and beyond the call of friendship, bless them. It's tough but somehow you muster up the energy to carry on. Keep on keeping on, it's all you can do to make their life tolerable, they need to know that they are loved, it's all they have.
Lovely lady, it's tough and your children just don't seem to understand the full implications of the role as a carer, I'm sure I would have been the same when trying to get on with a young family. You can feel so alone and misunderstood by your family even if they are kind and loving most of the time. Keep your pecker up Yvonne even when it seems to much to bare.
Oh thank you Katie, children are normally good, but just felt a bit bad with some comments, life isn’t it Katie just have to get on with it. How are you lovely lady? Think about you often. Big hug coming your way. Yvonne xxxxx
Ask your daughter to stay with her Dad for 24 hours!! Then she might start to understand how hard being a carer is? Kids with a few notable exceptions need a shake up!! They really have no idea?
You are very good to George. OK so sometimes you get cross with him. We have all been there. We need a magic wand as well as the stick to beat ourselves up? The wand would be great as we would all be perfect every day of our lives? Might be a bit boring being perfect though?
Take care of yourself Yvonne, and recite I am a good carer a few times a day to yourself!
I remember a couple of months ago you were up at three in the morning rubbing Georges feet... feeling like kicking the bed... understandable!
Recently you refused to have a hoist because it would lead to faster loss of his ability to transfer.
Yvonne, you are an amazing carer. I don't need a crystal ball to know your are stressed, probably tired, still having to keep the whip hand to keep his care on track and probably much more.
You are incredible.
Yes, you screw up sometimes, you only give it 60 percent at three in the morning and quite frankly you fall well short of being an angel! Astonishing!
My family each have a different reason for not understanding. It's easy to forget how frightening this illness can be to some. Others of my family don't want their life pattern interrupted (I am being sooo polite on that one) and yet another is really nice, but simply doesn't get it.
Because they are siblings I have been able to say, "Please I need some space don't contact me for a while." (Well that's the printable version. ) After so many phone calls I would walk away upset and feeling even more alone. I found that being a carer makes me emotionally more vulnerable. I can sink like a little lead ship in a bath some days.
I'm sending you a damned big hug.
I'm on the forum this evening and check my PM's too.
I will say it again... deep breathing, relax, then scream the place down followed by as much sleep as you can get.
You are a wonderful person and George is so fortunate to have you as his carer.
Yes he suffers, but that means you suffer... We're back to that 'no angel in town today' thing.
Hi Yvonne, I agree with every word that Kevin has written to you and Amanda, when she says about bring that stick around herself. When she gets tired, I'll take over!!!
Please, please just think about all the good things you do for George, feel proud of yourself and carry that feeling with you, all day. I promise, life will seem that little bit better. Accept and acknowledge that you are doing the best to your ability, (which in my book is bloody amazing!) and stop wasting precious time feeling guilty over nothing.
As for the children, well perhaps a stage managed breakdown in front of them might not go amiss!!! I did a full blown one, not far from the end, to Steve's son. It did concentrate his mind for a little while!
Yvonne, I'm with Kevin on this one: you are a dedicated caregiver and spouse and you are Still There!! After years of hard work and personal wishes denied, you've never walked away! It's true that even our closest family don't 'get it'... But we here do!
I can only say the thing that is sustaining me through my new widowhood right now, is that I gave my all to my caregiver-spouse role and I told and showed my husband how much I loved him. I could never change the course of his disease - I could only find ways to demonstrate love: and that is paying me dividends of peace now.
Well done Anne. That's been my attitude as well. Of course there have been some "what if's!" and "I should have done!" But I do try and give myself a very large pat on the back, as much as possible. It definitely helps.
Kevin,as usual you have hit the nail on the head again when you said”After so many phone calls I would walk away upset and feeling even more alone”.I have tried to keep myself busy and go to all the places I get invited to but find it strange how “alone” I can feel even with other people around. After all a part of me is gone and always will be.
I can hear the dread you are feeling when thinking about when Liz is gone.I felt that too,knowing it would come and trying to imagine what it would be like. I think of it as grieving even before the event happened. I guess it is normal,as I have heard others say the same.
Thinking of you and all those who are struggling with caring for loved ones. Janet
Lots of requests for that big stick Kevin, please add me to the list. I feel everything you have written and I know I am not alone. Do hope you and Liz are keeping well. Love Jxx
We had a good day yesterday - she came home for a few hours. We watched a film together on the T.V. and she told me was frightened of dying. So we talked about death and dying and her beliefs. She was so much more at peace afterwards. Lot's of hugs. 'Love through the tears' as it were.
How is it going for you. It's still early days. I do hope your finding some healing.
Hi Kevin, so pleased you had a good day with Liz even though some of your subject matter was difficult. I have been home for a week after spending two weeks on holiday with some of my family. Not having a holiday for four years it was needed but I still felt guilty and emotional as Cyprus is the place my hubby really loved. Now home I am really trying to get myself motivated to arrange for various jobs which were to be carried out before PSP struck. I still feel as if half of me is missing.......married 53 years to one man is quite an achievement and I would have him back in a heartbeat pre PSP. Make memories Kevin. Love Jxx
As others have said, thank you for sharing, this is all so true. This is such a great community that we can all share our frustrations and worries and know that we are not alone. I’m so grateful to know that you understand 💕
Dear carers, I read your posts nearly every day and the struggles you go through, believe me you all do amazing job. So don't hard on yourself! Sending you all a big hug. Jeanette xx
Yes we all have guilt. I went in to visit John a few days ago and one of the inmates said I could have John home and when I said I could not handle him she said you would have to manage, made me feel really bad. Always at the back if my mind is should I try again but he is deteriorating and the fact I have no family help scares me. Pauline x
Pauline I don't know what is wrong with the person who said that to you but he was way out of order even if he thought it! I am assuming it is a he? I know exactly what you mean. I have a son and daughter but she has little boy so no help there. My son had a form of arthritis himself although only young. So I couldn't rely on him?
I have no other family here so it was very lonely and scary. I did my best until I was almost on my knees! I still don't feel right over 12 months later! So you do what you feel is right for you. If there were people queuing up to help life would be so much easier for everyone? Some people have family nearby who help they are so lucky. Then there are the rest of us?
Marie, you've said it very well! Though the disease has its common symptoms, each patient is different, some are very difficult some are not, (just think of the mobility differences amongst our various loved ones) some careers have health issues of their own, some don't. NO ONE can judge but us!
So Pauline, add another shine to your halo simply because you didn't snap his head off with that comment!!
Stick with what you know is do-able. To do more is setting both you and John up for a very hard time.
I can't have Liz home because from time to time she becomes too difficult to cope with. (I am understating massively here). She hates being in a home and misses her own home terribly. I will not feel any guilt. I refuse to. Though I have a lot of sadness about the situation. What I do, do, is bring her home a few times a week for a the afternoon and I give her all of my attention, love and hugs. That is the best that can be done and even that can be hard some days.
Stick to your guns. Do what you can to share good things with John and let the home take the strain.
Since Mum has been on the hospice my guilt has heightened . I dislike the fact that I have got angry at times at Mum when her behaviour was in fact trying to tell me something. Not that she was trying to wind me up!
My character has always been one that I could/should do better...That stems from.childhood though.
Oh, the 'should' and and 'not good enough' stuff. It's horrid. I used to have that so I decided to do everything (which didn't impact on others) not as well as I could, for a while... It worked rather well and funnily a job done at 80% looked very much the same as a job done at 90%
Hello friends.I 've not been here for sometime as I am now struggling with health issues of my own. But that is a story for another time. When I read the above post it just reignited my memories as my beloved's full-time carer. For along time after her passing,I blamed myself for not doing enough.But while reading a nursery thyme to some youngsters it really got home. We all know about Humpty dumpty ........ "And all the kings horses and all the song's could not put him together again"
You ask for the revelance of this. I did what I could,even though I blamed myself,thought I had failed in my mission.....
I had to come to terms with the fact that I never failed in my quest to keep my beloved alive. I had no control or influence or even the troops to change the events leading up to my late wife's passing. I need to keep telling myself I did my best.......
Sorry for still using the military experience . I hope I haven't gone on too much of a tangent that I missed the point. I am just picking up the pieces of my life. Trying to bridge the social isolation of being a carer.
Thanks for reading this far. Thanks for bearing with me.
There's nothing wrong with military metaphors. My bent is for sea going ones.
And no tangent either.
I'm sorry you are facing health issues after the tremendous job you did as a carer.
Yes, the habit of social isolation is going to be a big one for me to tackle. Especially as it seems to be a cultural norm now in the U.K.
So I'm just posting to wish you well and to celebrate your performance on the field and your subsequent survival! Hm, military metaphors work very well indeed
There's always a place for you here. Do keep posting should you choose.
What a good article. I can identify with all of that. I am going on holiday next week for 2 weeks and have a live in carer coming to stay. Really looking forward to it but feeling very guilty, although I'm sure my husband will be well looked after there are always doubts.
You know one of the, perhaps not so surprising, themes that play out on this forum is the way 'family' can actually make the caring work so much harder. Not just by demands, but sometimes by being another emotional drain on top of an already emotionally draining situation.
I have got two family members temporarily suspended at the moment. My sister got the red card a couple of days back.
What a relief!
I am going to take my big stick... and use it to steady the new fig tree.
It is 5 in the morning here. I have been awake since 2 and have not had my coffee yet - so I hope this post makes some sense. I can tell that folks on this site do not need a big stick even though at times family and friends judge us for what we do or do not do. It is so easy for them because they are not in our shoes. Everyone here is searching for ways to make life better for loved ones and to have a better understanding of PSP. I truly believe we are all doing the best we can and are to be congratulated. I think I will have coffee now or I might ramble on and on. Sending Hugs to All - Granni B
Morning to all you caregivers,no one can do what we do or did do.I'm so feed up with all of it but I re group and carry on. I keep saying I CAN DO THIS.
Flagellation!!!! maybe that's what I need. I think it is time for me to go to counseling. My husband is only 4 years in. He can still shower and take care of his personal needs, wash the dishes now and then and has a laundry fetish. always doing laundry!!!! Annoys the hell out of me when he makes so much exaggerated noise when he coughs, walks about with his mouth hanging open, drooling all over so my feet stick to the floor, peeing all over the toilet rim and I have just cleaned it. Not replying to people when they talk to him because I know he still has the ability, just points and expects everyone to know his point. Sitting in his recliner with eyes closed all day says only a few words and sometimes doesn't answer at all so I end up answering myself. Has taken over the TV watch what he wants to watch, clutches the remote! After all he is sick isn't he? PSP as he says "Pretty Special Person". All these little things!!! I am in a depression, have a couple of tipples every day, wake up every 2hrs in the night . My house is a tip. Have recently converted a bedroom to a bigger bathroom for him so leaves me with a bedroom less. (We sleep in separate bedrooms have done for years because of his snoring although now with Cpap) Still Have to clean up the upstairs room, basement and the rest of the house. I have no incentive, (Anyone know of a good drug to get me moving)get up sit around all day and sometimes force myself/manage to get a 2 mile walk in. "What's for dinner? Don't know don't care but have to make something. The guilt is dragging me down as I know what is to come and I don't know how I will cope especially knowing the way I feel right now. Don't have the money for lots of help or a Nursing Home. Not eligible for Medicaid. Sons are shift workers and I know they will do what they can physically when the time comes. He has the slow progressive type of PSP. When is the next shoe going to drop? He had triple by pass three years ago and sometimes I wish he hadn't survived it and have to suffer what is to come.. I hope he will pass overnight! My feelings make me feel so bad, I love him dearly but I dread what is in store for us. I think/hope I will cope when the time comes. Then I read what you all are going through or have handled and I feel like such a bad person. Please forgive my rant and hope you all don't think I am such a bad person. Guess I just had to put my feelings into words. Love you all and you are my strength right now. xxxx
Don't you dare think you are a bad person!! You are doing what all of us do or did...trying to survive and get through this hell. You are a thoroughly nice person. Not perfect I am sure...but nobody is! We do our best and nobody can do more than that? We will all have different bests too! So put your feet up grab back the remote and watch what you want to in the evening! Heady always advised a glass or two of wine but I never got around to that! 😇
No Daffodil, you did not sound awful. Just like one of the rest of us. Each and everyone, who has been on this site for a while, has written a post, saying exactly the same as you. Some of us, (me) more than most. Caring is not a pleasant experience (!!!) you don't apply for the role, nobody gives you any training, let's face it, nobody really cares how you are doing, as long as you are. We, the people on this site, know exactly what you are going through. We totally understand the frustrations, the anger and the deep depression you fall into. That does not make you a bad person. Just the opposite. A bad person, would have taken to the hills by now, you are staying and doing your very best to look after your husband.
I would suggest some counselling though. I had quite a lot during Steve's journey. It definitely helped with the anger. Also, keep ranting and raving on here. It releases a lot of that frustration. Try to understand and accept, this is how you are going to feel, at some stage, throughout this journey.
Sorry folks, I have to repeat myself here! Have you heard of the 3R's v 4R's?
4R's - React, Retreat, Reflect, Regret.
3R's - Retreat, Reflect, React.
In other words, always retreat first, before reacting. Be it, leave the room, turn your back, take a deep breath, anything to stop that initial outburst. I promise, even if you only manage it once, it does help. Wise words from my counsellor.
Thanks, Kevin.. I'm too often racked by the sense of my failings, and no amount of reassurance that I was amazing, from dear folks who just don't know how often I wasn't, can help. Your post helped.
Kevin, give me that stick! Sarah, you know perfectly well you always were a beacon of light, of how to care for your loved one. So you weren't perfect. Not even Mother Theresa could have filled that role!
Thank you. Like many of us I need to be told not to expect to much of myself.
Can I keep it as a back scratcher?
Some days I don't know what I'm feeling. Just so many feelings at once.
I've just come from seeing Liz. I'm reading a novel to her. She is so sad, but I see her face responding to the words with a tremendous concentration.
Liz tried to get out of her wheelchair whilst unattended at the home. She fell and now I am frightened there will be extra staffing costs for ensuring she is safe.
We've agreed that tomorrow I will take her for a drive and find a lake and some woods and I will push her wheelchair along the paths.
She survived, just a bump on the head. She was very grumpy when I saw her afterwards. I think it was all of the fuss from the staff which made her grumpy.
That thought, "Well they weren't there. so they don't really know", is the knot which keeps the whole guilt package intact.
I know I was rubbish some days. Obvious solutions to issues and problems would often take me a week to realise. I had hissifits some days too. Sometimes my level of coping was so reduced that I became a walking dead, doing what was needed and little more. I could fill ten pages of this!
But I did the best I could and continue to do as much as I can now.
Well said Kevin I am new to this site however I am not new to all the trials and stresses that I get from looking after a husband with PSP it's so good to read and learn about the experiences and trials of other people makes you feel normal in an in normal world sometimes thanks for your words
hello kevin I read your reply about guilt feelings and yes I know I did my very best for Geoff but I cant stop the feelings of how I sometimes I would shout at Geoff I know it was tiredness and frustration he had the patience of a saint and he did understand how things was but I really do need the big stick for a while there are all sorts of things going around in my head and it keeps me awake at night I sometimes go out walking at 4 in the morning I have a fantastic family but its the loneliness of not having Geoff with me there is a 6 month waiting list for cruise counselling I would have him back in a heartbeat but only because I am selfish you are a very level headed person and I always feel better after reading this site because people here understand maybe in the future I wont need the stick but at the moment its all what if !!!!!! thanks for your reply doreen
Doreen, I will bet that Geoff knew you loved him very much. Even though much was becoming compromised for him cognitively, he would have known that you loved him, that you were frustrated and frightened and wanted relief for him. Trust that love and his knowledge of you. Don't dwell on what you may perceive as mistakes. Stay on the list for the counselling (always a good idea Meanwhile, bring back memories of all the things you did that demonstrated love for your man, and play them back in your mind often through the day
I don't have the wisdom to know if this post will be helpful, but here is some of the current research on emotions. We have a thinking brain and a chemically driven part of the brain which is far older and predates the reasoning cortex in evolutionary terms. It's called the limbic system in evolutionary terms it was once all we had. This limbic system pumps out hormones and gives us feelings which make us respond in particular ways which help us survive better. The feelings of loss and grief come from this place.
Guilt too comes from this same place. Guilt and loss are the big sticks that teach us how precious our loved ones were. They drive us to go and find the other if they are missing. They make us care for the sick and injured. They make us review our behaviour to make us 'better at it next time'.
'What if' are the thoughts we are forced to have in order to make us
review. When you have done your review thinking try to push those
thoughts away. They have done their job. Tell them so and push them
away.
These feelings are real, but we need to remember that they aren't rational. That is they are emotional drives, not reasoning. They are in this way unreasonable.
None of us ever do things in the best possible way. We all get caught up in the emotions of the moment. We get frustrated, angry, we are corrected by remorse and we do our damnedest to care whilst experiencing feelings of loss of our loved ones health and abilities as we try to care for them. That's a huge emotional burden to carry as we try to deliver the car they need. Please, fight back against those feelings of guilt a little if you can. They are not that reasonable.
You cared for Geof as best you could. You dedicated yourself to him. He must have felt so loved. No one could ask for more.
Oh, Kevin. I so needed to read this. The guilt I feel now that my husband is gone comes in waves and is overwhelming. Why did I lose my temper? Were my desperate pleas for him to listen to me mean? After all, he couldn't help his impulses. Why, the night he passed, when I heard him struggling to breathe didn't I stay awake holding his hand after giving him his morphine drops and checking his oxygen? I laid down next to him and fell asleep. Was he frightened when the end came? Why didn't I just sit up? Sorry to rant. Guess I needed to vent. Actually, this is the first good cry I've had.
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