WHY? Why is it, we are all doing, what is publicly acclaimed, a fantastic job, caring for our loved ones. Most of us are on our knees, several of us, very close to breaking point. Yet we all feel guilty.
We all feel the frustration, are totally exhausted. Why, because we are all doing too much, not getting enough help, blah, blah, blah. Everyone one of us has had a meltdown at some stage, so we shout, scream, kick and cry and feel guilty.
Do you want to know how to stop the shouting and crying? Leave our loved ones and this flaming PSP and run away with the Circus!!!
Who's going to do that? I know, I wish!!! The truth is, none of us. Therefore, we HAVE to stop beating ourselves up constantly, accept the screaming is another evil symptom of PSP.
Come on guys, let's kick this guilt nonsense into the long grass and start praising ourselves for the incredible effort we are making for our loved ones.
Lots of love
Heady
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Heady
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Wow heady good point/post!! Your dam right, we are all doing amazing jobs! So what you saying exactly? Let's all be really positive and not rant lol....I like the thought process and will try, for how long though, who knows lol 👏 X
Well said Heady. Unless we are purposely hurting our darlings, we have nothing to feel guilty about......that said, I have a confession to make. I did briefly feel very guilty on Saturday. I was transferring C from his bed to wheelchair via his hoist and checking the position of his feet so as not to hurt him when he made a strange noise. I had accidentally hit him in the eye with the top bar of the hoist. I felt very guilty and was convinced he would have a black eye and my "crime" be found out. He didn't and it wasn't. To me it felt like a major crime and I kissed him and cried, saying sorry over and over again. But I know that although I should feel sorry, I had no reason to feel guilty. It was an accident. At the Hospice it takes 3 people to transfer him, I have to do it alone. So Heady, I am going to do as you say and kick future guilt into the long grass ( Saturday's guilt is already there) and praise myself for the good job I'm doing........until the next time.
I got really mad the other night when he refused to go to bed.....felt a bit guilty but left him in the frontroom to his own demise! I woke up at 4 am to find him on the floor asleep...I gathered him up put him to bed and he's been going to bed pretty well since then...hahahaha
Heady well said, I feel guilty all the time, if I pop to the shops, I am always rushing everywhere , we all do a bloody good job careering and even if we shout and get upset, we are looking after our partners so well, it is like when our children were small, it was unconditional love, same for them, we fight there corner all the time, so if we shout and get upset, we must not feel guilty, we are tired of fight PSP. Yvonne xxxx
Same here, Audrey. I get questions answered and I get to rant and rave and cry on everyone's shoulders. Everyone here is such a support for me. I don't have a big support group. You folks are the main ones I talk to.
Guilt has been such a large part of my life, I seriously doubt that I'm just going to stop doing it. It's funny, I didn't nor haven't since, felt guilty about how I cared for my mother when she died. She died from complications from COPD. I did everything I could to make her feel comfortable and loved. Unfortunately, she did not die an easy death. It was horrible. What I don't understand is why do I feel so much guilt about my sister with PSP. I have bent over backwards to help her, but this insidious disease makes my sister mean and she says ungrateful things to me, yet, she makes me feel guilty that I didn't try hard enough to make her life better before she goes. I have been working very hard to not feel this way, but it is a hard fight too. No, the guilt is not going to just go away. I just pray I am ready when my sister dies, that I won't be racked with guilt then or afterwards.
Amen Heady. It's bad enough watching others lives go on about us but to feel like we have to apologize.....No//// there;s enough to do than to apologize and or feel guilty...
Well said. Out with the guilt. We are doing the best we can in impossible circumstances.Sometimes you just have to stop and lick your wounds. Than carry on one day at a time.
I so hear you, BUT and there is always a but.I just put Hubby to bed early (10:15) because I'm tiered and I feel guilty
We have this difficulty every night. I have home care worker put him to bed now every night at 10pm. R never gives her a hard time. I make sure I am in bed about 10 minutes before she arrives and she tells him that am in bed already and that she has to go he at 10pm. It is such a relief. They do pm care and his meds. I am starting to revive a bit now. I also sleep better when not over tired.
Now, instead of feeling guilty, I feel jealous. Lol! What a blessing to have someone to care for R at night, so you can get some well deserved sleep. Have a few snores for me. Lol!
None of us should feel guilty but we do. When you think you are not doing enough or having the thought and guilt about shouting or screaming my favourite was stomping of saying I'll talk to you later............. think to yourself if the roles were reversed would they do any better then us.
You do the best you can and don't forget to look in the mirror and tell that person looking back at you what a wonderful job they are doin Janexx
I rant rave and swear every day. But I'm Still here knocking my pipe out all the time on my own, plus I now have an injured shoulder which is very painful, and I'm still doing all that has to be done. Guilt. Yes quite a lot of the time but your own sanity has to come first so go out when you can, enjoy and above all laugh. It's such a tonic.
Well said Heady and everyone. I am unable to work out the complex emotions PSP raises in me while watching M but sum them up as guilt as not being able to sort out the problem.
I know there is no way of sorting out PSP but I am a problem solver who get things sorted and resolved and hitting the wall of PSP upsets me (guilt). We all care for our loved ones and would not walk away (hence no reason for guilt).
It seems wrong to worry about taking a few days out but I do because I am not there to respond to M's needs, though the nursing home does a lot now. M has been in the nursing home now for over 5 months and I am taking my first break from daily feeds I know I need but the demon at the back of the head still mutters.
Heady you are right, we carers do a great under appreciated job looking after our loved ones and could do without the feeling we are not doing enough for them.
Hi, thank you for all your comments. The main theme seems to be, what ever we do, it's not enough, like Tim has just said, PSP is complex and huge, therefore there are always problems we CANT solve, so feel guilty at our failure. How can this be a failure, when the problem is too big for us. NannaB has proved the point completely, she felt guilty over a slight accident with Colin, when the professionals hoist him around, it's takes THREE and there is Nanna on her own!
Gracie-girl is still feeling guilty from caring for her mother, yet she has giving up her life again, to now care for her Dad and Sister.
This guilt feeling is eating us all away, who will look after our loved ones then?
Please everyone read your comments again, but change the name and see if you think that person should feel guilty.
I know none of this will make the slightest difference, in five minutes time, when someone will lose their cool, but take a breath and think WHY?
You provide a home for our pain and our fears and our frustration. In these rooms we can release our inner thoughts and secrets like balloons in the wind. As we share , we find relief, and we can breathe again.
I read about your struggles and I try to prepare myself but you are right, this is just like parenting. All the guide books and suggestions were helpful then, but when called in the middle of the night we responded with our hearts leading us. Instinct was our leader and we reacted to the dilemma as a confident soldier would.
We are at war with an establishment that offers little consolation and so, like the dutiful parent, we make decisions and get through each night. Fear is our constant companion and our faith lifts us and helps us heal.
Thank you....bless you....be strong....I need you all...
Hi I have read the posts on feeling guilty I know how some of must feel my wife has starting going to a day centre this only her second visit I dropped her this morning and before I left her words to me what time are you coming back so guilt does creep in I am sitting at the dining table having a coffee hopefully trying to switch off, told my daughter last night wasn't going to do any thing her reply yes dad that's right your time as well, but you know what reading your posts frightens me a bit because of what comments are on this site I might have sometime before I get to the position that some of you are in, falls backwards always speech very poor use light writer to communicate freezing sunglasses almost all the time.We a wet room stairlift hospital bed slides sheets and a lifting cushion, so my thoughts go out to you all for doing yes what we would all do for our love ones I going leave at that now just getting upset
Please don't get upset! My point was, it's fine to feel whatever you are feeling, frustrated, angry, sad, upset, even resentment. The only feeling that shouldn't be allowed is guilt!
We all spend a lot of time feeling frightened, it is scary, not knowing what tomorrow will bring, or even the next five minutes. That's where our motto, "one day at a time" comes into its own, today has far too many challanges, to let tomorrow, muddy the waters.
My husband is further along his journey, than your wife, but that doesn't mean I am less frightened than you, unfortunately, what you are feeling doesn't go away. You are doing the right thing, getting your wife into a day centre, giving you room to breath. Use this time wisely, go back to bed for a few hours, join a friend for lunch, do the gardening, Go shopping, walk, run or go to the gym, if that's your thing. Just do something that you WANT to do, not what you HAVE to do. It does get easier, having these breaks, very much a learning curve. My first few times off, were spent in the car, crying, because I didn't know what to do. Then the anger set in, what a waste of valuable time. Now, if I want to spend the time crying, that's fine, it gives my credit card the morning off, if nothing else!!!
I found counselling has helped, someone to talk to, to offload the feelings, you wouldn't want to share with your daughter or friends. Coming on here and baring my soul, has helped enormously, it has me through many a dark moment. Please know that you are not alone, we are all here to help you and your wife along this road, that we are all travelling. Write a post of your fears, just putting them down, helps and others reading and giving advise is a very welcome bonus.
Very well written, Heady! You summed up what I have been feeling too. I, too, go to professional help to bare my soul and get these feelings off my chest and out of my mind, if only for a little while. That counselling and what support I receive from all of you is what makes me keep going and I will get through this. Thank you, Heady!
I feel sad and guilty everyday that I'm not with my mum to care for her . Although I stay with her and she stays with me every two to three weeks for a week at a time ( I live 120 miles away) . I want to see her every day ... Care for her ... And yet I have to work and work is here. every spare time I have I see her but it's never enough and I'm always thinking about her and feeling sad and guilty . Just how it is . Xxx
I think we are all heroic for managing to care for our loved ones to the best of our ability. Guilt is a cruel emotion when we are trying our best but at the end of the day we are all human, not superman or superwoman and are all bound to lose patience at dome point, often due to be overtired, feeling lonely and deserted and doing the job of 2 or 3 people. This is especially true to you folk who are caring for someone further down the line than Ben.
As you say Heady throw those guilty feelings into touch and stop beating yourself up.
Thank you for this post. My mother passed away from this terrible disease in March and I still have feelings of guilt from not having had enough patience at times with her. I took care of her until the end. Blessings to you.
How can you have any guilt feelings, if you looked after your Mum until the end? I know that's easy to say, but if you hadn't worked Soooo hard, you wouldn't of been so tired. I know when it's S's turn, of course there will be guilt, but I hope not because I lost my temper a few times(!!!) it's what we do when exhausted, tired and so, so frustrated. There is a new booklet out, by the PSPA, recognising how frustrating it is looking after someone with PSP. It's official, patients with PSP are sometimes difficult to look after and Carers need help to cope with this. The fact you coped until the end, in my book, shows how well you looked after your mother. Be proud of yourself, feel guilty for being a brat at 16, but not for caring for your Mum until the end!
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Losing a loved one to PSP
Every exhale is a moan.
