GUILT?

[Heady]

What is this?

One definition is the fear of breaking a moral standard. If that's the case, what on earth are we all doing wasting our time feeling this emotion. How is it possible for anyone in our situation, caring for loved ones, in most cases 24/7, doing all the things we have to do, with no sleep, no help and definetly no training. What moral standard are we breaking? Surely it should be the rest of the world that is guilty, for allowing us to get into this state.

I know, I know, Heady is on her hobby horse again!!! Guys I am passionate about this and after the recent posts, started by Westerngirl, felt it was time for me to speak up, yet again and pass on the advise I was given, a long time ago now.

For those that know me, yes it's the good old 4R's V 3R's. There are a lot of newcomers to our family, that may not have heard of this before.

The 4R's - REACT. RETREAT. REFLECT. REGRET.

The 3R's - RETREAT, REFLECT. REACT.

In other words, when the "you know what" hits that fan, instead of doing the 4R's, take a step back, leave the room, take a deep breath, count to ten, whatever there is time to do, think what needs to be done, then react, by sorting the problem. I promise it does help. Even I managed to ward off the odd tantrum, by doing this.

Life is not easy with PSP, it's a nasty evil disease, that effects everyone around. We are all tired, frustrated that our loved one is ill. Knowing what the outcome is going to be, already grieving, but not allowed to get on with it.

Guilt is just another tiring emotion, one which, to be quite honest, you haven't got time for. There is enough going on, to take care of every bit of you. Adding to the mix, only means something else has to go. That tiny bit of energy, strength that guilt is using up, is needed in caring for your loved one. They can't afford for you to be under strength, you have to be at 100%.

Of course we all lose our temper, shout and scream, it's a terrible place we are in. That show of emotion is a release of the tension we are feeling. OK, I know it's not ideal to be shouting at our loved ones, but think of it as them doing their part, in their care, by helping you to vent your anger. AND since when was it illegal to yell at your partner. I thought, as long as you made up before bedtime, it was fine!!!

So to end with our two mantras.

One day at a time

AND

DITCH THE GUILT!!!

Sending a big group hug and much love

Lots of love

Anne

[Helen119]

Thank you Anne for reminding me, weird how you just get the message when you need it.

Love and hugs cx

Helen xx

[Heady in reply to Helen119]

Helen, we always need that message, to step back and think for a few seconds. No matter what state your life is in!

Lots of love

Anne

[Helen119 in reply to Heady]

Yes your right but to step back in the moment is hard sometimes, your message this morning came just at the right time, but I will try to keep it in my head so I can give myself the message, it will then become a habit, in any circumstance.

Love and hugs to you xxx

[Heady in reply to Helen119]

Hey, if you only succeed once, that has to be better than not at all.

Lots of love

Anne

[Helen119 in reply to Heady]

Xx

[Hidden]

Good Mornimg Ann, I love you! So often l had no idea how to help my loved ones... I talked with two different professionals . . . Plus a friend from church. She told me God doesn't give us more than we can handle. . . I disagreed and she ripped me a new one... She's no longer on my Christmas card list.

Anyway each of these three women were later dealt trauma & drama into their lives and none of them handled their chaos any better than l did.

Lesson Learned: l do the best l can even when l don't know all the answers & only ask folks that have traveled my path. (Everyone else is clueless, even if they love you.)

Sending Hugs... Granni B

[Heady in reply to Hidden]

Exactly right Granni B. We can only ever do something to the best of our ability. Even Superwoman needs to sleep occassionally !

Lots of love

Anne

[NannaB in reply to Hidden]

Hi Granni B,

I have also heard many times that God doesn’t give us more than we can handle. Many times I was near breaking point during the 6 years I nursed my husband but each time I silently shouted at God and told him that it was getting too much to handle and each time He gave me help. The first time was CHC which provided night carers, then Crossroads sitters who gave me two 4 hour sessions a week. I cried to God the first time C was incontinent and very shortly afterwards I read here about convenes. I screamed aloud at God one day saying, “You are supposed to be able to move mountains so help me move this stupid hoist”. C laughed at that one as the whole thing suddenly shot across our parquet flooring with him in the sling. The last occasion that I told God that I really can’t cope with much more and why was he letting C suffer so much for so long, C decided he had had enough and didn’t want PEG feeding any longer. My prayer was a silent one as I didn’t want C to know how I was so I didn’t influence him. Those last 11 days were filled with a special calmness, peace and love. I have no guilt as I never directed anger or frustration to Colin, only to God. I could not have got through that horrendous time without Him. When someone said to Coin, “ Why has this happened to you”, he answered “ Why not me”. He accepted everything that was happening to him and never complained. I never found faith until I was 36 but thank God He found me before PSP arrived.

I like your last sentence Granni B. None of us know how anyone feels about any situation until we have experienced for ourselves.

XxxX

[Hidden in reply to NannaB]

Dear NannaB God Bless You. I have a strong faith too, its the only reason l have survived my many blessings and lessons. However, l never had the guts to yell at God. Nor did l ever question my circumstances. My life has been constantly plagued with trials & tribulations so l just muddle through the puddles as they come along. Like your hubby I would think, 'Why not me'.

[NannaB in reply to Hidden]

I like your phrase muddle through the puddles. Reminds me of the plaque I have at the bottom of my stairs...life is not about waiting for the storm to pass, it’s about learning to dance in the rain.

May God richly bless you too.

XxxX

[doglington]

Hello, Anne.

Just to add my perspective.

I don't do guilt either but I think there's some confusion between feeling guilt and feeling regrets and remorse.

I regret the many times I " lost it ". Both Chris and I understood why and moved on. I feel remorse for the times I whined about my " burden ". I shouldn't have done but was exhausted. I don't feel guilt. I'm human.

Religion often introduces guilt as a concept.

I'm interested to hear others views.

love, Jean xx

[Heady in reply to doglington]

Guilt has been introduced by religion/society, as a way of controlling us. It's not a natural feeling for humans. Therefore our brain can not tell the difference between a slight misdemeanour or the most terrible murder you can imagine. We therefore have to use our intelligence to put things into prospective.

Shouting and screaming is NOT the worst crime we ever commit. So come on folks, pick yourselves up, brush yourself down and for once, list the positives you have done today, you know the things that have kept your loved one alive, warm and safe. The necessary things in life, having the odd ear bashing never hurt anyone!

Sticks and stones may break my back, words can never hurt me!

Lots of love

Anne

[doglington in reply to Heady]

Words trigger personal meanings. Our deep insecurities are activated. Then we feel bad. Understanding ourselves is the key. Unfortunately when one is emotionally and physically exhausted one is unlikely to be able to do that.

I do know that Chris felt loved. I also know he felt bad about the cost to me. That's what we all have to live with.

xxx

[Hilltoptim in reply to Heady]

I too have been frustrated and said things I shouldn't have.

what comes out of the mouth is what is in your heart. Now that hurts.

I want a pure heart.

Why did I say that?

[Yvonneandgeorge]

Also thank you Anne I felt so guilty when George passed away, I use to get upset and shout at him, felt so bad after, but have come to the conclusion that if I hadn’t of done this I would not off been able to keep George at home, I believe that he knew I loved him, and it was just being so tired and having to fight for his care. I remember he saying he wanted a divorce, which made me smile, when I asked him if he wanted a divorce a few weeks later, he said never never never, which made me realise that he knew I loved him even though I shouted and got upset, people don’t t realise what it’s like to live with this horrible illness. Thank you I have ditched the guilt thanks to all you wonderful people on her especially you Anne you have been my life line, I admire you so much. Yvonne xxxxx

[Heady]

Thank you Yvonne! See you on Friday. Really looking forward to seeing everyone.

Lots of love

Anne

[Satt2015]

Anne darling I love this post!!

I say this f*** the guilt, simple!!

Does you no good

Gives ya, added wrinkles, white hairs, end up feeling ill, get massively stressed, feel like s**t!

We are NOT nurses, carers, doctors just loved ones trying to cope! And at the same time doing a bloody good job!

Ditch it, end of, else it will, EAT YOU ALL UP!! X

[Heady in reply to Satt2015]

See you Friday Amanda.

Lots of love

Anne

[raincitygirl]

This will always be a timely post Anne...unfortunately!.. We seem programmed to beat ourselves up.

Thank you for being the - effective + positive standard - bearer on guilt for our group!!

💛💖💛

Anne G.

[easterncedar]

Thanks, Anne dear. Nice to see you here. I'm feeling guilty every day. Can't help it. I hope folks use your R advice. Too late for me. Love, ec

[Heady in reply to easterncedar]

Hi Sarah, how are you? Your Mum settling in OK?

Sending big hug and much love

Lots of love

Anne

[easterncedar in reply to Heady]

Yes, we are getting along pretty well. I work too much and she is alone during the day. Winter is being fierce. Things will be easier for her in the spring, gods willing.

[Cuttercat in reply to easterncedar]

I join you Sarah but I keep on knowing I gave love to Charles. That’s the only thing I had. I regret so much alas.

Hang in there and stay warm.

Cuttercat

[Tippyleaf]

Oh my goodness you must have been a fly on my wall. Just mopping up after a very big cry having shouted at my husband for falling over!!!!! I saw him moving to the rise position and shouted for him to wait I was coming. Unfortunately I wasn’t fast enough. - 6 th fall of the day all of which would never happen if he wasn’t so impulsive!!!! I definitely did the 4 R’s - my screaming banshee mode!!! Thank you for the reminder I do need to take that breathe ( no time to retreat but a breathe works)

Love Tippy

[MaddyS]

Thank you Anne. As always a lot of down to earth advice. Love Madeleine x

[enjoysalud]

I believe and accept that GUILT is part and parcel of grief, and has been and is part of my grief. I think it is part of the natural process. I believe it is natural for some, if not all, to question what we could (should, might have) have done differently or not done. Whether my (our) guilt is rational is not important. It may be a VERY uncomfortable feeling, one we would like to deny/ignore/not examine, but common, and perhaps if we acknowledge and examine, it brings us back to health.....mental and emotional much quicker than if we don't acknowledge and examine.

My son died of PSP, 20 months ago, at barely 55 years of age. When he died, refusing to be fed about 5-6 weeks after having a PEG installed (following his 2nd bout of aspiration pneumonia). I was in great anguish. So many things I didn't try. So many things I tried that didn't work.

Over the past 20 months I asked myself difficult questions and I answered as best I could each self doubt question...until I understood why I did or did NOT act or do. I even forgave myself for NOT having answers or knowing of things to try. I forgave myself for getting angry at Jeff, for getting angry at his caretaker, for always replying with my truth when Jeff would ask me a question...."I'm not going to get any better, am I mom?".

Life ends in death for all of us, and though we all wished, as caretakers, to save our loved one's, to have been perfect caretakers, WE, IN THE END, ARE ONLY HUMAN. We have not been "perfect", but we have tried our best, even if we fell short. I loved my son, and that included not having all the answers, not taking him to all the "right" doctors, and not being the perfect caretaker.

We are not God, but we live in community and we have this wonderful community to share our questions, our frustrations, our anger, to YELL, to COMFORT each other. There is wisdom shared here and we all benefit. Taking the time to examine that which I feel, or have felt guilty about, has made me aware of all that I did, and WHY I did not do.

We have each the choice to use guilt to our advantage or to deny it or to even reject it. Mine has helped me a great deal.

Margarita, Los Angeles, CA, USA

[HilsandR in reply to enjoysalud]

So well said, enjoysalud, and exactly how I feel. My guilt is not preventing me from functioning, rather it is allowing me to grieve through rationalising my regrets, a process I believe I need to go through. I believe that only when we allow guilt to prevent us functioning do we really have a problem. Always good to read people's thoughts and completely identify with what you have written. Thank you. Hils.

[greelycat in reply to enjoysalud]

Amen

[SewBears]

Dear Anne,

I had not heard about the R’s until I read your post. Thank you!

This is pretty much how I’ve handled the 3 R’s:

RETREAT; My hubby thinks that I’ve developed asthma because of all the heavy sighs I make. I’ll put my hand on my forehead and look down at the ground. He doesn’t see me role my eyes. This gives me a chance to breathe. I don’t tell him that I’m upset, I simply tell him that my allergies are acting up. This works well if I start to cry. I excuse myself, grab a Kleenex, and return with sniffles.

REFLECT; Play charades and do my best to figure out what the heck he’s trying to say or what he needs for the millionth time. I try to make it fun but I’m not always successful.

RESPOND; Try to make eye contact and smile with him, drop my shoulders to ease the stress, help him with whatever the heck he needs and most importantly, pat myself on the back for figuring it out!

Laugh as often as possible and turn the music up real loud.

That was a fun exercise to think about. And a good reminder of how to put the 3 R’s into action.

Thanks!

Xoxo

[LindaK12]

John has only been out of hospital since Friday evening and already I am struggling. Carer coming in this morning to shower and dress him and then the rest of the day ! At the moment I can't see how I can ever get out of the house and continue my life. I feel very guilty that I am resenting the situation already and shedding lots of tears. I keep telling myself it's early days. He has had PSP for about 4 years plus but coped before.

[AnneandChris]

Anne

Thank you, you've summed this up so sucsinctly. I try to imagine Chris's frustration, which he is unable to express. Sadly I'm not very good at it.

So we'll keep on keeping on

Hugs

Anne

[Dickenson2]

I love the fact that you still stay in the site. Most people seem to have their partners at home but I could not cope with John and feel guilty every day that I had to let him go into a home. I go every day and give him his lunch as he is unable to feed himself and it's the only thing I can do for him. It would be so much nicer to have him here but the Carers did not want to come in and I have no family near. John has had several falls lately involving the paramedics attending. He tries to get up all the time. Now the home are saying they cannot keep him much longer as he needs 24/7 care which they cannot provide yet we cannot get CHC and the money will soon run out. I hate this disease as it has given John no quality of life and I cannot do anything to help him. Pauline x

[Tippyleaf in reply to Dickenson2]

Sending you a big hug Pauline

Love Tippy

[NanBabs]

Hello Heady,

A very timely post ! Every day something pops into my mind along the lines of … `I should have handled that situation better` or `why did I shout and scream then`.

Things P said that break my heart such as `do you miss me at home ?`. I know it`s irrational but I think I will forever blame myself for things I did (or didn`t) say or do.

Such wise words - as usual. Thank you.

x

[Abrecheisen53]

Oh Anne,

You’ll never know how much I needed to hear that message today! My John is quickly declining, so I never have the time or energy to post anything anymore. I do however read the posts. What a terrific reminder/message to start the week!

Thank you!!

Hugs, Alice

[daddyt]

And... that's how it's done.

Tim x

[Donnasue1]

Right on target Heady🤪all caregivers go through this trip, and it does no one any good.