I know I have posted this before, but I think it's worth repeating!
I got this from my counsellor, that I saw, when things were really tough for me, during Steve's journey.
The 4R's v 3R's rule.
We all, at one time or other, RE-ACT, RETREAT, REFLECT then REGRET.
My counsellor taught me to, RETREAT, REFLECT then RE-ACT!
This may seem impossible, but basically it means, when something happens, step back, take a deep breath, leave the room, if possible. Think about the situation, count to 10, then go and deal with the problem.
None of us are perfect and we are dealing with an impossible illness, 24/7. Not the ideal situation.
I promise, if you can manage it, it does work. Hey, if you can only do it once, that's one less frustrating moment to deal with.
My heart goes out to each and everyone of you, coping with PSP and all its frustrations. Just know, my biggest regret is not telling Steve, I loved him, more. Not that I shouted too much. Thinking back, I am totally shocked I kept my temper, as well as I did. And, oh boy, did I shout and scream!!!
Sending very big group hugs
Lots of love
Anne
Written by
Heady
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Hi enjoysalud, I agree that the last word in the 3r's should be respond - the word is softer than react and to me means you have thought about what you want to say rather than going in all guns blazing. When you are cleaning up wee off the floor at 3 in the morning it would take a saint not to react. That said, I learnt a long time ago that getting mad with my husband only made the situation worse. None of this is their fault, they don't do it on purpose, we just have to get on with it best way we can without ranting and raving, which solves nothing and just ends up making us feel guilty. My husband is wrecked cognitively and I often see the fear in his eyes when he is trying to make sense of something - I am not going to add to this by yelling at him, especially when he wont understand what he has done wrong. I do go off and have a good cry though - it releases the tension. HilsandR
I will add, however, that unless one has practiced the "RESPONSE" it is easy to "REACT" which ends up helping no one.
I remember BEFORE my son was DX with PSP ( four months prior to dying) there were two instances of my REACTING (I kept a sporadic diary that I started Feb, 2015, eleven months after his first symptoms March, 2014). Both incidents have led to bouts of regret today. One I immediately apologized, and I feel good. Both occurred before his DX of PSP.....when under a DX of Parkinsons.
Looking back on those incidents I wish kindness had been there rather than anger.
Forgiving oneself, I find for me, is much more difficult that forgiving another. Anger is a normal emotion, but with our loved one's so ill and little hope for recovery, perhaps going into another room and yelling into a pillow is helpful to both parties.
My son died last year, May 4, 2017. This morning (every Sat I have a 2 hour phone visit with my daughter who lives in Portland, OR. I live in Los Angeles, CA) I was reviewing the last four weeks of events before my son died. It helps with the grief.
It is so very difficult to forgive oneself but I hope that one day you will make peace with yourself and let go of the regrets. You lost your son so very quickly to this horrible illness and so cruel for one so young to succumb. I have read your past posts and always felt your pain - we are not supposed to outlive our children. I remember seeing a photo of your son, so very handsome and for some reason that photo made me smile. I have had 7 years to learn that it makes life easier all round if I can keep control of my emotions - that's not to say I have not lost it on occasions, especially prior to diagnosis, which took 4 years! I have had my husband for 46 years so despite this illness I am so very thankful for the good years we have had. Best wishes, HilsandR
I have not gotten off the computer...perhaps avoiding going outside to wash windows.
Thank you for your kind words. I have faith in my healing journey. We all have our paths. No matter the sadness, nor the grief, nor the guilt/regrets, I am VERY grateful that Jeff was MY son, and that I did the best I could AT THE TIME. My dad use to tell me, emphasize, that "hindsight is no sight". For me, it adds clarity.
That's just reminded me that my patio doors are covered in little handprints - our 15 month old granddaughter leaves her little prints all over them. There was a time when that would have bothered me but way at the back of the queue of important things these days. It's time for bed here in the UK so I will say goodnight.
It is almost 4pm here. I am about to turn off my computer for the night, but I wanted to tell you PROUDLY that I washed the kitchen, and the living room windows and the screens....no small task. I also washed some plastic flowers that I hang over the big mirror in my bathroom. A VERY VERY good day for me. Nothing like doing that which nags you.
It's funny how life gets us to confront our values and rearrange them. My grandchildren (2) thro my daughter are at the University of Oregon. My granddaughter is an honor student and has kept (for two years in a row) a $12,000 scholarship. My grandson, who I adore, has 2 years of units and "should" (who needs that word?) have graduated this June. 15 month children are so adorable. My children, Jeff and Anne, were 15 months apart.....both in diapers at the same time. That was so cool because I only had two years of washing diapers (they hadn't invented the throwaways).
Last, I have not had time to read my paper (Los Angeles Times), but the headline reads that JUSTICE DEPT WILL NOT DEFEND HEALTHCARE LAW. The closest thing we have to a universal health law. My son lost his his day job as a math teacher to his disability and with it the health insurance that his job provided. He was left with a pre-existing health condition. It was because of ACA (Affordable Care Act) that we were able to pay out of pocket for his health insurance.
Tomorrow is a busy day at church (Presbyterian). It's my turn to be a greeter and also to pour coffee....there you have it!
Thank you for the bit of sharing that we did. I keep you and yours in my prayers.
Grandchildren bring such joy to our lives and certainly for us our little granddaughter has given us a whole new chapter in our lives to embrace. I always think that whatever you are going through there is still joy to be found in every day. You took me back down memory lane with the diapers (nappies as we call them). When my son was born in the 70's the towelling nappies were the norm and whilst disposables were available we tended to use those just for going away or a day out. When I think back of that bucket standing in the bath full of nappies soaking in a solution, not least having to get them dry after washing (we did not have tumble dryers in those days) it makes me cringe. Our granddaughter has the pull on type pants, which makes life so easy. Glad you managed to get those 'back burner ' jobs done - funny how we avoid doing them but feel so good once done. I have an oven crying out for some love but that, along with the little finger prints on my patio doors will have to wait a bit longer. It's our 46th wedding anniversary today and our daughter is doing a BBQ for us. In the past we always had a trip away to celebrate but those days are gone and too difficult now for me to manage especially as being away from home exacerbates my husbands agitation. So, we will sit in the sun in our daughter's lovely garden and raise a glass to 46 years and entertain our little granddaughter, who never fails to make my husband smile, which is a rarity these days and lovely to see when it does happen. Wishing you a good day and thanks for the chat across the miles. HilsandR
You must have a crystal ball seeing me when oh boy did I react at 5am this morning. After another sleepless night lost the plot with a husband wanting his nails trimmed!!!!
Thank you for reminding us. It made me stop, take a deep breath and at least count to 10 this evening. I never used to be a shouter or so irritable and absolutely hate myself afterwards so I shall be trying really hard with my 3Rs
No crystal ball, just been there! Steve wanting a shave during dinner etc. Etc. Etc. Tippy, life is hard, you don't need to be perfect, just being there is enough. If shouting is included, so be it. It really doesn't matter. That is the point I am trying to get across.
Didn't have your great advice when I needed it! I did a lot of shouting until the last year.
It became obvious to me that I needed to change my attitude as I perceived a much reduced enjoyment of life because of my fiery reaction to hubby's apparent lack of thought, co-ordination, poor driving, etc! Not that it worked every time!
Our relationship was fiery in general on both sides, but I look back on a relaxed 'last Christmas' when I just got on with it. There was also a premonition on my part that life was going downill fast, and that I should spend more time being "me" rather than the grumpy frustrated dragon that seemed to have surfaced!
Looking back now, I just wish I had not assumed that because he was 5 years older than me, that he was just aging faster! I just hope that if dementia hits me, my family will understand me and be more patient than I was!
Oh Jen, how true this is..! I look back on the years when Hubby was stopping all interest and initiative in things, and, his being 13 years older (and an introvert), I thought "Well this is it: I knew the "rocking chair" time would come but not THIS early!" and I railed at him! Now looking back it was probably the invisible beginnings of CBD. I say his symptoms started 2013 but really - who knows? Bucketloads of heartbreak.....
Got that tee-shirt Jen. Steve was 10 years older than me and yes, all his problems were because, I quote " didn't understand that!!!" PSP has a lot to answer for, long before we knew anything was wrong.
Thanks Anne, you must have a listening device in our house as this week has been a battle field. I'm trying to follow through PT's and SALT's exercises with W but after 20 secs he goes back into his old ways shuffling along and losing his balance, stuffing food into his mouth, speaking too fast and slurring is words so can't make him out. Then one night he said very clearly "Why can't you be kind to me". I just left the room and burst into tears. How does one cope with that because I can't get those words out of my head. I tried explaining that its because i love him and I'm only trying to keep him safe and want to know what he is saying, but he just blanked me.
Sorry Anne shouldn't have burdened you with this, but just had to tell someone who has been through it all.
We all have to live with this. The last words Steve managed to spell out on his board, a couple of weeks before he died, was "I have told you a thousand times to stop bullying me". Yes I got very cross and deeply hurt. Now, I actually think it was brilliant. Showed he was still my Steve, even in the deepest depths of PSP, might have taken his body, but his mind was still 100%. It's the same with W. Treasure and hold on to the fact, he is the same inside, PSP is not destroying that!
Thanks Anne this PSP is the pits. You are right it's PSP to blame not W. Feel so sorry for him, he use to be so fit and active, now life is so different. Hope you have a lovely day. xx
Your post brought tears to my eyes as it brought back so many memories of my late husband.I only wish he had said that to me-maybe it would have caused me to be kinder.
Jan, you were as kind as circumstances would let you be. PSP was/is and evil task master. There is not one person in this world, that could have done anything any better or different to us. You were always there for your husband, I'm sure that's all that really mattered to our loved ones. They didn't need our kindness, just our love, which everyone one of us on this site, gives/gave, every minute of every day, just by being there.
Jan I don't think you have an unkind word in your vocabulary. You looked after Don with so much love, it showed in your posts, and I'm sure he felt it as well. So don't be unkind to yourself in thinking otherwise. Hope this finds you well. Lots of love, Nanny857 xc
Jan, a friend texted the following to me which I hope you don't mind if I share it with you. "Life is not easy but god gives us strength ..he is faithful ...his mercies are new every morning".
Feel for you and completely understand your sadness, frustration and pain.
Heady’s post has helped release these feelings with this post of 4Rs 3Rs . It is good to actually say these things to share the reality of our lives.
I am holding onto the expression ‘ don’t need to be perfect but be there’. There is no one else apart from those of us in this situation who really and truly get it!!!
Sending you love and hugs let’s hope we all of us on this site have a better day today.
Thanks Tippy, you and Heady have given me sound advice and I'll take it on board. We have our 5 year old grandson staying over for the weekend so taking him to the park this morning and cinema this afternoon. A fun weekend.
Hope you have as good a day as possible. Thanks again Nanny857xx
Hi Anne, I am afraid you have to be the reactive part. That's what PSP is doing to you. We all suffer the symptoms, so never feel guilt if you can't always control yours. Anymore than Chris can control his.
Thank you for being so honest Anne, believe me, it makes the rest of us realise we too are only human. It is an impossible illness and I found that when I needed the most help, in the early days, it wasn`t there. Later on , when the illness takes away such a lot from our partners, there is more time to reflect and I`m sure each and every one of us has times they regret that their patience was stretched to breaking point.
The important thing is to accept the huge pressure we were/are under and tell our loved ones as often as we can how much they are loved. Accept that we have all done/are doing the very best we can and we are only human !
Thank you Heady. Wise advice. Somedays are so hard, guilt is so strong. So tired, short tempered. We are in Russia right now for holiday. Not disabled friendly. I know this will be our last trip. Trying so hard to make it a good memory, but so exhausted. Thank you for some much needed perspective !
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