Those that can't do... RANT!
rantingsofamadwomanblog.com...
Warning: The attached blog may be hard to read... it relates to losing a loved one.
Please note, that although it is not "directly" related to having PMR/GCA, it is related to dealing with the dark/depressing times (and thoughts) that often come, when we are managing these illnesses, for the long term. If you have no interest, in the subject matter, please do not read.
You made the right decision. If he had been admitted to the ICU he may have lived longer but the eventual outcome would probably have been the same and his suffering would have been prolongued. I sat with both my parents through their last hours and felt it was more important that they died peacefully and with dignity than be kept artificially alive.
I would really recommend a book called 'Being Mortal: Medicine and What Matters in the End' by Atul Gawande.
Thank you Louisepenygraig. Yes, I have read that book, it's excellent. I am a "Soul Midwife (end of life companion) and before these miserable AI illnesses started kicking my ass, I volunteered at a local hospice and sat with people during their end of life journey. Another book you might enjoy is "When Breath Becomes Air," by Paul Kalanithi... If you need other book recommendations I have many, let me know....
Oh mamici what a terrible time that was for you and now that you are having another terrible time it's taking you back to remembering that time. You certainly did not kill your brother, you did so much for him and your love for him oozes out of this sad story. You did the best for him you possibly could and wherever he is, I know he'll be loving you for what you did in those last few weeks. How many sisters would uproot themselves to travel across the country, live in a hotel for weeks and do all that running around sorting out all that stuff you did. You are a wonderful sister and don't ever forget that.
Big hugs. 🌹
Many thanks Hollyseden... you're right, being in the place I'm in now, allowed me to go back to that very dark time in 2017 (By the way, he died in March, I got GCA in November. Coincidence? I think not) It's a good thing... I needed to be in a dark place, to enter that even darker place... reliving it and assessing it (almost two years later) was much needed and very cathartic! xxx
So glad it was cathartic for you. Feel so bad for you with the #@*# year you have had. Hope your virus? is calming down because it's about bloody time you had a break, and I don't mean broken leg! 😉
Dear Melissa
What a brilliantly written and extraordinarily emotional piece of writing which evokes the complexity of so many elements relating to your experience of your brother's death. Above all else you clearly adored, loved and cared for him in a way which many people would never have been as fortunate to have from anyone - even a sibling - and my bet is he KNEW THAT WELL !!!
The circumstances you describe with such vivid clarity were obviously terribly difficult to negotiate and reveal how nearly impossible it must have been - let alone how it 'felt' - to get through all of that on your own !!
You knew what to do however, BECAUSE you knew your brother so well that it was not an 'intellectual' but a deeply felt intuitive decision based on the strength of your love and compassion, your strong and sensitive character and how well you knew 'eachother'.
We all know that when the people we love have 'gone' it is US who will suffer and have the grief - for the things we have done and for the things we have not... BUT regardless you were STILL brave enough to enable his 'release' knowing it would always be a conflicted memory. So it was ultimately a truly 'selfless' act Melissa that your brother knowing you would have trusted as the best possible decision for 'him'.
I always think that 'grief' is the reflection of LOVE and the greater the grief - the greater was the love ... and you clearly loved him very much - and as I said before - I think he KNEW that and the consciousness of him you carry inside you also harbours that 'truth'.
I am positive that most of us here would hope that in similar circumstances that someone as brave and loving as you would be there to 'let us go' when we needed to ....
Much Love
D & R
XXXX
Tears... tears... and more tears. Thank you. I know, in my heart, what you say is the truth... but my "head," (I think) needs reassurance and redemption. It was/is all good. I totally agree with you that 'grief' is the reflection of LOVE. The grief I feel, at the loss of both my brothers, is as intense now as it was both 10 and 2 years ago... We had a special, very unique bond.... losing them was like losing large chunks of me. Thank you Rimmy for reading my rants and for always knowing exactly what to say! ❤️
Beautiful Rimmy. As usual you have the words of an angel. Xxx
Dear Rimmy,I think that your kind,thoughtful reply will help many of us here when we remember or have to face losing a loved one.Thank you for your words of great comfort.
I hope this helps. A good friend once said that the commandment Thou shalt not kill should now have a “but” ... thou shall not strive, officiously, to keep alive. I understand your pain, when my mother was diagnosed with terminal cancer my brother and I spent a very difficult time explaining to my daughter why we had told the docs to stop further investigations, stop painful and upsetting treatment and keep her pain free and comfortable. I hope you can forgive yourself, all thoughts with you. Dot.
Cheers CT. Love it; "... thou shall not strive, officiously, to keep alive. " I made same decision for my other brother, but we were closer and our relationship was much less fractious. Thank you and I am sorry you had to experience the same with your Mom. 😔
Strangely the boys accepted it with few questions. The very junior doctor was a bit of a problem but we asked to see the consultant who fully understood, I hope he had a quiet chat with his junior. Our mum got a quiet pain free time.
I'm so happy to hear she was given the dignity to go quietly and pain free... as dd both my brothers and my Mom. ❤️
That must have been so hard to write - harder perhaps than the original decision. I believe you were right, totally and absolutely right to take the decision you did. He died with dignity, in peace and relative comfort - ICU for the dying is a taste of hell. Not just for the patient, for the entire circle of family and friends who love them.
You did not kill him, you allowed him to die when it was time. Modern medicine can do a lot - and that includes keeping people "alive" who really should already have set out on the next journey, whatever it is. You are one brave woman xxxxx
Thank you PMRPro. I appreciate your wise and words... And, yes it was most difficult to write. ...but in the end it was quite cathartic. And I agree, "...modern medicine can do a lot - and that includes keeping people "alive" who really should already have set out on the next journey." I definitely believe that society in general and the medical profession need to reassess our beliefs and thoughts regarding death and dying. Thank you again. xxx
You are not to blame. Time to tell yourself that and believe it. You were totally and utterly compassionate with only his interests at heart, don't beat yourself up, he knows you did your best, as always. xxxx
I hope he knows Telian, I hope he knows. We had a difficult relationship, filled with LOVE, but totally different outlooks on life. I hope, in the end, he knew I wanted only what was BEST for him.... Thank you. xxxxxx
He did know, you made him as comfortable as any caring person would - enabling him to drift away to serenity for which I’m sure he is eternally grateful. He is probably wishing he’d shown his appreciation of you more when He was with you. You’ve shown an inner strength that many of us couldn’t do by writing down your thoughts. ❤️
❤️ ...how lovely, thank you
💔
❤️ back at ya, Mrs Nails! I hope that grand baby is thriving!!!!!
Just visiting her for the first time this year, l’ve had an awful cough so had to male do with Videos & Photos xx
Hope you’re doing OK & hanging in there with everything that is going on? ❤️🌺❤️
Only a religious fanatic would say you did the wrong thing. Any sane compassionate person would agree that you made the best possible decision for your brother given his condition, and that he was fortunate that you had the authority to decide. It would have been terrible to have traded his peace and dignity for a few extra hours or days of traumatic so-called 'life'.
Thank you Marijo. In my heart I do agree with you... sometimes my head butts in, and starts all kinds of trouble! Thank you.
No, what would he have gained exactly? And if you had caved in and made the other decision, I think you would feel even worse now.
❤️
I want someone to be there for me like this, no ifs buts .
❤️ Have them call me... I'll be there.
Thank you . I lost a sister in her forties and remember telling them that a dog would be put to sleep . You did the right thing . X
❤️ Thank YOU!
I think you have summarised a lot of your feelings and as you say it was / has been cathartic to write about this dark place while you’ve been in a dark place. You knew your brother, you knew/ know your motives, you knew/ know the utter love you had for him, he knew your love, commitment and care. That is what generated your response. It wasn’t to be seen to do the right thing,to please the other folk, to be persuaded to do something you truly felt was wrong for him. You say you know all this it is just your head that tells you otherwise. This I believe is the false guilt that we can often feel but doesn’t mean that it’s right. Confront the head thoughts with the truth and move on.
Maybe this awful time you have been having has been a time to reflect and move on. Not to forget him but to forgive yourself, and know that your motives above all else were true and right.
Good, strong, sound advise. I love the term "false guilt." Thank you J.
Absolutely the right thing. My father (lung cancer metastasised to brain, kept alive with some drug which kept him breathing). My stepmother described his death when it was decided to remove the drug. She said his face which had been red and he had looked as though he was struggling and exerting himself, went pale and peaceful. And within a few minutes he slipped away. She said how very peaceful he looked when the drug stopped working They should have made this decision weeks earlier. She, for her part, years later was about to be put through a similar exercise of being kept alive with various interventions But she was still cognisant, so when her medical power of attorney and I discussed the situation (do nothing, let her die, do something keep her alive for longer) we decided, of course, to ask her and she said she didn't want any more medical intervention, She was therefore given hospice care. Which she enjoyed so much she lived about four weeks longer than anticipated, then slipped away in the middle of the night when she was alone, much to the disgust of her power of attorney friend who had wanted and planned to be with her!
I'm sorry to hear about your father, Heron... Your mother sounds very strong, brave and smart. Thank you.
I started to read this but just couldn't finish it. Far too emotional for me today.
Just wanted you to know that I hope your very kind and loving heart isn't taking too much of a beating, and that you are slowly but surely making progress on your challenges on all fronts.
Thinking of you...
Dear GG, I'm so sorry... I am glad you stopped reading! Good on YOU! Sending LOVE... xxx
In my opinion (and I believe most other caring peoples) you did everything right for your brother and for all the right reasons. I'm sure he knows what it took for you to do what you did and I'm also sure he is very grateful to you.
It's now time for you to let your worries go, completely. I know what your thinking, easier said than done! What would your Mom, Dad and brothers say to you if they could? Of course they would want you to be happy, healthy, loved and loving. The same as we want for our families. And they would do everything they could to make this happen. So, hear what they would tell you and give them what they want for you. It's not easy to do this, I know, but practise makes perfect. Hear it, see it, feel it.
❤️
Loving thoughts winging their way to you xxx
More tears... today has been a day of tears. Thank you. It's like a cleansing of the soul. I appreciate your kind words and your confirmation that I did the right thing. I believe you are correct... If I could ask them, what would they say...
Melissa xxxx
Hear your Mom, Dad and brothers say this, see them say this and feel these words coming from them. Do this when you are relaxed - it's a lovely thing to do and I'm sure you'll feel the benefit. Then not only will you feel better but you'll be making everyone feel good too.
Be happy, healthy, loving, loved and allow yourself to be you!
Darling Melissa. You gave him the biggest gift. As I read i thought how it seems to me that your brother was trying to “ will” himself to die. That retreating into deep sleep was his way of trying to access the path to death. To put him into icu would have been horrible for him. You were close enough to him that you knew what he wanted and with your pure devotion to him you gave to him. What a selfless and loving gift. I am in awe of your wisdom, insight and selflessness. Xxxxxxx
Thank you DC... I appreciate your kind words. I'm not sure I am anyone to be "in awe of," as I just seem to stumble along the path, rather than utilise wisdom or insight! 🙄 I hope you're feeling better. xxxx
Hi
Rest assured - you made the right decision.
My husband when told he had terminal liver cancer decided he didn’t want “intervention “ to prolong his life, and inevitably his suffering- and most surely that of his loved ones. He also decided he wanted to die at home and not in hospital.
He got his wish - and died peacefully at home surrounded by his loved ones.
He always said in earlier times he wasn’t afraid of dying, just the manner - and being an ex military man like your brother he knew there were many ways.
If I had been in your situation I would have done exactly the same as you.
A brave decision - and the correct one.
❤️
Thank you DL, I appreciate you sharing your husband's story. I am happy he did not suffer. I hope you're on the mend!!!! ❤️
No he didn’t unduly - from diagnosis to death was 5 short weeks. At home and with excellent care from the local hospice staff.
Pleased to say he retained his sense of humour and cancerous spirit until the last!
Once he’d seen our daughter & family (lives in NZ as you know) I’m sure he said to himself “bugger this for a game of soldiers, I’m off” - and he was within an hour or so.
As the song goes - he did it his way! But it was ever thus 🤦🏻♀️
Good for him! He sounds like a great guy, funny, brave and quite practical! I'll bet you miss him a lot... but I am sure you have amazing memories that keep you going! ❤️
I just read rantings . . .
I send you a long, sincere, heartfelt, big hug. Your decision under the circumstances absolutely the right one. If and when needed I hope my family could do the same.
Thank you B... I'm sure your family will do the same if needed.
Melissa, you have my full support in the decision you made, I hope I would have the strength ti make the same one if needed.
Letting a loved one pass without traumatic intervention is, I think, a good thing.
I can understand why it took you so long to write, the emotion involved is and was intense. Your writing convays your feelings so well.
Hugs and kisses
Julian
Thank you Julian, Tommy was the third (close relative) for whom I had to make and live with that decision.... his was by far the hardest and I have yet to figure out why? Thank you. xxxx
Sometimes it better not to try and figure things out, it may just come to you one day.
Why one thing is more difficult than another can be a mystery, but being able to make decisions is important and you had already made it before the call arrived even if you didn't know.
And never forget that besides all your family and friends out there you haver us here in cyberspace sending you our love and hugs.
Julian xXx
Thank you..., and I feel that love and caring every single day! ❤️
Totally understand Mel. You of course made the right decision for your brother as difficult as it was. It was what he wanted & you knew that. Be gentle with yourself.
Thank you PD, I appreciate it. xx
These are the experiences we carry round with us. I PM’d you before, with my first response. I hope that in some way you have managed to put this weight down, gently in a safe place. You honoured your brother, you did a grown up, wise, lonely, loving thing. I want someone like you beside me when my time comes. ❤️
Thank you for your messages Jane... As you mentioned in your Chat, I too am happy I "poured it all out," here in this safe and loving space. I too think it was the root of my GCA... and may very well be the reason why my knees won’t carry me, and my eyes can't see... I've been crippled by guilt and shame. ❤️
Reflecting on our decisions that we had to make under extreme stress is really difficult.I too can relate to your pain.We loved and we cared and tried our best by our loved ones we should do the same for ourselves... but I find that hard as well.
So many wise lovely words have been sent to you on here.I hope you find comfort in them.
Thank you DD. I do indeed find the loving, caring, compassionate words that have been left for me as healing, comforting and cathartic as it was, writing that truth. Thank you.
It would take me 4 days to write as considered a reply as your account is. However, you must know that it was not your actions that killed Tommy - you listed the factors in his life that all contributed. You were there for him when he was ready to go, as his Soul Midwife as well as his loving baby sister. You were amazing - if that was "stumbling along", I'll stumble any day!
It is time now to forgive yourself, although there is nothing to forgive, and to concentrate on your own health, so you can enjoy your times with your family.
Thank you Rugger... for your kind and insightful words. I may very well be walking this path purposefully, but boy it sure feels like I'm blindfolded and drunk sometimes! xxx
Brilliant post M. Thank you for sharing. I concur with everyone else that you made exactly the right decision - how you get your heart and your head into alignment is another question. Lots of hugs Mb xx
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Well done for writing that piece it must have been so difficult.
I have been in a similar situation with my mother. It was a long time ago and now I know I made the right decision as my mother did not suffer and had a "good death".
Like you, I was privileged to be there when she died.
Looking back there's nothing I could have done differently that would have given a different outcome.
My biggest difficulty was the rest of the family that couldn't accept that my mother was terminal and kept making plans for " when she came home".
I am forever thankful for the McMillan nurse who helped me and my mother all the way through her illness and death.
Time has healed me and I know in my heart that my decisions were out of love for my mother.
Hope you continue to heal xxx
Thank you for sharing your story... I appreciate it. This Was actually the third time I have had to make this type of decision for a close family member... I don’t know why this one haunts me so. Maybe because I never, in a million years, expected him to die!
Dear Melissa I have thought more about this post and think that for you there actually was no 'choice' - what else could you have done when you loved your brother - what else ? Sometimes in 'impossible' situations we almost invent the idea of 'choice' - in fact there was really none if you were to act compassionately - and you did !!!
You have been going through such a rough time yourself and one form of grief can so easily bring back 'all' the others we have experienced ... I hope you can find a way to 'rest' your body and soul and find some 'peace' yourself Melissa as journeying through all this grief and pain would be very very exhausting.
Your mother and your brothers would of course WANT you to have the best possible life you can have into your future - and you WILL begin to improve when you get through some of these (yes many) obstacles placed in your way.
If I could I would send you a BIG green garden to sit in and listen to the birds !!
XX
Ohhhh, aren't you sweet for continuing to think about (and comment) on my story.... again you are right. I had NO choice, but that's exactly what eats away at me! He couldn't take care of himself, he could not go back to his flat, he had no money to get into an assisted living facility, I had been there 8 weeks and had to get back home. I wonder did I just take the easy way out? Did I let him die, because I didn't know what else to do? Although, I obviously didn't "know" he was going to die! ...but I worry, was it more convenient, to just let him go? What a terrifying thought!!!!
No Melissa - it was a FAR from 'convenient choice' or 'easy way out' with all the variables you were juggling (alone)- you are really being very hard on yourself and ultimately you have to think about the quality of life he had left ... as I said earlier if it were me I would have 'preferred' some definitive decision be made by someone as strong as you. It is however inevitable that anyone - anyone who has ever had to make such an onerous decision - and sadly you have had to do this several times - would 'second guess' themselves at some point. I think you were in fact a 'guardian angel' who relieved your brother of a heap of awful and unnecessary suffering ...
XX
❤️❤️❤️❤️❤️❤️❤️
Dear Melissa. Your story tugged at my heartstrings. So eloquently written, and poignant. Kindness and compassion shines through. Your brother was so lucky to have you in his corner. You were selfless. Hope you can find comfort in all these posts from your friends on this site. 😢
Many thanks Sue. Your kind words mean a lot to me! Thank you for reading and for allowing yourself to be moved by my story. Xxx
This was a question I asked my OH when he was recovering after being in ITU and HDU with sepsis. He said that because I loved him whatever decision I made would be the right one. I think this is why you made the right decision for your brother. You love him. Take care love , Jen
Thank you... I like that, nice and simple; I did love him, with all my heart, so the revision I made was the right one! ❤️
Melissa. When your brother said that 1 day that everything was so beautiful...I wonder if he had had a glimpse of Heaven? Maybe he saw himself well, happy and was getting ready to 'go'. No need for guilt, girl.
2009, I heard things were not well with my parents in S.Africa. I packed up everything in England, gave most away, and went home. 2 months after I arrived, my Mom died suddenly from undiagnosed heart failure.3 months later my Dad died from a broken heart...couldn't live without Mom. They had been married 64 years. For a long time, I wrestled with my conscience...could I have done more? I miss them both terribly, but I am at peace now. xxxxxx
I see that having shared your story and innermost thoughts on this forum you have made a massive step in the right direction towards the healing process. I admire that you have the courage to put into words your deepest thoughts.
God Bless.
Thank you.... yes, I think writing, posting and reading the comments has been most healing!
Double Trouble 
GCA - I am not going to apologise for this long post. 
