My brother died just as December showed its cold face in 2011
Twelve Years Ago
I used to care for my brother every Thursday daytime. He was confined mostly to bed then, with a bubbling tracheostomy and the cruelty that is motor Neurone disease.
My presence was more a confidence boost for my sister in law , so she felt content to leave the house for a days' shopping and apart from the occasional meds round and tracheal suction my day would be peaceful as the dogs would run amok in the garden as my brother slept or watched crap tv.
I remember one afternoon he had a coughing fit and needed his tracheostomy inner tube changed and his airways cleared .
To me this procedure is second nature but that day my brother had become irritated and difficult.
He was angry, and had no voice and as I fiddled with the tubes and catheters his eyes flashed red with anger
Moments later he slapped my hand hard as I reached forward with a suction catheter and shocked and suddenly upset I paused for just one second and said a slightly exasperated " I'm sorry"
I remember my brother closing his eyes and flopping back on his pillow as I finished the procedure and without saying anything more I cleaned up the equipment and busied myself with task orientation.
I was ten years younger than my brother and we couldn't be more different in personality if we tried.
I knew I would often irritate him but I never quite knew just why that was.
Initially the gay thing was an issue , but I knew it wasn't really that that irritated him now.
It was more me, my personality and I get that, me coupled with hidden sibling rivalry so often experienced between brothers.
I felt that slap long long after it had happened though
And I remembered my training too on spinal injuries as I watched bulldog Mabel bounce around the edge of the pond. The pond she would fall into a week later
Training which said Internal anger was so much harder to deal with than external anger.
This memory is over twelve years old now. I had to look it up on Going Gently finding the post where Mabel finally swan dived into the pond like Shelley Winters in The Poseidon Adventure
See
https://disasterfilm.blogspot.com/2011/11/sock-down-trouser-leg.html
But I suddenly remembered it as though it was yesterday.
I also remember how the afternoon ended as an hour or two later when I went to check on my brother he gestured to a crappy quiz programme on the tv.
It was our habit to watch it together with me inanely shouting out the answers
And he gestured for me to sit to do the same
There was no need to revisit the burst of anger
It was there and it was out,
And it was finished with.
Those we love never really leave us, do they? xx
ReplyDeleteOn his deathbed 17 years ago my brother asked me if there was anything he should be forgiven for. There had been many fights over the years but at the time none of that mattered. I said No.
ReplyDeleteNothing matters in those final moments
DeleteI have a motor neuropathy myself, but it is not even close to what your brother has, thank God. I only get gradually weaker as time passes.
ReplyDeleteI'll say a prayer for him.
And I say one for you x
DeleteI sometimes wonder, at the end of it what will be important to me. What will matter? I hope I will take my leave with grace.
ReplyDeleteI agree Debby …I hope I can tick every box that needs ticking
DeleteSuch memories imbed into the soul, the small things that say so much. I always craved siblings, never had any. Well, I did have for a day, but am a lone twin. Which is quite another story of telling absence.
ReplyDeleteI took care of my Dad when he came home after a 90% gastrectomy and he had a drain that I was at ease with handling. My mother was agast and appreciative that she didn't have to do that type care, and Ddad was the soul of patience.
ReplyDeleteI hope you remember mostly the good times with your brother.
Hugs!
Perhaps not really finished with. Your telling of it shows it's still there in your mind, simmering.
ReplyDeleteSome of your tales are interesting but you really don't need to add the flowery bits such as "bubbling" - that really wasn't neccessary and it spoils the telling of the tale.
I disagree and I respect John's voice in his real life story-telling. Tracheotomies do "bubble" and I would not consider the use of that term to be flowery language. It is a descriptive detail that improves the telling of the tale in my opinion.
DeleteIt would be in John's mind it was HIS brother after all... what an inane remark. And his descriptions of medical terminology are his to make and I feel he is far more qualified at expressing it than you, who are YOU to deny him his language. You try to be superior but you come off as just a miserable callous piece of work.
DeleteJo in Auckland
Well said, Jo and Pud. The truth here is that that 'bubble' sound is one that is once heard, never forgotten. Like the sound of a last breath. Anonymous's sense of superiority in even daring to criticise John's phraseology just shows a desperate lack of life experience and even less empathy and simple human compassion. What a sad and warped little soul.
DeleteFunny that anon uses the word simmering then proceeds to critics the use of bubbling.
DeleteLinda, I didn't see anything funny about this post at all, it's certainly not an amusing subject.
DeleteLiz said everything better than I ever could
DeleteP, I wasn't saying it is funny in the way you took it. I should have used the word hypocritical.
DeleteI admire Yorkshire Puddings tone of expressing his disagreement and own personal opinion. He does not use vitriol or hurl abuse towards any other just gives an honest and concise opinion. So polite and refreshing to read.
DeleteFamily bonds are always complicated. That said, the connection is there, always and forever.
ReplyDeleteYes complicated and much unsaid
DeleteThat's a good thing about these blogs that we write - they can bring back past times and help us to remember.
ReplyDeleteAnd help us leave things in their plAce
DeleteHow very nice that you and your brother amiably watched a programme together rather than having an angry moment be your final memory.
ReplyDeleteOne of my brothers had made my life difficult,yet I was able to forgive him so fortunately my last time seeing him was at a store,I briefly hugged him,said I love you and left . He died the next week,I am still grateful that his final encounter with me was not one I 've had to regret.-Mary
Family dynamics. Siblings. Complex, unforgettable, and life-long.
ReplyDeleteYes …no point trying to unravel …
DeleteA terrible disease. I can't imagine how I would conduct myself if afflicted by it. As you know, tracheostomy care is very scary for patients regardless of how efficient the nurse is, so I suspect there was more going on than just personal conflict. it crosses my mind you were a safe person to lash out at. A painful memory for you and as nurses I think we get more than our fair share.
ReplyDeleteI understand this, and my brother never saw me in my work environment where I would have impressed him , especially if he had watched me nurse an intensive care patient
DeleteJohn, my sister, a nurse, turned into a completely different person on the ward. I was astonished at her and very humbled to see how totally in control she was, not always something she exhibited in her private life.
DeleteIf I died in my sleep tonight, would I feel I had left unsolved problems behind me? Yes, but I have no way of solving them. It's hard to have troubles I can't put behind me.
ReplyDeleteLove,
Janie
In my experience, both of my own family and of a couple of close friend's, sibling relationships are universally convoluted; add something as dramatic as Motor Neurone disease and his reaction seems quite moderate - perhaps also he might have found it easier to 'vent' on you than on his wife, do you think?
ReplyDeleteOf course, he was frustrated and had control issues as well as a terminal condition to deal with
DeleteLooking at all that I would have punched me !!!
Dependency can lead to resentment on both the part of the person being depended upon and on the person doing the depending. In this case it sounds like the latter.
ReplyDeleteAnd you dont have to rely on a younger brother , when it is you that “ should” be relied on
DeleteI can imagine there were times when your brother felt keenly the injustice of his brother being in a position to help while he was stuck in his situation. It had to come out sometimes. My grandfather died from MN in the 30s. Not so much medical help then. My Nan nursed him through it. I thought I had inherited it, instead I got PPMS.
ReplyDeleteWe have MND patients at the hospice as there is no other respite areas for them , I have great difficulty nursing them
DeleteI can really see why internal anger would be harder to deal with. You and your brother seemed to handle it as I would hope to. Some diseases are so very cruel and hard on both the patient and the carer.
ReplyDeleteI love the image of Mabel leaping into the pond! There are some names I recognise while reading the comments. How good that you have some followers who have been with you for such a while through your journal writing.
Some of my followers like weaver has been with me for ever……I Shall miss her dearly
DeleteHopefully she'll surprise us all and live to be 100,
Deletethat is possible isn't it?
Mary
You and I have similar brains it would seem, we remember the minutiae of long past events ... but you get the memories written down in a true story telling way far better than I ever could.
ReplyDeleteYes Sue, I remember a look , or one word or one deed.
DeleteIt’s a curse
As I remember ever cruel comment my ex husband ever said
Snap.
DeleteMy father showed the anger and frustrations of someone who knows that they are terminally ill when the person caring for them has their whole life ahead. Understandable.
ReplyDeleteCompassionate words, thank you Veg artist. I'm a carer for someone who is terminally ill and it's hard. Your words helped.
DeleteVeg, that’s why it’s sometimes so important for patients to enter hospice care, the nurses can face the negativity and the families can be families once again
DeleteI think most patients and their loved ones would prefer for them to be nursed at home, unfortunately unless you've got lots of money to pay for private carers it isn't always possible. Someone going in for 10 minutes 4 times a day isn't enough to care for someone who is needing complete nursing care. That is all we were offered. Defecating not long after the carer left meant several hours lying in their own faeces until the carer was due again. The system doesn't work and it's cruel when loved ones want to stay at home.
DeleteEven where hospice facilities exist, and they didn't with my father, 55+ years ago, that only involves the end stage. From ill-health, diagonosis, chemo etc, there were years of reliance on family - in our case, his children.
DeleteWe always ask the patient about their preferred place of death , that’s why our “ hospice at home” service was developed
DeletePat, just as an aside, when my mother was dying, she wanted to be at home. I have two sisters. But in the end, we all took care of our mother. Hospice came in and they were wonderful, but my mother was never alone. Dying at home is a family decision. It is not easy, but there is a satisfaction to that.
DeleteEven with your empathy and after all these years I'm sure you can still feel that sting. It was such a long time ago and I was already one of your loyal followers by then.
ReplyDeleteIt’s the first and last time my brother physically hit me
DeleteAnd I can still feel that slap
You are amazing and very caring!
ReplyDeleteAnd we continue to learn, "Internal anger was so much harder to deal with than external anger" caregivers are not born that way, they are trained and keep learning.
ReplyDeleteAnd they can debrief
DeleteMy maternal gran always said that you forget all physical pain no matter how bad but you never forget the hurt caused by the spoken word. She was so right, even if the words were not meant to cause distress, it still stings. So very sad to hear about your brother, it is a terrible disease. Jan in Castle Gresley 🙏
ReplyDeleteMy brother coped with unmeasurable unhappiness and stress and did so the best he could. Much better than I ever could
DeleteHis wife was a hero
MND is a cruel beast of a disease and I am sorry that it took your brother so young. It is funny what we remember of times shared.
ReplyDeleteI cannot watch deal or no deal since then
DeleteAfter reading about the sock coming out of the trouser leg it reminded me of an incident at work. I used to work for a Recruitment Advertisement agency and we had the ILEA account amongst others. We needed to go to a specialist unit to talk to their recruiter about how to advertise a ‘hard to fill’ vacancy. We were meeting in a Hospital for the severely mentally challenged. My boss had hay fever and was sneezing away. He pulled from his pocket what he thought was his handkerchief but which turned out to be a pair of young boys underpants. Not at their cleanest.
ReplyDeleteHe had been helping change of of his young sons but I’m not at all sure the recruiter believed him.
I may be wrong but it seems to me that he was angry at being in this position and you were the only one there to express his frustration and fear and, yes, deep anger to. And he knew you would still love him. I don't know. I do know it's so very, very complicated.
ReplyDeleteHe didn’t know how good a nurse I am
DeleteBrothers don’t I guess
I wanted him to though
"he didn't know how good a nurse I am"
DeleteWow, that's some statement.
Says it all really.
You'll be saying you're modest next.
I think this is an unfair comment Anon, and not worthy of you or anyone else
DeleteYou should be ashamed
This was a touching post. Brothers frequently have sibling rivalry. Some events in our lives we never ever forget. Your writing is always spot on in my humble opinion. Take care, Mick
ReplyDeleteThank you mick
DeleteHorrible disease, I hope he had a good life before his diagnosis x
ReplyDeleteThanks for talking about this, John. It puts into perspective a similar incident with a suffering loved one that has always preyed on my mind.
ReplyDeleteI'm glad you have many happy memories with your brother to soften this moment of anger.
ReplyDeleteIt must have been difficult for him to bring you back in as he had no voice to apologize. Sad memories.
ReplyDeleteNo voice no power
DeleteWho wouldn't feel anger, being in that position? It seems very understandable, though of course not fair to take it out on you. At least you were both able to move on soon afterwards.
ReplyDeleteI cant believe it was 12 years ago
DeleteIt's awful not having a voice, literally, not having a voice. It's so isolating. I didn't realize you'd had a brother with motor neuron disease. Is it also called ALS?
ReplyDeleteWe had a patient who couldn't talk, Mary was her name. She had cancer of her tongue and her tongue had been removed. People ignore you when you can't talk. She had diarrhea and pulled out three PICC lines, running to the bathroom. Why didn't anybody put the two together?
He has ALS which is the progressive and quick version
DeleteJohn, I've just read most of the comments. It's a wonder to me, that so many of us have faced similar situations, with similar feelings. That helps me so much, I feel much more normal, and less like a monster. When I was caring for my elderly parents, I had such roller coaster feelings, from annoyance and anger and disgust, to pity, compassion and love. And I figured out that family are not the best to care for family, there's too much baggage. People who are not family and are trained are so much better at it, and can be objective and more kind as they have no dog in the fight. I still have guilt for some of my feelings during those times caring for them before they died. Sigh. I have a good counselor, thank God.
ReplyDeleteI always say to families who feel guilty at giving the care giving to nurses
DeleteNow you can be the daughter/wife / son and NOT the carer
I have been attempting to express my feelings on this subject to add to this post but alas, I cannot. Too close to some of my own history to form the words, I guess. But, thank you for the post and for the many readers that have added to the discussion. Jackie
ReplyDeleteYes, and I appreciate that! Jackie
Delete