I’ve been quiet the last few months. Not seeing many friends, not going out much. Other things have taken priority: moving twice in six months, spending a lot of time with my aging father. But the main reason has been that I’ve been coming to terms with a decision that had its germ at the beginning of this year.
In the middle of 2010 The Boy had an “episode” which for the first six hours looked like another stroke. There was another trip in the ambulance, this time from the nursing home, with lights flashing and siren blaring. I left the hospital that night not knowing what the following morning would bring, whether I would be asked that awful, final question: how much treatment do you want to be administered?
The following morning brought a changed Boy. In some ways it was like the last two and a half years had not happened. He wondered why he couldn’t speak, walk, think clearly. He asked what had happened. I explained that he had been ill since February 2008, and that this was what his life had become. He accepted this with seemingly much improved cognition. Previously he had been in a bit of a dream, just drifting. Suddenly he was more aware and motivated to improve, though at the time he was actually quite ill with a severe chest infection that kept him in hospital for a week.
Because of that improved cognition I was able to sweet talk another month of live-in rehab out of the system. We went to the Royal Rehab Centre at Ryde with high hopes. It seemed like finally we were getting somewhere and his brain had suddenly “woken up”.
We went to Ryde in September 2010 and spent a month there. Goals were set that related to skills needed for living at home. Skills like being able to put on a shirt, brush his teeth, shave himself without assistance. Continence was worked on. For the first couple of weeks the improvement was noticeable and encouraging.
Then it all stopped, again.
This is the nature of rehab – improvement followed a plateau.
At the end of the month we went back to the nursing home with some plans in place to build on the work done during that time. We kept hoping for another improvement, particularly in cognition, the main obstacle to his coming home.
That improvement has not eventuated. While he continues to make good progress in mobility, walking with a frame and one assistant, feeding himself, the cognition has not improved. This has resulted in a serious fall in August resulting in a cracked hip and another four falls since then. He forgets that he is unable to walk unaided. He has no understanding of how serious his disability is.
The lack of improvement by the beginning of 2011 meant that I began to consider that he may never come home. This was a massive shift in thinking for me. I had said from day one that he would come home and I would look after him come hell or high water. But I began to realise that at the very least this would be a mammoth task.
I could not expect our children to devote their young lives to helping and there was no one else to help. Having him at home would mean that we could either live in poverty on the pension, or I could work and then come home each evening to a 24 hour care proposition with no help.
The grim reality finally sank in.
I have talked this over with some very close friends and our children, who have been supportive. I still cry every day. He has told me many times, in moments of clarity, that he does not want to be a burden. I’d willingly shoulder that burden, but there are practical considerations. The painful reality is that we both have a better quality of life if he stays in care. We’ll both eat better and be able to afford entertainment and therapy. The little things that make life bearable.
So, finally the decision is made. Unless there’s a miracle, we will never live together again. There will be no more travel together, no growing old sharing the same bed. I now have friends he’s never met. I wear clothes he hasn’t seen before. My hair is different. My life goes on while his has stopped. Hopefully he will eventually leave the nursing home and go to a shared accommodation situation where he’ll live with others closer to his age and have a more fulfilling life. I’ll still visit most days and take him out to activities and to see friends.
When we were originally given the grim prognosis that he would never wake up, would spend the rest of his life in a coma, and that he may not recognise anyone, my response was that this was a five year project and that he would be back at home by then. Perhaps the five years was the time it would take me to accept this new life.
This was not something we thought about at the age of 16 when we saw each other across a dance floor and fell in love.
I feel like I have broken every promise I ever made to him. Failed him.
In spite of all that’s happened we’re still so very lucky. We had almost thirty years together before the axe fell. Two beautiful children, a life time of memories, and wonderful friends. Who could ask for more than that? We’ve also met some inspiring, dedicated, and passionate people in the last few years. Had the opportunity to look at our lives and jettison the things that aren’t important. Old friends from our school days are back in our lives. (We still laugh at the same old jokes). Life is good, and love is all.
Hi #J,
A truly beautiful and touching insight. Thank you for sharing it with us.
Gryff xx
Thank you dear Gryff. I still feel very lucky, surrounded by love.
#J x
Thanks Dianne. xx
Very difficult situation for you to be in. You can only do what is best. Hope things do improve 🙂 xx
Hi Aleisha,
I’m sure they will, we still have hope. Thanks for reading and commenting.
Juju x
So poignant and personal and a rare privilege to bear witness to the joys and lows of such a profound love affair. You didn’t fail him just as he didn’t fail you and I know you know that. It was the frustration and resignation talking. You must feel like you’re giving up hope but you’re not and neither of you are giving up life or love. Adjusting, yes. An emotional shift though is so much harder and takes much much longer than physical adjustment. But you’re a very special person, Juju. Very few of us can be so honestly sensitive and touch hearts in the way you do. The world is richer for having you in it.
Hi Michelle,
You’re correct about the adjustment. Thank you for the kind words.
Juju xx
Tough decision.
We are only seeing the tip of this iceberg, we aren’t seeing the sleepless nights that are part of this decision.
There is a burning question that asks itself:
Why would a severe chest infection bring improvement in cognition?
Is it something to do with increased blood flow?
There is always a glimmer of Hope…
Hi Sam,
It is a complete mystery which confounded the myriad of doctors. All they can say is that with brain injury these episodes sometimes happen. Yes, there’s always hope.
Juju x
I can’t imagine how heartbreaking it has been for you to make this decision, but it seems like it has been the right one. All the best to you both and your family. I hope his support accommodation comes through sooner rather than later. xx
Hi Treacy,
Yes, here’s hoping! The good news is we’ll probably have a little bit of funding for therapy and activities while we wait. Thanks for reading and commenting.
Juju x
In my medical years I have watched peeps make decisions like this……
And I know that here, in this headspace, everybody hurts.
It always seems unfair. But you have counterbalanced with all the joy that got you to this time and this place.
Well done you.
Hugs.
Hi Peter,
Thanks for your understanding and for taking the time to read and comment. It’s a sad situation but there are worse off than us. We have those years of joy to fall back on. I’ve met peeps who’ve had disaster fall much younger. Their situation seems untenable to me.
Juju x
Touching story and a tough call. For what its worth, I have talked about this situation with my nearest and dearest. Their instructions are to move on since the person that they knew would be no longer. A shell is no longer the whole person and I have no desire to cause sadness to those closest to me. Best of luck and best wishes. c):0)
Hi Bill,
It’s a good idea to have those conversations. However you’d be amazed how much of The Boy remains. That’s what makes the situation so difficult. He’s not really a shell. The will to live and return to the old life is strong. Don’t be surprised if your family chooses not to honour their promise.
Juju x
Didn’t know you had a new post. How to tug at heart strings, woman!! Your story is sad and one you should not have to tell AND you did NOT fail. You shared most of your life with the boy and that’s a good thing. You’re so strong and a survivor. One foot in front of the other ♥
Hi Joanne,
Thanks for the reminder about one foot in front of the other. I tend to forget that sometimes. I don’t think the guilt will ever leave me though. It’s part of the territory for a carer (I hate that word btw).
Juju xx
Nothing to say that hasn’t already been said here. You’re awesome (and the fact that you made the effort to come to my birthday dinner meant so much esp given all this). Best wishes always (oh, and If you want to come on a road trip on 14 January for two days let’s talk…)! xx
Hi Lynda,
Thanks for reading and I’ll give you a call. 🙂
Julie
Julie…I made a mistake in my comment earlier on. I was in Coorabel a little over a year ago not a month ago…oh dear, as I said a number pf my friends would question my level of cognitive functioning.
Take care
Hi Mark,
I remember you very well from Ryde, you were so wonderfully supportive, telling me what The Boy had been doing each day when I couldn’t be there.
I’m sorry to hear you’ve been struggling lately – your road is a very rough one. However I’m sure you carry your troubles with your characteristic grace and good humour.
Take care of yourself Mark.
Julie x
Hi Julie . What a situation to be in and I do sympathise with the decision you have had to make. I relate to some degree as my husband has a brain tumour and I consider our ride as a roller coaster with lots of us and downs . I think you both are entitled to a quality of life and have done what is best for both of you . I can relate to u beating your self up over this decision but you must accept that this is the best thing
for both of you . Remember baby steps and take each day as it comes. Be proud of your decision as this was made with Love. Courage to u as this would have taken a lot to do .
Hi Helene,
Who would have thought way back in kindy that we’d both be at this point today? Thanks for reading and commenting. I hope your husband’s health improves, I think of you often.
Julie x
Thanks for telling the story, about love and survival. my heart goes out to you.
Thank you for reading and commenting.
Juju x
❤ so much to say, but would rather directly. Just know , You are awesome, you have stepped up in every way possible, you have caught up with karma, the universe owes you…………..<3
Hi Dan,
Thank you for your lovely message, it means a lot. We will definitely see each other soon.
Juju xx
Julie, what a beautiful love you have shared since such a young age. I am in awe of you and how you love and support your boy through such difficult times and I know very little of what you have truly been through. Please don’t be so hard on yourself, you are an amazing beautiful woman with a heart as big as the ocean, much love to you ♥
Thanks Cath,
It has certainly been quite an experience. We are so lucky to have shared so many years together. Thanks for the kind words.
Julie xx
Love it. So incredibly touching. xo
Thank you Bron,
It’s very kind of you to read and comment.
Juju xo
Fail??? That word must be stricken from your vocab NOW!! You are to be honored 🙂 xx
Oh thank you lovely lady! I know I shouldn’t, but I can’t help it some days. We’re always our own harshest judges. x