(with photos from our scrapbook of memories)
Leaf and I have moved on to another era. I’m calling it The Penultimate Chapter because I’m hopeful the ultimate one will be more serene.
Ten days ago, I cracked. Our doctor referred to what happened to me as a Burn-Out. My body simply took over, I shook, my heart was palpitating, I hyper-ventilated and the tears poured in torrents. I fretted my blood pressure would be sky-high. After all, the gerontologist had told me, only a couple of weeks ago, that I mustn’t get too stressed for the sake my heart!
We had been for a walk round Castelnau lake and just said goodbye to Leaf’s brother and sister-in-law who’d been visiting for his 72nd birthday, when my system went into top gear. I managed to get us to the doctor’s up the hill. Leaf stayed in the car while I went in, plonked myself on the receptionist’s chair and wailed. She was marvellous and persuaded Doctor Sabathier to see me right away. He didn’t need telling what was going on, he’s very much aware of our situation. He calmed me down, took my blood pressure, which was mercifully okay, then brought Leaf in from the car to give him a jab – heaven knows what it was – before going into his treatment room to make phone calls. We sat in a daze and waited. When he emerged he said an ambulance would be arriving at 10 o‘clock the following morning to take Leaf to Lannemezan hospital where a room had been booked for him.
Back at home, how we got through the rest of the day, I have no idea, it’s a blank. I clearly went onto automatic to cook dinner and pack essentials ready for the morning.
The ambulance was on time and the driver and I helped Leaf into the back before they drove off. He was leaving his home forever. It all happened so quickly, I hardly had time to breathe.
Immediately after lunch I went to the hospital. We had a pre-booked appointment with one of the gerontologists who was to examine him and write a report. I needed this to be able to activate the Enduring Power of Attorney (Mandat de Protection Future) we had drawn up many months before. I settled Leaf into his room while we waited for the doctor then he was taken away to his appointment and I left for home.
The next day I went to see him but couldn’t find him. He had apparently been wandering the corridors but was nowhere to be seen. Finally one of the nurses spotted him. He’d fallen down between the bed and the window and was lying inert. I was told to leave the room while three nurses lifted him up onto the bed. When I went in, he was immobile with his eyes shut and his mouth open. I spoke to him but he was only able to murmur faintly. I decided he needed to get over his fall and left.
The next day, after a three-hour session here with the Assistante Sociale sorting through a myriad of necessary paperwork, I rushed to the hospital, very worried at what I might find. I wondered if he’d hit his head as he fell or if he’d had a TIA (mini-stroke).
Leaf was on the floor of the bathroom playing around with the lavatory brush. His speech was faint and incoherent. His hands were trembling. I managed to get him up, into the room and the armchair. His trousers were wet, so I changed them – a bottle of water lay half empty on the table with several things soaked. He’d clearly knocked it over. I checked his head for signs of a bang, but there weren’t any. He seemed pleased to see me but I couldn’t make out what he was trying to say. I gave him some fruit-juice and biscuits. He sipped the juice and took a bite of biscuit and some banana but had trouble eating them. He really was in a pathetic state and I was very shocked. I couldn’t help tearing up to see him like that. Nonetheless, he responded to a big cuddle and managed a smile. I wrote out an explanation of why he is where he is which he seemed to understand.
After that I had a quick meeting with the hospital Assistante Sociale in prepartion for a full meeting later in the week. When I got back to the room, Leaf was up and wandering, zombie-like down the corridor. I gave him a hug and told him I’d see him very soon.
Back at home, full realisation of the new course of our lives hit me a very big blow. I spent the whole evening crying my eyes out. I thought the wellspring of tears would never stop bubbling up. It was relentless and exhausting. I knew that my life with Leaf was over. He would never again sit across the table from me at dinner, doze off in an armchair when I put a movie on the TV, call for his beloved cat, Pepe, and go for walks with me and Monty. The mundane but good things of our life were now in the past. I have the house to myself with all the memories of the man I married five years ago yesterday, surrounding me in so many ways. His books, clothes, cards, writings and the precious memorabilia of his travels are everywhere, but there’s a horrible emptiness. It’s as though he’s died.
Since those first few days, I’ve been immersed in paperwork, with endless copying of documents. I’ve seen the Assistance Sociale at the hospital again and learned that Leaf will be transferred this coming week to the dementia wing where he will stay until a room comes free at the home. How it will be for him remains to be seen. Dementia wings are not a lot of fun, but I must say I was interested how unperturbed he was by the woman in the next room who kept shouting ‘OUI!’ Clearly, she’s pretty demented.
How was he yesterday?
He was strapped to his bed and connected to a catheter – the nurses had told me he was having trouble weeing. He kept fiddling with the bloody thing and trying to get out of bed but he wasn’t obviously agitated, apart from being very fidgetty and rambling on and on about what I simply couldn’t make out. His voice is a low murmur now. I will ask next visit when the catheter can come out and the restraints be removed. Long-term wearing of a catheter is not good; there’s always a risk of urinary infection which can be utterly horrible. This absolutely can’t be how he will have to pass what’s left of his future, it seems totally inhumane to strap a person down like that, especially someone suffering from dementia. I pray I won’t find he’s still restrained next time I go. I will fight if necessary. With luck I won’t have to and it was only because the wing he’s in is short-staffed on the weekends. I had trouble finding a nurse to make him comfortable then was sent out. I’m really concerned about this turn of events and wonder if any readers have had similar situations to deal with. If so, advice would be greatly appreciated.
Luckily, some time back, we wrote living wills (Directives Anticipées) setting out what we don’t want if we become incapable of expressing our wishes, which Leaf most definitely is now.
I wrote him a love letter saying how I felt about him and our life together. How amazing that, at 57, I’d finally found my soul-mate and been truly happy for at least our first sixteen years together. I told him too that I wouldn’t want him to carry on living if he was ready to go. I read the letter to him and he seemed able to take it in and smiled as I gave him the biggest hug. Of course I was in tears when I read it out, as I am now. Who knows whether he will have the ability to sense when his time has come. I can only pray that he, like his father and my father too, knew when to bring the curtain down and leave the stage.
This post has gone on long enough. Monty is ready for a walk and I am too. So to finish, here’s a short extract taken from the final paragraph of Leaf’s second book ‘Leaf by Leaf’. I believe it to be very appropriate. He loved the English language and was able to express himself fearlessly and eloquently with irony and humour:
We’re all travelling down the river of life, being carried towards the waterfall of death. That’s the deal and there’s nothing we can do about it.
It’s not how long you live that matters most. It’s what you do with life while you have it…….
He always says he’s had an amazing life and only yesterday told me he still is!
And to finish on a typical Leaf sentence.
I’m dying to know what happens after life ….
doodahtwo.home.blog 
Dear Sue,
I’m sorry I have nothing helpful to offer, only to send love to you both and share in your tears. Your love letter was very moving and the photos full of wonderful memories.
I wonder how medicated he is and if this is adding to his confusion and mumbling. And I suppose they had strapped him in to avoid him falling again or losing him when he goes on his walks? Let’s hope a room comes up soon where he can be looked after by dementia experts.
Sending you love and strength.
Jessie x
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Hello Jessie, I’m in bits again tonight. I miss him dreadfully even though life had become impossible. They’ve told me he isn’t on any medication, but you mentioning it does prompt me to ask for a definite denial when I next go. I can’t believe strapping him is an okay thing to do. It’s so cruel. Thank you for your love and strength. I need both.
xx
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Dearest Sue, I have been reading your posts regularly about your beloved Leaf and the slow disintegration of your lives. Each and every time I have found myself overcome with tears and an unbelievable well of sadness, more importantly not known what to say and therefore haven’t. I still don’t know what to say, how to offer comfort, alleviate some of the awful pain, and of course finally I have got there…there isn’t anything I can say, however there is something I can do. I can tell you that I am on the end of a phone to listen, to vent to. Someone who can sit with you in your pain, share it by listening….relieve the emotional load a little. Tell you that your strength astounds me, and your love for Leaf overwhelms me. So perhaps there have been things I could say after all, I’m sorry it took me so long to reach out to you. I am hear now, whenever you want, whenever you feel I could be useful……no task too big or too small.
Sending you masses of love 💔 Janx
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Dear Jan, Thank you for finding ways to say what you wanted to say. I know how impotent we can feel when someone is going through something we can’t change for them. But, as one of those someone’s, I can tell you how comforting it is to know that others are with us in spirit. Thank you for your offer to listen. I’m still very raw and apt to break down on the phone when talking about how I feel, so I’m sticking to writing at the moment. The time will come when I can talk – it’s good to know you are there. Much love back, x
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Hello Sue
It’s always sad to see a loved one suffer.
AD is not an easy one to live with or to be a carer for. You have done your best, it’s time to care about yourself.
It’s good you continue to write and express your thoughts you may be helping others by sharing.
Keep well and safe
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Hello Kirpal, Empathy is often very hard to bear. We are right with the sufferer even if we can have no realistic idea of what they’re going through. We feel with them. I have done my best and I know that hasn’t always been the right thing, that is, according to professional advice, but it’s a learning curve, as they say. Often as I look back over the way I’ve dealt with some situation or other, I cringe at my clumsiness, but it is very hard to suppress our natural reactions, even when we should keep calm and cool. Particularly when accused of all sorts of nastiness and a small part of me can’t help but wonder if it’s true! I think it’s no bad thing to be forced to question ourselves and our behaviour, even if we come to no useful conclusion.
I will be looking after myself and will be able to organise my life to suit the way I want to live. That will take a lot of the stress away. As long as I know he is being well and appropriately looked after.
You look after yourself too!! x
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Oh Sue bless you xxx the love letter was beautiful. The love you have for each other will always be there, hopefully a room will come up soon so he can get the correct care xxx the drugs may be making him more confused and stressed and hopefully they will check for a TIA. They can affect being able to swallow and can affect speech. I can’t believe that strapping him in is something they should be doing xxx Sending love to you both, I wish there was something we could do to help, you know we are here for you. I’m so sorry for both of you as you are both lost and in a strange place but remember his love for you and your’s for him xxx sending love
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Dear, dear Susi, You have suffered so much too and so has Keith. Life can be very tough and we have to cope or, as your mutual Dad would have said, and mine too for that matter ‘You just have to get on with it’. That has stood me in good stead. I’ve asked if they’ve put him on drugs but was told no. They may have done by now.
I will try and see the doc this afternoon, but it isn’t easy to pin them down, even for a moment. If necessary, I will make an appt. As I said, I’m not at all happy for him to be strapped down and permanently wearing a catheter unless there really is no alternative. What are the pads for, for goodness sake?!!!! I know it’s not pleasant to think of these things, we simply can’t be prissy. There but for the grace of God go we all.
Sending lots of love back to you both and it’s wonderful to have such a loving family, I’m privileged to have become a Fielding too. xxxx
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Hi Sue,
I so sympathise with your story and wish I could add something to help ease the pain. It has been a long journey for you and now you need support and help, I do hope you have someone you can lean on. My mother was taken into hospital a few years ago, after a mild stroke. She could see fairies dancing on the curtain rails, dogs being trained in the bathroom and a helicopter landed with a film crew. This may have seemed amusing if she had not been so distressed by it all, she thought the world had gone mad.
You are wonderful to write and tell us what is happening at such a stressful time, thank you.
Wishing you the strength to cope with what is to come
Much love
Gay
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Thank you Helen. It is always humbling to hear of the pain others have suffered. I feel it’s important to remember we aren’t alone in coping with the difficulties that come in the last chapters of our lives, whatever age we are and whatever health problems we may have. The longer those health problems last, the longer we suffer with them. In the case of dementias, we grieve as we lose the person that was.
DOODAH is, for me, cathartic. A way to express how I feel as the weeks go by and to document the course of AD, for us at least. I think it is also fulfilling its purpose for some other sufferers, either with the disease of caring for someone who has it. It’s clear that the more we learn about the main ways our bodies can override our wishes, the more educated we are to take precautions we and be ready should the time come. Dementia is increasing exponentially and must no longer be brushed under the carpet. With love back. x
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Dear Sue, I am thinking of you and the Leaf that was. So very sad for you. Sending love,sympathy and strength xxx Sassy
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Thank you Sassy, All three so gratefully received. You’ve known Leaf for longer than I have and you know what a wonderful man he is. It’s an honour for me to have shared his life for the last nineteen years, I only hope I can share his last days/weeks/months/years in a way that will bring him comfort. Hope you are well and happy. xx
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Dear Sue,
This blog is so sad and I am so sorry for you and Leaf. It does seem as though he is deteriorating rapidly.
I am saddened that it took your complete break down for you finally to get Leaf into hospital. Do you think it was the only way that you could have got the help you so desperately needed?
It is distressing to hear of Leaf being restrained in his bed but it will prevent him harming himself by falling or something else. I expect he will quickly be moved to more suitable care now that you have finally got him into “the system “.
We loved the photos of happy times you had together. They can never be taken from you. We loved Leaf’s phrase of the after life; amusing.
As for Leaf knowing when the time has come to go there, wouldn’t it be wonderful if he does and he can orchestrate that ……
Lots of love to you both xxx
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Hello Adrienne,
Yes, Leaf has gone downhill very fast, poor darling. It could partially be the shock of the move or, as I said, maybe a TIA. I will check that out as soon as I can get to see the doctor – which isn’t easy, they move around the buildings a lot.
I understand why they strapped him to the bed, but it seems so extreme. I will check that out today when I go. Hopefully there will be someone who can tell me what’s what. I’ve written to the Ass Soc there to say I’m coming in and hope to have a word with her. There are other questions I have, so it should be possible, if she’s there.
Leaf’s wry humour is still with him which is hugely reassuring. I must put up some of his cartoons in future blogs.
I like to think he will know when he’s ready to go. I hope I’m right. Like me, he has no fear of death whatsoever. It’s nuts to be afraid of something we can none of us avoid and to let that fear taint our latter years. So sad our society is firmly stuck in the material world. Ever wondered what ghosts really are? Well, they’re non-theists who can’t believe they’re dead because they still have consciousness (joke of course!). Actually, there isn’t a word for people who don’t believe in anything beyond this life? Atheist only means they don’t believe in a god. Interesting. Lots of love to you both xxx
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Hallo Sue,
It will get better as you adjust to the changes in your lives. The best thing that has happened is that professionals are now looking after Leaf. You know that I understand from my own experiences over many years whereof I speak. Your task now is to try and get yourself back together and plot a different course in life – not easy, but you know you’ve got to do it. Leaf, bless him, has gone already – that much is apparent. Sadly he is no longer able to take that final step that we would all like to take so as to say goodbye with grace and dignity, but knowing when that point has been reached is so hard to discover.
When the white coats take over, orthodoxy reigns and one’s best wishes and desires become subjugated to whatever society allows. Caroline’s mum is dying from pneumonia with deep deep dementia as I write – it’s heart-breaking, but she is 95. Sadly, although Caroline has spent four days at her bedside she hasn’t recognised her once, and she has – like many demented people – on occasion become very difficult and aggressive, which is why we need the professionals. Poor Caroline has also managed to contract a raging UTI as well, which is hardly convenient in the circumstances. I can’t even (on account of my age) go in the hospital to give her a break – and you haven’t got anyone to help you either. Here comes a cliché – my heart bleeds for you, but time, and acceptance of reality (hard though it is) will mitigate these first dreadful feelings. You must and will come to an acceptance of the situation. From that point on you can start to re-build. And you will, you’re a tough old biddy. You know our thoughts are with you, and when I say ‘our’ I mean all your and Leaf’s manifold friends. Many of us go back so many years, I’ve stopped counting. Our love is flowing to you as I write, can you feel it? It will always be there. Blessings and peace. John and Caroline.
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Dear John and Caroline, I know you both understand absolutely how I feel and are right here by my side in spirit. How very sad that Caroline’s mum is in such a bad way and how sad the law does not allow her help to slip quietly away.
As I said on the blog, Leaf has no fear of death and is looking forward to seeing his mum and dad again +, of course, the considerable menagerie of beloved pets from over the years. I know people laugh at such sentiments and wonder how we can possibly believe in any of this but we have done a lot of research and read hundreds of accounts of NDE’s, recessions and life-between-lives over the course of several years to need no further convincing. And now we have quantum physics and its many wonders to back us up, how marvellous that the knowing which comes from our heart-mind, will carry us happily up the tunnel into the light. Something to really look forward to, especially as our world is awash with evil and lies and our planet is under attack from all sides. It’s tragic – how I wish there were a God to wave his hand over us and put it all right.
Wow, I’m rambling.
I will look after myself and luxuriate in all those things that I have been unable to do for some years. The sense of independence is amazing but I won’t fully appreciate it until I know Leaf is happily, hopefully, settled into a room at the Castelnau home. On Wednesday he will be transferred from the present short-stay/interim wing of the hospital to the dementia unit where fully trained staff will look after him. And they certainly do need to be fully trained as we know.
It is a huge comfort to feel the love that is coming over from you all. I am privileged to have had wonderful years sharing the life of one of the nicest, most loving, interesting and popular men I have ever met. Blessings and peace back to you and all those long-term friends that I know Leaf treasures, even if he can’t articulate that now. xxxxxx
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It is perhaps the most distressing chapter so far and must be so so hard to bear. All my love to you Sue. I think of both you and Leaf ! Xxxxxxxxxxxxxxxxxxxx
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You’re right, Jeanette. It has been and continues to be the ending of our togetherness. That is what is so hard to bear. Even when he was here and impossible, at least he was here. Thank you for all your loving thoughts. xxxx
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Oh, Sue, Phil and I are so very sorry to hear of this heartbreaking development. I’ve been following your blog and I said to Phil that I didn’t think you could go on much longer caring for Leaf at home. You’ve been incredibly strong, but that level of stress and distress takes its toll. I hope that Leaf gets a place soon and that you get the support you need. Love to you both.
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Hi Phil and Stella. I just noticed my reply to you hasn’t gone up on the post. I’m so sorry, I don’t know why.
Yes, the time had come, I had been thinking I couldn’t carry on much longer but didn’t think it would be ‘forced’ upon me. I’m very lucky to have a lot of loving support, not only practically but in comments, emails, calls etc. It does help to know others are thinking of us when things get really rough. Thank you. Love back to you two too. xx
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Dearest Sue
I am so sorry. I really don’t know how to put into words what I am feeling. I wish I could hug and hold you in person but instead please know I love you both very much and I am sending a massive virtual hug.
Caroline xxxx
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Our dear Caroline, I can feel your hugs and support and have been so grateful for the many that have winged their way to us over the months. Thank you. Things are now out of my hands but I am hopeful that Leaf will be near at hand before too long. Our doctor, Sabathier, will still look after him in Saint Joseph’s so that will be very good. A splendid man! Lots of love from us both ever. xxxx
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My husband Peter and I are thinking of you at this very distressing time for you – and Leaf. Hopefully, your memories of happier days with each other will sustain you in the future. We have been following your posts, and admire your courage – it must be heartbreaking to see the one you love disappearing from you. Our best wishes to you.
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Thank you for your support, Anne. It is very tough and I will need time to adjust to living alone. I will be delving into the memorabilia of happy days with Leaf when I can cope with it. My best wishes back to you.
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Dear Sue
I have now read your so sad blog twice and all your friends wonderful comments and still I can’t seem to find the words I want to help you and dear Leaf .
How lovely those photos are of you both . What a special life you have had together .
I really hope Leaf will be in better care soon . We are all here for you and can help you through this as much as possible
Big big hugs xx
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Hi Gail, yes, everyone is being very kind and generous. Leaf is well-loved. Our life together was pretty blissful until these last three years which have become harder and harder. But now I do feel a certain relief he will be in safe care and I can get myself back on track. Thank you, as always, for your support and love. Big hugs back. xx
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Oh Sue, I have been quietly following the Odyssey of you two here and am shocked at the suddenness of the last turn. But so sad that it had to inevitalbly come to this. Hard to find the right words of comfort to you. But now you will at least have some much needed time for yourself. I must say your last of the photos above really is a wonderful shot of Leaf. A bit special. All I can really do now is wish you strength and wish that Leaf can be happy in his World. All the best, I will be thinking of you both. Steve
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Hello Steve, I have been shocked too, but I guess he reached a sort of plateau then toppled off. Yes, I desperately need to get my life and the house in order and get some sleep. That isn’t so easy.
This last week has been strange, as you will see from tomorrow’s blog. Emotionally I’ve been bucketed up and down at an alarming rate.
Thanks for your support and I agree, that is one of my favourite pics of Leaf. Love and peace x Sue
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Dear Sue,
What can I say, except I feel greatly for you. I was pleased to read in your latest blog that Leaf is no longer strapped to the bed, I can imagine how alarming that must have been for you. Unfortunately in hospitals it happens sometimes because there are not enough staff and they are ill equiped to cope with patients who really need specialist care. When Ryan was in hospital with liver failure, before he had the transplant and was deteriorating fast, he had an older guy arrive in the bed next to him one day. He was strapped to the bed and was pleading with us to untie him. It was horrible to see him like that and we felt bad we couldn’t help him. The nurses explained, as they fed him, that the liver failure had affected his brain, something they were checking Ryan for daily. Later that day he managed to wriggle out of the restraints, rip his clothes off and started wandering the corridors naked… It was very alarming for Ryan, especially being only 23. Not only did he have the concern of having a man next to him who had lost his mind and was unpredictable, but he was presented with an example of the reality of what could happen to him… . I had to insist they move him into another room. Thankfully, whilst Ryan did get the early stages of encephalopathy just a week or so later, he never deteriorated to that extent before a liver became available.
Life is so hard sometimes and you have had more than your fair share of difficulties and it really is no wonder you reached this point. I’m glad you’ve got such an understanding Doctor who managed to arrange this temporary solution, but it’s heartbreaking you’ve had to go through this. Thank you for sharing your journey… I know how cathartic it is to share as I’ve been there, and I also know that even if no-one can physically help you, it is comforting to know they are thinking of you. Sending lots of loving thoughts and strength your way. You will get through this Sue, but be kind to yourself and give yourself time to grieve the loss of the life you had together. You are an inspiration xxx
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Dear Nikki – you of anyone can understand the stress of caring. You were amazing from what I can understand. I didn’t follow your bulletins because I don’t go onto F/B often these days. I may post the odd thing or two, usually to no avail, I might add. I do hope Ryan is doing well, I’m sorry I’m not up-to-date. I can well imagine his reaction to having to share with a demented person. It can be scary.
You’re right, it is extremely comforting to know that others are thinking of us. Dementia is a lonely business and we need all the social support we can get. And we are very lucky. Take care, sending love and positive energies back. xxx
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