It’s been a crazy week, a week of medics, revelations and decisions. But first, what has Leaf been up to?
Well, apart from calling me nasty names and generally assassinating my character, he’s hidden more stuff – must I clear the house? Another two doors have to be locked at night. He gets up before me, having gone to bed earlier, and a couple of mornings ago, I emerged to discover he’d emptied half the contents of the fridge and distributed them around the kitchen, having demolished most of a jar of pickles.
Yesterday he plastered vegan spread all over a greetings card and across the work surface. He was on the point to digging into a jam pot when I managed to stop him with the distracting idea of a cup of tea.
This morning I woke up when he stamped half-naked below the belt (no trousers, one sock, odd shoes and four layers on the top half, plus his precious hat) through the bedroom carrying two dirty doormats from the conservatory – one of which was suspiciously wet and smelly. When I asked him to throw them into the garden, saying I would deal with them later, he refused. He wouldn’t give them to me and charged out of the room. I followed, barefoot and in my nightie, through the house and out of the back door pleading with him. It was no good, so I gave up and returned to bed praying he wouldn’t deposit them on the dining table. Eventually, having calmed down with a short spell of reading, I got up and went to look for him. Luckily, he’d left the mats outside and had clearly forgotten all about them.
Only this afternoon, he stuck pieces of cake on an early painting of two apples – luckily not an important work! As for the catalogue of his recent paintings, he keeps pulling it apart, so I’ve given up on that one and put it out of sight in the hope he won’t go looking for it.
This evening, he emptied a load of dried flowers and grasses out of the jug onto the floor, dismantled a chair and brought another into the bedroom from the conservatory.
Isn’t this enough? Yes, his craziness seems to be bordering on madness. And to accompany his antics, he mumbles under his breath, when I ask what he’s saying, he either can’t remember or comes out with total gobbledegook, usually involving something mathematical! The names of objects escape him more often than not, so I just mumble back, agreeing or … ? By the by, when I had my ears tested recently, a significant discrepancy between one side and t’other was found, so I have to try out an aid – how jolly! Maybe, with that, Leaf’s mumbles will become coherent, though I doubt it.
Apart from all this, what about the practical side of life over this last week? A rash of RDVs – garage, echography, social services visit, hospital bi-annual check up and, yesterday, a session with our medecin traitant, (family doctor). The upshots – yet another car repair sorted, Leaf’s prostate check achieved, paperwork list for winter fuel aid collected, revealing sessions with the gerontologue (doc for geriatrics!) out of the way for another six months, and a bag of medicaments and advice under my belt. Does any of this help move the situation forward? Well, yes, although I realise I’m chasing my tail trying to get all the elements up to date or moving in the right direction – the pieces of the jigsaw in the right places.
Leaf’s prostate problem is exacerbated by his AD. It’s not a very serious one at the moment but he does need to take pills for it. The doctor gave me a detailed explanation of exactly what’s happening inside. His drawing reminded me of an upturned lightbulb! And, upon request, he prescribed plant-based remedies, which was good. On to the six-monthly check-up.
Prior to seeing the gerontologue, I typed up a list of all the ways AD is affecting Leaf’s behaviour. I say all, but really I should say: a list scraping the surface of the bizarreness that I face on a daily basis. Nonetheless, it gave her a good idea of where he/we are at. I saw her first, then Leaf had a session on his own, mainly testing his memory, after that it was my turn.
I managed to keep my cool and not burst into tears, which I feel was quite an achievement. I told her about my excema flare-up and the difficulty of keeping calm when really provoked. She was completely understanding and told me, very frankly, that I was expecting too much of myself and that if I didn’t do something to alleviate the situation, the stress level could seriously affect my health, primarily my heart! That freaked me. I’ve had high blood pressure from time to time and can feel the effects of over-exertion if I push myself too hard, but I’ve never actually considered my heart might be vulnerable to the mental and emotional bashing that I seem to be experiencing almost every day. Her suggestion? That I take a break as soon as I can and not just one, but regular breaks to help maintain my sanity. Our doctor said exactly the same thing. As I have been investigating temporary short-stays in local retirement homes, I wasn’t taken unawares on that score.
There are four possibilities in our area, but guess what…? CV19 has thrown these establishments into a certain amount of chaos – they are all reacting differently, from almost normal to extreme paranoia. I have realised that I need a letter from the Social Services and/or the doctor to cut through the reserve. I shall be getting onto that this coming week.
When I said I’ve been chasing my tail, it seems that each move I make depends on another move. I have to make an appointment with the assistante sociale and can only see her privately when Sylvie, our auxiliare de vie (carer) is with Leaf, and that’s only for two hours twice a week. So any visits to homes I might organise will also require a ‘Leaf-sitter’.
Meanwhile on the gite front, there are several small organisational hang-ups which I can’t solve on my own. Plus I will need photographs of the place completed to be able to send out to prospective occupants. And, even then, will I find a suitable person? Who knows. It would be brilliant if I can, but in the meantime, I shall just have to cope and organise temporary stays for Leaf somewhere and take the time to calmly organise anything that needs dealing with. If it goes well, and that’s obviously in the lap of the gods, I will increase the number of short stays until either I find the ideal co-carer or it’s time to book him into a permanent place somewhere.
So, after my determination to see it through, not to resort to sending him to live in a retirement home, but to be his primary carer for the rest of his life, it looks likely I will have to admit defeat. I simply can’t carry on living on a knife-edge, trying to find ways to deal with all the extraordinary manifestations of AD. It’s beyond me.
How do I feel about that? Not guilty – yet, but no doubt I will when the time comes. Who wouldn’t? I will do my best not to, but it will be difficult if/when faced with a devastated human being, as he might well be. I can only hope and pray that he will settle into a new life, where I can visit him often.
There are times in life when we have to put all our emotions to one side and be practical. No matter how hard it is.
doodahtwo.home.blog 
Dear Sue, I have to say this to you, even if it hurts you deeply, and you find it offensive. My heart bleeds for you , I think you have to understand now that finally, your own life and well being is being eroded. Its getting to a hopeless, dangerous situation for you. I have seen this situation many times and indeed, discussed it with my partner [Paula] the very things you are going through with a view to my [our] future together and future plans. I was going to suggest some stark decisions for you after reading your last blog but felt it wasnt my place to do that because I did not wish to interfere in your decision making, but after reading this latest one, I feel you are in peril and must take the brave and logical decision and think about a hospice/carehome to put leaf for his own safety and your sanity, you can tell me to fuck off and mind my own business, and you would be right, but I have seen and witnessed these grave moments many times within my work trying to educate carers understand awareness of PLWD. If I can just give you an analogy of what I mean, When I did my training as a day skipper, we had to do a man overboard exercise, when the instructor asked us what would we do if our child fell overboard at sea, we all said immediately dive in and save the child, totally wrong, now those on board have two people to worry about , and those two persons can go under in the panic and confusion of the crew as they drift apart in the tides. This is what you are facing out of love versus desperation and devotional duty, but, what I am saying is, you are losing him slowly but surely, and if you dont take apropriate action, how ever hard that may be, the two of you will go under, that is the reality how ever horrible it sounds. You are the captain of the ship now and have to make the wise choices to save yourself so you can help Leaf within his next stages, Dementia takes no prisoners as we both know.
Please try to be positive , you are not alone, you have friends around you, talk to them, confide, get some advice from dementia hubs, although that may be hard as you are rural and this damned covid doesnt help, the next stages of your life will be hard, very hard, please do the best for yourself and leaf, what ever happens in the future, you will always have your memories…………thoughts are with you, if ever you need a chat, I am in most evenings and am on whatsap as its free…………..my best wishes for you both………………07542999688
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Dear Paul, thank you so very much for sharing your wisdom and your total understanding – after all, as you say, you are/have been in the midst of so much of the horror that AD can bring to carers and families. It’s a disease with many tentacles.
I wasn’t in the least offended by what you had to say, I welcome such constructive and loving input. I am very lucky in that DOODAH has brought much support from a variety of sources and I dearly hope it has helped others too – connecting with dementia from every point of view.
I know full well that the next few weeks, even months, will be extra hard and pray that CV19 doesn’t make things completely impossible.
Please believe that I will hang on in until this horrible business has moved on to the next stage and I will have the time to recover even though the mourning process will continue for some time. We have a whole load of wonderful memories which I cherish. They will never go away.
I would love to have a good chat to you but as Leaf is always around, I can’t. When I’m free to talk, most people have gone to bed!
With much love – sending positive energy to you in your situation. You too are a fighter! Sue xxx
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It’s definitely a matter of head ruling heart. There are so many practical considerations , but you do sound as if you have a plan. I find that a plan stops everything seeming as though it’s insurmountable. A very practical friend of mine gave some very simple advice some years ago, do everything in small bites. A small achievement each day can be so rewarding, especially when you are totally stressed out by events.
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Hi Jenny, thank you so much for your continuing support with all you are having to deal with at the moment. I do hope that is going as well as can be expected.
Yes, I agree about having a plan/s and moving forward in small increments. In fact, I tell myself at the end of the day what I have achieved, even if it’s insignificant stuff. It does help to ward off the stress. Bon courage.
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Oh sue my heart goes out to you both xx I wish there was some way we could help you Don’t feel guilty about anything remember when you get on a plane when they are doing the safety talk they tell you that if anything happens and you need to put on the oxygen masks you have to do yours first before your child’s You need to stay strong so you can help them same case you have to try and however hard put your self first so you can manage and help Nigel xxx remember this isn’t the real Nigel the brain from Spain the funny man the writer the thinker it’s the disease the breaking down of his brain that’s making him how he is remember he loves you xx
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Oh dear Susi, and my heart goes out to you too, very often. I know you are suffering as well.
Yes, I know he is no longer our Leaf, that wonderful man who gave me the happiest years of my life. I now have to accept that he has gone – even though he peeps through from time to time. Yes, I believe he loves me still and most definitely is lost without me, but I have to keep up my strength and that’s diminishing very rapidly. I will go forward with care but must accept that the crazy man, who is dominating, is too much for me to handle and I fear sometimes that he will get violent and that’s not a fear I am prepared to live with for much longer. Thank you as ever for your love. xxxx
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Dear Sue! What a terrible thing AD is! I can only imagine the anguish and pain you have had to deal with! You have done everything in you power to care for Leaf…an extraordinary achievement and if now is the time to accept that you can do no more without serious cost to your own health , then you ARE doing the right thing. You are a courageous and kind woman..and one that I admire enormously! If i can help in any way..please let me know!!!
I will be in touch. Thinking of you . Gin xxxxxxxxx
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Hello Gin, You’re right, it’s absolutely horrible to witness the disintegration of a person’s brain, and if they’re the person you love, it’s even worse.
That little voice inside me has said more than once, ‘Where are you? You should be by my side helping me get through this.’ The one person you would expect to turn to is the very problem.
Thank you for your kind words about my character which has suffered rather a bashing of late!!! It would be lovely to get over to see you v. soon or if you can come here, that would be great. Let me know how you’re fixed at the moment.
Darling Monty has been suffering with is these last few horribly wet days and is also very aware of the atmosphere. He’s been extra clingy and rather naughty too, poor boy. He can’t help it, neither can Leaf. I’d better behave myself!!! Lots of love, xxxx
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Hello Sue,
It’s very sad but as you say in your last paragraph there comes a time when you have to be practical, however hard it is. It’s the only possible action you can take. After all, you can’t look after anybody if you fall ill, or worse. I am not in a position to give advice, not having lived any similar experience, but for what it’s worth my feeling is that you should start looking for the very best residence for Leaf, where you can visit him whenever you feel like it. No guilt will be due, you have done everything in your hands to look after him. I hope this short message helps, and if not just ignore it. I ignore many things at this stage of my life.
Love and peace,
Max
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Dear Max, your message is very welcome and your endorsement of my plans comforting. It’s marvellous that so many friends and family are behind me.
Getting out and about to find a suitable place is difficult for two reasons: organising someone to be with Leaf (I wouldn’t wish it on a person with no experience!) and the restrictions of CV19 are crippling so many efforts to get on with life.
However, I shall soldier on and something will present itself as it always does. My guardian angel is working full out!!! With love and peace back to you xx
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Dearest Sue reading this has bought me to tears. To read how very difficult your lives are and how the man we once knew is not anymore. The respite care is essential now, Leaf if he were able, would say the same. He would not want your health suffering. Of course it will be natural to feel guilt but you are an amazingly strong woman who has had that strength pushed to its limit. Time to be kind to yourself, you will get through this and things will be OK. You are an amazing never forget that. And I love and feel for you both. xxxx
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Our dear Caroline, I too have been welling up at the support I’m receiving – not just in comments but lots of emails as well.
You’re right, Leaf would say I have to look after my health, but he has gone now and although I try to talk to him about things, he simply can’t process what I’m saying. We can’t have a normal conversation and, as I said in the blog, he talks complete indecipherable nonsense. I listen carefully trying to find a thread to hang onto, but simply can’t most of the time. His brain is like spaghetti, twisting and turning and losing its ends!
My task now is to find a good place for him and to keep my strength up in the search. Thank you for all your kind words, not just now but over the last three years of my struggle. Lots of love, xxx
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Oh Sue my heart goes out to you .
What a hard Blog to write this week but as always you tell us how it is and express your feelings so well about the difficult decisions that you are having to make .
Like all your friends I think you are doing the right thing . Of course you must look after your own health and no don’t feel guilty .. Leaf would hate that .
It is very sad to read about his decline but hopefully he is not suffering in the same way as YOU are experiencing all his « craziness «
I hope that the people in the Social Services etc can give you more help and support soon so you can get some
We are here if you need us
Love xx
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Hello Gail, Yes, it was very difficult to actually set down in print how things are and that I must now get moving to change our lives.
The amount of support I am receiving from so many good people is fantastic and takes the sting out of the tail of guilt although I feel it won’t go away. I have always harboured an element of guilt for unkind things I’ve done in the past but I have come to terms with the memory of them. We can’t undo what we’ve done, we can only acknowledge our actions and not thrust them into the deepest part of our subconscious to fester. Best to let them lie along with all the good and happy (and proud) stuff. Phew!
Thank you for being there, let’s do that doggy walk this week. The sun is due to shine on Wed. would that be good for you – afternoon, our morning is busy? xxx
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Hello Sue,
I certainly don’t think you should feel guilty about thinking of permanent, residential care for Leaf. You really cannot go on as you are and sadly I expect Leaf’s “bizarre” behaviour will get worse.
If Leaf was cared for full time you could get your life back in order and then feel stronger and calmer when you visit him. Do you think the time is advancing quickly when he won’t really know where he is and so would be as happy in a home as anywhere?
I do hope you can quickly find some respite care and that that will lead on to permanent care for Leaf and that you will then be able to start building a life of you own. That may sound harsh but that is the reality. Do you have some plans of things you would like to do in the future?
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Hi Adrienne, You’re absolutely right and I am now going ‘full steam ahead’ to arrange a suitable place for him with, I hope, a period of temporary stays to ease him into new circumstances. That would be ideal.
For his part, Leaf, bless him, is absolutely realistic and understands that I won’t be able to copy much longer and that he needs professional care. He also knows what’s likely to be in store for him re. AD. Underneath he’s still a wise and brave man, despite that other character that takes over on a regular basis nowadays.
Plans for the future? Well, to get out and about more, see more of old friends and to put together a couple more books. I have the material, what remains is the practical spadework. Take care and lots of love, xxx
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Oh Sue,
I’m so sad to read this and can only imagine how hard it was to write. Other replies have been so helpful that I can’t really add anything just want you to look after yourself really as your health is just as important.
Wish there was more I could do for you. You are often in my thoughts.
Trisha xx
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Thank you Trisha. It’s great the back-up I’m receiving. Your concern is very much appreciated.
The saddest thing is that this horrible disease is becoming more and more common and I wouldn’t wish it on anyone.
My heart goes out to other carers now and in the future.
With love, xx
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Oh Sue, there’s nothing I can add that others haven’t said already. Just to tell you I’m thinking of you and hope you manage to find somewhere nice for Leaf soon. It’s such a sad situation, but you are doing all you possibly can and more. Sending much love and strength xxx
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Thank you Nikki. I’m really grateful to all those who respond. As you will know, it’s hugely encouraging to think others are right there with us. I hope all is well with you. xxx
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