Frankly, the last thing I felt like was writing a blog post. I’m not in good shape. I don’t mean physically, I mean mentally and emotionally. What is there to say?
I feel overwhelmed, overtired and overburdened by my role as a carer to Leaf’s AD. I’m on a treadmill and I can’t get off. I have to find ways of coping and, being the kind of person I am, I have to find them quickly or crack. So here I am unburdening, well sort of.
TRAPPED
When Leaf was diagnosed with Alzheimer’s, I went into overdrive, researching like mad, reading every book I could lay my hands on and watching every video and docuseries I could find online. I was determined and that’s reflected in my early blogs. We weren’t going to go the way the disease wanted us to, we would fight to the death. Had I known what that fight would involve, I would probably have said ‘I’m not going there, I can’t’ and ‘Leaf could never be like that’. Well, I’m there and he can.
ST. CRISPIN’S ASYLUM
In the not so distant past, say a century or so ago, AD and the other forms of brain disease that have since been identified, tended to come under one heading – mad or demented. The person would be shut away somewhere, either in their own home, locked in a room probably, or in a mental institute or asylum. And there they would stay until they died. Quite horrible but, I realise now, understandable. There were no alternatives at the time and the diseases weren’t understood anyway.
I’m not saying I want to shut Leaf away, far from it, but there is only so much craziness I can take, so where do I go from here?
REACHING THE LIMITS
I’ve applied for extra help and that. hopefully, will be agreed. We qualify because we’re low income but, although that’s good in many ways, I’d far rather have the money to do whatever I feel is necessary to ease the burden.
In France, unlike the UK, families living in rural areas are rarely far apart from each other. There are lots of them, so help is nearly always at hand and, by the way, it’s an obligation under law, for children, at least, to take care of their aging and/or ailing parents. Try that one in the UK!!! If you have no children, then other family members will step in. If there are none, the State takes over.
FAMILY TEAM SPIRIT
Next week, I’m expecting a visit from one of the Social Services ladies. They’re kind, understanding and on our side. Fantastic. We don’t have to jump through lots of undermining and demoralising hoops to get help. The necessary paperwork is all that’s needed. So this meeting will, with luck, move things along.
When I feel as low as I do at the moment, I think of myself as mean, ungrateful and lacking in empathy. It simply isn’t me, but then I haven’t had to deal before with the daily obstacles that arise. First husband, Terry, was difficult in some ways, but not nearly as demanding as Leaf.
Why mean? Because I’m not being as kind as I should be. Ungrateful? Because I know there are thousands of others in exactly the same dilemma, but that doesn’t help. Lacking in empathy? Because I can’t put myself in Leaf’s place. I simply can’t imagine what it must feel like to be him, no more than he can understand how it is for me. Impasse.
HOW MUST IT BE FOR HIM?
Aside from the obvious memory loss – words, history, requests from seconds ago and so on, there are other manifestations of Leaf’s AD that are absolutely infuriating. Wandering around the house, looking in drawers and cupboards, moving things from their normal homes to unsuitable places, going in my handbag, raiding the larder, disappearing when dinner’s ready or we’re about to go out and painting on any available surface is one of the latest. God knows where that might end up! He can be really stubborn when I’m trying to help him dress or wash and often refuses to undress to go to bed. He follows me around too, getting in the way and if required to wait – in the car, at someone’s house, or for food for example – he can get stroppy and impatient.
I’ve come to the conclusion that all this checking and moving stuff is about reassuring himself about our house and possessions and establishing some remaining autonomy. If that’s the case, and it does make some sense, it’s understandable but still deeply annoying. I’m now at the stage of locking doors, hiding things (then forgetting where of course!!) and am still disconnecting most of the lights and appliances at night. As for stubbornness, that seems to be frustration and waiting may be because he can no longer tell the time and has no idea of its passing.
NO IDEA OF TIME
Another problem that comes with this disease is loss of confidence and identity. I presume these are the reasons why he’s so anxious to show people his paintings the minute they walk in the door, to inform them he’s written two books and climbed mountains on five continents etc. In fairness, it’s a character trait I noticed early on in our relationship but is now exaggerated. A deep-seated lack of self-worth maybe.
We all know people who feel the need to impress us. They regail us with info about their achievements and the adventures they’ve had. I guess a psychologist would trace it back to their childhoods when they received little praise and encouragement and so sought it from others. My mother had a favourite saying (actually one of many!) ‘Don’t blow your own trumpet, dear.’ I would add another ‘If people are interested in us, they will ask about our lives.’ Mostly they don’t! Have you noticed how many are so busy telling us about themselves, that we realise, afterwards, that we hardly said a word and that we could have been a cut-out for all the interest they showed in us. They give themselves away immediately – insecurity comes in many guises. How insecure people with dementia must feel, on all sorts of levels. The trouble is, their behaviour can push us away rather than keep us comfortably by their side, holding their hand.
INSECURITY IN ALL ITS DREADFUL FORMS
Funny, I seem to be showing empathy! And I must be grateful that I’m not an insecure person. Thanks to my parents. No, not insecure but very unsteady and worried about cracking up one day. I know I must take each one as it comes and not think about the future any more than I have to. It’s not easy.
Before I go I will say that no amount of platitudes can help those of us who feel as I do. Being a hands-on carer is an ongoing nightmare which has to be lived through. Thank God for music and our chill-out cabin. I am off there now. Phew!
doodahtwo.home.blog 
Hi Sue
Just come in from doing a bit of gardening and read this !
As always you are totally honest and frank so I get a really good picture in my head of how life is for you and Leaf at the moment .
If only it was easy for us to help you fix this situation but of course it isn’t .
But is there anything any of us can do to give you more support ?
Please let me know .
Try and be kind to yourself
You are certainly not mean , ungrateful , nor lacking in empathy . You are doing the best job you can possibly do in a situation you can’t change and of course it’s totally frustrating for you to say the least .
My heart goes out to you
Love and hugs xx
.
LikeLiked by 2 people
Hello Sue
What a very sad blog. You really do sound low. The day to day care of Leaf must be so draining, especially when you know that his condition will not improve.
Will he, eventually got into a care home? My father did as my mother could not manage him. By the time he did my father was mostly unaware that he was no longer at home. It sounds cruel to be asking this question but you have a life to lead too and your health is important.
We’re very much looking forward to Leaf’s art exhibition.
Lots of love xxx
LikeLiked by 1 person
It is sad Adrienne, it’s how I feel. Leaf is a huge loss to me.
I’m hoping to get a live-in carer and it may have to be sooner rather than later. As to a care home, I will avoid it if at all possible but I can’t, of course, be definitive. Who knows what the future will bring. At least we have the exhibition in three weeks. I’m praying it will be a success as I know it would life his spirits enormously, and mine too. Lots of love back, xxx
LikeLiked by 1 person
Hi Gail, Thank you for your supportive comment. I thought I had responded but it seems to have disappeared – lost like me!
I think the most positive way you and others can respond is to understand and make allowances. Many will because they have experienced dementia in their family, but those who have so far been lucky enough not to, will be inclined to steer clear. It’s a sad fact that modern man, in the West anyway, has lost a real sense of community. WW11 was probably the last time people really pulled together. Love and hugs back. xx
LikeLiked by 1 person
I echo Gail’s sentiments naturally. It is easy to feel you are doing a thankless task in fact when the one you care for appears to be so demanding and unthinking. But you have to remind yourself they are not the person you first knew anymore and it is impossible to know what they are thinking or why they might be acting in a certain way. When I asked my mother what she was thinking she would say “nothing” or “all sorts of things”. She did relate very well with the animals and interact with them as I saw Leaf doing in your garden the other day with the cat. It was also very moving to see Monty looking at him adoringly. Keep strong and lets hope the extra support comes through. You know where I am too. liz xx
LikeLiked by 1 person
Hi Liz, You understand as always. Leaf is not longer the man I fell in love with and spent the happiest years of my life with, fifteen of them. I miss him a lot.
He definitely tunes into Pepe the cat who’s favourite. He loves Monty and takes him for short walks in the morning but isn’t as close to him as I am. Nonetheless, the animals are wonderful members of our little family xxx
LikeLiked by 2 people
Dearest Sue
I am very fortunate as I have never had a family member with dementia. My heart goes out to you both but especially you Sue. Everything said above is so true and you are an amazing lady who deserves all the support you can get. You will be no good to yourself (foremost) or leaf if you try to deal with the situation alone. You both have supported so many others over the years that now is the time to call in favours.
You are a strong lady but its normal to have a breaking point, do not be cross with yourself, be kind and know that you are doing your very best and far more than some would be capable of doing.
Please keep using this Blog to let us know how things are going. I have everything crossed that you get the live in help and it will give you back some ‘me’ time.
Big hugs and lots of love
LikeLiked by 1 person
Dear Caroline, Thank you for your loving comment and confidence in me!! That helps a lot.
As for DOODAH, apart from posting what I hope is useful information for others either going through what I am or who are keen to know how to protect themselves (as far as possible), it’s a way of letting friends and family know how we’re coping.
After Terry had his accident, back in 1987, the phone never stopped ringing. People very kindly were anxious to know how he was getting on. It was quite exhausting going through the news time and time again, so I recorded a message daily on the answer machine and that put the word out. Now I have DOODAH with the ability to say so much more. I know there are those who would baulk at the idea of making their feelings public, but how else are we to connect? Perhaps I could call it a Detox – all the rage these days! Lots of love and hugs back. xxxxx
LikeLike
I read this with some degree of sadness Sue, but glad you can communicate so well. You are just saying what anyone would feel , even if I haven’t experienced it first hand I am only too well aware of the strain it must put on you. There isn’t much anyone can say to make your every day life better. If some help is on its way soon that will be a relief.
LikeLike
We must communicate, Jenny. We all need each other and although there may not seem much anyone can say to make life easier, just to know there are good positive thoughts coming our way is hugely strengthening. X-ing fingers for that extra help.
LikeLike
Hello Sue.
The thing that has struck me in your blog this time is that ALL that you have to endure, you must do while grieving the man you loved. I dont believe anyone, unless they have lived it , can possibly imagine just how awful and lonely it must to be to be forced , (by love) to take on the role of carer and watch the cruelty of ad unfold. My heart too, like so many others hurts for you and all I can do is say is that I’m sorry this has happened to you and Leaf. You dont deserve it! Noone does. Vent anytime! I’ll see you soon. Hugs xxxxxx
LikeLike
Thank you Gin, you understand the two sides to my feelings, as do others who have been near to AD or even cared for a loved one. Of course it is different caring for a parent to caring for a partner. At times I find myself thoroughly numb. But there are good moments and I cling to those. Will be in touch v. soon. Lots of love and hugs to you. xxx
LikeLike
Hi Sue,
Live in the moment, it’s the only place that really exists. Ask yourself, Am I suffering at this moment? and if the answer is no, feel the sense of relief and satisfaction wash over you.
You might suffer in the future, we all will, but it’s this moment that counts.
Love, John
LikeLike
Hello John, In my view, the most persuasive explanation that I’ve come across to date (time!) is that Time is a human construct to help us function in today’s world. I see the past/present/future all going on together.
If we think of human-construct Time , the future never comes as such, but there are always new todays.
I know how to enjoy life and make the smallest things joyful but there are some clouds that hang around and we have to remember that the sun is shining above them. Love to you both – hope all goes well up there. Sue xx
LikeLike
Hi Sue. Long time since I replied to you.
I too am going through similar things with Don. He wanders, follows me, now picks things up, won’t stay still for more than a few minutes (seconds sometimes).
I get very frustrated and then cry because I feel I’m being horrible and not sympathetic enough. I am definitely struggling at the moment. We live in Spain, as you know, and the family are still in the UK. Thank God I do have some help to relieve a few hours a week, but care from social services is very limited, though we are registered with them.
He can no longer walk safely so is in a wheelchair, That brings other problems, though I have the lightest one I could find. We can’t go out if the weather is too cold, he just doesn’t stay warm, and as for rain, he’d drown if I was in the UK. Thank goodness for our weather here.
You’re right it’s the loneliness that hurts most, as the person you loved has gone. We have been married nearly 55 years so I am lucky that I’ve had him that long.
So, not sure what the future holds, just have to keep going.
Reading your Blogs does help me though.
love Margaret
LikeLike
Oh dear Margaret, my heart goes out to you. We both know so well how awful it can be and it’s important to express how we feel. Writing is, for me, a huge release and I sense that it helps you too.
It’s good that the weather there, despite the freak storms etc. is far better than the UK and here even, at the moment Leaf feels the cold dreadfully. We’re having a pellet burner put in (today in fact – when they arrive!!) because we couldn’t manage the wood-burning stove any morning and other forms of heating are too costly. Leaf can still walk, thank goodness, and gets out several times a day, often with Monty the dog. He doesn’t go far, fearing to get lost – he’s very aware of his limitations. I remember the business of having to deal with a wheelchair as well – Terry, first husband, was in a wheelchair for some time after his accident. I was young then, in my 40’s, so manoeuvring it wasn’t too bad. Now, with a dodgy back, it would be another matter, so I’m hoping Leaf will stay on his feet for a while longer.
I mustn’t go on, so will close now sending you lots of positive energy and love. We must keep going. x
LikeLike