A friend is always sending me articles about dementia. There was an article in the New York Times earlier this week.
The title was Unusual Ways of Treating Dementia.
I find things like this so frustrating. It was talking about a facility in the Netherlands with 210 patients of which 90 were being given this special care.....a drop in the bucket.
Clearly the facility has excellent palliative care for people dying of dementia. But the headline is misleading. This is not about “treatment” or “fighting the disease”. We still do not have treatments that restore people enough to function with independence. A less stressed and peaceful environment is of course a very good thing. But staring at pictures of nature on my ceiling does not seem much of a life and is not a treatment but rather comfort care.
I get upset when people send me this stuff.
I told my husband family years ago to quit sending me stuff about cures and care....they stopped.
Angry at the NYT as the writer does not know the difference between fighting the disease and managing the disease. Ignorance is everywhere.
Upset that my friend does not realize that after 16 years I am doing whatever I can to relieve the stress and anxiety in my hubby's life . This information is not new to me.
Oh, well once again it is about acceptance. People do what they want or can to make themselves feel better. She thinks it is helpful, and caring but it is annoying. I guess I should tell her.
Being helpful to me requires action. I have a young expatriate woman friend who is alone here in Basel. She is having a minor operation next week and will have a day surgery. But she will have a long weekend at home to recover. So, I am making her some frozen prepared meals to give her. Yesterday, I made braized meatballs, Delia Smith recipe I love, today I will make enchiladas (i prepared the sauce yesterday so one step in the process completed) and tomorrow, I will make a chicken spinach savory bread pudding. Her dad died two years ago of cancer and her mom died last month after about 7 years of dementia.
This afternoon I will practice guitar and sing with a friend. And dinner out at friends house tonight with hubby.
Just have to keep on keeping on.....find those moments of joy and pleasure. Move off anger.
It would be wrong to dismiss much which has been set down about dementia and ways by means to alleviate its varied traits in the act of caring. A great deal of 'help' has been borne out of direct experience coupled to the ways in which this disease attacks and inhabits the brain itself. I have read so much about the brain and dementia and various papers and research texts, so as to feel almost an authority - which I am most certainly not! But I agree profoundly with your sentiments. The 'reality' of caring for a loved one with dementia
is the story, from the very first chapter until the end. In that story comes such a varied and unexpected series of outcomes, often hurtful, often obscure and often deeply affecting. We can apply some of the accepted 'rules' in much the same way as we do in everyday life. Politeness, kindness, common good manners and respect, because without these we are lost. But what goes way beyond these is the ability to sustain a way of life which is constantly challenged at each moment, by the very nature of a disease, termed dementia, which throws at you an unremitting pattern of opposition, manifest in obscure and often aggressive behaviour, confusion, perhaps physical violence, only to transform into calm, lethargy, and maybe, just maybe, that precious lucid moment when all seems to be well in the world. No book, no research paper can portray the reality of dementia care. They can explain the neurology, they can tell you which part of the brain is being compromised, damaged. They can like a doctor with his patient, explain why there is this pain or that rash or why an atrophied brain creates the physical outcome it does and why the hippocampus might be the first call in diagnosing a 'memory loss' and the study of a scan will focus on a possible causation and so on and so forth. All of this matters, is credible and important. But we, as carers, don't have any truck with any of that. We sit across from our loved one, the person we have known for perhaps a very long time indeed,and we are witness to a profound change in that person. A change which is a life-sentence for that person, an indirect life-sentence for a carer, spouse or partner. A change which embraces every single breathing moment of your life, even whilst you sleep, because it is there, somewhere deep down inside your own very brain, the way in which this change has also changed your life. And when things are bad, as they can be, they are truly bad. Unlike a broken leg, or even a general disease, which can be understood and borne as best one can, dementia is none of these things. It is a mystery, an antagonist, devoid of your feelings, a manipulator of the one you love, making them behave in a way alien to you and to them. It claims the life of the one you love for its own and there is nothing you can do about it. Other than call upon the one thing that it is not - love. And that love, which is not the love of pleasure, but another love which goes beyond all self, will touch the one you love as surely as the glimmer of daybreak will come day after day, over a horizon which will always be there. That is a truism. And time and time again, when you see one hand take hold of another, for comfort, there is humanity in progress and despite dementia, that 'comfort' is real and cannot be denied by dementia.
And so, yes, we do not really look to the outside world for things we are actually living , tears and all. When a cure comes about,, we will rejoice and rejoice all the more vocally, because we have 'been there' and survived - just.