Facing the future with dementia

An online friend has given me some topics to write about, and today I thought I’d try a NaNoWriMo style writing of this one; “How do you feel about what the future holds for you – the future in 1 year, in 2 years and in 5 years?  How does it make you feel? What can you do about it?  Can you change anything?”

After a diagnosis of dementia it is challenging to think about the future too much, as there is always the fear that you will decline one day, and you have no idea when that day might be. Thinking about today, tomorrow and next week is bearable, but the future in 1 year, 2 or 5 years is less palatable. Many of the people I know living with a diagnosis of dementia are living their lives as fully as possible, achieving their own goals, living in their own way. Yet many are not, almost as if the fear and grief has immobilised them in some way. Some believe the symptoms of their dementia mean they are not as capable as they once were, whilst some forge on with very busy lifestyles, finding strategies to work with these disAbilities. Many advocate to improve the lives of people with dementia, or to educate and raise awareness in others about dementia. Each person has the right to live their life the way they want to. No-one is doing anything more wrong, nor more right than another, simply doing their individual best.

Committing to anything too far into the future is sometimes fraught with a nervousness or fear of being able to ‘perform’ when the time comes around, but even without a diagnosis of dementia, life can change in a blink. We could be in a major car accident, or be diagnosed with some other terminal illness which would impede our ability in the future to fulfil a committment. This can happen to anyone. So for me, living life as if there is nothing wrong with me, and finding strategies to accommodate and manage the various disAbilities caused by the changing symptoms of dementia are imperative to my sense of longevity, and my motivation to keep fighting the symptoms of dementia.

Many people with dementia are comfortable relinquishing parts of their lives, allowing others to take things over for them. My husband tried to take over most things from me, but after a lot of struggling with me not wanting to give up the things I had always done, he eventually found ways to support me to find new ways to achieve my goals. Of course there are many things he has had to take over, or where I do require a lot of support (BUB), but this does not mean I should give up my goals and desires to be active in my community, or to want to make change, break down the barriers caused through stigma, ignorance and discrimination. Wanting to do this also does not mean I have deteriorated to the point of being distorted or irrational in my thinking. Well, not yet my dear husband tells me, and he says he will tell me when the time comes!!

As dementia is a terminal illness, of course this means ones life has a more finite ending, but none of us know how quickly we will deteriorate nor when that ending will come. Life is like that for everyone, with or without a diagnosis of dementia. We live until we die, and so I say, we should LIVE as fully as possible every single day. Accepting that dementia is a degenerative brain disease which does change us and will end our lives, is the easy bit; learning to rise above that cold hard fact is the hard bit. Like a person who has sight impairment, or cognitive decline from a stroke, or something like cerebral palsy. it may take me longer to achieve something, or I may need to attack it differently than I used to, but that does not mean I cannot stop achieving the things I still want to do. And if organisations won’t accommodate my disAbilities to allow me to participate, they are breaking the law. It is not me being obsessive or not being willing to accept my disease.

So can I change anything, or is there anything I can do about facing the future with dementia? Who really knows the answer to those questions? It is a different answer for each and every one of us. I can change my attitude about how I face up to the fear and loss and grief, I can work on strategies to overcome or accommodate the symptoms and use positive psychosocial and non pharmacological interventions. I can change my diet and improve my lifestyle. I can address the end of life questions and action all the necessary legal things like wills and medical directives. I recall doing the Living With Memory loss course a couple of years ago, and one persons way of coping was to deny he had dementia at all, even though one day he came in his pyjamas, and was getting lost most days. Denial worked quite well for him, although not quite so well for his loved ones!! I do know it will probably get me in the end, but that’s okay too, we all have to die of something… truly knowing that fact has given me a peace and freedom I had not felt before.

10 thoughts on “Facing the future with dementia

  1. Kate, thank you for a particularly wonderful blog today. With your permission, I will print out and share with our support group for people living with younger onset dementia and their carers. You continue to be an inspiration. Cheers, Kate

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  2. With the posts that you submit it is very hard for me to imagine that you have been diagnosed with dementia. You sound so young though I know now that even young people are developing dementia. I’m not even sure how such a diagnosis is decided. I find myself in a room and wonder what did I come in here for? I drive to and from work and don’t remember all the route but still make it to and from work. I find all of this very disconcerting and wonder if I have dementia. Where does dementia fit in with Alzheimers? We have had two members of my husbands family with Alzheimers and the end was horrific! Research, research, research!!!

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    • If you are worried, talk to your doctor, but it may be as simple as a Vitamin deficiency, or normal ageing memory loss. Being 54 with dementia, it is a challenge and having people doubt the diagnosis is also challenging (although no offense taken, as it happens so often). I’ve had 4 specialists in 2 different states come up with the same diagnosis, following all the neuropsych tests and MRI type brain scans, and so it is important the general public are educated about it, especially younger onset dementia. Yes, research is one of the keys, and early diagnosis so we can make decisions about our own lives, before we become legally incapacitated. Take care.

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  3. Kate – you show such great maturity in your thinking. Congratulations. This should be recommended reading for many people facing similar dilemmas as you (and us).

    You should be very proud of yourself.

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  4. keep your well educated voice and written words going my friend, for from one tiny grain of sand an ocean was created. People without any diseases do not and have not achieved as much as you. You are envied with your capacity to live, laugh & love…

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  5. Hello, your friend asked how do you feel (about what you think your future will be like in 1,2,5,10 years. Everyone wants to know how we feel, it’s what we ask someone who is sick/ill “How are you feeling today?). Usually we answer with a mixtures of feelings, thoughts, and facts. i.e. “I feel okay, My temperature is down, I don’t have as many aches and pains as I did yesterday, and I had some great sex last night.” So, “How do you feel?). Everyone wants to know the condition of our feelings something they can do little to nothing to change one way or the other.

    I think we ask “How do you feel?” instead of “How are you doing today? because it somewhat limits the length of our potential answer. We don’t like to talk about feelings, although our non verbals frequently speak louder than the words we don’t say. I also think dementia causes us to live more and more in our feelings because we lack the ability to self-talk our way out of them. We can be silent for a day, but we can’t go a whole day without feeling. They are always there, we just have to pause for a moment to feel/listen to them. I think feelings listen/respond better to other’s feelings than their words. We can try to talk out someone elses feelings but empathasizing with the feeling is far more effective in terms of building trust and feeling like someone knows and empathsizes what what is going on inside us – our feelings.

    We can shut down/ignore what someone is saying, een if the converstion is taking place between our ears, but we can seldom talk ourselves out of a feeling. Maybe we can decrease it’s intensity, but mostly we have to wait it out. The reason we have to wait it out is that feelings come with/produce an actual physical response within our bodies. This or that juice is squirted into our blood when we are feeling really good, really bad, having god or bad sex, etc. It takes the body a while to get rid of these juices (which have produced other physical changes in our body) and the changes they cause within us, i.e. tight muscles, faster heart rate, sweating, etc.

    So it is very hard to tell someone how we will feel. We can tell them what we think we will feel, but since thinking and feeling are related by distinct processes it’s just not very useful to speak of future feelings.

    At least this is what I think,of course you will have to think and feel about this as you deem necessary.

    Richard

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