Hello,
My name is Chris
I am 58 years old.
I’m Self employed, still having a property rental business,
which sadly, my wife Jayne has to manage on her own these days.
I also used to own and manage a custom motorcycle shop,
I have ridden to bike shows and events all over the UK and Europe with my wife and my friends.
I have 5 children and two grandchildren.
You now,….. know more about me than anyone ever did,
or asked, during, and after,
my initial diagnosis and following care.
My diagnosis is mixed dementia,
Vascular and Alzheimer’s disease.
I am also living with emphysema and arthritis,
Two more illnesses you can’t always see.
my wife tells me I’m just greedy,
but this does show that you should never make assumptions about anyone without getting to know them a bit better.
We need to see the person first and the illness second.
I am still me!
I was Firstly diagnosed nearly seven years ago with vascular dementia, and a few months later with Alzheimer’s as well.
In all, It took 13months of appointments, of testing, but I didn’t mind.
I wanted a correct diagnosis and a reason for the behaviour and problems I was experiencing.
I was starting to get lost when driving my car,
my memory was not as good as it was, and I have always had a good memory,
and word finding was starting to become quite difficult.
And I was becoming quite scatty and angry!
I didn’t notice at the time, but sorting money, loose change, was becoming problematic.
But I compensated by paying with paper money, instead.
It’s as problems like these mount up that starts to concern you.
We thought at the time that it was all down to my emphysema ,
Lack of oxygen to the brain, that would explain it.
so during a routine visit regarding my lung condition
we mentioned some of the problems I was experiencing.
My doctor said “no, that’s nothing to do with your emphysema “
and the testing started!
As I said, It took 13 long, months,
But I didn’t mind how long they took, because, by now, we knew what they were looking for.
And I wanted a correct diagnosis, not a rushed one.
During this time we noticed that my driving wasn’t so good,
I was looking down to see where my feet were supposed to be,
I kept forgetting where the controls were, everything was becoming a chore, it was hard work!
I thought we lived in a world where nobody was courteous,
all were in such a hurry and I just couldn’t keep up,
everyone was constantly beeping their horns at each other.
It turned out most were actually beeping at me!
So I decided to give up my licence.
It was a very difficult decision!
But this actually empowered me a little,
Instead of going for a driving assessment, and being told that I’d failed at something else, It felt easier to hand it in, instead of
them asking for it.
them asking for it.
it was my own decision, and it felt good,
and I still remember that feeling I had to this day.
We were relieved when first diagnosed,
As I now had a label for my behaviour and problems.
I wasn’t going mad, and it wasn’t a brain tumour, which we initially thought might be the cause.
but that aside, we were completely lost and felt so alone,
I was too young to be looked after in our memory clinic because I was under 65,
and my assigned CPN (community psychiatric nurse) was away on holiday !
So We arrived home that day, very quiet and very sad.
And very alone.
And I was diagnosed very early, because I thought it was something else.
A diagnosis does not mean we are all at end stage when diagnosed,
there is a beginning and a middle before the end stages of any illness.
And It doesn’t mean we have to sit back and just try and exist without any quality of, or purpose in our lives anymore,
I know this now, ….but knew nothing then.
People need to be reminded of this.
The diagnostic process needs to be designed more efficient,
it needs to be patient and family friendly
(for those who have a family),
and everything available needs to be utilised, to make sure that my diagnosis is a correct diagnosis.
it needs to be supportive, informative, and more positive.
Because the delivery of that diagnosis can disable and disempower far earlier than the disease itself.
But before, the diagnosis is finally given,
there is a length of time, when the person and their family has nothing,
no information, no support, no offer of counselling, and both your lives goes on hold.
Daily life has already changed for the person and for those around them,
This is what actually leads to the start of seeking help and then on to the diagnostic process.
This limbo can last for a very long time,
this is when the initial damage to ones quality of life is mostly felt, and, impacted.
Jobs can be lost,
marriages broken,
A time of arguments and anger,
Fear, guilt and loss,
mortgages not being paid,
food not being put on the table, literally in some cases,
serious debts can be incurred,
children and siblings affected may have problems in work and in school,
which in turn, can have detrimental effects on ‘their’ daily living and on others around them.
Combine all that with an eventual diagnosis that is usually very negative,
Which looks, sounds, and feels like a death sentence,
Mainly because of the stigma and the misconceptions that the general public hear about.
is it any wonder people contemplate ending their lives?
I looked into ending my life, again out of ignorance,
I looked at going to Dignitas,
But I couldn’t get the 6 month prognosis that is needed
and more importantly, it can be very expensive.
An expense that not many may be able to afford,
Especially when ending your own life may leave your family destitute because it may invalidate your life insurance.
The diagnosis experience was and is , very negative,
I was given my ‘welcome pack’ ,
It was full of irrelevant generic information,
that gave us even more worry and fear.
I was advised about what I can’t do,
What I won’t be able to do and,……
about what I will never do.
I was advised, quite rightly, to get my affairs in order,
Make a will, sort my power of attorney and,
At that point, I felt I had no value anymore, no worth,
At that point, I felt I had no value anymore, no worth,
I was just a burden.
We were all filled with so much negativity.
How a delivery of a life changing illness is given can be as disempowering as the diagnosis itself.
This really needs to change, and needs to be one of the first changes that must be made.
We must get this bit right, then after their diagnosis, people can be given permission,
and have more incentive, to carry on living their lives just as they did before the diagnosis.
But with adaptions, with different skills.
But we, can’t do this alone.
We don’t know what to ask for
We don’t know what services can help
We don’t know what we need until it is too late.
We don’t know what is out there, until during, or after, a crisis.
We had no clue about services, support or respite,
For me, for my family and more importantly, for my wife, Jayne.
There should be ‘Stage appropriate’ support, not age appropriate,
and flexible tailored services that should be correctly signposted and offered.
plus, with a little ‘risk’ thrown in for good measure.
A guide needs to be designed and developed, with the help of people affected by dementia and the professionals,
containing a pathway of Care and relevant information from pre-, during, and for the future after diagnosis.
Because there is a future.
It should be offered to not just the person, but the whole family,
Also Including, the very professionals and services that will be involved in my care, in my support and in my enablement,
All of those involved too need to know what should be offered and provided,
and more importantly, when, how and by whom.
But!……How can you ask for something you don’t know about it?
This should Include relevant training and courses,
Courses relevant to any of the professionals involved in this too,
And not just relevant, but also current information,
All the knowledge needed for all the levels required for my care team,
We all need to know, what we don’t know,
and with this much needed extra knowledge,
will come a better, more confident family carer and, better self management for those who are diagnosed.
Dealing with a life changing diagnosis is so difficult,
It’s life changing –
But not just for the person, but also for those around them.
It really does, or should, become a team effort.
You really do have to change your life and adapt to a completely new one and then start living this new life.
At first it is easier not to talk about your diagnosis,
Plus with the stigma and misconceptions,
added with our own lack of understanding, might also keep you quiet, very quiet!
An awful lot of people feel ashamed and embarrassed.
Out of ignorance, so was I, so was my wife, my family and friends.
We didn’t have any idea of what to do after our diagnosis,
we were embarrassed and, sadly ashamed,
We had no understanding of this dementia which had became a dark hole in our lives, which then led to fear.
I wasn’t just living with dementia,
I was also living with guilt.
Guilt about how my diagnosis was going to affect my wife and my children,
I felt I had let them down.
Guilty about ruining any future plans we had made,
And very guilty about not being the family’s patriarch,
No longer being the pillar they could lean on and not being the fixer, the one that always fixed everything.
That’s also when depression started to share my life.
Uninvited and unwanted, this new addition to my feelings just made me feel more hopeless and more alone.
Uninvited and unwanted, this new addition to my feelings just made me feel more hopeless and more alone.
The conversation we had about my diagnosis,
it’s effects, progression, and future needs,
was the best thing we ever did.
Not realising what a welcome ally having that conversation, that honesty, would be to all of us.
It’s the old saying, ‘sharing is caring’
and if you want, or need, support and understanding,
then there has to be this honest sharing of questions,
and fears.
This needs more promotion and facilitation, pre and post diagnosis.
That’s exactly what we decided to do,
We got our family together to discuss my diagnosis together, we even decided to post it on Facebook so we could educate others
as well as letting my friends know a bit more about dementia and our circumstances.
Plus it was cheaper and quicker than using the phone!
We decided to have a last family holiday together, again, still making decisions based on our ignorance,
But guess what?
When We got home I realised I was still me !
Yes I had problems and still no answers!
but I was still the same person.
Still Chris!
But it wasn’t all about me,
It was very difficult for those close to me, including my children.
No counselling was ever mentioned or offered, for any of us.
We were all grieving after my diagnosis,
and I wasn’t even dead yet.
my dementia will affect my family much more than myself,
I consider myself to be the lucky one in our diagnosis
Because I will eventually forget, if I live that long,
I will lose capacity and I will,
no longer understand the world in which I live,
my family, and those around me,
will never have that luxury.
We all need to know, what we don’t know,
Ignorance promotes fear
Fear then promotes stigma
One needs to understand one’s illness
And only then you can embrace it
and with this much needed extra knowledge,
will come a better, more confident family carer and also better self management for those who are diagnosed earlier.
This understanding empowers and gives back some of the confidence, self worth and value that gets lost.
it would reduce much of the depression and isolation that comes as a result of ignorance and misunderstanding around
dementia,
if you can understand your illness better,
Along with it’s problems and it’s deficits,
then you are more able to embrace it and live with it.
Then you can find your own strategies to adapt,
Then you manage your cognitive challenges better.
Then you can live alongside your dementia!
In our instance, we knew nothing and were told nothing,
So Jayne started doing everything for me,
even the things I could still manage to do.
I was, out of love and caring,
being disabled,
even further.
What I really needed was enabling,
not disabling,
We, the family, all needed support!
The more we do for the person with dementia,
The less they will be able to do themselves,
the sooner I become unable to do the things,
the sooner you are taking over doing everything.
the sooner you are taking over doing everything.
We were husband and wife.
We had now became patient and carer.
My 14 year old youngest daughter was to become my babysitter.
This felt and was,… so very wrong.
Information, support and education is the key to a patient and family friendly diagnosis
‘Stage appropriate’, flexible, and tailored services should be correctly signposted,
a guide needs to be produced and developed containing a pathway of Care and relevant information for pre diagnosis, after
diagnosis and for my future,
And again, It should be offered to all those involved in my diagnosis,
And again, Including the services around me,
Because we all need to know what we might not know,
and more importantly, again,
when, how, and, from whom.
We now, over time, have all the information we all so
needed back then,
It gave me a new life, We all had a new life,
Knowledge really is so very powerful.
We realised that I wasn’t finished and redundant,
that I still had value after all !
We can see the positives and live again!
I say we, because with me, you get another for free,
Jayne, who is now, not just my wife,
but also my PA, logistics manager, travel agent, and chauffeur.
By the very nature of living with dementia,
I couldn’t manage to do any of what I’ve done since being diagnosed, but, I’m lucky, I have a Jayne,
not everyone does, some have nothing and no one!
Jayne has become my enabler.
she is also my “cognitive bridge”
My link to a more normal life.
she is there to ‘look out’ for me,
just, as I, used to look out for her, and still do after she’s had a wine!
We look for solutions when I have a problem,
We have made our kitchen very dementia friendly,
We removed the cupboard doors,
I can immediately see I’m in kitchen and more importantly, where everything lives.
This not only saves time, but also lessens my stress and anxiety because I used to open every door to find what I needed!
The environment matters a lot to me, it can help or hinder!
colours, marked steps, hand rails, easy to operate taps,
Taps are a major problem and stress, for all of I think.
I struggled with opening our kettle, so making the coffee stopped,
We looked for the solution and bought a kettle with a simple push button lid.
Much to Jayne’s appreciation, it worked, I now make the coffee again.
So it’s about adapting your life to do very much as you did before for as long as you are able.
In the last couple of years we have travelled all over the world, speaking, taking part in research and advocating.
All this has given me focus, purpose, a sense of worth, and value.
This has been my way of adapting to live with my dementia.
Getting out and about,
learning about my condition,
meeting others, peer support is so valuable.
And not being constrained by an employer,
I’ve even been holding people to account,
From grass roots level,
Right up to government and ministerial level!
Adding, too, Building up, and belonging to a network of like-minded people,
real people, not just virtual friends!
Making real changes
And that has helped me and more importantly,
Helped my family.
Helped my family.
They have seen that dad isn’t just sitting in a chair waiting to die from an illness that may not even kill me!
My emphysema is more likely to do that!
We have picked ourselves up, supported each other,
and become a team again.
We decided that we are not going to be a patient and a carer,
Jayne says she’s not very good at that, and, neither am I !
we have decided we are once again, going to do what we have always done best!
Being a husband and wife.
A much better fit for us and more comfortable too.
So, Where am I now in my dementia,
I can’t multi task,
I can’t write ( but I can type when the letters are in front of me) I struggle to cross roads, I can’t always distinguish which way the
traffic is going,
I struggle with balance and sometimes have to walk with a stick or a walker,
I struggle with reasoning and fact,
Every task is difficult and takes a lot of energy and thinking to manage.
My eye sight is not always as it should be, I can sometimes struggle to focus and the world becomes very blurred.
And I get mixed up with dreams and reality, fact and fiction, at the moment I have to trust what my wife says, but it is getting more
difficult to trust her!
but…………….
I am still here and still living with dementia!
Im still trying to focus on what I can do and,
I’m still enjoying life………Most of the time.
I do suffer and so does my family, but…..
We aren’t ready to be labelled ‘dementia sufferers’
It’s a struggle but achievable, up to now
My name is Chris, I have 5 children, 2 grandchildren,
and I am still………. me.
I’m still Chris!
I am living with dementia,
not dying from it.
And so is my family !
And so is my very patient wife!
I may have dementia but it doesn’t have me…yet !
Thanks and Regards,
Chris Roberts.
Hello,
My name is Chris
I am 58 years old.
I’m Self employed, still having a property rental business,
which sadly, my wife Jayne has to manage on her own these days.
I also used to own and manage a custom motorcycle shop,
I have ridden to bike shows and events all over the UK and Europe with my wife and my friends.
I have 5 children and two grandchildren.
You now,….. know more about me than anyone ever did,
or asked, during, and after,
my initial diagnosis and following care.
My diagnosis is mixed dementia,
Vascular and Alzheimer’s disease.
I am also living with emphysema and arthritis,
Two more illnesses you can’t always see.
my wife tells me I’m just greedy,
but this does show that you should never make assumptions about anyone without getting to know them a bit better.
We need to see the person first and the illness second.
I am still me!
I was Firstly diagnosed nearly seven years ago with vascular dementia, and a few months later with Alzheimer’s as well.
In all, It took 13months of appointments, of testing, but I didn’t mind.
I wanted a correct diagnosis and a reason for the behaviour and problems I was experiencing.
I was starting to get lost when driving my car,
my memory was not as good as it was, and I have always had a good memory,
and word finding was starting to become quite difficult.
And I was becoming quite scatty and angry!
I didn’t notice at the time, but sorting money, loose change, was becoming problematic.
But I compensated by paying with paper money, instead.
It’s as problems like these mount up that starts to concern you.
We thought at the time that it was all down to my emphysema ,
Lack of oxygen to the brain, that would explain it.
so during a routine visit regarding my lung condition
we mentioned some of the problems I was experiencing.
My doctor said “no, that’s nothing to do with your emphysema “
and the testing started!
As I said, It took 13 long, months,
But I didn’t mind how long they took, because, by now, we knew what they were looking for.
And I wanted a correct diagnosis, not a rushed one.
During this time we noticed that my driving wasn’t so good,
I was looking down to see where my feet were supposed to be,
I kept forgetting where the controls were, everything was becoming a chore, it was hard work!
I thought we lived in a world where nobody was courteous,
all were in such a hurry and I just couldn’t keep up,
everyone was constantly beeping their horns at each other.
It turned out most were actually beeping at me!
So I decided to give up my licence.
It was a very difficult decision!
But this actually empowered me a little,
Instead of going for a driving assessment, and being told that I’d failed at something else, It felt easier to hand it in, instead of
them asking for it.
them asking for it.
it was my own decision, and it felt good,
and I still remember that feeling I had to this day.
We were relieved when first diagnosed,
As I now had a label for my behaviour and problems.
I wasn’t going mad, and it wasn’t a brain tumour, which we initially thought might be the cause.
but that aside, we were completely lost and felt so alone,
I was too young to be looked after in our memory clinic because I was under 65,
and my assigned CPN (community psychiatric nurse) was away on holiday !
So We arrived home that day, very quiet and very sad.
And very alone.
And I was diagnosed very early, because I thought it was something else.
A diagnosis does not mean we are all at end stage when diagnosed,
there is a beginning and a middle before the end stages of any illness.
And It doesn’t mean we have to sit back and just try and exist without any quality of, or purpose in our lives anymore,
I know this now, ….but knew nothing then.
People need to be reminded of this.
The diagnostic process needs to be designed more efficient,
it needs to be patient and family friendly
(for those who have a family),
and everything available needs to be utilised, to make sure that my diagnosis is a correct diagnosis.
it needs to be supportive, informative, and more positive.
Because the delivery of that diagnosis can disable and disempower far earlier than the disease itself.
But before, the diagnosis is finally given,
there is a length of time, when the person and their family has nothing,
no information, no support, no offer of counselling, and both your lives goes on hold.
Daily life has already changed for the person and for those around them,
This is what actually leads to the start of seeking help and then on to the diagnostic process.
This limbo can last for a very long time,
this is when the initial damage to ones quality of life is mostly felt, and, impacted.
Jobs can be lost,
marriages broken,
A time of arguments and anger,
Fear, guilt and loss,
mortgages not being paid,
food not being put on the table, literally in some cases,
serious debts can be incurred,
children and siblings affected may have problems in work and in school,
which in turn, can have detrimental effects on ‘their’ daily living and on others around them.
Combine all that with an eventual diagnosis that is usually very negative,
Which looks, sounds, and feels like a death sentence,
Mainly because of the stigma and the misconceptions that the general public hear about.
is it any wonder people contemplate ending their lives?
I looked into ending my life, again out of ignorance,
I looked at going to Dignitas,
But I couldn’t get the 6 month prognosis that is needed
and more importantly, it can be very expensive.
An expense that not many may be able to afford,
Especially when ending your own life may leave your family destitute because it may invalidate your life insurance.
The diagnosis experience was and is , very negative,
I was given my ‘welcome pack’ ,
It was full of irrelevant generic information,
that gave us even more worry and fear.
I was advised about what I can’t do,
What I won’t be able to do and,……
about what I will never do.
I was advised, quite rightly, to get my affairs in order,
Make a will, sort my power of attorney and,
At that point, I felt I had no value anymore, no worth,
At that point, I felt I had no value anymore, no worth,
I was just a burden.
We were all filled with so much negativity.
How a delivery of a life changing illness is given can be as disempowering as the diagnosis itself.
This really needs to change, and needs to be one of the first changes that must be made.
We must get this bit right, then after their diagnosis, people can be given permission,
and have more incentive, to carry on living their lives just as they did before the diagnosis.
But with adaptions, with different skills.
But we, can’t do this alone.
We don’t know what to ask for
We don’t know what services can help
We don’t know what we need until it is too late.
We don’t know what is out there, until during, or after, a crisis.
We had no clue about services, support or respite,
For me, for my family and more importantly, for my wife, Jayne.
There should be ‘Stage appropriate’ support, not age appropriate,
and flexible tailored services that should be correctly signposted and offered.
plus, with a little ‘risk’ thrown in for good measure.
A guide needs to be designed and developed, with the help of people affected by dementia and the professionals,
containing a pathway of Care and relevant information from pre-, during, and for the future after diagnosis.
Because there is a future.
It should be offered to not just the person, but the whole family,
Also Including, the very professionals and services that will be involved in my care, in my support and in my enablement,
All of those involved too need to know what should be offered and provided,
and more importantly, when, how and by whom.
But!……How can you ask for something you don’t know about it?
This should Include relevant training and courses,
Courses relevant to any of the professionals involved in this too,
And not just relevant, but also current information,
All the knowledge needed for all the levels required for my care team,
We all need to know, what we don’t know,
and with this much needed extra knowledge,
will come a better, more confident family carer and, better self management for those who are diagnosed.
Dealing with a life changing diagnosis is so difficult,
It’s life changing –
But not just for the person, but also for those around them.
It really does, or should, become a team effort.
You really do have to change your life and adapt to a completely new one and then start living this new life.
At first it is easier not to talk about your diagnosis,
Plus with the stigma and misconceptions,
added with our own lack of understanding, might also keep you quiet, very quiet!
An awful lot of people feel ashamed and embarrassed.
Out of ignorance, so was I, so was my wife, my family and friends.
We didn’t have any idea of what to do after our diagnosis,
we were embarrassed and, sadly ashamed,
We had no understanding of this dementia which had became a dark hole in our lives, which then led to fear.
I wasn’t just living with dementia,
I was also living with guilt.
Guilt about how my diagnosis was going to affect my wife and my children,
I felt I had let them down.
Guilty about ruining any future plans we had made,
And very guilty about not being the family’s patriarch,
No longer being the pillar they could lean on and not being the fixer, the one that always fixed everything.
That’s also when depression started to share my life.
Uninvited and unwanted, this new addition to my feelings just made me feel more hopeless and more alone.
Uninvited and unwanted, this new addition to my feelings just made me feel more hopeless and more alone.
The conversation we had about my diagnosis,
it’s effects, progression, and future needs,
was the best thing we ever did.
Not realising what a welcome ally having that conversation, that honesty, would be to all of us.
It’s the old saying, ‘sharing is caring’
and if you want, or need, support and understanding,
then there has to be this honest sharing of questions,
and fears.
This needs more promotion and facilitation, pre and post diagnosis.
That’s exactly what we decided to do,
We got our family together to discuss my diagnosis together, we even decided to post it on Facebook so we could educate others
as well as letting my friends know a bit more about dementia and our circumstances.
Plus it was cheaper and quicker than using the phone!
We decided to have a last family holiday together, again, still making decisions based on our ignorance,
But guess what?
When We got home I realised I was still me !
Yes I had problems and still no answers!
but I was still the same person.
Still Chris!
But it wasn’t all about me,
It was very difficult for those close to me, including my children.
No counselling was ever mentioned or offered, for any of us.
We were all grieving after my diagnosis,
and I wasn’t even dead yet.
my dementia will affect my family much more than myself,
I consider myself to be the lucky one in our diagnosis
Because I will eventually forget, if I live that long,
I will lose capacity and I will,
no longer understand the world in which I live,
my family, and those around me,
will never have that luxury.
We all need to know, what we don’t know,
Ignorance promotes fear
Fear then promotes stigma
One needs to understand one’s illness
And only then you can embrace it
and with this much needed extra knowledge,
will come a better, more confident family carer and also better self management for those who are diagnosed earlier.
This understanding empowers and gives back some of the confidence, self worth and value that gets lost.
it would reduce much of the depression and isolation that comes as a result of ignorance and misunderstanding around
dementia,
if you can understand your illness better,
Along with it’s problems and it’s deficits,
then you are more able to embrace it and live with it.
Then you can find your own strategies to adapt,
Then you manage your cognitive challenges better.
Then you can live alongside your dementia!
In our instance, we knew nothing and were told nothing,
So Jayne started doing everything for me,
even the things I could still manage to do.
I was, out of love and caring,
being disabled,
even further.
What I really needed was enabling,
not disabling,
We, the family, all needed support!
The more we do for the person with dementia,
The less they will be able to do themselves,
the sooner I become unable to do the things,
the sooner you are taking over doing everything.
the sooner you are taking over doing everything.
We were husband and wife.
We had now became patient and carer.
My 14 year old youngest daughter was to become my babysitter.
This felt and was,… so very wrong.
Information, support and education is the key to a patient and family friendly diagnosis
‘Stage appropriate’, flexible, and tailored services should be correctly signposted,
a guide needs to be produced and developed containing a pathway of Care and relevant information for pre diagnosis, after
diagnosis and for my future,
And again, It should be offered to all those involved in my diagnosis,
And again, Including the services around me,
Because we all need to know what we might not know,
and more importantly, again,
when, how, and, from whom.
We now, over time, have all the information we all so
needed back then,
It gave me a new life, We all had a new life,
Knowledge really is so very powerful.
We realised that I wasn’t finished and redundant,
that I still had value after all !
We can see the positives and live again!
I say we, because with me, you get another for free,
Jayne, who is now, not just my wife,
but also my PA, logistics manager, travel agent, and chauffeur.
By the very nature of living with dementia,
I couldn’t manage to do any of what I’ve done since being diagnosed, but, I’m lucky, I have a Jayne,
not everyone does, some have nothing and no one!
Jayne has become my enabler.
she is also my “cognitive bridge”
My link to a more normal life.
she is there to ‘look out’ for me,
just, as I, used to look out for her, and still do after she’s had a wine!
We look for solutions when I have a problem,
We have made our kitchen very dementia friendly,
We removed the cupboard doors,
I can immediately see I’m in kitchen and more importantly, where everything lives.
This not only saves time, but also lessens my stress and anxiety because I used to open every door to find what I needed!
The environment matters a lot to me, it can help or hinder!
colours, marked steps, hand rails, easy to operate taps,
Taps are a major problem and stress, for all of I think.
I struggled with opening our kettle, so making the coffee stopped,
We looked for the solution and bought a kettle with a simple push button lid.
Much to Jayne’s appreciation, it worked, I now make the coffee again.
So it’s about adapting your life to do very much as you did before for as long as you are able.
In the last couple of years we have travelled all over the world, speaking, taking part in research and advocating.
All this has given me focus, purpose, a sense of worth, and value.
This has been my way of adapting to live with my dementia.
Getting out and about,
learning about my condition,
meeting others, peer support is so valuable.
And not being constrained by an employer,
I’ve even been holding people to account,
From grass roots level,
Right up to government and ministerial level!
Adding, too, Building up, and belonging to a network of like-minded people,
real people, not just virtual friends!
Making real changes
And that has helped me and more importantly,
Helped my family.
Helped my family.
They have seen that dad isn’t just sitting in a chair waiting to die from an illness that may not even kill me!
My emphysema is more likely to do that!
We have picked ourselves up, supported each other,
and become a team again.
We decided that we are not going to be a patient and a carer,
Jayne says she’s not very good at that, and, neither am I !
we have decided we are once again, going to do what we have always done best!
Being a husband and wife.
A much better fit for us and more comfortable too.
So, Where am I now in my dementia,
I can’t multi task,
I can’t write ( but I can type when the letters are in front of me) I struggle to cross roads, I can’t always distinguish which way the
traffic is going,
I struggle with balance and sometimes have to walk with a stick or a walker,
I struggle with reasoning and fact,
Every task is difficult and takes a lot of energy and thinking to manage.
My eye sight is not always as it should be, I can sometimes struggle to focus and the world becomes very blurred.
And I get mixed up with dreams and reality, fact and fiction, at the moment I have to trust what my wife says, but it is getting more
difficult to trust her!
but…………….
I am still here and still living with dementia!
Im still trying to focus on what I can do and,
I’m still enjoying life………Most of the time.
I do suffer and so does my family, but…..
We aren’t ready to be labelled ‘dementia sufferers’
It’s a struggle but achievable, up to now
My name is Chris, I have 5 children, 2 grandchildren,
and I am still………. me.
I’m still Chris!
I am living with dementia,
not dying from it.
And so is my family !
And so is my very patient wife!
I may have dementia but it doesn’t have me…yet !
Thanks and Regards,
Chris Roberts.
Twitter : @mason4233
Alzheimer’s Society UK/Cymru (Wales) Ambassador.
Vice Chair, European Working Group of People With Dementia, Alzheimer Europe (EWGPWD).
3Nations Dementia Working Group, England, N.Ireland and Wales, Co-Founder & Member (3NDWG).
Honorary Fellow of Bangor University.
MSc in Dementia Studies.
Honorary Lecturer in Dementia Studies, School of Healthcare Sciences, Bangor University.
Salzburg Global Fellow, International Seminar 587.