Posts Tagged ‘Dementia with Lewy bodies’

Over 2 years ago my Dad was diagnosed with vascular dementia and so now, having seen first hand the devastating effect this illness has on both the sufferer, their carer(s) and their family and friends, I decided it was time to try and give something back to those who work with sufferers and carers in Scotland. So a few weeks ago I set up a JustGiving page to try and raise £500 for Alzheimer Scotland.JustGiving - Sponsor me now!

I’m obviously hoping you will support me by visiting my JustGiving page and giving a donation, but even if you’re not able to or don’t want to do so, I’d urge you to keep read this, as I want to give you some more information about dementia and alzheimers.

What Is Dementia?

Dementia is the progressive loss of the powers of the brain. There are many kinds of dementia but the most common is Alzheimer’s disease. Other kinds of dementia include vascular dementia, Lewy body dementia, frontotemporal dementias (including Pick’s disease) and alcohol-related dementias. It is also possible to have more than one type of dementia; for example Alzheimer’s disease and vascular dementia.

What all these diseases have in common is that they damage and kill brain cells, so that the brain cannot work as well as it should.

It is most common in older people but can affect people in their 40s or 50s or even younger.

What Causes Dementia?

At present there is no known cause of dementia. However medical researchers all over the world are working to find causes and develop treatments, and hopefully ultimately a cure.

How Does Dementia Affect People?

How dementia affects each person can vary as it very much depends on the which areas of their brain are most damaged by the disease.

I think the main symptoms which people tend to associate with dementia, is memory loss. Please remember though that everyone forgets things sometimes, and that as we get older we’re all more likely to forget things. When someone has dementia though, what is forgotten and the severity is very different, as they are likely to forget names of their family, not just of strangers. They may burn pans because they have forgotten about them, forget what they have eaten for lunch, or even if they’ve had any lunch. They may ask the same questions over and over again and again not remembering they’ve asked them before.

One of my worst experiences with Dad was the first time he asked me who I was because he didn’t know me. I went home in floods of tears that night and cried for days afterwards every time I thought about it. While I’ve got used to the fact that Dad no longer knows who I am, it still hurts, but most of all it’s sad that this is what he has been reduced to.

Another common symptom of dementia is losing awareness of which day it is or of the time of day. I know Dad never seems to understand whether it’s day or night, regardless of whether it’s light outside or completely dark!

Sufferers can also find themselves getting lost even when in a familiar place. They may fail to recognise people they have known for years and see on a regular basis. Confusion is a common symptom which in turn makes the suffer less able to problem solve or think things through logically. It can make dealing with financial matters difficult and can be dangerous as they are more likely to be taken in by fraudsters.

One of the worse symptoms as far as I’m concerned is, the way my Dad’s personality and his behaviour has changed. He’s much more aggressive and stubborn than he used to be and now often gets annoyed. These are also symptoms of dementia and as I say they are probably the most distressing for us, as it means Dad really isn’t Dad anymore…it’s like somebody else living in his body.

Over a period of time, it is normal for the dementia to affect most functions of the suffer’s brain. Eventually, most people with dementia will probably need help with every simple daily activities, such as dressing, eating and going to the toilet.

My Situation Now

Right from the time of Dad’s diagnosis, Mum has said she would care for Dad at home as long as she possibly could. I’ve witnessed Mum finding things more and more difficult as the months have gone by and Dad’s condition has worsened.

Dad’s now at the stage where he needs help with tasks which we all do without thinking each day, like eating, washing, dressing and going to the toilet. So much so that over the last few weeks, my Mum has made a hard decisions about my Dad’s future, one which I fully support, and that is that he now needs to live in care.

we’ve initiated the process with social work to get Dad into care, so hopefully in the coming weeks we’ll find a suitable place which is able to take him, as I really don’t think Mum can look after him at home any longer. It’s been decided Dad needs to go into a nursing home rather than a care home as he needs more intensive and specific care than can be offered at a care home, so as they say, the hunt is on!

Please pray for my Dad and my Mum in the coming weeks as we try to sort out Dad’s future in a home we are happy with.

Once again, if you are able to, please donate to my JustGiving fundraising page as I try to raise money, as well as awareness, for Alzheimer Scotland, who do a grand job of supporting dementia sufferers and carers all over Scotland.
JustGiving - Sponsor me now!

Imagine a man who…

  • Graduated from university with a first class honours degree.
  • Worked for Rolls Royce.
  • Became a further education lecturer, teaching mathematics and science.
  • Served on his local council as a councillor for many years.
  • Played several musical instruments and was well known in the jazz and big band scene.
  • Composed and arranged music for bands/groups/ensembles/individuals.
  • Avid football fan.

Now imagine another man – This man…

  • Spends most of his time in bed.
  • When up, struggles to stay awake.
  • Is dizzy whenever he stands up.
  • Rarely goes out the house.
  • Doesn’t recognise people or places he knows well.
  • Struggles to remember what he’s been told just a few minutes earlier.
  • Has difficultly distinguishing between reality and fiction. i.e. He’s adamant about some things which we know are not real.
  • Has lost some of the ability to perform everyday tasks.

So who are these men I’ve described? Well both are the same man, and that man is my Dad!

The first man I described was my Dad prior to the onset of vascular dementia, while the second is a current description of him.

Dementia is one of those illnesses which I think unless you’re directly affected by it, will think it’s just a big word for someone who’s forgetful…if only!

Life has been drastically changed in the last year for both my Mum and my Dad, as my Dad’s dementia has quickly progressed to it’s current state. Mum now has help Dad with most things as well as explain the same things over and over again to him.

It’s sad to see someone you know and love deteriorating before your eyes, especially as there is nothing we can do to prevent it. However I think what makes it even harder for my Mum in particular, is the fact that my Dad was obviously a very clever guy, but this illness has now reduced him to someone who doesn’t even recognise family or friends anymore.

I find it hard when with Dad, so I can only imagine how Mum feels coping with him 24/7 – Mind you at least the doctor agreed a couple of weeks ago to try and get her some help, as personally I felt she was taking on too much as I can’t be there with her and Dad all the time.

Dad’s told Mum a number of times in the last few months that he’s not got long to go – Mum was understandably upset by this, as I was when she told me. However the doctor still tells us that other than his dementia, Dad is very well for his age, so maybe it’s just because Dad doesn’t really know what’s happening to him that he’s saying this.

Last Friday was the 25th March, and on Friday, Dad apparently asked Mum what date it was, and when she answered it was the 25th, Dad started wishing himself “Happy Birthday”…There was only one problem with this…Dad’s birthday is the 25th of April not the 25th of March! So very sad.

In closing I’d just like to ask you to pray for my Dad, and also for my Mum as she cares for him as dementia is more than just someone being a bit forgetful, it’s a debilatating illness that affects not only for the sufferer but also their family and friends.

In addition, please pray for all those around the world suffering from, or caring for someone with demenita, it’s a tough life, and one that everyone concerned needs our prayerful support for.