I miss my Parents

As I mentioned earlier this week, I turned 40!! Wow I can’t believe it!

As I’ve gone through the first week of this milestone I have thought of my parents

Mum and Dad way back in the 70's

and I really wish that they were able to celebrate it with me, give me a hug and pat me on the back and say well done Madeline.

Unfortunately, this is not to be.

My dad who was a really very funny man who loved his wife and his children and showed it died in 1979 when I was ten, I have spend the vast majority of my life without him, but the impression he left on me for the first 10 years of my life is enormously positive and powerful.

My mum as, I have said here before, has Alzheimer’s disease is in the third and final stage of the disease and doesn’t know me any more. It’s like she is not really here as the woman I knew as my mum and the woman left behind are two very different people.

I miss my parents and they had a loving relationship and would hold hands and hug each other showing their love to each other as well as others. I miss being able to go and get my own hugs and kisses and love. It’s difficult to be without that kind of support and even though I get it in other ways it is just no the same.

To those of you who have lost parents to death or terminal illness and miss them, I just want you to know that hear your pain because I miss my parents too!

Alzheimer’s… an update

It’s been quite some time since I spoke about Alzheimer’ s, to be honest it’s a very painful subject and watching my mum deteriorate is really very difficult. I have questions that many people wouldn’t understand but those who has seen anyone suffer from a chronic disease might recognise them, so here they go.

1. When will it end?   I suppose this question is really when will mum die? No one ones the answer but it’s my most prevailing question. It’s horrible to see my mum the way she is, for me she is not who I knew her to be, so when does the facade end, so that the current grieving for a mother who is no longer with us can start for a mother who is no longer with us.
2. What does it mean that she’s put on weight? Does it mean that she is getting better? I know that it doesn’t but I kind of expect her to waste away and then when she doesn’t what does that really mean. The cruelty of the disease it seems knows no bounds, teasing us with psuedo hope, yet there is no cure.
3. Why did this have to happen? This is my meaning of life question where I suppose I shout at God for a while and then collapse in a heap and say “Thy will be done”. I know there is much to learn on this journey but it is painful all the same.
4. Is there anything we can do to make her better? I know that some swear by glyco-nutrients as reducing the effects of the disease, but there really is a feeling of hopelessness about it all. That it is inevitable that she will die and we are just waiting for the day.
5. Does she know me? This is the one all about visits, when you wonder if she knew that you were there. Last time I visited she said my name and I felt great, I don’t think it was because she recognised me but to be honest you can never be sure.

I have lots of questions, Alzheimer’s has a way of making you question when you see the demise of your parent to it’s clutches. I’ve sought outside help in being able to offload the stress of it all and it has been brilliant for me in managing the pain and hurt more effectively. Alzheimer’s really is a carers disease it hurts everyone involved and it’s overwhelming. I’ve learned that it is alright to say that it hurts and that it’s OK to cry unashamedly for as long as I want to, grieving the loss of the mother I knew and the arrival of this other person.

I love my mum and will forever have her in my heart. She is wheelchair bound, she speaks in riddles much of which is gibberish, she is hunched over quite often, her head held down and her eyes not quite fully open. She holds on to whatever she can and if she has your hand she’s not letting go. But she’s my mum still even if her character seems to be lost behind those eyes.

Auguste Deter (1850-1906) the first woman to be diagnosed with Alzheimers Disease

I wish that it could be taken more seriously this disease that takes our parents before their time leaving a shell of the person who was behind. I wish that sexy campaigns could be devised to raise millions to fund the much necessary research. I wish that the NHS and government would acknowledge the millions of carers who keep the costs of the disease at a minimum. I wish that those who made the decision about not giving the disease preventing drugs to those in the early stages of Alzheimers could really understand why its necessary to have the drug so early in the life of the disease. Lastly, I wish I could have my real mum back… but sadly that it not to be.

That’s my Alzheimer’s update.  If you’re experiencing it through your parent or grandparent, I hope it helps to know that you are not alone.

Alzheimer’s: Terry Pratchett has hit the nail on the head

Thank you Terry Pratchett!!!

This week Terry Pratchett revealed to the world that as an Alzheimer’s sufferer he’s donatin $1,000,000 to research a cure for the disease. At 59 is is considered rare as he is one of the 15,000 people in the UK to contract the before the age of 65. Over 700,000 suffer Alzheimer’s in the UK and it is a disease that destroys not only the sufferer but the also the family.

Terry is raising the issue that Alzheimer’s lacks the “heroic, glamour of cancer” and that the funding for a cure for the disease is a measly 3% of the amount of research funding that cancer received. That works out as £11.00 per year as opposed to £289.00 per year. That stinks. Now lets get this straight, in no way is he decrying or belittling cancer, he’s simply stating what those of us who have a family member know, Alzheimer’s does not get equal treatment, media attention, priority or any thing else.

Can you image the drug that delays the onset of Alzheimer’s, Aricept, is not available to early sufferers? Sorry? How on earth does that make sense? Surely those who are in the early stages of the disease need it to reduce the effects of the disease and reduce the costs on the health service… or is that just common sense?

I’ve read some of the comments made about what Terry has said and to be honest many people seem to be missing the point. Terry on the other hand for me has hit the nail on the head. This disease like many others needs much more attention. We cannot continue to ignore the elderly, who have given so much to this country, and leave them suffering with this debilitating disease that takes away their dignity and their precious memories. The stigma around the disease needs to be removed and more attention and consideration given to a cure.

Here are some of stats:

There are 700,000 people with dementia in the UK. This will rise to over 1 million people by 2025 and 1.7 million by 2051.

There are 575,000 people with dementia in England. The condition affects more than 56,000 people in Scotland, 16,000 in Northern Ireland and more than 36,000 people in Wales.

One person in every 14, aged over 65, in the UK has dementia. This rises to one in six people over 80. One in three older people will end their lives with a form of dementia

More than 60 per cent of all care home residents, aged over 65, have a form of dementia.

More than 15,000 people under 65 have dementia in the UK.

Dementia affects 11,000 people from black and minority ethnic groups in the UK.

More than 24 million people have dementia today with the numbers affected doubling every 20 years to more than 80 million by 2040.

Another 4.6 million people will develop dementia around the world this year.

It’s frightening and this disease is no respecter of persons we need a cure.

The Silent Shadow: Alzheimers

Everyday my silent shadow is with me,

it reminds me of the sadness that is deep within my heart that just wont go away

it reminds me of the possibilities of my future… the ones I don’t hope for.

My silent shadow reminds me of the days gone by,

when we had laughter and order and the independent woman taking care of us

so strong, beguiling, beautiful and like superwoman able to cope with just about anything.

My silent shadow makes me want to cry at the mention of her name,

yet it also brings a smile.

It’s here now it brings pain, peace, laughter and sorrow all in one.

Coping with Alzheimer’s

I’m not quite sure if I am overtired fromn the events that I havemanaged in the last few days or what, I know that I am not my mum’s full time carer and don’t see her as regularly as I would like to, but to day coping with the knowledge of my mums Alzheimers has really got to me.

It’s one of those things that you just can’t quite get over, maybe you’re not supposed to, cope is most definitely the right word. Knowing that your parent is no longer the person you knew them to be, witty, intelligent, strong, resourcesful, funny, caring and so much more is sooo hard to come to terms with. The knowlege is something that is always there like your shadow, ever present. It’s difficult because you never know when a wave of sadness will hit you. I’m always using my mums sayings or using words that she used, at times I’m her “mini me” but sometimes, the pain of her demise really cuts like a knife and it’s hard not to cry.

Alzheimer’s really hurts. We can talk about coping and finding the positive and all of that , which is true… but the core of the matter is that this destructive disease is a painful experience for all concerned.

Alzheimer’s stinks

You know I must say it, Alzheimer’s stinks, it’s very cruel disease robbing those who suffer from it precious memory’s, reason and much more. It hurts so bad for us as relatives, too much for discussion at times. But what of the sufferer, who floats in and out of lucidity? How much harder must it be for them.

This is one disease that needs a cure and quick, and a honest cure too not just some pharmaceutical company getting rich of the back of suffers. It needs a cure that looks at all aspects of life; spiritual, physical, dietary, mental, medicinal and any other “ual” that fits that bill. Alzheimer’s stinks and that is exactly how I feel about it right now!!!

If you can the donate to the Alzheimer’s Society today. Thank you.

Malcolm & Barbara… loves farewell

This morning all I can do is sit here and celebrate the ITV documentary about a man’s demise due to Alzheimer’s. My mum has Alzheimers and is in the final stages of the disease. I have wondered recently how it would end and now I know watching Malcolms living death was harrowing, more so because I know exactly what it’s like. I can truly understand Barbara’s feelings and what struck me was the things that Malcolm did that my mum has done.

Did I cry, yes, just about all the way through it and at the end uncontrollably. Part way through my husband said that he was depressed and it was depressing. But this morning I am glad that the spotlight was placed on Alzheimers and that it has been in the news. I am glad because I don’t feel that it is taken seriously and I whole heartedly agree with Barbara’s comment that the NHS is saved billions of pounds a year because relatives feel duty bound to care for their loved ones.

If I didn’t have my faith I don’t know how I would cope and when my mum was at home, I didn’t live there, but two of my sisters did. Alzheimers from the distance I was at was and is a nightmare, I can only imagine what my sisters have been through.

Thank you Paul Watson and now the people really know what happens behind closed doors. Can you imagine, people crossed the street and some friends dropped off. What a world. Thank you Barbara for sharing with us so completely. Thank you.

It’s not sexy is it?

Alzheimer’s!!
“Not sexy is it!!” I had a conversation with my friend this evening, I haven’t spoken to her for a while but she has a special place in my heart. So what did she tell me, her Grandmother died a week on Saturday ago.

My friends Grandmother died suffering from Alzheimer’s. It’s a terrible disease and I know the pain that she is going through, my mother suffers from Alzheimer’s and is in the third and final stages of the disease. To be honest my heart is breaking daily and I find it very hard to cope with.

We spoke about the fact that Alzheimer’s doesn’t get recognised like other diseases such as Cancer, it doesn’t get the kudos or focus that it deserves. Whilst many are trying their best to raise it’s profile the Alzheimers Society is still not really in the forefront of the diseases that it’s cool to sponsor. Don’t get me wrong every cause has it’s place and sufferers deserve the best care possible, but I can’t help but feel that a disease that affects so many of our elderly and maybe one day me, get’s so little notice. If you can support the Alzheimers Society no it’s not sexy but it makes a real difference.

Watching your strong independent mother, who dressed well, could entertain the best of us, could cook for six children and her husband as well as friends and relatives and not bat an eyelid and who was still able to find time to skip with her daughters, loose her memory and some functionality and descend into a world that is confused and distressing is beyond heart breaking. No it’s not sexy, but the Alzheimers Society sure is necessary.