In All These Things...

NICE U-Turn

2010-10-07T01:50:00.000-07:00

"Three drugs to treat Alzheimer's disease are currently restricted by the drugs rationing body, the National Institute of Health and Clinical Excellence (NICE) to sufferers with moderate to severe symptoms. It has meant patients' symptoms had to get worse before they could receive them.

A major campaign was launched against the 'cruel' NICE guidance and now, three years on, NICE has reversed its ruling and is set to extend their use to those with mild symptoms.

The drugs cost around £2.80 per patient per day, slowing down progression of the condition, and meaning patients can continue to recognise their loved or remain independent in their own homes for longer.

There are almost half a million people with Alzheimer's disease, of which only one in ten is currently receiving medication."

The 'A' Word

2010-04-19T13:30:00.000-07:00

The 'A' word. She said it finally, choking back tears and hugging me. 'Please pray for me', she said, 'the nurse has told me I've got Alzheimer's'. I tried not to sound too surprised but was lost what to say. 'It's OK, we're all here for you... and God is with you'. 'I know', she said, and she touched my face. She's been touching my face since the illness. I like it. But her eyes betrayed that she wasn't really that sure at all. She is filled with insecurity, fear, regrets. 'I so want to see S grow up,' she said. 'You will', I said, 'just take every day as it comes and make the most of it, none of us know what the future holds.'

God is making us strong. After my last post I was resigned to the fact that Mum would never tell me. I mean I was really resigned. It was OK. But now God has let me hear her say the words, and we have connected. She hugged me before she left and I saw in her eyes a love that doesn't want to burden me, a helplessness that can't speak, more and more regrets. But it's the love that matters. I am thankful. Thankful that although suffering is inevitable and maybe long, we have time. Time to say 'I love you'. Time to laugh. Time to be together. Time to appreciate every moment is a gift from our loving Heavenly Father, the One who holds us in His hands and where we are safe.

Moving On

2010-03-22T02:55:00.000-07:00

Mother's Day has come and gone and it was a good one. I have been struggling since last August with the situation that Mum doesn't want me to know about her Alzheimer's. She still wants to keep it secret. The thought of her becoming so ill that I can't talk to her about her illness has been difficult. But on Sunday I realised that in a way this doesn't matter.

As we talked alone in the kitchen Mum was high spirited and told me all about the 'medication' she was on for 'her memory'. She wanted to tell me all about her symptoms and how amazing the doctors had been. She explained all about the MRI scan she had had (quite some time ago now) and then she said how lucky she was to receive such wonderful treatment. The only thing she doesn't want to say is 'I have Alzheimers'.

And then she hugged me and wouldn't let go. She said, "it's such a terrible thing to forget your own childrens' names, please forgive me when I forget yours". I could barely compose myself and wanted to say, 'It's OK Mum, I know you've got Alzheimer's', but I didn't. It dawned on me that it didn't actually matter. She is talking to me about her life, her illness. She is living and loving. The 'A' word is irrelevant. I realised that my desparation to talk to her about all the details is more about me and less about needing to help her. I am content now to let Mum become what she will become, as long as I can stay with her, hug her and love her.

Alzheimer's Speaks

2010-02-19T06:19:00.000-08:00

Aricept, Money & Love

2010-02-04T01:28:00.000-08:00

After the BBC report yesterday the media was a buzz with reports and discussion. Listening to local radio I was moved by so many people ringing in with stories, either of their loved ones with Dementia or indeed sharing experiences themselves about their own disease. It seems that this is a huge and growing problem in our society. Much has been mentioned about the cost to our governments. Fortunately, Mum has been prescribed Aricept which is one of the better drugs for Alzheimer's. Apparently Mum's doctor had to be a little forceful with the specialist to get her on it, which indicates some of the financial pressures the disease bears on the NHS. We still yet have to see if this is helping Mum, but the last time I visited she seemed very upbeat and like her old self, going through all her novels and showing me her favourite authors.

One call on a phone-in programme last night that really struck me was from a man who had cared for his mother for 15 years before she died. "There's one word which has not been mentioned, he said, "love". Despite the cost, we care for our loved ones because of love. That's what it comes down to. And in the end that is all that matters.

Reduce Risk by 20%

2010-02-03T14:21:00.000-08:00

You cannot alter your age or the genes you are born with, but there are lifestyle changes you can adopt which may reduce your chance of developing dementia by as much as 20%.

So it seems that doing crosswords is not really going to delay the onset of Alzheimer's. This BBC report advises taking lots of exercise and a good diet full of fruit and vegetables. Seems like that's the answer to everything.

Turning Point

2009-11-21T03:44:00.000-08:00

Today I think Mum has turned a corner in accepting her condition. She has told her pastor herself that she has Alzheimer's. This must have been difficult to actually voice, but I know it was a huge relief for Dad. This is wonderful now that she can receive solid prayer support and help from the church.

Dad says that she has begun taking medication although I'm not sure exactly what it is. So things move on, and I am still earnestly praying that she will eventually bring herself to talk about it with the rest of the family. Sometimes I feel angry with her, that she still wants to keep it from us, but it must be so hard for her to come to terms with herself, and the time will come when we can be open, I am sure.

Memory Bridge

2009-10-30T09:52:00.000-07:00

Video clips to bring hope.

There is hope. But I see that to keep connected with Mum is going to take hard work.

Lumbar Puncture

2009-10-05T02:42:00.000-07:00

Mum has now been through the procedure of a lumbar puncture. Again, both Mum & Dad seem a little unsure as to what this is for and I make my own guesses. Do the doctors actually tell them anything? When will the NHS sit them down and explain very slowly what is going on? My own assumption is that the spinal fluid will show how the disease has already progressed.

Mum is still unaware that I know, although I think that my siblings do now know. My contact with them is very intermittent so I am not sure. The speed of this disease seems to encourage no urgency. However, the average figures of 3-20 years that I have often read keep spinning around my mind. The lumbar puncture results will apparently take up to 2 months, when I presume that Mum will finally receive some medication.

I asked her about the procedure and she was very defensive. I wonder what she thinks that I am thinking. Does she not realise that I must be thinking about that dreaded A word? Dad says that even now he thinks that she forgets that she has got it. Maybe that mixture of forgetfulness and denial is not a bad thing.

The Truth

2009-08-29T13:13:00.000-07:00

Yesterday I enjoyed lunch with my parents and then we went out for a walk and a tea shop. I am always amazed at how upbeat my father is, even in difficult circumstances. Not that the circumstances are very difficult at the moment. Bad memory lapses, slight confusion and a general withdrawing are the main symptoms I see in Mum.

We took a walk in the local park and I was aware of her again walking a few feet behind us, not talking. However hard I tried to bring her in, she kept lagging behind into her own private world. We sat in the local tea shop and she seemed brighter, captivated by a little blond blue-eyed toddler running around. And then she excused herself and I had the chance to quickly ask Dad some questions. 'When the doctor gave you the diagnosis, did he give you any material to read or refer you to some support?'. 'No', was the answer. I was shocked. As Dad talks I wonder how much he realises how serious this is. I think he does, but there is something sobering about reading in print what might happen to your loved one. Maybe it's best he doesn't think about it too much yet.

'Have you told the others (my siblings) yet?', I ask. 'I've told J but not C or J&C'. It strikes me how disorganised this whole thing is. Half the family know, Dad is not being supported properly by the NHS, and Mum is trying to hide it away. 'You must try and get her to talk to us about it', I say. 'I know', he says. Things would be so much easier to deal with if we all faced up to the truth together.

I still find myself in tears, not thinking about the future, but the past. How easy it is to take for granted what we have until it is threatened.

Life Expectancy

2009-08-26T02:24:00.000-07:00

So, the first question that comes to mind is, 'how long?'. There doesn't seem to be a concrete answer to this question but a few guidelines show what the average is and what may be expected. The Fisher Center website have published a very helpful article, How Long Can You Expect to Live with Alzheimer’s? In general:

Americans with Alzheimer’s survived about half as long as those of similar age who did not have the disease. A woman who is diagnosed with Alzheimer’s at age 70, for instance, would be expected to live on average for about 8 more years.The typical 70-year-old woman without the disease, on the other hand, would be expected to live another 16 years. The figures were smaller for American men, who tend to have shorter life expectancies in general: 4.4 years for a 70-year-old man diagnosed with Alzheimer’s, versus 9.3 years for a man without the ailment.

The uncertainty of the speed of progression of Alzheimer's, seems to me on a par with the general uncertainty of life expectancy when one reaches 70, which my mother is not far away from. This news has of course brought that possiblilty much closer to home. The distress and anxiety I feel though, is mainly centred on how difficult it will be for her and of course for my father and all of us who surround her.

After feeling very emotional at the initial news, I am feeling strangely absent from it now. It seems we have gone back to normal life. I'm still not sure who I can talk to, who is 'allowed' to know, and I found it difficult to talk to my father when I visited yesterday after the ease with which we talked on holiday.

Funnily enough my mother said to me yesterday, 'between you me and the gatepost, I'm having treatment for my memory', and I tried not to sound too concerned. I want her to tell me the truth. I want her to say the word Alzheimer's so I can hug her and say that I will always be there to support her and dad. This is now what I pray for, that she will not feel ashamed, that she will understand how important it is for it to be out in the open.

Blogging?

2009-08-21T10:28:00.001-07:00

I am beginning to wonder whether this is the right thing to be blogging about my mother's illness, especially in the light of the fact that she doesn't even know that I am aware that she is ill. I am in two minds and have already deleted the blog and resurrected it. I am not interested in making my family subject to public scrutiny, but there is something in me that wants to learn everything I can from this experience and maybe take others with me. It really is early days and the future is uncertain in every way. But for the moment I continue; anonymously, not knowing if I will ever make this known to my family. I feel that there will be much to write and someone may benefit from my rambling thoughts and emotions.

Beginnings

2009-08-19T04:55:00.000-07:00

'Mum doesn't want anyone to know, but she's been diagnosed with Alzheimer's'. I felt my mouth drop as Dad said the words. I stood by the fridge and wasn't sure how to respond to that awful possibility that had been lurking in the back of my mind and was now given centre stage. The conversation came to a quick end as Mum approached and asked what we were talking about.

We were on holiday and I had come to spend a few days with them. Before coming I had felt the Lord say that these few days were to be a time of talking about important things, although I didn't know what exactly was in store. Suddenly the reality began to come into focus. I felt emotion welling up and my eyes were full. I decided a walk on my own along the beach was called for.

As I switched on my iPod Kathryn Scott began singing 'I Belong To You', and I realised that God was speaking. Mum belongs to God and nothing can separate her, or us from His love. In ALL these things we are safe. Whatever happens He will be with us. Through the fire and the water He will be present. I walked and walked and suddenly knew that God was here, comforting already bringing good out of evil. The journey begins.