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

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.