Alzheimer’s… an update
Posted by madelinesmind on January 5, 2009
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.
- 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.
- 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.
- 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.
- 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.
- 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.
Diane said
Hello Madeline,
I am so sorry to hear about your mum. I feel like I could have written all of those same 5 questions that you wrote. My mom was my best friend. I miss her so much, but she is still here. I know there are so many of us in this great big world coping with a loved one with this horrible disease. My heart goes out to you because I know EXACTLY what you are going through and it is very, very hard. The only reason I found you is because I Googled Alzheimer’s Disease hunched posture. I did that because my mom has really been hunched over lately. She still walks, but her face is parallel to the floor. I hope you are doing fine and I hope that knowing that your story has helped me will help you. It’s nice to know there are others out there who feel the same. Take care of yourself, Diane
madelinesmind said
Hi Diane,
Thank you so much for commenting and letting me know that you are out there in the awful fug of this disease too. It’s a very difficult journey and I have had to learn to allow myself to cry and grieve about it without feeling guilty or unable to cope. There is no right way of coping, it just is what it is. Sorry to hear about your mum, it seems that the hunching comes with the disease, although I’m happy to hear that she can still walk although I know that this is a double edged sword. Wishing you every comfort and all the love I can send your way. Make sure you take care of yourself too. Madeline x
Diane said
Hi Madeline,
Thank you for the comment. You are so right about it being a double edged sword! Is your mum in a facility? How long has he had it? I agree about the allowing oneself to cry and grieve because some days it just gets to me more. I pray that she passes away in her sleep. While I know that when this happens I will be very sad, I also know that I’ve lost her years ago so I think I’m ready for it. One of my biggest fears is that I will get AD. I try not to think about it, but it is very difficult. I don’t want to put my husband and son through this. I don’t know – it’s just an emotional roller coaster. Keep in touch if you’d like. I hope you are having a good day in your neck of the world. Diane (California USA)