Mum was a really nice lady and all out friendly person who wouldn’t hurt a fly and like any life threatening disease or life taking events we always wonder why it happens to the good. Why Mum? Why our Mum? Don’t think for a moment I am suggesting it should be someone else’s mum or someone else, it’s just a cry for answers when truth is we already know the answer and that is Dementia / Alzheimer’s fears no one, takes no hostages and when it attacks it’s slow, it’s long, it’s heartbreaking and I would not wish it upon my worst enemy, however as a carer/ family if you prepare yourself you can ensure that the stress, sadness, devastation and pain it can bring can be managed to a point where you will find a common happiness with your family and a quality of life for your loved one suffering from Alzheimer’s.
- Talk openly to people about it, especially family members
When a person is affected by Alzheimer’s the family and friends tend to feel a bit embarrassed, sometimes people disappear and lock themselves away from the situation which can cause problems and destroy the family unit, so it is very important to talk about it. Fortunately my brother @karl and I talked about mum’s situation every day and although it was painful it enabled us to work together, share the load and be a rock for each other.
- Prepare for change
There will be a seismic change in your life as you become a carer for someone with the onset of Alzheimer’s. Your patience, love, energy, sanity, comprehension and understanding will be tested and required to it’s fullest and it may even mean organising a care rota or even possibly packing up work and becoming a full time carer. There is no need to be alone in this and if you have any questions please feel free to ask in our forums – A place to talk
- Financial Upheaval
The cost of looking after someone with Alzheimer’s can be heavy emotionally but when they are transferred to a care home the cost financially can be over whelming so please ensure all assets, pensions, insurance etc are sorted out before the person with Alzheimer’s can no longer assist as this could save you from potentially losing everything, having to foot the bill, family fall outs and legal ranglins. Again if you have any questions go over to our forums – A Place to talk
- Share the load
Do not try to do everything on your own even if you are the only child, sibling, family member or friend, there are Day Care Centres, respites and home visits that can give you the chance to get some normality back in your life (even if only for a moment) also as mentioned talk to people about what’s going on and try to get others to help you, you will soon know who your true friends are.
- Always remember whilst they may forget…
Just know this one thing! They have always loved you and always will because sometimes when the caring becomes tough and frustrating you are going to feel as though no one loves you especially the person who you are caring for.
These are 5 extremely basic and simple yet effective tips which I know a lot of carers and families are not doing and as a result it is causing major problems, breaking up families and causing carers to go into melt down. If you need any help we are here for you!
Finally, We always tried to leave Mum with a smile on her face
We did fun crazy things like make faces, dance around, jump up and down, make funny noises and she would laugh her head off, we also found by asking simple questions and answering yes or no she would respond to either the Yes or No answer we provided and when we ask her if she knew we loved her, she would always smile and shout yes! Which made us feel really great!
Everyone is different and as they progress into the later stages of Alzheimer’s remember there is still a beautiful person who still wants to be loved and wants to feel safe and although it may seem as though the person you once knew has gone their soul is still alive deep down inside of them.
This is my first post which I hope will help others to open up and share their experience to also help others too. I will continue to post more on my experience, how we dealt with things, what we felt we did wrong and what we learnt, how we stayed strong but still felt weak, how we dealt with the transitions from diagnoses to how we managed end of life and so much more
I hope you will share this post with others, especially those caring for someone with Alzheimer’s, join us and share your experience we are all here to help!