Mum – how does it affect me?

I know I have spoken a lot about the facts to do with mums passing. I have told you about what I have been doing and what I have been up to. Today I have been dropping off thank you cards to various different people who had made the day go so well. I even picked up mums ashes today so ironically in someway she is spending Christmas with me for one final time.

I don’t mind people asking me questions about mums illnesses. How she coped with the diagnoses of dementia and how it affected her. How it affected me is another thing. Watching someone slowly taken from you is one of the worst things that I have ever experienced. When my dad passed away it was within fifteen minutes and he was gone. It was a massive shock to the system. This was the complete opposite.

Over five and a half years you see the person that you once knew change. Some people become aggressive or lash out. Mum became more loving and placid. So if someone was to ask me how long do you think it will take or what do you think will happen with a person who has been diagnosed I would say it’s like being blindfolded and trying to through a dart at a map to pick the exact country you live in and that’s how it is. You have no idea. You need to take each day as it comes every day is different. Every day has it’s own challenges and dilemmas and you have to be fit and ready yourself to deal with them.

My first piece of advice with dealing with anyone with dementia has a team of people around who will support you. This could be friends, family, people who have known the person or professionals like social workers, doctors and nurses. Do NOT under any circumstances think that you will be able to cope with it all on your own. You won’t. Ask people to help. There will be people who will say no if it is family but there will be professionals out there who can help and put care packages in place to support you. Your health is just as important as the person you are looking after.

Caring someone with such complicated medical issues isn’t for anyone. It can be extremely stressful and can demand a lot of your time. This is why I gave up work. It wasn’t a decision I took overnight. Something really you need to consider carefully. You are on 24-hour call everyday of the week.

I did have some support from my family my aunt and uncle were amazing and helped all along the way. It was interesting to see those who were willing to help and those who didn’t care at all. You have to realise that looking after someone seems like an endless task. With really little appreciation for what you are sacrificing and giving up. You certainly know who your real friends are after all of these years.

The first couple of years were the worst. I felt guilt for leaving mum on her own even though she was perfectly safe. I thought I should have been there 24 hours a day watching her every move but you cannot do that. I remember the first weekend away I had in 2011 I felt guilty and stressed as I had left her and all the worst thoughts go through your mind.

Even if I was ten or fifteen minutes late for the time to get her tea ready I felt guilty. I felt guilty about everything. Guilt. Completely guilt. Even having some time on my own I felt guilt.

As I said things can be different for everyone. If you need to ask a question please do. I don’t bite only when I am bitten first.

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the barefoot tree

Still grumpy

Gari Wellingham

UK-based musical theatre geek previously living with a brain tumour!

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