Dear Dáithí: I have a life-changing disease, but I don't want to tell my family

"I think you should pick a day and time and go for it. You probably know yourself which one of them to call, just do it."

"We should focus on what we can do and, in this case, how we can make things better for you from now on."

I recently received a pretty devastating diagnosis from my doctors. It is a degenerative disease that can only be managed but not cured.

I have three grown-up children, all have families of their own, and none of them live nearby. The closest is about a three-hour drive away, and two are in London. My husband passed away four years ago.

I don't want to be a burden on anyone. I'm frightened and I don't know what to do next.

I can't bring myself to tell my kids. I just can't make that call. I have good savings, and the house is paid off.

But I don't want to end up in a nursing home. I don't want live-in help. And I don't want to live with my children and disrupt their lives.

I feel stuck, and time is not on my side. I feel I have no options.

I’m going to jump straight in; you’ve journeyed long enough on your own with this, and it's time for that to change. 

The whole circumstance around all of this, your family, and most importantly your own mindset, is going to have to change. 

I often speak here about controlling the controllable, and that's all anyone can do on any given day.

The rest is out of our control, so we should focus on what we can do and, in this case, how we can make things better for you from now on. 

You have given your life minding your own children and being there for them when they needed you, and now the tables have turned. 

They shouldn't be surprised really because we all as children are always waiting for this day to come, the day when it’s our turn to mind those who minded us. This is my thinking of the whole process anyway.

I was sorry too to read that your husband has passed, I'd imagine that this was tough on you and the family but remember you all pulled through one of the toughest periods in your life and you’re going to need to find that same strength in this case. 

There might have been dark days, we all have them, but we must make sure that we bring as much light into our lives as possible. 

This is one of the things that we can control. You can certainly do this by having your children and especially your grandchildren knocking around the place. 

Being alone can be a very dark place and this can lead to someone being frightened and I think this is where you’re getting that feeling from. 

Just because your family doesn't live close, it doesn't mean you can't talk to them every day - and by the way, three hours down the road is no distance these days and, in many cases, London is closer than Dublin, so no more excuses!

The problem with your own children at this very moment in time is that they don’t know about any of this, this is going to stop right now. 

You only have to call one of them and explain what has happened and don’t you think for a second that you are being a burden on them. 

Can you imagine if you didn't help them, and something really bad happened to you, and them not knowing the story all along, this would haunt them for the rest of their lives. 

They would forever ask, why couldn't Mom come to us in her hour of need - now, that's a burden that you would cause by not telling them now! 

I think you should pick and day and time and go for it. You probably know yourself which one of them to call, just do it.

Now I know what you don’t want, you don’t want to go to a nursing home, you don’t want home help and don’t want to live with your children, I’m not sure what other options you might have with your recent news. So, what do you want? 

I think you don’t want to be frightened or alone anymore, so the sooner you get the ball moving here the better for everyone. 

You only ‘feel’ like you have no options, but you certainly do. 

You have friends, you should tell your closest friends what's happening and get that thought of being a burden out of your head.

I have the pleasure of chatting with cancer patients a few times every year, and a lot wouldn't have much time on their hands either, and the one thing I really get from them every time is that they’re here now, in that moment in time. 

They are not focusing on what happened yesterday or what's going on tomorrow; they live in that moment, because when you think about it, the past and future only live in our imaginations, whereas now is in the real world.

The solution here does lay with your children, I believe that once they know, you can all sit down and plan what best for you and everyone. 

By all means, tell them what you don’t want, but it’s more important to tell them what you actually want. 

Explain to them how you feel and that you don’t want to be a burden but again listen to their response. 

They will want the best for you. It's clear you would like to be in your own home, and you should tell them that. 

They might come up with a Rota that might have one of them stay every weekend, or whatever you want and what's practical, that’s very important too. 

The time will come when you need help and take it.

I want to finish by saying, you are alive now, make every moment count!

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