Dear Dad,

When I was
small, you held my hand.

When I was
growing up and needed you, you held my hand.

I left home
and started my own life, you were holding my hand.

When my
life took me further away from you and Mum, you were holding my hand.

My life
changed, and I started afresh. There you were, holding my hand.

Time and
again, you led me around the Railway Museum…..by the hand!

When I got
ill and grew weaker, you were holding my hand.

Then.

Illness
came for you. So, I held your hand.

When distance
came between us, I held your hand.

As I heard
your voice on the phone, I held your hand.

When all I
can do is think of you, I’m holding your hand.

For the
rest of my life, Dad, I’ll hold your hand.

And I’ll
never let go.

I love
you. Your daughter.

Milestones

This year has brought milestones into MW’s life. She’s recently turned 50. The day itself was fun. Some friends came to visit and made her day and she had cake and balloons. It was good for her – and for me – to have a house full of people and laughter.

MW hadn’t really had time to get used to being 50 when we learned that her father passed away the other week. They’d not been able to see each other for over a year – MW can’t travel such a distance because her MS is too advanced, her Dad had leukaemia and had deteriorated significantly since we last saw him. This meant that neither he nor MW’s Mum, his main carer, could come and see us.

It’s been a challenging time since we learned of his death. MW has cognitive and memory issues, and I thought she’d need to be reminded what had happened. There are moments where she seems to forget and others when it’s obvious that she’s thinking of him. There’s a deep sadness in her demeanour, a real low mood.

Given that she couldn’t get to see him while he was still with us, she can’t get to today’s funeral. Which is a mixed blessing, I suppose. She can’t say goodbye to him but she’s not surrounded by reminders that he’s gone, which avoids provoking more low mood.

We’ve written something to be read out on her behalf, to make sure that she’s involved in a small way.

We took MW to see her family again. When I say ‘we’, I mean my Mum and I. It was MW’s Dad’s birthday while we were there. He’s been fighting leukaemia for a while, now. To tell you the truth, we’re surprised that his fight is still on-going. We were given a prognosis for him that included a finite amount of time. Therefore, each celebration – birthday, Christmas, etc. – always carried the possibility of being his last.

This is not to say that MW didn’t enjoy seeing her Mum and brother, too. She misses all of her family. Her Mum does all the caring for her Dad, and can’t come to see us.

Although I may have said the same after the last visit, this may well be the last time we do this trip. Five days’ of travelling and care with only the most basic of equipment have left their mark. My Mum is in her late seventies and her health is deteriorating, too. I can’t ask her to keep running around as my assistant whenever I get the urge to do this.

Also, I’m afraid that, as MW gets weaker and weaker, I won’t be able to lift her in the same way as I’ve been able to do. As she’s losing core strength, I’m losing the ability to control each lift. I don’t want there to be an accident that could be avoided.

It was good for them all to see each other. There were a few tears, both on arrival and when leaving. But, for five days, MW felt like she was part of her family again. And I’m glad she did.

Poignant

So, we’ve just been to see MW’s parents. In particular, her Dad. He’s been fighting leukaemia for the past couple of years and can’t get up to see her. MW’s Mum looks after him as I do their daughter. They’ve not seen each other for over 18 months. I hope this is not the last time they see each other. We don’t know whether MW’s Dad will take a sudden turn for the worse – as has happened before. I do know that MW’s MS will deteriorate further. She coped as best she could while we were away, with only me and my Mum to care for her, with no equipment, but there’s a limit to what she can endure. It’s not easy for her to put up with 9/10 hour drives and not having the correct kit to keep her safe.

It was tough for her to endure and hard work to make happen.

But worth it.