A life that we live

Specific disabilities and conditions
1

This is our life, our life that we’re living.
A life full of love, caring and giving.

Can’t always remember, makes us quite sad.
Won’t stop our tomorrow’s there’s fun to be had.

Yes sometimes are black there are dark and there cold.
Makes the moments we cherish more precious to hold.

A clock that is stuck and can’t tell the time.
Darling don’t worry fold your hand into mine.

Let’s settle down let’s take a look.
Our memories unwind from the photos we took.

Together we’ve toiled, sweated and built.
Especially the garden so our flowers won’t wilt.

Enjoying the people the old and the new.
Wishing them love as they whispered “I Do”

Lots of happy faces, special occasions.
Seeing new places and family vacations.

Watch the little ones laughing, lives just begun.
Dancing and clapping a home full of fun.

Artworks and box crafts, achievements that wowed.
All standing tall and most definitely proud!

Going round the block just out for a walk.
Listening to whale music or just sit and we’ll talk.

Another adventure where ready to do.
Your smile a reminder of the man that we knew.

Hospital or Covid, love shining through.
In it together, whatever they threw.

Whatever we have and whatever we do.
Life is worth living and livings with you.

Dementia a battle to which there’s no glory.
But it wasn’t the end and we’re still writing our story

Love you Mr C xx

2

Oh well done, Sue.

It creates a clear mental image.

If there was a clap emoji I would insert it here.

Melly1

3

Thank you! Sometimes we are so busy looking at the hard bits we forget the good bits and how lucky we are!!!

4

I always try to make everything fun with my son, now 41.
It’s not his fault he’s brain damaged, or mine, we both have a life sentence but we’re doing our best.
It doesn’t matter that he can’t read, I can read and he can do the cake making, easier for him than me with arthritis.
We made mince pies last weekend, the pastry was a bit thicker than I usually do it, but the pleasure they gave him was huge.
This morning my grandson and I have been making chestnut stuffing balls ready for Christmas dinner. All now in a baking tray in the freezer ready for Christmas.
Tiredness is my biggest enemy, I get snappy and grumpy. Now I just say “I’ve done enough” and rest.
Non carers may moan about not being able to do this and that, but many carers have been effectively “locked down” by their caring role for years.

5

The poem came after a really bad few weeks my husband is in the end stages of dementia and now bed bound. Christmas has always been a wonderful time for us and the thoughts of this year probably our last and put all the COVID restrictions on top last was weighing really heavy. Our traditional Christmas is out the window. My hairdresser came and told me she had taken up a part time job in a care home and a couple of weeks in she walked into a room and sore a man very close to the end and alone and told me how much it upset her. My husband came out of hospital in July and it’s been a roller coaster ever since I wasn’t sure I would cope or look after him the way he deserved but I am and I do and I do all his caring on my own. I thank god for the days we have left good days and bad. After the hairdresser left I looked through the photos I had taken over the last couple of years despite the dementia i realised what a lovely life we have and at time still do thank to our lovely family So instead of choosing to wallow in the what if and the maybes I owe it to him and our family to enjoy in the moments we have left and celebrate what we still have each other. I wish everyone a joyful peaceful Christmas xx

6

Sue, that made me teary, which isn’t hard for me.
Lost my lovely husband to dementia and other issues 19 months ago, much missed by all the family.
I try to count my blessings, family that care, a home that I am very slowly refurbishing, I can have the heating on as much as I need, learning to cope with things hubby dealt with etc etc.
As stated he is very much missed, but… he was in a nursing home, in hospital loads and I know I would be frantic at not seeing him, not checking on his well being. He was ready to go, so passing when he did, allowed me to give him a good send off. I try to think of these as a positive. Always loved him and always will.
My heart goes out to you (((hugs)))

7

Awww god bless you!! And thanks for the hugs ditto I know on our journey they are very important!! My husband has Parkinson’s lewey body dementia so he can vary dramatically from one minute to the next but I’m sure a few weeks ago he told me his goodbyes and we both wept I still don’t feel ready but maybe because he’s not either some how this time feels more tranquil than it’s felt in the last few years. Maybe it’s because I’m not chasing him round worried about him falling over anymore :joy: Sending my love xx

8

It’s a nice poem; I like it, so thank you Sue.

It’s a shame that my life is not the tranquil idyllic image that the poem evokes; and my wife doesn’t even have dementia, just severe cognitive and memory problems, (along with all the other MS manifestations).

9

Very true.

We have to appreciate and celebrate the good bits - sometimes they come along a-plenty, but at other times are few and far between.

Melly1

10

Thanks Ayjay I’m sorry to hear about your wife.
I do have lots of those hard days and sometimes more bad than good. I am lucky to have an amazing family. My husband is double in continent bed bound since July and unable to do any of his personal care I have had 2 hours respite this year Some days we can have short conversations some days if he speaks it dosent make sense. But it’s small things now a smile and a good morning an I love you a sharp witty remark that’s pulled out the blue or the day that’s really good and we can hoist him in a chair and go for a walk or sit at the table and have a cup of tea or just sing along to a song not that either of us can sing :joy: Being a carer is not easy it’s the hardest thing I’ve ever done in my life but sometimes the only way to get through is to look and count those blessings no matter how few.