Care for the Carer !

[maryjoan]

I wondered if we could start a thread that is not about the dreadful world in which we live alongside this terrible disease.

And perhaps a thread that is not covered elsewhere on the site.

My partner has dementia - but I am still ME!

Who am I? Well, in the world of technology, we have to be safe, but can we talk about general things in our lives - things we love to do, want to say, but 'outside' dementia.

We are all in the same situation, but could we 'chat' to each other without mentioning the elephant in the room - I wonder.....

Does anyone think that we can? Is it possible? Would it even be a good idea?

 

[TJC63]

What a lovely idea!
My father is in the advanced stages of dementia/alzheimers and I've moved back in with them to relieve the burden on mum (who insists she wants him at home), do what I can to keep her healthy and help with Dad in th evenings and at weekends. Whilst I don't regret my decision at all, I do find it's so easy to lose sight of 'me'. I have my dog who really is my mental health companion.... walking him gives me a much needed break...and I'm dabbling with watercolours. I used to love reading but have moved on to audible versions so I can combine dog walking and books. I find you have to grab those slivers of happiness whenever and wherever possible. I try to live in the moment! And eat chocolate!!!

 

[Cat27]

What a lovely idea!
My father is in the advanced stages of dementia/alzheimers and I've moved back in with them to relieve the burden on mum (who insists she wants him at home), do what I can to keep her healthy and help with Dad in th evenings and at weekends. Whilst I don't regret my decision at all, I do find it's so easy to lose sight of 'me'. I have my dog who really is my mental health companion.... walking him gives me a much needed break...and I'm dabbling with watercolours. I used to love reading but have moved on to audible versions so I can combine dog walking and books. I find you have to grab those slivers of happiness whenever and wherever possible. I try to live in the moment! And eat chocolate!!!

Welcome to TP @TJC63.
Chocolate & swearing got me through a lot when I cared for my Dad.

 

[Agzy]

I think I follow what you mean in that I have a number of things I do where I am just ‘me.’ Firstly there is golf, a pastime I have returned to after 43 years of never even thinking about it, but now can wander the fairways and greens often on my own just being happy and yet challenged. Another very important thing is “my secret freind.” She, yes it is a woman but not the “other” woman, but a girl I won a jiving competition with 60 years ago and haven’t seen for 59 of those years. We remet through FaceBook and now chat almost daily in a sort of over the garden wall fashion and, even though we will never meet, we both have things in life we talk about that we find interesting and chat about. Yes, a lot are memories and lots are about our respective families, but all far more innocent than when we did know each other. So yes, I have many opportunities to be ‘me’ and thanks for letting me be just me on here too.

 

[maryjoan]

What a lovely idea!
My father is in the advanced stages of dementia/alzheimers and I've moved back in with them to relieve the burden on mum (who insists she wants him at home), do what I can to keep her healthy and help with Dad in th evenings and at weekends. Whilst I don't regret my decision at all, I do find it's so easy to lose sight of 'me'. I have my dog who really is my mental health companion.... walking him gives me a much needed break...and I'm dabbling with watercolours. I used to love reading but have moved on to audible versions so I can combine dog walking and books. I find you have to grab those slivers of happiness whenever and wherever possible. I try to live in the moment! And eat chocolate!!!

Ha!! Chocolate is a good idea - I buy the Lindt 75% dark chocolate with orange, and just have one or two pieces a day - or try to!

 

[maryjoan]

I think I follow what you mean in that I have a number of things I do where I am just ‘me.’ Firstly there is golf, a pastime I have returned to after 43 years of never even thinking about it, but now can wander the fairways and greens often on my own just being happy and yet challenged. Another very important thing is “my secret freind.” She, yes it is a woman but not the “other” woman, but a girl I won a jiving competition with 60 years ago and haven’t seen for 59 of those years. We remet through FaceBook and now chat almost daily in a sort of over the garden wall fashion and, even though we will never meet, we both have things in life we talk about that we find interesting and chat about. Yes, a lot are memories and lots are about our respective families, but all far more innocent than when we did know each other. So yes, I have many opportunities to be ‘me’ and thanks for letting me be just me on here too.

Oh! I love the idea of your long ago friend - and chatting over the garden wall via internet. It is that sort of reality I want to cling to. I feel everything is about 'him' and nothing about me anymore.
I do have my escape into the past - how I wish I could really 'time travel' but instead I trace family histories for people - was my job before all this dumped itself on me......

I get pleasure from my garden, its no way perfect, far from it, but just getting one little plant to grow, that looked as though it was lost, makes my day.

I also have an oak tree that is 23 years old, I have grown it from an acorn and I love it! It now lives in some woodlands my son owns, where it can do its own thing for the next 900 years or so, all being well.

 

[DennyD]

As TJC63 said it's so easy to lose sight of yourself, but being in nature with my camera is my thing. I enjoy close up work of plants, flowers and abstracts of the natural world. Getting up close with maryjoan's oak tree sounds wonderful.
This does take me onto a different plane. My other great joy are our two rescue cats, they always make me smile, I love them to bits.

 

[Agzy]

Oh! I love the idea of your long ago friend - and chatting over the garden wall via internet. It is that sort of reality I want to cling to. I feel everything is about 'him' and nothing about me anymore.
I do have my escape into the past - how I wish I could really 'time travel' but instead I trace family histories for people - was my job before all this dumped itself on me......

I get pleasure from my garden, its no way perfect, far from it, but just getting one little plant to grow, that looked as though it was lost, makes my day.

I also have an oak tree that is 23 years old, I have grown it from an acorn and I love it! It now lives in some woodlands my son owns, where it can do its own thing for the next 900 years or so, all being well.

Family memories of the past and the growth of an acorn/oak tree for the future, excellent ways to escape tha elephant in today’s room. We all owe it to ourselves to have a life with some choices and even selfishness to balance things even f only a little. Love the though of growing your own oak tree.

 

[maryjoan]

The oak tree has a story.

Twenty three years ago this week we lost our son,James, who was aged 13. A couple of days after his death I was walking the dog and saw this acorn on the road. It was trying to sprout a leaf or two. I felt sorry for it, because I thought a car would run over it and squash it, so I put it in my pocket and took it home.

I put it in a plant pot and for several years it was a twig with a few leaves on.

Now it is over 20 foot tall, still only a sapling in the oak tree world, but it will grow into a brilliant tree one day. We call it 'James' Tree'.

 

[carolynp]

Such a good idea @maryjoan !

So I love chocolate, and all sweet things - but I turn to them too readily in stressful times, and put on weight.

I love walking and I quite like my gym sessions. I dread them beforehand but afterwards feel more cheerful and sometimes even invigorated.

I love reading.

I love my iPad! Embarrassing! To me it’s my box of delights. Email - movies ... right now I’m using it to track my son’s flight on his way home. Two hours and 32 minutes remaining!

Over the last 15-18 months, I’ve had small jobs done on the house interior, in the hope of making life a bit simpler. It’s been tedious and tiring and expensive - but it’s all done now. I’m slowly letting myself register that it’s actually worked. I love looking at it and reviewing what I’ve had done. The house is easier to look after now, I think. My OH with FTD seems also to find living here a little more straightforward. He seems less stressed and anxious.

But back to me. Like @maryjoan I’m a researcher. Lately I’ve been writing something up. I’ve less than a thousand words so far, with many thousands to go, but despite the sore back and neck, and the slowness, it can be magical. There are moments when it flows, however rare they are, and then it feels like this is what I was born for.

Another of my loves is clothes. I’ve lately found a good knitter and also a clothing business run by three sisters. They do everything, from design to making up. Their fabrics are sourced from Japan mostly, the most amazing cotton gauzes among them.

Because the runs are so small, and because they like to involve their clients in their process, I feel really involved and it’s a way of being creative without actually having to sew, which I’m not good at. Also, on a more practical note, they bind their seams. Their garments look as good on the inside as they do on the outside, and many are reversible. It gives me tremendous satisfaction to buy and to wear their things.

I love seeing the house freshly painted and I love the garden all “done at once” now we have someone looking after it on a quarterly basis. Our cat is buried under our weeping mulberry tree and I love thinking of him there, in the quiet earth. Our dog couldn’t be buried in the garden but her collar and tags hang with an old horseshoe on the huge Robinia tree in our back garden.

I love the azaleas in flower. We have pink, white, and another which is fuchsia pink, rose pink, and white.

Almost all these things I love are unaffected by my husband’s dementia and by caring for him. Thank you @maryjoan for reminding me I still have a life of my own, even though I tend to forget it.

 

[nae sporran]

What a lovely memorial, though how sad to lose your son so young, Maryjoan.

I agree with you, it is certainly good to have some time to be yourself away from Dementia. One day a week with the ramblers walking and enjoying a pub lunch with a pint of cider, and one afternoon alone with my camera walking in the woods or the fields are my two escapes.

 

[maryjoan]

Such a good idea @maryjoan !

So I love chocolate, and all sweet things - but I turn to them too readily in stressful times, and put on weight.

I love walking and I quite like my gym sessions. I dread them beforehand but afterwards feel more cheerful and sometimes even invigorated.

I love reading.

I love my iPad! Embarrassing! To me it’s my box of delights. Email - movies ... right now I’m using it to track my son’s flight on his way home. Two hours and 32 minutes remaining!

Over the last 15-18 months, I’ve had small jobs done on the house interior, in the hope of making life a bit simpler. It’s been tedious and tiring and expensive - but it’s all done now. I’m slowly letting myself register that it’s actually worked. I love looking at it and reviewing what I’ve had done. The house is easier to look after now, I think. My OH with FTD seems also to find living here a little more straightforward. He seems less stressed and anxious.

But back to me. Like @maryjoan I’m a researcher. Lately I’ve been writing something up. I’ve less than a thousand words so far, with many thousands to go, but despite the sore back and neck, and the slowness, it can be magical. There are moments when it flows, however rare they are, and then it feels like this is what I was born for.

Another of my loves is clothes. I’ve lately found a good knitter and also a clothing business run by three sisters. They do everything, from design to making up. Their fabrics are sourced from Japan mostly, the most amazing cotton gauzes among them.

Because the runs are so small, and because they like to involve their clients in their process, I feel really involved and it’s a way of being creative without actually having to sew, which I’m not good at. Also, on a more practical note, they bind their seams. Their garments look as good on the inside as they do on the outside, and many are reversible. It gives me tremendous satisfaction to buy and to wear their things.

I love seeing the house freshly painted and I love the garden all “done at once” now we have someone looking after it on a quarterly basis. Our cat is buried under our weeping mulberry tree and I love thinking of him there, in the quiet earth. Our dog couldn’t be buried in the garden but her collar and tags hang with an old horseshoe on the huge Robinia tree in our back garden.

I love the azaleas in flower. We have pink, white, and another which is fuchsia pink, rose pink, and white.

Almost all these things I love are unaffected by my husband’s dementia and by caring for him. Thank you @maryjoan for reminding me I still have a life of my own, even though I tend to forget it.

Your place sounds absolutely delightful! I have never been to your side of the world but two of my children have at different times, and loved it. When you put the elephant in the room to one side, you have carved a peaceful and creative 'self' or so it seems.

I think we have to forget about elephants sometimes, just when we can, and remember the delights about us. The clothing business you tell of, sounds wonderful, how utterly lovely, and such a comfort if that is the right word.

I had a lovely surprise this week, My daughter was 40 on Thursday ( that was not a surprise, we knew about that!) But when I asked her what her little brother, (aged 30) up in Scotland had got her, she said she could not tell me....... strange, thought I. Then she said it was to do with my birthday as well ( another big one) in December.

I was consumed with curiosity.

Anyway, son up in Scotland phoned me as said it was a long time to keep a secret as my big birthday is not until December - so he told me. Bless him. He and his wife are expecting their first baby, and he has booked, and paid for, plane flights and hotel for myself, his sister, and my little granddaughter to go up to Scotland not long after the baby is born, so we can all meet the latest member of the family. My son had cleared it with my daughter's husband, so he would look after their toddler, and also phoned my partner's son ( partner has the elephant in the room) to make arrangements for him to come here to look after his Dad.

What a loving and generous idea - son up in Scotland knows that his sister and I would have struggled to find the money to go up to Scotland - so he has done it for us!!!!

It has cheered me so much this week.......... that and the fuchsia I thought was deceased, bursting into flower!

 

[maryjoan]

What a lovely memorial, though how sad to lose your son so young, Maryjoan.

I agree with you, it is certainly good to have some time to be yourself away from Dementia. One day a week with the ramblers walking and enjoying a pub lunch with a pint of cider, and one afternoon alone with my camera walking in the woods or the fields are my two escapes.

Yes, Nae Sporran, no one said life was easy - but we all have our sadnesses.

 

[Grannie G]

You have turned your tragedy into a wonderful memorial maryjoan. Its something really special.

 

[AliceA]

I wondered if we could start a thread that is not about the dreadful world in which we live alongside this terrible disease.

And perhaps a thread that is not covered elsewhere on the site.

My partner has dementia - but I am still ME!

Who am I? Well, in the world of technology, we have to be safe, but can we talk about general things in our lives - things we love to do, want to say, but 'outside' dementia.

We are all in the same situation, but could we 'chat' to each other without mentioning the elephant in the room - I wonder.....

Does anyone think that we can? Is it possible? Would it even be a good idea?

Mary Joan, yes, I think it a good idea. We need to look outside the situation and just enjoy the chat, the friendship. X

 

[maryjoan]

You have turned your tragedy into a wonderful memorial maryjoan. Its something really special.

Thank you - it feels that way too, we all talk about 'James' Tree' and my eldest son, looks after it, as it is in his woodlands...... lucky me.

 

[maryjoan]

Mary Joan, yes, I think it a good idea. We need to look outside the situation and just enjoy the chat, the friendship. X

Yes, well let's do that!! I look forward to meeting new friends and talking as though there are no elephants in any rooms....... xx
Does anyone else share my interest in genealogy? It's my job, but I do love meeting all these people in the past........

 

[DeMartin]

Yes, I’ve been doing my family tree for several years, my dad started it, and I took over when his dementia made it impossible.
I am proud to say we are not descended from felons, but unfortunately not nobility either.
It’s fascinating how fashion affected the family. One generation were wealthy hand loom weavers, the next labourers, all due to the advent of mechanical looms.

 

[maryjoan]

Yes, I’ve been doing my family tree for several years, my dad started it, and I took over when his dementia made it impossible.
I am proud to say we are not descended from felons, but unfortunately not nobility either.
It’s fascinating how fashion affected the family. One generation were wealthy hand loom weavers, the next labourers, all due to the advent of mechanical looms.

Yes, I have hand loom weavers and also an Irish Copper miner - my Gt Grandfather - whose cottage I found in Avoca recently

 

[AliceA]

Ha!! Chocolate is a good idea - I buy the Lindt 75% dark chocolate with orange, and just have one or two pieces a day - or try to!

Aldi 85% quite good too. I like a small piece chewed with raisins, DIY! For a treat the milk almond is good as are the almonds. Of course I only eat it for health reasons!
Still after a meal it gives that sweet touch, better than a pudding!