PSP Association

Everything good at this end

Just thought to write to say...

Spring gardening is in full swing... Liz came out and sat in the sun whilst I worked away... She waits until I finish a job before getting me to finish it properly. Twice she sighed and said how much she wanted to garden herself.

But she was consulted on every job and sat there enjoying the Spring... Cowslips, Ox-slips and daffodils abound.

We had a great afternoon together.

Waiving

Liz and Kevin

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I am so glad xxx

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That's wonderful to hear, and I'm very grateful for the breath of spring. We still have lots of snow on the ground - I did a bit of skiing around the field yesterday, just to say I had. Spring will be very welcome when it comes here. Thanks, Kevin. Love to you and Liz.

Ec

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I envy you your skiing - it must be so liberating... so connected.

I'm afraid we are little Britain here... three snow flakes is a panick and a harsh winter is when the path get's a little slippy... I'll let you into a secret that is well known... Tolkein's Hobbits were probably us!

Be well EC

Hugs

Kevin

xx

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Love it Kevin so very true

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;)

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Yes, skiing is, as you say, liberating and connected, but I get that from gardening, as well. I hope you do, too. I'm looking forward to grubbing about, when the ground thaws!

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Oh to go skiing Haven't skied since 2011..2010

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Kevin so glad you had a lovely time in the garden, it was such a beautiful day, gardener came in and cut the grass, garden is looking good as well, let's hope Liz and yourself can get out more often, fingers crossed for more nice weather. Yvonne x

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Sounds beautiful Kevin! Much love to you and Liz x

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Sounds lovely Kevin and Liz xx

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Lovely for you x

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Isn`t it great what a bit of Spring sunshine can do for us all ? I`m so glad you both enjoyed your afternoon, it gives you such a lift.

xx

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So lovely to hear, Kevin. I think the fine weather brings out a flush of optimism in us. Long may it last! Love to you both. X

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I really miss how Chris used to garden whilst I instructed him and did the dead heading and moved a few plants around !

He finds it hard to just sit and look. Keeps saying " want to go to my shed ". Its down a steep path so he can't.

But I love this time of year. Just bought some fuschias to plant. I'm hot on pots !!

love, Jean xx

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That must be hard for Chris. The other day Liz asked to be taken arround the kitchen. She wanted to look in all the cupboards. She was so longing to be able too cook.

It ain't easy, is ot?Love to you both

Kevin

xx

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Yes, thats right. Chris has adapted well to me doing his personal care. He never cooked anyway. Not driving was a wrench but manageable. Not being able to do car maintenance, gardening is hard. He also hates watching me carry heavy bags or struggling with things. He was always a real gentleman and still wants to be host and fill people's glasses etc.

It must be hard to keep a sense of self.

love to you both, Jean x

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I am picturing you and Liz in your lovely garden and Liz pointing out what exactly needs done, well done Liz.

Seriously, hope you both get to enjoy lots more time in the garden.

Lots of love Nanny857xx

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Ben sat out in the garden yesterday whilst I did a bit of planting, it got too hot for him so had to take him back inside. Fortunately his downstairs bedroom has his reclining chair and looks out onto the back garden, I throw open the bifold doors and it feels like you are outside. I love this time of year looking what plants have survived the winter and filling any gaps with new plants, I'm a bit of a plane addict. Ben was never much of a gardener but always enjoyed being in the garden, I class it as an outdoor room. I'm glad Liz managed to enjoy such a gorgeous sunshiny day and feel her frustration at not being able to help. Happy gardening.

Love Kate xxx

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Hi Kate

Thanks for sharing that - Nice :)

Good weather makes a lot of defference.

Warmly

Kevin

xx

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I love winter, but my sweetheart is getting cabin fever, I think, quite depressed and agitated. He needs some sunshine!

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What a pleasant day. Liz you are one lucky gal you have such a wonderful man.....and K1 you are so lucky to have a gal who knows what goes where....

my wild onions are doing just fine...

(Happy springtime HUGS)

AVB

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Hi AVB

We are so lucky. Its true. Every good day is alike a gift.

There's something wonderful about tending plants and getting a lettuce or some plums is always a delight.

Happy springtime and hugs to you... Wild onions sounds quite exotic too.

Warmly and thanks

Liz and Kevin

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I also take Don out to sit in the garden while I work.Last week he got some sunburn on the back of his neck.

I wish he would take more interest in it though.He just sits there until I ask him if he is ready to go in and he says yes.I filled a flat with soil and had him plant some seeds in it but it was hard to tell if he enjoyed it.We have both had lots of interest in plants all our lives-we owned and operated a garden center/nursery for 35 yrs until we retired 2 yrs ago. So it's hard to understand his lack of interest now.

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Hi Janthenana

PSP within a few years off retirement. That's hard indeed.

Garden centres and nurseries look very hard work and there's always someone like me coming along and asking impossible questions too!

I find it difficult to tell what interests Liz too. That flat PSP expression and the lowered level of initiation all part of PSP and difficult for the carer. Liz sat and smiled with the pleasure of it, but then some of her words were tinged with sadness of not being able to do things. I just try and make things the way I think she would like them. She always says its good, probably because she knows I've gone to trouble and she does not want to disappoint me.

She surprised me last night. One of the carers was off sick and so I said I would double up with the other one, who can be a little overwhelming with her laughing and up beat high emotional expression. When the carer left Liz asked me was I OK with doing the care with her. I said yes, but that I had to bite my tongue a bit and then I said a little about how life must be very tough for her. The carer had said the odd thing here and there about her personal life over the months and when the dots are joined she clearly has a very tough life. To my surprise Liz turned around to me and said, "We are very similar aren't we?" I asked how and she replied that both she (Liz) and I piece things together and see the person in quite a whole way. I had thought Liz way past complex thought. I was so pleased to hear her words and saddened too. She used to be a social worker for disabled children.

I'm writing all of this, I suppose, to say that PSP is damned difficult for both to live with and that it can be surprising.

Wishing you and Don the best of the summer.

Warmly

Kevin

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That story rings true with me. So often I feel Chris is really out of it and then he struggles to say something which demonstrates his understanding. Mostly he just " blanks " me. I find it very difficult because it makes me want to get any reaction although I know it isn't fair.

Does Liz "freeze " ?

Chris suddenly does - often just as I'm trying to sit him on the toilet. He is rigid and wild-eyed and I can do nothing. I feel so helpless.

Oh dear !!

love, in kinship ! Jean

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Hi Jean

I freeze physically. Which means that I am trying to make myself do something, but my body won't respond at first.

'Blanking': Sometimes Kevin says something to me and I hear the words and understand them, but there is no response forthcoming in my mind. I try to find a response, but there just isn't one. Sometimes its only after Kevin has left the room that I have a response, but he isn't there. If he comes back later I will have already forgotten it. I know this because if he asks me again I know I did have a response, but can't remember it.

Frustrating for both of us.

Love

Liz

xx

(Typed by Kevin)

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Thanks Liz for your explanation of how the "blanking" is experienced from your viewpoint.Often times the grandchildren are in the room talking about something going on in their life and Don will be listening with no response.Then once they leave the room,he asks them a question about it and I have to tell him they are already gone.That has to be frustrating!

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Jane

It sounds similar.

Frustrating for everyone.

So good to know you understand it.

Liz

XX

(My words typed by Kevin)

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Don also exhibits "blankness" so much of the time and I pray everyday for patience and strength to get through the day.

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Hi Jane

He is there. Just running a lot slower.

Kevin struggles with patience too.

Liz

x

(Typed for me by Kevin grrr)

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I am reading your words with tears in my eyes because they ring so true with us also.I think I can believe that there are so many thoughts that Don has that he just cannot express.I sometimes speak sharply to him when he does not respond to what I am trying to get across to him,but I apologize to him afterward and he says he understands.

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Yes ! We are always apologising to each other - me for getting impatient and he for being so slow to respond.

It is a really trying disease.

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Just make sure you tell him you love him. He will understand your frustration if he is anything like me.

I understand a lot of what is going on and can join in if given a lot of time.

Kevin rushes around trying to get all of the care and chores done. He get's frustrated at my slowness and can't give me time all of the time. I know its hard for him. Don probably does too with you.

PSP is hard for everyone and we are all far from perfect.

Liz

xxx

(Typed for Liz by Kevin. Adding Liz has a lot of trouble finding the words she wants. So there is a lot of back and forth to get posts how she wants them)

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Hi Jane

Writing these posts with Liz means that I actually stop buzzing around doing things and have to sit and talk with Lizzy to find out what she thinks and wants to say.

What you describe sounds very much like my experience and sometimes I feel so frustrated and angry!

If I try to sit down and ask Liz what's going on for her we don't get very far. Given my NHS Psychology background that's quite damning! (Chuckles).

However writing these posts enables her to focus better and we talk about her and us and many issues which we would not do otherwise.

This has bee the toughest thing I have ever had in my life. It tests me in every imaginable way.

I don't think I am a very good carer really. Certainly I was not born to this sort of slog. Then I realise that we make it work. She is still her and we love each other.

Well that's our context.

I am sure you have your own.

Carer to carer.

I wish you the strength you want and the best of times with Don.

Warmly

Kevin

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Oh,you sound like the best carer ! I have often thought that if our situation were reversed,Don would be a much better carer than me!

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So glad you both had a nice day Kevin. It was Derek's greatest pleasure to be outside. It was so fortunate that we had great weather on the whole last summer/autumn and he was able to go outside almost every day until a week or so before he died.

Love Vicki x

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Oh, Vicki

That's wonderful.

Liz would like to end her days like that. She dreads endless days in a Nursing Home.

I hope Derek had a good end Vicki.

Warmly

Kevin

x

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So glad you had a lovely day, good memory

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xo good jtat iu and liz cold b together and enjoy being together#

lol jill

xxxxxx

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Thanks Jill

You know when we have a good day its so wonderful. Today Liz sat in the garden with the respite carer... I had made them a salmon, sweetcorn, rice with honey and Dijon dish and left them to eating and chatting in warm sunshine whilst I got a new strawberry bed done... All is so good in the world sometimes despite this damned illness.

Liz would probably have preferred a stripped off fireman doing the strawberry bed in the hottish sunshine, but hey...

How are you doing?

Hugs and waiving

Kevin

xx

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