Any recommendations for a good and informative book

[Lawson58]

Really helpful thread and I have found Wendy Mitchell’s blog and YouTube video very good. I need a few new ideas to understand how his brain is working so that I can be more understanding. I often feel that it’s my personality that gets in the way of being more patient.

I don't think any of us can work out how a PWD's brain is working. If you've read any of Norm's thread, you will see that he suffers with torment and confusion, sadness and anger and much of the time he really struggles.

Perhaps we shouldn't try to work it out but perhaps that for one little moment, whatever is happening in that person's mind, that is how it is and we should accept it for what it is. The next minute it could all change and then you are back to square one.

If you want to know what is going on in someone's head because you are trying to anticipate what to do next then good luck with that. Just think about how hard it is to work out what is going on in a well person's head, and you will realise that it is just not really possible.

 

[Big feet pete.]

My OH was diagnosed 6 years ago, but has only recently started to behave 'differently'. Some days he's his old self, completely aware, easily remembering things and some days he talks nonsense, can't make himself understood, can't see/find things etc.etc. I feel I need some guidance and always look for a book to refer to. Some of the Alz Soc booklets are OK, but some really aren't relevant. I have 'Contented Dementia' which largely seems to cover people who are iller than my OH, so I wonder if anyone has any sort of book which they find helpful as a reference. I try to be very patient but I never know how to behave when he's bad - sometimes we both make a joke of it, which seems fine, but I don't know if that's best for him. Any ideas most gratefully received !

I'm not sure if it will help but I was recommended a book Called " the little girl in the radiator" can't remember who the author was but it was about his mum and her dementia . I found it a help and easy to read .

Yes a book called the sefish pigs guide to caring its a must have for people like you i cared on my own for 10 years for my wife who is now i care home and the amount of times i turned to book for guidence look it up on line the selfish pig s guide to careing trust me ots a must have book for carers.

 

[Big feet pete.]

The selfish pigs guide to careing ( book )

 

[jenniferjean]

I'm not sure if it will help but I was recommended a book Called " the little girl in the radiator" can't remember who the author was but it was about his mum and her dementia . I found it a help and easy to read .

It's by Martin Slevin

 

[Mitch60]

It's by Martin Slevin

Yes! ...thanks

 

[Norrms]

My OH was diagnosed 6 years ago, but has only recently started to behave 'differently'. Some days he's his old self, completely aware, easily remembering things and some days he talks nonsense, can't make himself understood, can't see/find things etc.etc. I feel I need some guidance and always look for a book to refer to. Some of the Alz Soc booklets are OK, but some really aren't relevant. I have 'Contented Dementia' which largely seems to cover people who are iller than my OH, so I wonder if anyone has any sort of book which they find helpful as a reference. I try to be very patient but I never know how to behave when he's bad - sometimes we both make a joke of it, which seems fine, but I don't know if that's best for him. Any ideas most gratefully received !

Lewy Body Soldier, written by someone actually living with this disease xxxxxx

 

[Norrms]

The Lewy Body Soldier was written by someone actually living with this disease xx

 

[WA123]

Up to date research continues to say that personality does change especially after a life changing event. We all are certainly going through major life changing events on here.
So there is hope that we can change personality when we have too.
I wonder whether many things we put down to our personality do change when we realise that this change is a survival tactic as as much as anything. It pays dividends.
There are tips and techniques to help us do this.

I know every mood, attitude and stance I have is magnified in my husband's eyes. It is as if a slight impatience is construed as something far more. Where loving words gestures also have a positive response.
The problem is that people with brain conditions pick up the subtle signs we give not just the obvious.
So fake it till we make it perhaps.

I am NOT suggesting this is a panecea for every issue or for every time, but if it works for as long as it works it is worth cultivating.
It is not always easy, I have an infection at the moment so am really having to make more of an effort.
My reward today was a banana beautifully mashed, better than a diamond ring.

I so agree with this and with the lowering of expectations in the post further down. The lowering of expectations is very helpful on the road to acceptance and I've found that lowering them on my part has led to a natural change in expectations so that I am now rarely disappointed. I too have noticed that my moods definitely affect how my husband is feeling and if I am the slightest bit irritated by anything my husband does his confidence is knocked to rock bottom which always leads to one of those never ending, circular arguments. However it also works in the other direction. If I am calm and relaxed so is he even if I have to leave the room compose myself and go back in again. If I do that the atmosphere can change from stressful anger to lightheartedness as though someone has flicked a switch. It's so hard to do but definitely worth it. A smile on his face always puts a smile on mine.

 

[AliceA]

New attempt to be more understanding tonight with a couple of new strategies. They both worked and a much more settled evening, not completely but better.

I am please to hear this. I find I have to avoid anything that can be construed as a criticism in any way.
I just asked that a door was shut after him when he finished, a sharp retort was I was just going to do that.
A sharp stare too, I avoided eye contact and mildly said Oh I just did not want you to get cold.
The mood dropped to normal and all was fine.
Problem is we are not mind readers but we are body readers. This a skill worth developing if it is not natural. I used to refer to it as our animal instinct that help us survive.
We all have it it is just latent in some. It can seem like hard work but it works in all situations most of the time.
We can all be caught unawares. I think of it as trying to be in a lower gear, slow, steady.

 

[AliceA]

I so agree with this and with the lowering of expectations in the post further down. The lowering of expectations is very helpful on the road to acceptance and I've found that lowering them on my part has led to a natural change in expectations so that I am now rarely disappointed. I too have noticed that my moods definitely affect how my husband is feeling and if I am the slightest bit irritated by anything my husband does his confidence is knocked to rock bottom which always leads to one of those never ending, circular arguments. However it also works in the other direction. If I am calm and relaxed so is he even if I have to leave the room compose myself and go back in again. If I do that the atmosphere can change from stressful anger to lightheartedness as though someone has flicked a switch. It's so hard to do but definitely worth it. A smile on his face always puts a smile on mine.

I find exactly the same, a good reason to look after ones own needs the best we can too, every positive has an effect overall. X

 

[AliceA]

Wow, WA, just found your blog, amazing and wonderful should be on everyone's reading list!

Www.memoryfortwo.com

 

[WA123]

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Wow, WA, just found your blog, amazing and wonderful should be on everyone's reading list!

Www.memoryfortwo.com

thank you. Starting that was the best thing I think I ever did if only because it helps me focus on the positive.

 

[kindred]

Know what, you guys ... I am so envious of you because there was never really time for me to try and develop strategies with my husband. After diagnosis, which came as a total shock (he was referred to hospital following a fall, had a scan which showed up fairly severe dementia, and believe me, had very few noticeable symptoms) and about a year of lovely togetherness, he just went downhill so fast it was hard to keep up with. Anyway, now, as you know, he is in his lovely nursing home and happy. It is full of lovely young women, he is fed well and cared for.
with love and best, Kindred. so good to read this thread.
xxx

 

[WA123]

Know what, you guys ... I am so envious of you because there was never really time for me to try and develop strategies with my husband. After diagnosis, which came as a total shock (he was referred to hospital following a fall, had a scan which showed up fairly severe dementia, and believe me, had very few noticeable symptoms) and about a year of lovely togetherness, he just went downhill so fast it was hard to keep up with. Anyway, now, as you know, he is in his lovely nursing home and happy. It is full of lovely young women, he is fed well and cared for.
with love and best, Kindred. so good to read this thread.
xxx

that must have been so hard @kindred. I think what helps me is that the decline is slow and manageable at the moment and the strategies do work. The diagnosis came as a complete shock to me to although I have to say not to any of our friends. In my case I only saw what I wanted to see. I can't imagine how difficult it must have been to watch the one you love decline in front of your eyes.

 

[AliceA]

Know what, you guys ... I am so envious of you because there was never really time for me to try and develop strategies with my husband. After diagnosis, which came as a total shock (he was referred to hospital following a fall, had a scan which showed up fairly severe dementia, and believe me, had very few noticeable symptoms) and about a year of lovely togetherness, he just went downhill so fast it was hard to keep up with. Anyway, now, as you know, he is in his lovely nursing home and happy. It is full of lovely young women, he is fed well and cared for.
with love and best, Kindred. so good to read this thread.
xxx

We had a slow slow decline most of that was absorbed and adapted to as ageing. We had friends and neighbours who had varying degrees, many lived alone so again as friendly neighbours it was absorbed into the community. I think many thought there for the Grace of God go I. I think people are remarkably tolerant if we let them be. I knew a retired GP who wandered, the villagers knew him well and brought him home.
We have someone living in the village who has Carers in and manages to live happily if ruefully. She knows she muddles but copes. She know what she wants and does not want too! Everyone looks out for her.

A sudden serious decline is very different and the care you give to Keith and the others is a shining example of all kind of love, this is our best weapon for most things.
I do think that there comes a time when for physical reasons we need to get extra help either at home or in a safer place.
Perhaps as a society we just expect to much of all people, using IT, fewer offices to sort things out, less local shops, transport.

Whether care is at home or in a home, it is still very tough.
Seeing how someone deteriorates when they had been so able is painful.
I know I have to be grateful for what we have while we have it.

 

[Grahamstown]

I have taken a leap and booked a cruise for March on the ‘do it now’ principle. Two reasons really, I have managed to get annual travel insurance, also he loves cruises and seems to know when I talk about it, saying he likes doing this and that, although he had forgotten about it the minute it was done. Even though it won’t be all plain sailing, to coin a phrase, I shall enjoy being looked after too, and at least I know the score now and I know he will need even more care. I am either foolhardy or wise to do it while we can and only time will tell.

 

[WA123]

I have taken a leap and booked a cruise for March on the ‘do it now’ principle. Two reasons really, I have managed to get annual travel insurance, also he loves cruises and seems to know when I talk about it, saying he likes doing this and that, although he had forgotten about it the minute it was done. Even though it won’t be all plain sailing, to coin a phrase, I shall enjoy being looked after too, and at least I know the score now and I know he will need even more care. I am either foolhardy or wise to do it while we can and only time will tell.

I think you need to do things while you can so congratulations on taking that great leap of faith and at least it's a holiday where you will have people to call on if you have a problem. Good luck and maybe we'd all (or at least some of us) would like to hear how it went when you get back.

 

[Grahamstown]

@WA123 Thank you for your encouragement, I am just hoping for a good holiday. We won’t do much but enjoy the ship. I shall report back because it is when I read other people trying a holiday it helps me. It is really interesting that he has been enthralled by the website looking at the photos and videos which brought back memories of last year, so I think it will be lots of rewatching now. It is giving him an interest even though I have to keep reminding him. Tonight he asked me where he was sleeping so his mind must be a bit muddled by the talk.

 

[AliceA]

I love your idea of enjoying the ship. I have watched people being herded on and off ships and thought how tired many of them have looked.
Sometimes less really is more.
Once we were on a barge sailing near Paris. We decided against a trip on shore, we had the boat to ourselves plus crew.
As we sailed on there was an amazing storm, steam rose as hail hit the water ahead, it had a magical quality we often remembered.
Where are you going?

 

[AliceA]

A positive user friendly web site you all may like is www.greatergood.com
It is a from Berkeley University.
You can sign up for a monthly newsletter, there are many things to look at and explore. E.g. a selfcompassion exercise, scientific research on the human condition, a good article on loneliness.