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Smudge
23rd March 2014, 14:54
As there are a lot of new people on the forum, I thought it would be an ideal time to mention a really useful book for those of us who find ourselves caring for our loved ones.

The Selfish Pig's Guide to Caring by Hugh Marriott is a really excellent book. It explains how to cope with day to day situations in a funny and practical way. It's also useful for friends and family as it gives an insight into what being a carer is like so that they can understand better themselves.

Circumstance being what they are, I no longer need my copy, so if anyone things they can make use of it please PM me your details and I'll pop it in the post.

Wendy :-)

magic
23rd March 2014, 16:32
I also found it really helpful but am not sure where my copy is now.

Magic

Smudge
23rd March 2014, 16:45
My copy has now found it's way to a good home

gerald
10th April 2014, 21:31
Hi Smudge. Took your advice and search amazon sotrying to read asand when, agree with didnt know i was so qualied lol. Best wihes Gerald

Billie
10th April 2014, 21:54
Hi All
I got the book on my IPad and am really enjoying it - thanks!
Sarah

magic
11th April 2014, 05:08
I have recently found copy if anyone needs me to send it to them I would be happy to send it.
Magic

ccvsd
11th April 2014, 12:35
Thanks smudge,
I will order one for my family
x

Andrew
11th April 2014, 13:55
Hi all,

A few second hand copies here going quite cheap:

http://www.abebooks.co.uk/Selfish-Pigs-Guide-Caring-cope-emotional/7363558862/bd

Best wishes,

Andrew

Davec
11th April 2014, 15:46
Thanks to Smudge, she was kind enough to let me have her copy, it is my bedtime reading and whenever I have those weird feelings

Dave

Cookewitch
11th April 2014, 16:50
I wish I'd known about this whilst I was caring for Dad. I'm too scared to read it now and realise how crap I was and how I could have managed better....x

Davec
11th April 2014, 17:18
Cookewitch, you were not crap and you managed as well as any body could! The book would confirm you were human and an amazing caring person x

Jangobie
11th April 2014, 18:35
Cookiewitch, you cared wonderfully, I read all your posts and a lesser person would not have coped with the problems that were thrown at you. I know your Dad was so proud of you. I hope you are keeping well. Love Diane

pete
11th April 2014, 20:45
I wish I'd known about this whilst I was caring for Dad. I'm too scared to read it now and realise how crap I was and how I could have managed better....x

Hi CW,
Hindsight tis a wonderful thing, It was obvious from your posts how difficult you found coping with this condition ,watching a loved one endure this disease has got to be one of the hardest things to expect a person to face, and in my book you came across as a very very competent loving carer, no one could have done more in the time you had to learn and cope, so definitely not crap in any way CW. Look after yourself

Regards
Pete

miranda
12th April 2014, 11:02
Agree with all the above. No one could doubt the love and care you gave.

Cookewitch
13th April 2014, 19:05
Thanks guys, it wasn't my intention for people to try and make me feel better but I do appreciate it. I know I did all that I could but when it's all over and you can't change anything anymore I think it's human to think you could have done better....hindsight and all that.

I still miss him terribly.....always will x

Davec
17th October 2014, 23:08
My gp was interested when I told her about the book and bought a copy and will recommend it to other carers!

Alig2014
17th October 2014, 23:33
I will have a look on amazon x

Night walker
18th October 2014, 12:47
Hi
I got this book on DaveC's recommendation. It did make me laugh in places as I recognised myself. I can relate to a lot of it but cannot read it all the way through yet. I still feel selfish and I am completely useless as I cannot do half the things he could. I dread the day and loathe the nights listening to his breathing and miss his snoring. I hate this naffing disease every day and every day I wish we were both somewhere else, disease free and laughing. Everyday I look for new signs and symptoms wondering what I should be doing to make the next stage more bearable for him, setting up little things like new things in the shower so he doesn't have to bend for his toiletries. Different drawer positions for his clothes so he does not have to bend but I have to watch him struggle and struggle all the same trying to get his socks and shoes on. He now falls over even with his stick and having his braces on, he struggles to get in and out of the car, refuses one of those twisty seat things for the car and every other aid he could have to make things less difficult. I pretty much disgust myself as I find myself loathing the next symptom presenting and his next slurred word reminding me every second, his avoidance of going out so no one knows what he has got and his inane resistance to aids and help. My poor man is so quiet and stoic, I try to talk to him but he gets very defensive and says I make him feel worthless talking about aids and supporting things.
It will have to get to a stage where he is on the floor unable to move before he gives in.
I cannot physically support him, he is too heavy even to hang off my arm to him to get out of the chair and no he will not have a different chair to help,with that. He struggles up the stairs and is refusing to have a second handrail put in, we only have one bannister. The only thing I am good enough for is cooking real food using honest ingredients and fetching like a dog. . How I love my dogs more than ever these days and relish our walks alone, so I am moving on from fretting about doing the things we did together to just doing them on my own. I am starting to look forward to me and the dogs time every day. Not good really.

Enjoy the book it is good, I probably need to re read some of it but some days I just want to scream and hit out and guess today is one of those days.
Happy Saturday roll on Monday.
Sylv xxxx

Springtime
18th October 2014, 13:18
Hi Sylv,

You are an honest, caring human being so don't even start to feel ashamed of the way you feel because all these things are natural. I feel for you and wished I could spend time having a coffee (or a Wine) and chat with you. I am sure he doesn't think about you as a fetcher and carrier Sylv, he is probably feeling completely out of his depth. Have you been offered any sort of Counselling, this may be of help to both of you. I have had one session a couple of weeks ago, the Counsellor probably got me down as a "Barm Pot" as I was shifting from being totally practical and in control, to a blubbering wreck, and then quite upset that time was being stolen from Jim and I. As your hubby doesn't want any aids at present, my hubby is in denial and sometimes its so hard to know how we should be handling all these emotions. Theres no training for this journey! I so wish I could make some helpful suggestions Sylv, but all I can say is stay focused, come on here as often as you can (I am always on here, MND has become all consuming for me, more than Jim) we need to try and understand this MND. Sending you a massive hug and here any time you want to chat. Hugs and more Hugs Spring x

ccinjersey
18th October 2014, 13:50
I say this with love and respect for you two amazing, caring, selfless Ladies. You both can use a day or maybe a weekend at the spa, go together if possible, for a little rest and relaxation, regroup, find a little peace of mind, and hold onto yourselves in all this. You’re the captain of the ship, if you go down the ship goes down. Remember that movie ‘Steel Magnolias’? You must now be your inner strength which is made of steel. This illness is about your husbands, but you’re the other half in the equation so it’s also about you.

I have three dogs Slyvia , and always look forward to a walk alone with them. They keep me sane thru the insanity of life. Take what you need for yourself wherever it comes from, no better place then man’s true best friend :)

Much love sent to both of you.
CC xxoo

Terry
18th October 2014, 14:08
Sorry CW;

We often forget to mention so many things to newer people, there's so much to take in.

Love Tell

Treelover
18th October 2014, 14:15
As a sufferer I have had to accept all the aides but..... In my time. I did not want to be rushed into anything and once I needed things they were invaluable. I think maybe let him make the requests for help rather than try to pre empt. We, sufferers I think, want to make our own decisions still and I personally hate fussing. We have lost so much and know we are to lose more so want to retain as much independence as we can, even if it takes much longer. Getting dressed by yourself is important, a sock puller upper helped me for ages, but gradually I had to ask for more and more help and now am dressed by my carer. My husband has been great at letting me run this show, he sorts it all out but let's me decide when. I am now wheelchair bound with many aides but they have only come as needed. From your side I understand you want to make it easier but try to sit back and let him struggle until he can't! Don't watch him either, let him find his own way to do things, if you can. Good luck.

ccinjersey
18th October 2014, 15:50
Hi Treelover, All

You made a good point about those that have this illness deciding on their own time what is best for them and when they decide they want and need it.

Have a bit of a concern with speech aide for my friend. An appointment has be scheduled for the end of month for her to meet with a rep from the tobii eyegaze system, and the speech therapist. Her partner insisted on setting this up now because her speech has gotten to the point where no one can understand, and her hand mobility extremely poor now.

My dear friend does not know about this appointment. Wants nothing to do with a speech device, insists she is fine thank you, and her speech is getting better. Her partner’s plan is to put her in the car the morning of appointment and just bring her there and not tell her about it till that morning. He feels if he tells her now about appointment he will have to deal with the anger and denial over it from now till then.

I’m not a fan of this plan, I think it’s an ambush and not fair to her. Yet I understand why he is going about it this way, he is the sole caregiver needs to have a way to communicate with her. Also getting authorization for this system thru insurance can take anywhere from six to eight weeks. He wants to have this system ready and available immediately for her and wants to get the ball rolling.

He asked me to come on this appointment with them. I feel if I go without her having prior knowledge of this appointment I’m betraying her trust in my love and support.

Does anyone have a better idea?

CCxxx

Trevorhb
18th October 2014, 16:50
Pat you are so right, we need our independence and the more we can decide and do ourselves the better. Thank you so much for the welcome and advice this afternoon.
Trevor

Nettie B
20th October 2014, 12:17
My copy of "Selfish Pig's Guide to Caring" has just arrived in the post. I hope you don't regret my buying this Trevor .. ha ha!

Davec
20th October 2014, 12:58
Sylv, sorry I havent replied to your honest and heart rendering post, but I ve been a bit preoccupied with Sharyn! You are an amazing human being doing a job no one has trained you for! Stick with the book and even better the forumites! I do recommend kicking a plant pot over the fence, worked wonders for me! Xxx

Nettie B
20th October 2014, 14:15
Ouch!!

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