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Carers - Is there a formula? Friday October 21, 2016

I am my husband's prime carer and I now have a week of respite, a time to lick wounds, sleep, and take stock.

Caring encompasses parents with children with birth defects, life threatening illness, like leukaemia, handicapped, physically or mentally. Then there are teenagers who have had horrific accidents, often with motor-bikes. Move on to strokes and heart attacks affecting those still of working age and the devil of old age, dementia/Alzheimer. And, always, as we see here on Moodscope, the long-term effects of recurrent depression. We all have common problems:

1. Finance. News today was of crisis in the UK National Health financing. It is, of course, the 15th anniversary of the worst terrorist attack ever, the twin towers. How many people are still physically or psychologically suffering from it? Carers need help – cost in time and money – often, one's 'right', but no resources, no help. Currently the Paralympics focus on what CAN be done, but so much input, sacrifices by the 'carers' and huge cost of specialist equipment and transport. Carers in all categories above will have their own potential reduced, earnings and pensions. Ditto sufferers from all those categories.

2. Your own 'space'. I hate the expression, but we all need it. A brisk walk – half hour lying down with a book – even browsing in shops instead of a hurried 'raid'.

3. Spiritual – this translates to the French 'esprit', not necessarily religious. My husband now finds comfort in church, so it will be top priority. It may be singing in a choir, support groups, yoga, meditation, therapy – they all need that rare commodity – free time.

4. Motivation – my big challenge at the moment. For all the above categories it does not matter how good the carer is, or medical and nursing facilities, if the 'sufferer' will not make their own effort, there is no point in nagging them until you are in a frazzle.

Anybody out there got a 'recipe'?

The Gardener
A Moodscope member.

Thoughts on the above? Please feel free to post a comment below.

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Eva Fri, Oct 21st 2016 @ 7:18am

Hi Gardner, with reference to your post yesterday have you tried this group, it's specifically for alzheimers carers

Thanks for your blog, it's good to look at the fundamentals required for daily living and support. Sometimes assessment of these allows you to take stock and realise how lucky you are, or maybe that you can make a change.

I realise that I am one of the fortunate ones I am not wanting in all 4 aspects and I feel very grateful for that. I would maybe add a 5th ingredient, companionship through friends, family or a partner.

Leah Fri, Oct 21st 2016 @ 7:35am

I think this is where the personal is the political- remember the saying from the 1970s.
Carers save governments so much money and provide an essential service so they really should be supported emotionally, financially, socially and in every single way. Our communities would not function with out tireless carers like you gardener.People should lobby their local members to make sure that carers get adequate respite.
Carers responsibilities only seem to be covered in the media when there is a terrible tragedy when a carer just can't cope any more.
So much government money is spent on useless things but as our population ages we really need to to support and treasure our carers.

Remember that saying that "It takes a community to raise a child", it takes a community to support a carer.

Take care xxx

Hopeful One Fri, Oct 21st 2016 @ 8:03am

Hi Gardner- thank you for your blog which resonates with me as I was in the same position like yourself until I decided that my wife, who has Alzheimer's Dementia, needed nursing care 3 years ago. I had given it my best shot in caring for her for 7 years and could not carry on any longer on my own.( I had already gone through a depression in the early stages of caring due to this life event resulting in the loss of my hopes ,dreams and ambitions ). Fortunately I am not financial pressure partly or largely because my wife's care is funded by the NHS. The only things I can add to your recipe is never to lose Hope(even in your darkest hour) that things will get better, compassion always( I achieve this through a compassion meditation) and get as much respite as you can from who ever is willing and able to help you.

The Joke Squadron was grounded for a while but is back with this topical offering.

Hillary Clinton and Donald Trump go into a bakery shop.
As soon as they enter the bakery, Trump steals three pastries and puts them in his pocket.He says to Hillary: “See how clever I am? The owner didn’t even see anything, and I don’t even need to lie. I will definitely win the election.” Hillary says to Donald: “That’s the typical dishonesty you have displayed throughout your entire life, trickery and deceit. I am going to show you an honest way to get the same 3 pastries without stealing or lying, and also prove that I am much clever than you!” Hillary goes to the owner of the bakery and says: “Give me a pastry and I will show you a magic trick?”
Intrigued, the owner accepts Hillary’s offer and gives her a pastry. Hillary swallows it and asks for another one. The owner gives her another one. Then Hillary asks for a third pastry and eats that, too.
By this time, the owner is starting to wonder where the magic trick is and asks: “What did you do with the pastries?”

Hillary replies: “Look in Donald’s pocket!”

the room above the garage Fri, Oct 21st 2016 @ 1:07pm

J'adore! :-D

Maria Fri, Oct 21st 2016 @ 1:58pm

Thank You HO! You've given me a laugh over our upcoming "deplorable" elections.

Sally Fri, Oct 21st 2016 @ 9:12am

1. Get more respite.
2. Get more respite.
3. Get more respite.
It's the only recipe I know.
Unless you want to put your mental health in grave danger.

Vivien Fri, Oct 21st 2016 @ 9:14am

Hi Gardener, I too am a carer, for my 91 year old Mum. Have been full time for 3 years. She is currently in hospital, having suffered a fall last week. I know she is in the best place for care as I know that I could not do it. I agree with your recipe, Finance, Spiritual, Own space, motivation - can I add understanding? The latter to apply when others not immediately involved, believe they have the answers. They need to understand what is involved, and how they could help, not just go charging in. I definitely need my own space. It allows me time to think and gather my thoughts, and catch up.
Another supportive group is Carers UK. A chance to talk with fellow carers and get support.
Keep smiling - you may not always feel like smiling but you are not alone! Take care
Viv xxxx

The Gardener Fri, Oct 21st 2016 @ 9:55am

Thanks already for those super replies. HO you must have the richest vein of humour (??) ever with the crazy antics of the Yanks. Love today's. I want to briefly explain yesterday's 'outburst'. It was 'lines on facing winter'. Mr G is obsessed with being cold. I know the elderly and immobile suffer from the cold. But he will turn the heating up full (whilst swearing he does not know how it works), I hide the electric fire, but he'll plug that in as well. He will wear an outdoor coat and cover himself with a blanket. Three times he's virtually passed out with heat exhaustion. He'll go into a room we don't use, and turn the radiator on full. Last two winters heating bills astronomical, and I suffered permanent headaches - he also abhors fresh air. I remonstrate at the cost - we've got loads of money (we haven't). I say I care about the planet - he, who worked in agriculture and ecology says the planet does not matter. He will want a light on, then decides not, and turns the whole line of plugs off at source - then I discover the phone has had no current for hours. Once it gets dark we won't see people going by in the road. He now hates me watching TV, and wants something every 5 minutes. Hence the struggle to be understanding - and to obey the doctor's dictum who told me about Mr G's state 'soyez gentille' - be kind - hence being scared of losing my christian charity.

Sophie Fri, Oct 21st 2016 @ 11:08am

Hi Gardener, I'm not a carer and have not been close to being in your situation, but I read your posts with empathy and a longing to help you and others in your position, as I'm sure many other Moodscopers do too. I read our 'outburst' yesterday and can see what you mean I think, the triggers for your low moods etc are not something which will be truly lifted over time with medication, or positive thinking, or any other methods we try. although they may offer you interim help, they of course don't touch the root of your problems, which is the disease that is robbing you of your dear husband. Hopefully although you may not resonante with many of the blog posts or comments on here, we can still offer you a little support and words of comfort to help you through the next minute/hour/day/whatever you need. Are you also a member of any other forums more geared towards carers and in particular carers of people with dementia? I sincerely hope your week of respite is enjoyable and allows you time to be 'selfish' for a while, put yourself first and recharge in whatever way you think best. 'You can't pour from an empty cup'. take care x

Leah Fri, Oct 21st 2016 @ 9:01pm

Sophie, I am touched by your compassion.

Holly Fri, Oct 21st 2016 @ 10:57am

Humour, all the way.

My dad was in his sixties when he had Alzheimer's....I was 15 at the time, my younger brothers were 13 and 8. At the time there were (and I'm not exaggerating) no resources to help a young family deal with Alzheimer's (I understand now there is...I'm 23 now).

My mum was the main carer. She was like superwoman- caring for my dad, and us lot, while holding down a job (even if she had to cut her hours to look after Dad more). We had very little support, even from professionals. We were literally stuck in a bubble going through it alone. We had all the same problems as you...we worried about money and the cost of care (nursing homes are very expensive and often not worth the money). 'Respite' involved my mum going to the hospital where my dad was staying to bring back clothes to wash and take in more (because they did not wash clothes for those in respite, only those that lived there for some odd reason). We lived like that 24/7 until my dad passed away a little before my 21st birthday from end stage Alzheimer's (we looked after him really well, so it actually was the Alzheimer's that took him, not anything else).

For us, we had to see the funny side in things. There really was no other way. As the saying goes, if you don't laugh, you'll cry and that's what it was for us. It was painful, the most painful thing I have ever been through and though I would never want to go through it again with anyone else, I would do it all over for my Dad.

Sophie Fri, Oct 21st 2016 @ 11:16am

Such a touching post Holly, I'm sorry you and your family have had to experience all you've been through x

Hopeful One Fri, Oct 21st 2016 @ 2:56pm

Hi Holly- I was touched by your story . An honest tale being plainly told made it speed best. Bless you.

the room above the garage Fri, Oct 21st 2016 @ 8:07pm

Hello Holly, I'm catching up with the replies. Incredible reading your story. You have seen a lifetimes worth of life in your 23 years. I'll bet you are a close family because of it. Love to you all, including your dad for I'm sure he's around, love ratg x.

Leah Fri, Oct 21st 2016 @ 9:02pm

Holly, Your story moved me. Thank you for expressing your experience in such an articulate way.

Mary Wednesday Fri, Oct 21st 2016 @ 11:04am

I cannot contribute anything to this discussion as I am the cared for, really. Only that having as many sources of support in all areas as possible. I know we help you, but you in turn contribute so much to us. It is important to know you are valued, not just needed. Your husband is beyond valuing you, but your friends do and we do here. I am sorry we cannot do more to help.

Holly Fri, Oct 21st 2016 @ 10:54pm

I just want to say that your views do matter, even if you are the cared for. I say this because in a way, I too am being cared for. What happened with my dad and his Alzheimer's is actually the tip of the iceberg that I am comfortable talking about. I tried to carry on for as long as I could, but I burnt out, so now I am being looked after in a way.

Leah Sat, Oct 22nd 2016 @ 7:44am

Holly, I admire your strength and maturity. I look foward to reading more of your words. You have experienced so much for one so young. Take care. Thanks for being hinest and sharing your thoughts with us.

the room above the garage Fri, Oct 21st 2016 @ 1:12pm

Hello TG, my recipe is, I think, the same as the thought for today. 'Press on' is often all we have. If I was near you, I'd like to think I would deliver extra homemade soup and other foods for you both. It supports in so many ways. Love to you x.

The Gardener Fri, Oct 21st 2016 @ 1:14pm

I've already been invigorated - positive (leah) DO something about evenings. Treats. I hate being addicted to anything - but a daughter has me hooked on 'strictly'. Tomorrow night, even if I lock Mr G in the bedroom I will enjoy it with a glass of wine. Anyway, must know if Ed Balls, slated by the judges but loved by viewers can possibly carry on. Harnessing anybody who does not run fast enough. Holly, my maternal grand-father started dementia (called then) at the same age as your father - my Nan had nine children. He would go into the street in his nightclothes. I son't know what happened to him - his daughters never spoke of it - that would have been the late 1920's.

Holly Fri, Oct 21st 2016 @ 10:48pm

I'm sorry to hear about your maternal grandfather. I imagine that Alzheimer's has always been around, but very poorly understood. I have heard a few stories of people with Alzheimer's going missing and not being found. Its a horrible part of the disease- my dad would often go out for no reason, until one day, he couldn't get back. So we had the police out and everything. Terrifying experience, but thankfully he was safe. We literally did not let him out of our sight then! The one thing I am very grateful for is that my dad was not aware of his illness at all, and in fact, seemed relatively happy in his little world- he was always smiling, right up until the night he passed away.

Maria Fri, Oct 21st 2016 @ 2:04pm

Hello TG - I am glad that the wonderful comments above have rejuvenated you. I want you to know that I am constantly impressed and inspired with your strength to carry on in the face of adversity. Hugs and love to All :)

Down under girl Fri, Oct 21st 2016 @ 8:59pm

I feel very humble reading people's experiences.
Gardener, I was wondering whether you feel that other people understand what you are going through and what dementia is.
26 years ago when my mother first started showing signs of dementia no one in my family or the medical profession believed me. They all thought it was in my head and because I had the bipolar label my concerns were dismissed. People would say , : what does it matter if she forgets a few things" but she was forgetting to shower for weeks or she would have 3 showers in 30 mins. The would say "she has always been challenging" but this was different.
My dad was the main carer, but he was in denial although he would ring me up a lot and complain. In ten years she would spend two nights away from the house. Once we managed to get her to go to a cosuins 21st and people said" why are you complaining , she is having a good time and seems fine" She was ok but they didnt know it took me 6 hrs to get her ready to go out and as soon as we got home she forget she at the party.
I provided respite care for my mum. In fact the moment I walked in the door my dad would walk out.
So me 15 years after she died there are still family members who are in denial so we dont bring up the topic. That is why I am using a pseudonymn but people will know who I am.
My heart goes out to you and I hope you find the support you need.
When I read some of your descriptions of your husbands behaviour I nod and cry.
The one place I felt who listened to me and believed me was the Alzheimers help line who listened to my tears and made me feel I was not crazy.
I think there is far more awareness around dementia now and less stigma but I think many do not understand the frustrations.

Holly Fri, Oct 21st 2016 @ 11:05pm

I am sorry to hear your and The Gardener's experiences. My dad's own sisters never bothered to visit him, let alone help out. In fact, most of his own family, didn't turn up to the funeral. I have since then practically vowed to never bother with them. I personally feel that life is too short to be living in ignorance. Imagine if everyone did that...the world would be such a cruel and cold place!

The Gardener Fri, Oct 21st 2016 @ 9:40pm

Down under girl - you have really suffered the whole lot - I have five children - 3 'in denial'. The disease is real - no doubt with Mr G - professional corroboration that I am not imagining things. The awareness is better BUT the statistics are scary - we are all living longer, so as Alzheimers usually comes with age more people will suffer. Countries are struggling with health care - financially and finding carers - so, naturally, and willingly, the task falls to family - but oh, hanging on to temper, courage, patience and nerves gets tougher as the disease worsens - as HO has explained so well. Thank you.

Caroline Ashcroft Moodscope Fri, Oct 21st 2016 @ 10:39pm

I would just like to say thank you for everyone who has replied. Such touching stories. Carolinex

DAVE Sat, Oct 22nd 2016 @ 8:08am

Hi Gardener,
How on earth can you and I be more effective in the service we offer others, without ourselves becomming 'Pulled down' into the depths of depression, in the process as we, struggle to resurface.

I expressed last week answer to Leah's blog...I think it was, how I live my life, it's an a opinion, my opinion only, my daily routine. It works wonderfully well for me. But it may not suit everyone, PROVIDING they give it at least 1 month's trial.

Basically to gain control over the mind, I deal with the most worrying adversity, problem FIRST, Taking control of ASSUMPTION, and getting it off my conscious and subconscious mind.

I then take each issue in my own time as soon as possible, (NEVER PROCRASTINATING) my daily list is overcome, and I now am PREPARED for the next problem, catastrophe, which being in control, am able to give it the FULLEST of attention as I have 'Cleared my Deck' so-to-speak,

I have now obtained CONTROL over my mind, and am able to utilise that organ in the chest , the heart, for which it has been given.

This order applies to medical health, finances, relationships, family issues, keeping rooms tidy etc etc. all of those chores necessary to keep the 'Plates Spinning in the Air'.

It has an amazing personal affect upon my persona, it prevents the 'INTROVERT' from surfacing, I don't have time to 'Worry about or assume that the worst will happen, because it never really does happen as we imagine, it's really all in the mind.....Becoming extrovert is really as simple as that....LOOKING outwards.

But to serve is to do so without expecting ANYTHING in return, if you're religious, you'll be aware of minor and major miracles, happening to you or to those you serve.

Best of all it attracts others to question why you're so happy ! !

We all are searching for that 'INNER PEACE and INNER HAPPINESS, which can only be found in looking after those less fortunate than ourselves....

Doing the right thing, I never fear God or man.

Thank you Gardener for your lovely blog.


Orangeblossom Sat, Oct 22nd 2016 @ 10:17am

Thanks for your analytical and careful consideration of the needs of the carer. Sometimes we forget that we also need to be refuelled and refreshed. A day of rest in order to be reinvigorated and renewed is invaluable. Also to have some fresh air and exercise. Thanks for the reminder.

Sal Sat, Oct 22nd 2016 @ 6:36pm

Dear Gardener, I'm finding your blog hard to get out of my mind. You often seem to make light, or at least light-hearted, of the difficulties that Mr G and his illness raise, yet your experiences still sound heart-breaking, maddening, and indeed if I were in your shoes, almost despair-inducing.

I doubt if there is a formula for support that fits all carers. But I am tempted to suggest one thing that I think must make a huge difference (I say 'must' because although I've done my share of caring for elderly parents and friends I haven't been the main carer, nor had to deal with anyone suffering dementia, so it's just what I imagine). The biggest thing for me is not to feel alone with it (and 'it' can cover all sorts of troubles).

The value of having someone who can listen without judging, to whom I can say all the unsayable (unthinkable?) things, which I wouldn't dream of saying to the person I'm struggling with, is hard to overstate. It needs to be a person who knows I don't mean them - I *do* feel them (temporarily), but I don't mean them. But if there is nowhere where I can say them out loud, they stay inside me, sapping my energy (at best) or generating bad temper (at worst). Once they are out of my system, there is more space for compassion to flow back in.

Sounds great eh? - I'll let you know if I get to test it in extremis and see how far it works :)

Thanks for your honest, warm and human posts. I always enjoy reading them.

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