In praise of carers!

As I said up thread witzend, the Akzheimers Courses here run a session for the person living with dementia along side. We also run courses for people with an early diagnosis.

Having done dementia care myself, I do sometimes wonder how carers manage to attend such sessions. So often it's nearly always down to one person, and the hardest thing can be finding someone to take over for a while, if the person really isn't safe to be left alone for any length of time.

Don't mention that dillyduck. Carers are silenced, especially from those more privileged. I'd like to say it's the modern way but it's steeped in misogyny and we'll, just privilege. You'll see this for yourself when people react to what I've posted.
It will start with shame to create guilt

Carers are 21st century slaves, no right to holidays, sick leave or respite, and when you start getting your pension, you lose your Carers Allowance!!!

Lucky girl, never apoise for taking the decision you have. I'm in a completely different position from other that have posted on this thread as I've been a sibling carer to a late sibling and then a carer to a child of my own who had a disability, which has been a long term caring role. I now outsource day to day personal care for my child whilst managing their medical appointments, all over wellbeing and care from others. I'm normally treated with contempt for outsourcing her care and yet most people's experience of care is short not long term. Oh well, I have a carers group where we can all put the world to rights never tell a carer how they should or shouldn't feel. It takes away your choice and however you feel yourself is real and our circumstances, financially and emotionally and eben in turns of support are not the same. We are not invisible and it's important to ask how we are.

Yes the carers are nothing less than saints but the Government thinks that "feeling needed" and "virtuous" are all the reward necessary - hence the cruel cutting and cutting and cutting of finances and resources. To even enquire about possible benefits or grants risks attracting the label 'mercenary'.

General Election please - I'm sick of hurtling back to pre Welfare State Dickensian penury and poverty.

Have not gave!!

Merlot, that is sad to hear! You gave had a hard time lately.

I’m wholeheartedly with you all about the immense effort made by carers.

I cared for more than 40 years for a parent with a chronic debilitating condition. Fortunately I cared for a ‘loved one’ & that was hard enough. I did meet people - through my local Alzheimer’s care support group - who were honest about the additional burden of not loving the one they cared for.

So, here’s the CarersUK forum: www.carersuk.org/forum.
Please pile in.

You may find this very short movie of interest: www.youtube.com/watch?v=gHQ6hQ3SQUM

#ShareThatYouCare
#TwoSidesOfTheStory

Please send the video link to friends, family, fellow carers, colleagues & anyone else you think may need either to know they are not alone in caring OR needs enlightenment about caring. Tweet & ask for retweets.

Wishing you well Merlot - if you have decided to downsize it is the perfect opportunity to choose a “future proof” home, however hard they are to find.
Try not to worry about the future- I used to dismiss such thought as bridges we would cross when we came to them.
Well we came to them, and I think the outcome has been no better or worse than if we had worried ourselves sick. At least I hope Paw didn’t worry too much - I dissolved in tears though when I found he had done everything he could to protect my future.

As a carer for our late son for 18 years I have massive respect for carers of adults.

I did so wish we had been able to have someone in to care for my late husband (Parkinsons, vascular dementia and the oesophageal cancer) people tend to think Parkinsons is just tremor and difficulty walking ,,,they tend not to know about the aggressive behaviour towards those who try to care. He refused totally any help at all except me, 24/7 and following several falls the docs said he was no longer safe at home so I had to find a care home for him which he hated …..and so did I. It cost me (he never saved a penny all his life !) nearly 4,000 Euros a month....I DID feel guilty but it was much better when I visited as we could spend time together playing his music and talking …….sadly he was also aggressive with the nursing staff but they said not to worry, they were used to it ! So, to all those still caring ...well done ...people do not realise how difficult it is unless or until they are in the same position.

I'm coming to terms with the realisation that I am now full time carer for DH who is suffering from heart failure - amongst many other ailments. This means we will eventually have to move as our very large garden and field are too much for me to manage.

Sadly our long term plans for support in the future had to be abandoned when our DD, who lived next door, died and the grandsons are quite rightly moving on with their lives so there is going to have to be a plan B.....If only I could work one out.

The caring bit is OK at the moment as DH doesn't need lifting and can shower himself so long as I am nearby. It's my anxiety over the future that's keeping me awake at night.

Thank goodness I am fit and healthy. Long may it last.

I am a carer for my husband and have been for a few years now. I take my marriage vows very seriously, till death us do part. That's not to say I don't have my off days because I do, but I consider it a privilege to care for him.

g23, your point about people having caring forced on them reminds me of the woman on one of our courses who objected to the term 'your loved one' being used. She said that she should have left her husband 40 years ago and was now paying the price for not having the guts to do it.

We try not to use the term 'loved one' any more.

The Carer's courses are run by the Alzheimer's Society and are for 6 weeks. They run alongside an activity group for the person living with dementia.

At least that is what currently happens in Leicestershire though obviously it depends o what is commissioned in your local area and the funding available.

I feel a particular pang for the young people who care for parents or older siblings; sadly their lives are spent in a way that nobody would have chosen. Sometimes they seem to fall through the net and spend years without the normal life that a teenager - or even younger in some cases - should have.

Not every carer is a sainted person who has willingly sacrificed their own life to become full time carer to their loved one. Many have the role of carer forced upon them simply because they are the only relative. friend or neighbour, who lives nearby or is available. The person needing care is not always a sweet old lady or doting grandpa, who is grateful for the care they receive. They may have always been cantankerous, domineering, aggressive or their illness may have caused them to become so. The main or sole Carer may have health issues of their own, other unavoidable commitments. Promises to share the care made by other relatives or agencies, have a habit of fizzling out very soon.

Kitty mentions the lovely carers who have attended her courses. This makes me very jealous, as during my 5 years of caring 24/7 for OH, I could so seldom attend courses or jollies for carers because no alternative care was on offer.

I cared for my husband for fourteen years, he had a public face and a private face,and it was very difficult at times dealing with the private face.
Everybody used to ask how he was and were full of concern for him.
On the odd occasions when someone asked how I was I knew that they had been in a similar situation and understood the mental and physical effects that being a carer can have .
Now I never forget to ask the carer how they are feeling and I can see that they appreciate it as I did.

boodymum67 - three cheers for your hubby!!

This thread is inducing a degree of guilt for me as I have just relinquished my caring role for my OH to a nursing home. Such a very hard decision and I am sad that I could not carry on, but I have my own health problems as well.

But the way I look at it, we took the right decision, and there is more than one way to care for a loved one. Finding the perfect place for them, visiting, supporting etc. all represent a different way of making sure that the person receives the best of care.

One big plus is that we can now have a better relationship. I make a point of never asking him about his bowels etc., but rather have normal friendly and happy conversations untainted by the need for me to insert a suppository! Others now take that responsibility and free me up to spend good times together.

I too take my hat off to those who soldier on with this challenging task at home; and to the good carers in homes who go out of their way to make the lives of those they care for special. I have been overwhelmed with the kindness of the carers in the home, not just to my OH but to me as well. They do a difficult task on a low wage, but still manage to smile, even when being asked to do the same things over and over again.

Lots of cheers and for all who find themselves in a caring role - and remember to take time for yourself, even though that is hard to achieve.

witchypoo, the Alzheimers Society are always looking for volunteers especially for their Befriending and Side by Side service. Go on the website for branches near you.

Witchypoo, I remember reading about an organisation (maybe Age UK?) who want visitors for housebound people. Would you feel able to do something like that?

When husband died i felt totally useless. All this time on my hands. What do i do now. Still struggling over a year later

I cared for my parents for 5 years. They lived close by but I could never rest in the evening because I was constantly called on to pick them up off the floor, clean them up after accidents, put them back into bed in the middle of the night and one time had to take my dad to hospital in the middle of the night as his catheter had come out. When my dad asked me to find a home for them I was sad but it was such a relief and I could then again enjoy their company without the stress. My dad died aged 97 last year and my mum is going strong at 99 but has severe dementia.

I admire people who carry on uncomplaining especially young people who should have their own lives to lead.

Yes, unsung heroes who often hide the reality of their struggle from others.