Tuesday, 13 February 2018

Who cares for the carer?

My recent post When Life Becomes Overwhelming was extremely popular judging by the number of people who have read the post. Bloggers can have a look behind the scenes at their statistics and can tell which posts they write are more popular than others. That post quickly moved up to the top of the list of 'Popular Posts' which you can see on the right sidebar and it looks like the subject is even more important than cutting down on sugar and growing vegetables in styrofoam boxes :-)




There were a couple of comments made that I would like to mention. One was about an organisation I hadn't heard of before called Generation Next which deals with the mental health of children and teenagers which you might find helpful.  Often mental health issues come to the fore in the teenage years and parents have no idea what is going on so it is very helpful to read websites like that to get some insight into what the family is dealing with and where to go for help. Mind you, getting help is easier said than done.

 

 Another comment mentioned that one of the organisations I mentioned had actually made things worse for one person and sadly that can often be the case. It can be difficult to find the right organisation and the right person who just seems to click with the unwell person. It can take years for that to happen, if indeed it ever does and in the meantime the family continues to care for their loved one year after year and it does take its toll eventually.

 

So how does a carer cope and who cares for the carer so that they don't end up feeling worn out and  depressed themselves which is more common than we would care to believe.

To answer the first question I would say it is very important when a diagnosis is made to do as much research you can as often a GP really isn't all that helpful I am sorry to say. If you can find a support group online for carers for the specific illness your family is dealing with that can be like a breath of fresh air to know that someone else is dealing with the same issues. There is much more information out there these days than when we first started our journey but personally I found this support group to be a lifesaver during those early stressful, confusing days.

Another tip is to keep a journal...every day if you can. This is invaluable when you visit the doctor as you have a record of changes in behaviour and symptoms the person is experiencing. It is so easy to forget important issues when feeling stressed.

As a Christian I searched online for anything available and came across Pathways to Promise which educates pastors and congregations about mental illness and advises what to do in a crisis situation when a person becomes unwell etc. Unfortunately at the moment I can't get anything to download on the site so there may be a problem there at the moment but there used to be a wealth of information available on there.



 I just came across Grace Alliance which looks like a great encouraging site and is recommended by Kay Warren who lost her son to depression a couple of years back. She also has an informative website Kay Warren Mental Health.

 

 If you have a loved one who refuses to get treatment because they don't think they are sick, I can highly recommend Dr.Xavier Amador's book I Am Not Sick I Don't Need Help: How to help someone with mental illness accept treatment. 

To answer my second question 'Who cares for the carer?' now that is a tricky one. As I mentioned in my other post there are organisations like ARAFMI which are specifically for carers and they have support groups in many towns and cities plus workshops and can arrange for respite for the carer and the person they care for as they have a number of respite houses. Of course this may not suit the unwell person and they quite possibly will refuse to go resulting in no respite for the carer.




So....what to do if the carer needs TLC? All carers know they should take care of themselves by eating healthy foods, doing regular exercise and mixing socially but often don't do what they know they should do as they are too tired, too busy, too down and so on.

 Caring for someone who is unwell is very taxing over a long period of time so it is encouraging to have a friend to talk to who understands what it is like to be a carer although most people don't call themselves a 'carer'. Nurturing your spiritual life and becoming strong physically by exercising and eating well can be difficult as it takes time and effort but the benefits are enormous and, if you are in it for the long haul, it pays to take time to look after yourself even if it is just to meet up with a friend for coffee for an hour or so.

If you are a carer, what helps you in your caring role particularly if it is a long term role? 









20 comments:

  1. Nanna Chel,
    as a full time carer for two people I understand the stress. A hobby is also a good stress reliever, why I do so much crafts, gardening and a few social events when I can.

    Hope you are keeping as cool as you can. Looks like we are in for another hot day again today.

    -Shiralee.

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    1. Shiralee, only one more really hot day to get through before it 'cools down' a little. I am over summer well and truly.

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    2. I agree I am a carer 33yrs now and it has been arts and crafts that have kept me going. It is so important to remember that the carer is just as important as the people we care for.
      Jenny from Tassie

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  2. Hi
    Living with someone with a mental illness is very challenging. The person with the illness most times fails to recognise that their behaviour effects everyone around them. Most illnesses are treated with a pill, even cancer is understood, discussed broadly with treatment readily available. A person with a mental illness has far more hurdles to cross- recognising that there is a problem, finding a GP who understands, connecting with specialists, limited in rural areas. Financial burden - medication, specialist gap payments, treatment centre cost if no hospital cover. And the years it takes to reach a happier life. It takes a toll on the whole family but the alternative of losing a family member is far worse. Life is a journey with many paths, often acceptance of the situation and appreciation of the good days keeps a family together. My adult daughter has just returned to living by herself after 5 years back at home. Small but important steps. Erin

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    1. Erin, I take my hat off to people with mental health issues as they have so much going on in their head that they need to work through before trying to be social etc. We take for granted so much that we do without even thinking about it.

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  3. Great post Chel and very informative. Going along to my first Arafmi support group meeting was wonderful. I decided to speak at that meeting (even though there was no insistence that I do so) and watching the reaction of the other people was so reassuring as I realised these people knew exactly what I was talking about as they leaned in and nodded every now and then...they weren't shocked at all. Their workshops also helped me so much and I could also turn to the other members of the family who had accused me of 'doing nothing' for the family member, and say, yes, I am doing 'something'! Things are on an even keel at the moment but I know that can change and I'm ready for it...again!

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    1. Maria, I agree that the ARAFMI support groups are so very helpful, especially in the beginning when people are trying to work out what exactly is going on and it is such a comfort to find others who totally understand what we are going through.

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  4. I'm sure your post has been comforting, nourishing and beneficial to a whole host of people Chel. Well done for taking the time to care. Pauline xx

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    1. Thanks Pauline. I hope you aren't freezing down there in Tassie. LOL! I read that there might be snow.

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  5. Hi there. Thanks for the post. If there are any carers in East Sussex reading this, just to flag that we're here to help you - a local charity called Care for the Carers. We offer fully funded support, counselling, health and wellbeing activities and more. https://www.cftc.org.uk/ All the best, Annie, Care for the Carers

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  6. I was raised by someone with a mental illness, due to their government funded, institutional care in childhood, where they were habitually abused. It normalises suffering, and therefore, makes it challenging to recognise. Thankfully, the govt wised up to its mistakes, and started to offer those abused children, free counseling as adults. As well as their descendants. Of which, I have received one session.

    Rather than look at my situation, as who cares for the carer though, I like to think of it as we should care for ourselves, first. Because we cannot take care of someone else, if we aren't able to recognise, we need to take care of ourselves. So in every caring role I play with others, I make sure to give myself a caring gesture as well. Even if it's just sucking on an ice cube, on a sweltering hot day, lol.

    Having assisted in the care of someone with a mental illness, I would say - they need us to take care of ourselves, and not feel guilty about it. We have to choose not to suffer alone, or in silence. That doesn't help anyone. I like to surround myself with people with goals, hobbies or interests, because they encourage you to push-through the obstacles or just spend time, "being" what you like to do.

    Thanks for sharing your thoughts and suggestions on this matter. :)

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    1. Chris, carers definitely need to look after themselves so that they can continue in their caring role. Often though they have to remind themselves about that especially when they get so tired. An ice cube in this weather sounds very appealing :-)

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  7. Thank you and bless you, Nannachel.

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    1. Hopefully the info helps someone, Mary.

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  8. I have a smidgeon of an understanding of what it is to be a 'Carer' fulltime. I say smidgeon as this was when Bluey was so desperately ill in 2016. His recovery was a full 12 months in happening and then he ended up back in ICU late last year. He is now able to do for himself everything once more. He is no longer as strong as he was and this frustrates him. I wore the brunt of that frustration. I was exhausted at the start of this year and am only just getting back to full strength myself. I didnt look into anything for me, as I wasnt unwell. I didnt think I needed help, but that I needed to give that help. I wonder if there are those in our communities, who like me, are or were carers, but didnt realise that they too might need assistance.

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    1. Jane, lots of carers become unwell or exhausted when their loved one stabilises as I think adrenaline is pumping around so much in a crisis situation which helps us to cope. I have heard numerous carers tell me that they have had to seek help for themselves at such times. Also I feel that it all becomes harder when we get older as the resilience we had when younger tends to wane. I hope you get your energy back ASAP.

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  9. Chel, my first hand experience as a carer relates to the lifelong care of my 26 year old disabled son, who has Cerebral Palsy and is totally physically dependent. He can speak, and has a great sense of humour which has helped, but physically it's very demanding. The last few years have seen him living independently with government funding paying for support workers, leaving me to relate to him as his Mum, not his carer, and what a blessing that has been. I think that is one of the difficulties. Being 'carer', takes some of the joy of your role as Mother, Father, Sister, Brother, Husband, Wife. It's a complete restructuring of those relationships, and that means a lot of grieving, I think. Grieving the loss of a routine sort of relationship is exhausting in itself, and the carer duties compound those feelings. This is an important topic. Good for you for raising it. Mimi xxx

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    1. Mimi you have done so well being able to get your son into suitable supported accommodation to meet his needs. Having to cope with grief is something most carers have to deal with whether it is the loss of relationships, the loss of the child you once had before sickness struck and so on. It is all quite taxing.

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  10. I think our communities need to recognise the challenges faced by carers; the impact on their own lives and wellness, emotional and physical exhaustion, financial strain, need for respite and so on. I think it would make a big difference to carers to know they are not alone, they are recognised and supported by their government, their communities, their neighbours and extended families in ways that truly support them. Carers do what they do with great and unconditional love and they deserve so much in return. MegXxx

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