What I mean by that (borrowed) title is of course that I would prefer to know I’ve fought this every step of the way, rather than surrender and give up my life for dementia. I have of course had to say goodbye to some opportunities, but I have come to realise that better ones have/will come along, that will be much better suited to me.
Back to topic, a little while ago we had a Twitter chat about juggling work and caring. And it is scary to know where and how to start this juggling, so I’d like to share the thoughts we came up with.
Where do we even start? From personal experience juggling usually starts with a minimal amount of balls in the air and then builds up, with an assistant chucking ones at you. But juggling caring and work and friends and family and self all at once with no warning can be pretty tricky. Luckily the people on Diverse Alz chat were there to help, and I learned that unpaid carers save the UK economy £119 billion a year!!!!
EMPLOYMENT: I started off caring as a temp, then became unemployed. Finding a new job was nerve wracking, as having spent so much extra time with nan I concerned about the effects on her and me if I suddenly started being out all day every day. This chat made me realise how lucky and grateful I am to have a job and boss that can work around, and understands my situation with nan. And how important it is to try and ease in slowly, and not to bow to pressure from society/boss/colleagues, do what is right for you and caree. But always make sure your boss knows what is going on at home. At the end of the day if you are struggling at home you will struggle at work and (hopefully) they will want to keep you on and will work around your caring priorities. A good start is to mention your caring “duties” (I hate calling what I do for nan duties-it feels so regimental), to your potential employer and ask about flexible hours and additional leave. How you decide to approach this is up to you, checking with HR, company policy, call benefits department. Look into the company you’re going to work for, larger companies tend to be better suited to providing for carers, including counselling services. But at all times remain polite in your questioning! AND BE INFORMED.
QUALITY VS QUANTITY: It is more important for me to know nan has good stimulation time a few times a week on top of regular caring duties, rather than spend time sitting with her but not communicating. Decide on how much time you can give to “active” caring with bonus quality time. Hours or minutes, it is your decision and it is important not to beat yourself up if you can’t do 10 hours a day. Quality is far more important than quantity. Which leads us the next point as this also applies to the relaxation you take.
RELAXING: You have to relax, otherwise who is going to care when you break down? Make sure you know you’re coping mechanisms for when things are too much, and schedule in some me time; go for walk/drive, have a bath, go out with friends, meditate. Once you have recharged your batteries (even for ten minutes) you will feel more sparky and be more resourceful, thus giving better quality care. A good point was “if you don’t look after yourself, how can you have the capacity to look after anyone else” Expanding on this; if your caree sees you neglecting yourself, why should they trust you to look after them? I have trouble with relaxing because I want to get on top of things first before I relax. I am learning this is impossible, and if you won’t rest, your body will make you (it’s a clever thing so listen to it). Try these! 18 Simple, Time Saving & Stress Busting Activities http://fb.me/2ND0qAgkg
GENERAL TIPS: Most important is for the carer to get enough sleep, eat healthily and find ways to breathe, relax, this holds overwhelm at bay. Make sure you plan in little rewards for yourself (chocolate, glass of wine, a dvd) for getting through the week. If you have relatives/friends with children and your caree is up to it invite children around to keep your elderly relative entertained. Have an activity box to hand, with things caree enjoys and can do with minimal supervision for sicky days. Cook in advance or prep incase dislike frozen meals. Find a system, get organized, ask questions. Don’t make carer your only role in life; have an identity beyond carer.
LISTS: I love lists. Really love them. I have many, and copies of those lists so there’s always one to hand. They help keep me organised, prioritise tasks, and give a great sense of achievement when I can tick things off. ALWAYS START A TO DO LIST WITH: MAKE A TO DO LIST. Then you can tick one thing off straight away 😉 Involve loved ones in tasks they can help complete, like I do with nan and the housework. Certainly beats spreading yourself too thin. I have a rota (because I’m anal) of what I should be doing each day. Scheduled in chores, work and stimulation for nan and as long as I can get through the rota I seem to be able to juggle added balls.
MARTYRDOM: Remember loving and caring for someone doesn’t always look like sacrificing yourself. Many people (myself included) don’t like to accept help, but it’s not always the best to struggle on alone. You can only do the best you can, if you feel it’s not enough look at outside help.
ASKING FOR HELP: Yes, it’s tough, it feels embarrassing, it makes you feel guilty to admit it. But we all need help. Make sure you have open and honest conversations with those around you so they can pick up on when help is needed. Accepting/asking for help will give you that extra time you need for yourself. Having both moral and physical support is important, to give you someone to listen and not judge as well as offering to take you and caree out etc. People are not telepathic and won’t offer help as they don’t want to intrude. So ASK!
SOCIAL MEDIA: For me social media is a huge part of the moral support, the people are non judgemental as all in same/similar boats. It is handy for those who need to remain anonymous, and search engines allow us to find out we are not alone within a few clicks of a button. Check out caregiving.com and http://CareNovateMag.com for care specific social media.
CONCLUSION: So what can we learn from this? Of course there is no easy answers. We all love our carees, and this often means we push ourselves to the limits. It is unnecessary and non productive. We have to find a way to juggle life/work/care/friends/family/self and coping, and that is a deeply personal and individual thing. I just hope you find suggestions here to prompt you in finding yours.
WEBSITES: Lots of helpful websites brought up in this chat so here goes: http://minddeep.blogspot.fr/
http://www.carersuk.org/professionals/resources/research-library/item/2123-valuing-carers-2011 …
http://www.myfamilycare.co.uk
http://huff.to/1bZoooJ
http://www.ippr.org/publication/55/11168/the-sandwich-generation-older-women-balancing-work-and-care …
http://fb.me/2ND0qAgkg
http://rockingyourrole.com/caring-for-ageing-parents/ … http://www.carersuk.org/professionals/resources/research-library/item/2123-valuing-carers-2011 …
http://ow.ly/jzdkT
http://www.theguardian.com/society/the-northerner/2013/may/17/my-dad-dementia-and-me …
http://www.workingfamilies.org.uk
http://longtermsol.blogspot.fr/2012/10/balancing-caregiving-and-employment.html …
Living with Dementia 