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Caring for my carer

My primary carer is my husband, so I have two good reasons to care for him: I love him and I depend on him! I am quite severely affected by ME/CFS: I can only be out of bed for about 3 hours per day, I have significant brain fog and noise sensitivity issues, and am in constant pain. All this means that I can't cook or clean and can't even get myself to the toilet after about 5pm, so I am very dependent on daily care. We don't qualify for any state assistance with this, so my husband has primary responsibility for it. It's a big ask, so we've put in place a range of strategies to make sure he retains a good quality of life and doesn't get burnt out. We're still refining our approach, but thought what we've done might spark ideas for others.

Firstly, when we got married and I became primarily his responsibility we decided that he should reduce his work hours to 30 hours per week. We were fortunate that he had both a well-paid job and a cooperative boss: I understand that not everyone could do this. Martin works six hours per day, five days per week. This enables him to help me with breakfast in the morning and spend a bit of time reading the Bible and talking with me when I am at my best and still be able to run a few errands or spend time with friends during the day before coming home in time to prepare an early-ish dinner for us both.

Secondly, Martin takes a respite break every three months. Sometimes this involves going away and doing something fun that he couldn't do with me in tow: e.g. snowboarding, tramping or even a conference. Other times it's a time of rest and recuperation, spent reading and hanging out with friends, or taking time for reflection by going on a spiritual retreat. He always goes away for at least a 3-day weekend, and has been away as long as 6 days. I have to live my life to a fairly rigid routine, something that doesn't come at all naturally to Martin, and these breaks also give him some temporary relief from those constraints. While he is gone I have friends and relatives rostered on to visit twice per day to help me in the morning with breakfast and in the evening with dinner, toileting and getting changed.

Thirdly, we make sure that he has the opportunity to do fun things and keep his own interests alive. We keep a tight budget, but within that we have made sure that Martin has a personal allowance that enables him to go out to lunch with his work friends, have the occasional drink at the pub and go to the occasional movie. This year we instituted a 'Special Projects' fund where we set aside money for him to work on a big project over the course of the year. He is a keen utility cyclist and this year he used that money to fit his main commuter bike with underbody lighting - just like a boy racer!

Finally, I have made a steady effort to identify and eliminate those jobs around the house Martin either dislikes or isn't managing to find time to do. When we got married my parents paid for a cleaner for us for a year as their wedding present to us and we found this so helpful that we have continued to employ a cleaner three hours per fortnight ever since. I also love growing fruit, vegetables and flowers but these days can only physically manage growing seedlings, planning the beds and occasionally picking a few things. Gardening isn't something Martin enjoys so I have sought out friends who share my interest and I try to organise for them to take on as much as possible of what I would like done. In the same vein, once or twice a year we bake a mammoth fruit cake and invite all our friends and relations to come over for a big house and garden working bee - transforming many niggling jobs into a fun social occasion.

As you can imagine, all of these require money, the help of a lot of people, and a good dose of honest communication. Here's how we manage that.


We stick to a tight budget as it enables us to make sure that our money goes where we really want it to. As well as the basics of food and shelter, the budget also allocates funds for practical help such as hiring a cleaner and various leisure/relaxation activities including Martin's respite breaks. We have had to make trade offs to free up money for these things that are important to us. When we came to buy a house we bought it 50:50 with a friend (reducing housing and utility expenses as well as gaining company and practical assistance); we meet my low GI, low calorie, high nutrient dietary needs on the cheap by cooking mostly vegetarian food and mostly from scratch and we don't own a car. Our finances are also helped by the fact that my health prevents us from blowing large sums of money eating out or going on overseas holidays!


Right from when I first became ill I noticed that people enjoy helping so I am very willing to ask for what we need. I make a point of finding out who enjoys gardening, sewing, laundry, spring cleaning or whatever else we might need help with so that when we have a need I can match it to a person for whom it is not a burden. Similarly, I try to find out who goes to the supermarket frequently, who regularly goes near various specialty shops I use occasionally, who shops at our local Sunday morning vegetable market etc. so that I know who could easily slot our shopping in alongside their own when we can't manage it ourselves. We draw these people from all over the place - university friends, neighbours, relatives, people from church etc. and we've accumulated quite a sizeable group over the years.

We've worked hard to make it easy to help us. We have a keypad rather than a regular lock on our front door so that people can easily let themselves in without having to arrange to be here at a time when I'm up. I have written instructions explaining what help I need when Martin is away on respite so that people know in advance what's involved. I also set aside leftovers in the freezer over the few weeks prior to Martin going on respite so that my helpers just need to reheat my dinner rather than actually cook for me, and we have a commode wheelchair that we get out when Martin goes away so that people can easily help me to the toilet. Lastly, whenever I ask someone for help I make sure they know that I have other people I can also ask so that they don't feel pressured to say yes.

I also like to take time to show our gratitude for the assistance we receive and for the richness these people bring to our lives, but I need to be careful not to go over the top and embarass people or make it look like we're trying to buy their help. We send a lot of cards at Christmas and have nice biscuits around for when people come over. We also make an effort to contribute to our community in whatever ways we can - for example preparing a meal when we hear someone is having a hard time so that we can take some of the burden of cooking off them.

Communication and awareness of each other

Whenever I want something done, I strive to be as clear and honest as I can as to why this is important to me. We can then talk it over and weigh up what is required to complete the task, what would be gained from doing it and hence whether it is worthwhile. I also generally try to be aware of where Martin is at and to ask him how he feels he is coping with things. That way I can keep my expectations of him realistic and offload things from him if I'm asking too much. We have also learned that Martin finds keeping track of details a real chore, whereas I enjoy it. I thus plan into my week time for entering expenditures into our accounts and paying bills as well as taking responsibility for compiling shopping lists and meal plans, finding helpers, keeping track of 'to do' lists etc.

In addition, I look after myself as best I can. When I get worn out I need much more help, so I work hard to stick to my routine and stay within my limits for my Martin's sake as well as my own. Last of all, we budget our money, my energy and Martin's time to ensure that we have frequent fun times together and our relationship remains primarily a marriage, rather than one of carer and caree!

I would be happy to be contacted by anyone who would like to talk further about any of these ideas or who would like to see the instructions I give my respite helpers, notes I've written about the process we used to write our budget or our super-easy working bee fruitcake recipe.

Heather, August 2009