5 Home-help Lessons

Across the last six years I have benefitted from the full range of home care services and helpers at various times.  I’ve used fully funded government care services, agencies and privately employed helpers. To start with, I really struggled with being able to ask for the help I needed.  I had a hard time building productive relationships and an even more difficult time saying when it was time for it to end.  I learned ‘on the job’ how to best approach the necessity of home help.

Are you considering having home help, too?  Maybe your own capacity to do the things that need doing has been gradually diminishing.  Or perhaps yours is more of a relapsing and remitting picture.  Maybe your partner has reached maximum coping capacity.  It’s time to bring someone in from the outside to help out before the wheels fall off completely.  It’s a challenge, an adjustment and can enrich your family’s life enormously.

Having someone in your home, helping you out, is like embarking on a new relationship, like a marriage …kinda!
At first you only want to be seen in your best light.  Then, the initial rush of infatuation may fade. If there isn’t a solid basis of honesty, it will be hard to maintain positive communication channels. After a while, you feel like they should just know what it is you need them to do, even if you haven’t directly asked.  There will be small frustrations that can fester into big situations if you don’t address them. And just like a new relationship, it will take time to get to know the person and them, you.  It’s an art that takes practise; clear communication is a skill.

 

I'd love to help!

Here are some of the things I have learned over the years.

1(10)Talk. And don’t talk.
It’s hard to transition from home-maker to home-care employer.  I have spent a lifetime making sure I don’t need to ask people to do anything for me.  So like anyone who reluctantly finds themselves being “boss” without prior experience, there are things to learn about taking the leadership role with your home care provider.  Asking directly is incredibly hard for me, it makes me feel so uncomfortable.  So we started up a communications notebook.  I write in it the night before, all the tasks that need doing and mark the priorities.  The notebook is great because our home carer can write in it too if we need to replenish supplies of anything or make notes about the progress through the list.  It also means we don’t get caught up in chatter without the work getting done.

1(11)Ever heard that saying, ‘if you fail to plan, you plan to fail’?
Before your carer ever begins, sit down and work out the job description.  Be specific and realistic about things like tasks, hours, pay rate, tax.  Try to anticipate the questions so you can provide the information on the first visit. Specify any no-go-zones.  Also, try to make time for a chat once a week, during working hours.  Ask your home carer how it is going, ask for suggestions about how things might be done differently/ better/ more effectively.  This meeting over a cuppa is a great way to raise any issues that may have arisen, it builds the foundations of a good working arrangement.

1(12)Sometimes, the relationship will work, other times it won’t.
If your home-carer is new to your home, allow a few weeks for them to settle in to the role. Don’t assume it is going to always be difficult just because it’s a struggle at first.  If however it isn’t working after a good amount of effort and flexibility; make the change you need to make.  Having someone in your personal space who doesn’t, even with communication, understand your needs will significantly add to your stress.  Home help is a very personal role and you need to be happy with the person who spends so much time in your private world.  If they come from an agency you can ask for a switch in carer.  It can take time to find the right fit, don’t give up until you find it.

1(13)Maintain a professional, friendly, working relationship.
Make sure everyone in the family understands that you are the employer and it’s not their job to ask your home helper to do anything.  Similarly, even if your home help is familiar to your children, they will need to know that they still must come to you for permissions.  In our home the rule is that if Mum’s at home, Mum’s in charge.  🙂  Maintenance of any relationship takes kindness, flexibility and a willingness to find alternative solutions.  Most issues can be solved with one or all of these three attributes.

1(14)Help may be closer than you think!
Be creative in your search for the right person.  After finding help from a range of sources in the past, I was very surprised one day when I was asked if I would consider employing a friend for the job.  Cami already spends a lot of time with our family and knows our routines like her own. She is also a talented house keeper with great organisational skills and a mother herself.  My children like to call her their ‘other mother’.  Her intuition and close connection to our family make for the most positive home help experience we have ever had.  When it comes to home help in a family with young children, it may be worth asking around the people in your close circle.  For Cami, who needed a flexible part time role and for us, it’s been a win-win. Thanks Cami, we’re glad you are part of our team!

Parking your Objections

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See that girl over there?  She looks like she is in the glow of good health. Her cheeks are flushed, her hair is shining. Why is she using a mobility park?  Oh my word.. she even has a cane, but no limp!  She’s a faker for sure. Does she think she is too important to have to walk 10metres? Who does she think she is?! She must be using someone else’s pass and cane.  I bet they’re her Grandma’s.  You’ve heard them do exposes about exactly this kind of deceitful self-centredness on the TV.  It’s outrageous!  You are so incensed you decide to go over to her and give her a piece of your mind.  On behalf of all the truly disabled people.  You’ll speak up for them!  It is your civic duty!

You catch her just before she enters the supermarket.  She turns at your shout, a smile ghosting away from her face.  Her eyes seem clouded.  Maybe she is tormented by guilt!
“Hey, YOU!” your voice is angry.  Your finger is stabbing the air in her direction “You can’t just breeze into one of those parks and use the pass of someone else!  It’s not on!  Those parks are for people with WHEELCHAIRS.  That’s why there’s a wheelchair on the sign!”  You are full of justified fervour,
“…I don’t see a wheelchair!  Go and park somewhere else and LEAVE THE DISABLED PARKS FOR DISABLED PEOPLE”. Her lip looks a bit quivery, you notice with satisfaction.  She better not try the sob story with you.  

“Thank you,” she says, her voice is controlled, “for looking out for the rights of people with disability.  Although you don’t see it, I am one of them. I have a progressive neurological disorder.  You can’t see my disability by looking at me. I find it hard to walk far, but I like to do what I can when I can”

She sounds like she has said that before. She turns and walks away.  You feel awful.

How were you supposed to know? She looks fine!  Your outrage fizzles, your hand drops down by your side.  You’re feeling a bit like a rapidly deflating balloon.  You stand at the entrance to the supermarket feeling a conflict of emotions.  You were only trying to do the right thing!  You watch her walking away, and you wonder about what is wrong with her.

She looks normal…

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Dysautonomia is a strange thing. There are ebbs and flows, bad days and sometimes, better days.  As my old friend John Denver put it.  “Some days are diamonds, some days are stones”. On those days that are stones, I have usually sunk to the bottom of my get-up-ability. I’m not driving.  I’m certainly not parking. And nothing is getting done that needs to get done. A stone day is often followed by a series of scrape-yourself-up and push on days. They’re days when I am definitely not rocking it. They are really hard days. I might make it to the supermarket and be able to budget the distance to get something essential.  On one of those days I’m unlikely to make it around the whole place.  I certainly wouldn’t make it to wherever I need to get to within the store if I have also had to walk the length of the carpark, there and back.

I have a mobility pass for parking. I use it when I need to.  But I am careful. If I am able to park in a normal park, I always do.  If I am able to walk further, I will.

I have a fierce determination that if there is anything I can do for myself and my crew, I always do.  In order to maintain that kind of control over my life, I need to use the services our community provides for people with limited mobility. Sometimes the symptom-ricochet for pushing through is swift and severe.  But sometimes, even that is worth it.  Because I like to do for me.  I think it is good for me, good for my body and good for my brain. I’ve been told I need to get better at accepting help, but I don’t know…  I think I need to keep doing as much as I can while I can.  It matters to me very much. Maybe there is an element of pride in there that I will have to examine at some point.  But in the mean time, I do what I can whenever I can. I use my pass if I need to.

My cousin’s husband has a specially modified vehicle because he is only able to mobilise in a chair.  He has quadriplegia after a disastrous rugby tackle. I have seen first hand the frustration when people have parked too close to his vehicle for him to get back in it.  I have watched cars, circling carparks on a busy day; duck into mobility parks for a quick dash in to the coffee shop, because there are only mobility parks free.  Sometimes, I too have looked through the windows of cars parked in those spots, searching for mobility cards, wondering why the people are parking there, wondering if they are legit.  It’s grossly unfair that there are people out there abusing the service provided for people who legitimately need it.  But there are also people out there abusing the people who legitimately need it.  Not all disability is visible.

The point of this post is just to ask people, well meaning people, to adopt a considered approach to their wonderfully caring, on-behalf-of-what-is-right, vigilante advances. Please, first check to see if there is a permit. Don’t assume that it is stolen.  If someone has a permit; they are permitted to park in mobility spaces. Permit applications must be signed off by doctors.  People can’t just cut them off the back of a milk carton. So if a permit is present, you really need to presume that disability is also present, even if you can’t see it.  If you are certain (there is no permit on the dash), alert the management responsible for the carpark.

I wonder, why don’t permits have a photo ID component?  I think that might resolve this whole issue.   What do you think?  Have you seen people abusing the mobility parking near where you live?  Have you ever approached them?

If you would like to read more about how this issue is being addressed here in New Zealand, you can look here.

Here’s my mate, singing about those days of diamond and days of stone.