Caring can be a wonderful experience, but it can also be isolating and lonely.  We hope you will find our stories about other New Zealand carers uplifting and inspiring, and help you feel part of the large community of 420,000+ carers!  Many of these stories are from past issues of Family Care magazine.  To request a subscription to our quarterly magazine, delivered directly to your home, phone (0800) 777 797, email sara@carers.net.nz, or read more at our Family Care section at the website!

Life Cycles

The week before Christmas I went to pick up my son from the flat where he had been living for five months.

Flatting hadn’t worked out because my son, who is 21, has Type 1 diabetes, dyspraxia, and learning difficulties. This combination of health and disability issues has been a barrier to achieving his dream of living independently, with people his own age.

Maths are difficult for Isaac, so it was hard for him to calculate how much insulin he needed. Insulin is a dangerous drug. If you take the wrong amount you can go ‘hypo’. This had been happening a lot for Isaac.

His way of dealing with it was to use less insulin and eat more. This meant he became very unwell because his blood sugar was always either very high or very low. The long-term consequences of this are blindness and limb removal.

Isaac also didn’t understand about helping with household management while he was living away from home. His flatmates got cross with him.

This came on top of challenges with Isaac’s job.

He was tired, stressed and couldn’t concentrate … the effects of his uncontrolled diabetes. He nearly lost his job because his employer didn’t understand what was happening.

It was the perfect setup in the beginning. The boy who owns the flat works with disabled people, and even offered to take a diabetes course to support Isaac.

The flat was warm, clean, and close to Isaac’s work (within walking distance). It was also near to his grandmother’s house (they are great mates), and handy to our bus route so he could visit often.

While Isaac is very accepting about the need to move home to rebuild his health, I can’t help feeling sad for Isaac.

My husband Kevin and I had been so pleased that Isaac was at last enjoying a life of his own, with privacy, the freedom to make his own mistakes, and people his own age to hang out with.

Watching Isaac struggle and eventually lose the battle for a ‘normal’ life has been hard for us all. Recently a friend gave me an article about chronic sorrow, which discusses how for some people there is no finite period of mourning, with a healthy end point where you accept what is lost and move on.

Chronic sorrow acknowledges that for some people (parents like us, whose children have lifelong medical challenges or disabilities for example), the feelings of grief can continue throughout life.

The theory looks at how acceptance is not expected or required, and no judgment is made about your coping abilities or mental state.

This article helped me to feel that it is OK for me to be sad, and that the term sorrow is a really accurate description of how I feel sometimes.

Chronic sorrow acknowledges that some parents live loss daily, and there are constant reminders as life events are reached (or not reached).

Isaac has done so well and we tell him so every day. He has a part-time job and is a wonderful artist and poet. He catches the bus and uses the computer … but he may not be able to do other things that we take for granted.

Going flatting was one of the things Isaac really wanted to do.

We thought we had prepared well for his move and when it didn’t work out, we all grieved for this loss.

We had tried hard as a family to make it work.

His father and I spent every second Saturday at the flat to help with cleaning, to remind Isaac to have a shower and tidy his room, to help him get his work clothes in order, and to check his insulin supplies.

But it became overwhelming because there was a lot for Isaac to remember, and he found it hard to keep up with everything he had to do.

My son is really happy to be home at the moment. He thinks it was worth giving flatting a go, and he would like to try again.

But we have agreed that we all have to learn from Isaac’s first attempt to live away from home so he can be successful next time.

Our long-term plan is to buy a flat for Isaac, and somehow ensure that he has more support from workers and others whose help he might need.

We are fortunate to have the support of Kim Macintosh, Isaac’s advocate, who is ensuring that Isaac learns how to care for himself, can cook healthy food, and develop other life skills.

One of the things Kim did was introduce Isaac to Supergrans. This is a great charitable organisation that has taught Isaac how to make nutritious meals.

Kim also took Isaac to our local diabetes centre, where he met with a nurse and a dietician. The centre has been fantastic support for Isaac.

Kim has also acted as Isaac’s advocate at disciplinary meetings at work. Her kindness and support have meant a lot to Isaac and our family.

The goal is for Isaac to live independently, but he will always need support. The long-term damage to his health from being hyperglycaemic during those months of flatting has been significant. We worry it will happen again.

I can’t help feeling concerned for Isaac. He nearly lost his job, and he became very unwell.

I am a mental health professional and write about the importance of personal independence in the books I develop for my employer, Careerforce.

But as a parent who has watched her son struggle for ongoing support, I have come to believe that independence, privacy, and informed consent are words that can be abused in the disability sector.

Yes, independence is important, but it’s another thing to watch your child slowly kill himself because he needs more help than he is getting, and can’t live alone.

I have been told that I am over-involved because I fret about my son. It’s the kind of comment that makes me want to scream!

Luckily we are a close, united family. My husband and I and Isaac and his brother and their grandmother, will continue to do our best to ensure that Isaac’s dream of living in a flat comes true.

In the meantime, he is at home with us, recovering his health. We are grateful for the support we are receiving from Kim and others as we plan how best to help Isaac achieve the future he wants.

LIFE PLANNING: Advice from Margaret

Find someone who can give good advice about agencies and what they do for the person and the family as a whole. Try to focus on what is good rather than the problems.

Try to see things from the person’s point of view (just catching the bus that day or not going hypo may be a major achievement for them, but merely an expectation from your perspective).

Talk to people who might have creative solutions to boost confidence, skills, and wellbeing. We have published books by Isaac, who is a very good artist and writes poetry. Recently we started going to reflexology.

As a parent don’t doubt your ideas or beliefs. You are the best person to protect and nurture your child. Believe in what you are doing.

Build a team of friends and family who can provide advice, support, and perspective. Isaac’s grandmother (my mother) is one of his fiercest advocates … and his good friend!

I have designed a chart of things he should do daily/weekly/twice weekly so every task is broken down and he ticks things off each time he does them. This is preparing him to try flatting again.

We have taught Isaac how to hang washing on the line and the need to bring it in DRY and FOLD it straight away so he doesn’t have to iron.

He is also making a meal once a week for the family.

We have set a goal that if he does these things consistently, he will be ready to flat again in the future.

It can help to break tasks down into smaller subtasks, so they are easier to remember.

Our support worker says Isaac needs to prove he can do these things without being promoted or checked on.

When we’ve reached that point, we believe he will be able to live independently!

LIFE PLANNING: Advice from Public Trust

Support planning for someone with ongoing health and disability needs is a common family concern.

Often people with disabilities or chronic health conditions don’t need everyday assistance from their families. But where this is necessary, advice from legal and financial planning specialists can be useful.

Public Trust offers an initial free consultation service for families that want to ensure ongoing help for someone with longer-term support needs.

Having these arrangements in place can reduce family tensions and stress, and provide planning certainty for everyone, says Greg Coyne, a Christchurch-based Advisor for Public Trust.

Recently Greg visited the Tait family to talk about support planning for Isaac. Together they looked at the family’s current situation, and how to support Isaac to achieve his dream of living in a flat of his own.

The family’s medium-term aim is to buy a two-bedroom flat near Kevin and Margaret’s Christchurch home. This way Isaac can be independent and choose his own flatmates, and have practical help as needed from his family.

Greg soon picked up on some weaknesses in Margaret and Kevin’s current legal arrangements. Their wills are five years old, and their wishes have changed. Margaret and Kevin have decided to establish a family trust to protect their family home and financial assets.

No one in the family currently has Enduring Powers of Attorney. Greg has recommended that Kevin, Margaret, Isaac, and 26 year old Sam all put these in place, nominating their attorneys for Property and Finances and Personal Care and Welfare. This will ensure that if anyone in the family becomes unwell or dies suddenly, management of property and money will not be disrupted.

After their visit with Greg, Kevin and Margaret are reviewing their current mortgage protection insurance to ensure their risks are adequately covered. Greg says there is a balance between premiums for this kind of insurance and the amount of risk families are happy to take on. It’s good to check that this balance is at the right level when considering present and future family needs, he says.

Both Kevin and Margaret are considering whether they should set up prepaid funeral trusts so all costs will be covered when they die. They also have life, trauma and medical insurance. Both intend to join KiwiSaver to accelerate saving for retirement.

Greg says the Taits have a united support strategy for the whole family: Isaac’s long-term needs, savings and retirement planning for Margaret and Kevin, and protections of Sam’s interests in family assets. These will all be covered once important documentation such as wills, Attorneys, and a family trust are in place.

If your family would like a Public Trust needs analysis, this can be organised by phoning 0800 371 471.



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