As the young mum of a disabled child, my major concern was staying healthy and strong so I could look after my son in the best way possible.  Thirty six years later, and still caring for my son, I realize I have an added concern, the ageing of my father as well.  This puts me in the unenviable position of worrying about how to look after both the older and the younger generation.  In other words, I am now the mortar holding the bricks together, or the meat in the sandwich. If the mortar crumbles, the bricks topple, and the whole foundations become weakened.  Instead of me shouldering the health and well being of three people, it becomes a very real possibility than none of us would be able to cope independently.

In the past couple of decades we have seen the age people marry, and have children, increase as women leave starting a family until they are in their late thirties and early forties. Those same families have parents who are already of an age where health issues and fragility are becoming a concern.  When you add in a couple of toddlers to care for the stress levels rise, but should one of those toddlers have a disability, the difficulties can become insurmountable.

My dad is now reaching an age where he needs far more care, and whilst I still have my son to worry about, I have had many years to put the strategies and supports in place where my son is concerned because he was born when I was in my early twenties. When I started out I could rely on my parents to support me as well. They were younger and still fit and healthy. If I had an illness, or pulled a muscle lifting my son, I had backup.

The sandwich demographic is dealing with finding the supports they need for both their child and their parents within a much shorter space of time. If this is your demographic you may not have the same amount of time to grow into your Carer role, finding it thrust upon you from both directions. You have a very real urgency to put another set of supports in place. I’m not talking about the supports for the child, or the supports for the aged parent, but something we as Carers’ rarely consider, the supports we personally need if we were to be struck down with a serious illness or disability ourselves.

The one positive an older parent has over a younger and inexperienced parent such as I was, is their level of mental maturity.  Their world wide experiences will have engendered in the mature parent, a confidence and belief in their ability to negotiate the learning curve they will be faced with. Finding the best supports amongst the maze of paperwork, referrals, and dead ends can often lead people into ever more confusion. Imagine a non English speaking immigrant, or someone dealing with domestic abuse or ill health, trying to find the way forward. It can take years to come to grips with the intricacies, ever changing rules, and waiting lists that confront.

From a
psychological perspective however, all parents of special needs kids find
themselves unprepared for the upheaval to their lives, relationships,
marriages, careers, and own mental strength, that comes from the impact of
caring for a disabled child. If you have waited till later to have a family,
you will have enjoyed a level of independence that has afforded you a certain
level of comfort in your lifestyle. To find your presumed return to work might
not be possible because your child needs full time hands on care, is a jolt
indeed.

You can’t just find a childcare centre and enroll your child. A special needs child can’t be enrolled anywhere easily, including school, without meetings, assessments and stressful discussions. Understandably the more disabled the child, the less independent the parent. I can look back on a few examples, but one shines out above the many.

After my husband and I divorced, I found myself raising three sons, the youngest disabled, on a single parents’ benefit. I was called in to the local Government office to see what help I needed to get back to work.  I would have really enjoyed a part time job just to alleviate the same routine day in and day out.  The interviewer was just out of touch and questioned me in a condescending manner.  “So why couldn’t you go back to work.” She said.  I replied that I would actually love to. And if she could get me the supports I needed I gladly would try. I gave her a run down. My son was in primary school. He had several hours supported care a day. But when he needed to go to the toilet they would ring me and I would attend the school. He couldn’t be left unattended at any time so I needed a job where I could come and go when necessary. School holidays were out. As were the many surgeries and recovery times he faced in the next couple of years. I told her how I would really enjoy just sitting in a café once in a while without the phone ringing with a request I head to the school. She assured me she would look into how she could help.  A few weeks later I received a letter saying the help I needed wasn’t available, although waiting lists were in place. I wouldn’t be hearing from them again.

None of that warmed my heart though. It just confirmed what I already knew. I had to find my own way through the maze. The help and expertise to sort out my particular set of problems, just wasn’t there. You just can’t rely on someone else finding the answers for you.

Unfortunately many elders in our community are suffering because their own children, some would have hoped would become their primary carers, are bogged down with younger children, than may have been the norm when my parents were young. More and more the only option is to put mum or dad into aged care sooner than they would prefer. And in many cases that leads to out of sight, out of mind. Harsh you might think. Well according to available statistics, 70% of residents in aged care facilities have no or rare family visitation.

Much of your future planning will be directed to finding the care needed for your disabled child, aged parent, or both if you are from the sandwich demographic. The selfless nature of putting others first, means that you must stay healthy and well, and put in place the supports you personally need in order to stay that way. Make a start while you still have the stamina. Do some regular research. Know planning for the worst case scenario doesn’t mean it will eventuate. It simply means you are prepared should something go wrong at any time in the future.

 

• Put in place some time to call your
  own. You can do this by choosing a hobby or yoga class, sport, lunch date or
  weekly shopping trip. Make it a set routine and get local council home help,
  paid care service, or family member scheduled to work. There are special rates
  dependent on your income. My son was high needs so he would have to spend that
  time at a special facility. I scheduled a weekend once a month knowing he was
  cared for properly.
• Right from the start, make sure you
  keep all assessment records along the way. Keep everything in a folder so when
  looking to enroll in a school, childcare, or access specialist help, you have a
  record of your childs history. You will be amazed how much paperwork is needed
  when applying for literally everything. If your aged parent is beginning to
  falter, do the same with all their records. It can often be very difficult for
  families to find help for older parents when they are unused to the hurdles
  they must jump through.
• In all cases be as honest with your
  child or parent as you can.  It helps to
  keep them informed of why you are making certain decisions. Even a young child
  can tell when they are being talked about, not talked to. It can cause
  conflicts as they become more aware with age. 
  If you are using respite care, as you really need to consider, tell them
  why. I am a bit tired and need a rest. I have a stiff back from lifting and
  just need a bit of help till it heals.  I
  want to be relaxed and happy to care for you better, so I thought I might try a
  yoga class each week.  Always make it
  about a need you have, not an escape from the stress they may feel they are
  causing. 
• Keep a list of appointments and
  contact information for all doctors and therapists, ect, your family member
  must attend. Add to that your own personal medical contacts should someone else
  need to find them.  My family has a
  spreadsheet with wheelchair mechanics, plumbers, NDIS information, case manager
  phone number, and care staff ect. It is shareable via the phone on a Google
  spreadsheet. Should I be away from home when a catastrophe happens, I can be
  sure another caregiver has the details they need.
• It can be a positive to find a
  support group where people can share their experiences and challenges. I tried
  it but couldn’t cope. I wasn’t yet accepting of my sons’ disability and put off
  by some one of the personalities. “My child has the worst case of—.” “Yes but
  my child is in more pain than yours.” Ect. Just make sure you feel comfortable
  around the people you are hoping to glean information from.
• Remember that with knowledge you have
  options. Without knowledge you have confusion and doubt. Options give you hope.
  Relieve stress through the ability to make decisions, and open up the range of
  questions you can ask. That leads to more knowledge and more options.

Most importantly,take control of finding the
knowledge yourself