09 July 2012

Eldercare: the second wave of the "juggle"

By Sarah Wilshaw-Sparkes

Late one afternoon at the end of April, I was walking our dog out along the mudflats. It was a short break from the stress of long work hours that had started a month earlier when my mother had fallen in her home. I'd dashed up there to find her shaken and badly disoriented, and for the next week I visited regularly to check on her and my father. All through April, I never quite got back on top of everything - work, travel, family, Professionelle.

So there I was, taking a little me-time, fresh air and exercise. I turned for home and in the distance saw a figure hurrying my way…  as he drew closer I could see it was my son… soon I could tell he was carrying a phone… when we were finally in earshot, he panted, "Call Dad. It's urgent. Grandad's been rushed to hospital."

If I laughed, there was more than a hint of hysteria in it. Sure enough, the first half of May made April look a downright breeze.

Sandwich generation

Eldercare. If you're lucky, it may never come calling. Maybe - as we'd all hope - your elderly relatives will be hale and hearty right up to the day they peacefully die in their sleep; or maybe your siblings will pick up the strain. If you're a bit lucky, eldercare will wait to come into your life until after your childcare stage is all done and dusted. If you're unlucky, however, you'll join the "sandwich generation", caught between children who are still heavily dependent on you, and parents who start needing you more and more.

Key demographic, economic and career trends all point to the "sandwich" risk rising for all of us, and for it coinciding with years when we are still fully employed. Think about it. We're now having children later, after our careers are established. In NZ, if our children go on to University, we remain financially responsible for them longer than we used to. Our parents, who have been retired for decades, are living to ever greater ages, while we ourselves are retiring later.

Just how fast the ranks of the elderly are growing is shown in the numbers below, which are for the combined populations of NZ, Australia, US, Canada, Europe and Japan:
% of the developed countries' populations >60 years old

  • 1950    12% [100m people]
  • 1998    19%
  • 2025    28% [>500m people]

Sandwich statistics

It's a significant phenomenon: in the USA, 44% of American baby boomers are "sandwiched".  In Canada, a 2007 Ipsos -Reid survey found a third of 45-60 year olds were caregivers to elders and 44% of those surveyed supported children too.

You won't be surprised to read that the hours of care fall disproportionately on women. An AARP (USA) study reported that the typical unpaid family caregiver is a 46 year old married woman, who works outside the home.  In Canada, national statistics show middle-aged women (45 to 64 years old) devote almost twice as much time as men do to unpaid caregiving.  Within that age group, working women spend 26.4 hours a month caring for an aging parent, compared to 14.5 hours for employed men.

I can't find NZ statistics on "sandwiched" adults or the gender split of care, but a teara.govt.nz study in 2010 by Alison Gray found that among mid life adults here:

  • Almost 80% gave parents emotional support (phone calls, visits, sharing leisure time)
  • Almost 70% helped parents around the home
  • Almost 50% helped parents with shopping and health visits

Stress and Strain

There are only about 110 waking hours in a week and it's hard to invest 10 or 15 hours of them in eldercare without other things giving way.  Carers may cut back on work hours, and use holiday leave and sick leave on caring duties. Some even quit work altogether. Relationships with spouses can suffer and so can the carer's health because of the stress of the situation.

"Caregiving in the USA" reveals that the toll on caregivers' health appears to increase over time. The rate of caregivers reporting that their health is fair or poor is 23% among 5+ year carers vs 15% for newer carers. Also, a larger share of female than male caregivers report declining health as a result of giving care - this is consistent with findings by the American Psychological Association that women do suffer more stress in these situations than men. (That's why it's really important to "put on your own mask before assisting others", as the airlines always tell us!)

Flummoxed

I'm sure I'm not the first person to be blindsided by parents' sudden ill health. Don't get me wrong;  I want to help them, from motives of both love and duty, but gosh it's been hard. I've tried to analyse why it was so tough to deal with and have come up with three main reasons that applied for me:

  1. Babies you know about for several months beforehand, but a parent's fall or heart attack gives you no warning. It drops into your lap regardless of everything else that's going on. And to complicate matters, you have no idea if it's a short term emergency that will go away, or something systemic you have to reorganise lives around. If you overreact you undermine independence and waste money. If you under-react you risk the situation deteriorating, to say nothing of the guilt trip you're eventually going to suffer…
  2. People at work were disinterested - or perhaps, more charitably, unsure of what to say or do. Again, babies are a known commodity but how many people have you heard talking about caring for their elderly parents? My experience was that there was a bit of initial concern, and then nothing. No follow-up queries about how things were going, no interest in revisiting deadlines, and seemingly, no sharing among the managers of the news of my situation
  3. I had no frameworks or reference points on what to do, how to feel, what to prioritise. I was literally swamped.  That's why I chose the picture of the Japanese tsunami woodcut for this article.

What I've Learned

Look on this next bit as an early report back from the front because I'm certain I have much more to learn! From my own experiences so far I've found:

  • There's more support available than you realise - you just have to be in a bad way for it to emerge! For instance, I had no idea doctors would do house calls in NZ, in fact I had never even heard of a district nurse doing rounds in this country. Turns out they do. And there are mobile X ray units and physiotherapists who will come to your house if you are in too much discomfort after a fall, say, to make it to a clinic
  • There's a whole industry geared to elder care in the form of home help and personal care, some of it funded publically and some of it not. The trick is finding names of organisations and then figuring out how to get plugged into the 'system.' It can be like a merry-go-round.
  • It pays to plan ahead. I was surprised, when I looked back, to find that I had in fact done some planning. There had been signs of my parents' faltering health for the last three or four years (one of them was no longer able to drive for example) and I had pushed and cajoled them to move back to Auckland from their down-country home. They are now 12 minutes drive away, in a small bungalow with a small, very low care garden, all on the flat.  So much more manageable than a five hour round trip!
  • You need to practise self-forgiveness.  For the first time ever, I missed a work deadline because of the hours involved in visiting my father and I was too exhausted to communicate this properly to my colleagues.  It led to a stuff-up and my default reaction was to berate myself and feel even worse.

From others who've been through more of the challenges of elderly parents' failing health, I've gleaned the following (and please add your own advice in the comments below):

  • It can be very hard to get your relatives to accept they need some help. Expect a lag between their deterioration eg in mobility and their acceptance they need extra help to cope with it
  • Don't let your elderly relatives make you feel guilty. You will be doing your best.
  • Have sisters to share the burden with. (Ha! I'm an only child, bit late to go back and change that…)

Coming to a desk near you

Even if it's true that 80 is the new 60 - and that seems a little optimistic - there are going to be a lot more 85+ year olds around in NZ over the coming decades as the graph below from Statistics NZ makes clear. The big jump starts in less than 10 years from now.

NZ 85+ population.jpg

Eldercare may not yet be bracketed anywhere near as closely as childcare with the issues of flexibility and work life integration but surely we are going to hear more and more about it as these numbers work their way through. Unmanaged, it's a threat to productivity and to careers; well-managed, it supports valued employees at a sensitive but important phase in their lives.

Professionelle was born of the realisation that we all go through similar life and work chapters and yet often wrestle with the issues alone. I have felt alone and unsure with my parents' ill health and would love to hear from others who are managing this stage of the juggle - or who are managing employees with this challenge -  so that we can share ideas and advice with the wider Professionelle community.

Comments (7)

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  • Monday, 16 July 2012, 10:33a.m. by Jann

    “Sarah, a special thanks for sharing your personal experience. It was very timely as we have spend the last couple of month up and down to Auckland as my partners mum is not well. I expect there will be several more weeks of this as well. We have just started the process of investigating what help we can get and it can be a jungle out there.

    One lesson I have learnt over the last few weeks is when we are busy struggling with the juggle we need to take time out for "us". Even if it is just going out for a nice dinner with my partner. ”

  • Tuesday, 17 July 2012, 06:16a.m. by Sarah WS

    “Thanks Jann, and though I wish your partner's Mum wasn't ill, it's helpful to know others are in this boat too.

    Something practical that I didn't put in the article is re the help available. The Govt has NASC (Needs Assessment and Service Co-ordination) which operates, it seems, through the local DHBs to figure out what you need and how to package the services to provide it. The providers range widely, from Salvation Army to private nursing companies.You can self refer or get your doctor to refer you, and NASC will apparently come and discuss your needs.

    If you need personal care eg someone to help with dressing and showering, you are entitled, post assessment, to some hours a week paid by the Govt, regardless of your income or savings. If you need household management, however, eg someone to hoover and clean, then you can only get some hours free if you have a community services card. Otherwise, you pay for the help, ~$25/hr, depending on provider. In this pay-for-it case, I suggest you call your local NASC and get them to send you a list of providers and then take it from there yourself, as you are effectively going private and they don't seem to add anything helpful to the process.

  • Tuesday, 17 July 2012, 10:56a.m. by Gretchen Williamson

    “I know this situation unfortunately all too well and in my situation I was head long into a career in Hong Kong when it became evident that flights back to Auckland and then New Plymouth every couple of weeks &/or months didn't have a sustainable future in it.

    The youngest of 3 by 10 years and the only girl I was the obvious family member to pick up the care gap in my family - I did it willing as I have been given every opportunity that I could ever wish for by my family so it was the right thing to do.

    Despite it being the right thing to do and the invaluable time I had with my mother after 3 months of looking after my mother she passed away and I was marooned in a country I never thought I'd be back in and looking for a job - excellent combination - grief and time to re-work my career.

    You are right there is an amazing network of people that can help and putting your hand up for services is the best thing to do - the hospice nurses were incredible and allowed us the opportunity for mum to die at home as she wished.

    Its also interesting that it isn't talked about more and I applaud your honesty and discussion of this topic as it was a lonely time for me and I was 30 at the time and it seemed no-one else either knew or understood what I was going through.

    I wish you the best on your journey and everytime we meet with the retirement providers (Ryman & Summerset) I am impressed by the level of service and care they provide and reminded that it isn't just the elderly they are providing peace of mind to but the family.

    Age Concern also do a wonderful job and I volunteer for them and visit an extremely lonely old lady who has no family every weekend so I encourage others to think about what little things you can do that make a difference because it will happen to everybody in some form.”

  • Tuesday, 24 July 2012, 11:14a.m. by Frances Denz

    “Some fifteen years ago I put my own career on hold to return to Dunedin to provide support to my Mum who was in elder care. My two sisters were not as mobile as I was, so I went. I was lucky to get a job I enjoyed but it did not enhance my career options significantly, and meant that I have not achieved what I might have done if that support had not been required. But it is something one does.
    What was really difficult though was my Mum had a stroke every time I went away! And in her last couple of years she had regular falls every second weekend. Her bones were very strong, and she never broke anything, but the care centre insisted on her going to hospital for xrays every time. As Mum was suffering dementia, I had to go with her to the hospital where the whole afternoon every second weekend was spent trying to keep her on the trolley while we waited, and waited...
    I usually hardened my heart over the strokes, and went on holiday anyway, and finally I got caught out in Taranaki one Christmas day when the hospital rang and said I should come back as she was dying. I questioned that based on six previous events, but they insisted, so I caught the next flight back, and she died while I was in the air.
    Oh the guilt at not believing her...
    And the guilt at my relief at no longer having to spend every second Saturday in A+E!
    And the absolute numbness after her death, which surprised me. I thought I was prepared, but somehow the death of a Mother is like no other experience.
    And of course all the experiences of our friends who care for their parents make those of us without children feel very vulnerable. Who will care for us when we have dementia, strokes and fall over?

  • Tuesday, 24 July 2012, 11:20a.m. by Katie English

    “A great and insightful article Sarah. And I am sorry to hear that this has happened and how it will inevitably impact upon you and the family.

    My situation was when my mother (living in Exeter in Devon) fell and broke the bone high in her leg. She was on her own and, while my brother lived only 10 minutes away, it was me that the doctors and social services had to deal with as he was very reluctant to take any responsibility and unresponsive to their calls.

    It put an immense strain on things, especially as I was running a business here in NZ - trying to sort and co-ordinate hospital, surgery and then a nursing home all the way from Auckland was certainly interesting! However, the Social Services people were really helpful and very kind - even to the point of recommending and helping me to source a bed for her in a home.

    When all is said and done, we do feel the responsibility very keenly and having support from the immediate family around you is so important. I think it was the 4am phone calls that got to me (and them) in the end!! I ended up getting on a plane in the end, which was a blessing as I managed to spend a few weeks with her before she died.

    Taking time out for ourselves is also vital - otherwise I think the strain of it all can become so overwhelming. Where Jann talks about dinner with her partner - I think we can forget that they contnue to need us too!”

  • Tuesday, 24 July 2012, 11:37a.m. by Sarah WS

    “Thank you so much, Gretchen, Frances and Katie, for generously sharing your experiences and feelings. Gosh - HK to New Plymouth, Bay of Plenty to Dunedin and Auckland to Exeter, I am blown away by the magnitude of those logistical challenges to say nothing of the career and home sacrifices. I will doubly appreciate having only a few minutes run north next time I go up to my parents'.

    One thing that strikes me is that though (unlike with babies) there is ultimately no happy ending available here, and despite all the difficulties and challenges, there is such a theme of satisfaction and happiness of spending time nearer the end with the ill parent. It seems like the bittersweet reward - but I do note Frances' description of the cocktail of emotions at the very end, too.

    Deep breath, shoulders back, onward...

  • Monday, 30 July 2012, 08:58p.m. by Jessie Snowdon

    “Hi Sarah and others - this is a very articulate story about a situation I see daily in my role as a Physio working privately with Older Adults. I'm very aware that it is usually the daughters that I communicate with and for those families who haven't had previous experience with the health system it can be so daunting. When my mother was caring for her in-laws in their last years I became the 'health interpreter' as just knowing the right things to say to the GP to trigger the avalanche of care and resources was crucial. There is so much out there which people aren't aware of unless they ask the right questions (and nobody tells them what those questions are!!) I often recommend the following organisation http://www.carers.net.nz/ who publish a fantastic magazine full of things that you would have never thought of. I also have some free resources on my website http://www.onthegophysio.co.nz/resources.html which are targeted more at people like yourselves rather than the older adult themselves, which I hope may be useful. For people living in Christchurch we provide home based physiotherapy and are an option for beating the waiting lists -especially if falls are the concern. Good luck with your journey - it can be an impossibly hard time and (as has been said) it's so challanging as unlike caring for children the reward isn't seeing them growing up and needing you less. The most important thing I believe you can give is advocacy, as this is often a generation who do not speak up for themselves, and dignity. I believe seeing parents age makes you question your own mortality too .... an extra thing to add to the pile! Keep taking those walks and giving yourself breathing space. ”

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