Lessons from my Dad, in and out of aged care

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It’s been a difficult year for my 82-year-old widowed Dad. He had a strong heart, perfect blood pressure, complete mental capacity but a troublesome skeletal frame. In February this year, he collapsed out of bed and was unable to walk, even a little bit. He’d been wobbly for a while, then on a frame, then finally his legs just couldn’t support him anymore.

The surgeon gave the prognosis: endure two major neck and back surgeries, followed by a year of hard work and physio, or end up in a wheelchair in a nursing home. Not much of a choice. He chose the surgeries, and a long and horrific few months followed.

By June it was clear that the hospital and rehab environment was not doing him good. He was despondent and his progress plateaued. Although still in a wheelchair, it was time to find alternative accommodation where he could be looked after and continue with the rehabilitation.

My sisters and I weren’t in a position to take him in, nor did he want to live with us. He wanted to stay in Sydney near his friends and support network. An aged care facility (read: nursing home) was the only option available (we thought). Fortunately, he had the means to take his pick.

We found one that we thought would be ideal: Sydney harbour views, award-winning dining, luxury and style. Dad would love the company of others and a bit of nurturing that he hadn’t had since Mum died a couple of years ago. They even have an in-house physio programme.

We did the negotiations, he was discharged from the hospital and he moved in. No doubt, it was a better environment for him than the rehab hospital, but for poor Dad, it was not a positive step. They did look after him well, I emphasise that, but a nursing home is a nursing home, no matter how fancy it is. It is not filled with 65-year-olds discussing world issues. He felt he was the youngest there by years, and found no one on his intellectual level. He was lonely, sad and frustrated.

That, and the monthly bills, were enough to light a fire in his belly to work hard on his physio to get out of there. Eventually he moved from the wheelchair to a walking frame, and now after a 119 day stay, he’s headed home.

I’ve worked as a technical specialist and adviser in aged care matters for many years, and have written countless articles on the fees, charges, effect on age pension, and strategies. However, I now have a further – much more personal – insight into this process to share.

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Lessons learnt from personal experiences 

1. No matter how pleasant the facilities, or how many awards it has won, it’s still a nursing home. In many (but not all) cases, the residents are there out of need, not desire. The food is never going to be as good as home-cooked. They are running a business and working within budgetary restraints. Scotch fillet made to order and fresh fruit are a thing of the past unless the resident goes out for it, or a family member brings it in.

2. Speaking of meals, dinner is at 5:30, then it’s back to the room by 6:30. Makes for a long, boring night for a person who has full mental capacity and wants someone to chat to. In summer daylight savings, they are having dinner at what is close to afternoon tea time.

3. Read everything in the Resident Agreement, read it closely and understand it. If you don’t understand it, get someone to read it who does. I do understand most of these things better than the average person, and was still taken by surprise by some of the charges that popped up on the monthly statement.

4. Residential aged care can be breathtakingly expensive, and every little extra thing is charged. It’s that feeling when you’ve spent a week at an expensive resort, charging everything to your room, then it’s time to look at the bill. Only it goes on, month after month. The temptation is not to look at the statements, but please do. We found Dad had been overcharged a whopping 25 days due to an error in accounts.

5. Even for a high means person, it is worth completing the awful Combined Assets and Income Assessment form (SA457) from the Department of Human Services. We didn’t for Dad, but in hindsight I wish we did, as I think we’d have had a clearer picture of where he stood.

6. The Means Tested Care fee is based on the actual daily cost of care as determined by the Government based on the ACAT assessment. However, it is subject to an annual cap of $26,566.54 or $72.78 per day. As Dad was assessed for a high level of care, the facility charged this daily capped amount on the assumption that he would be staying for the full year. However, when he gave notice that he was leaving 119 days later, we got a nice little surprise … his actual daily cost of care was $214. His Means Tested Care fee was back-dated to the day of entry, and he was hit with an extra $12,600, which kept him just below the $26,566 for the 3½ month stay. My training and experience failed to see that one coming, even though I probably should have. It’s a trap for when a person exits the Residential Aged Care system.

7. Dad’s mobility has improved, but still has a way to go. The reason he can go home is because there are some excellent home care service providers that provide home help, personal care, companionship, transport, and specialist care (24-hour, dementia, palliative or respite). They can also manage the overall care and tap into nursing services, specialist doctors, GPs, equipment suppliers etc. If you live in an area where these services exist, it is possible to stay at home and miss the whole residential aged care step altogether. BUT, and it’s a big BUT, if you need to rely on a ‘Home Care Package’ to help fund it, there’s a long wait. Following the ACAT assessment, you’re put on the waiting list. No one really knows (or reveals) how long the waiting list is but it’s months if not a year or two. Dad will have to pay for his home care services privately until the package comes through (which is also subject to a means test). You can get more information about home care here.

Summary

I’ve learnt that although aged care in Australia has vastly improved over the last few years, it’s still not a happy time for some. It’s expensive, impersonal and can be downright depressing, although to be fair there are many positive stories as well. Many years ago, my Grandpa – deep in dementia – loved it. He got his three square meals a day and familiar faces caring for him.

I think my Dad has learnt that he wants to be at home, he wants his independence, and he wants to stay connected with the world. Before all this, and since Mum died, he was feeling lonely and isolated at home, but this time around he will revel in being back in his own space. He’s already in touch with friends and filling up his diary with social outings. More power to him.

This experience was a revelation to me as a long-term adviser in the aged care field. Even a person in a comfortable financial position who has the means to enter a facility with many extra services over and above the government-subsidised standards faces unexpected and disappointing experiences. In future when discussing aged care matters with my clients, I will urge them to investigate home care options as well as residential ones. It’s horses for courses, and it’s heartening to know that there are increasing options available for our ageing population.

 

Alex Denham is a Senior Adviser with Dartnall Advisers. Prior to becoming an adviser, she spent 20 years in senior technical roles with several financial services companies. This article is general information and does not consider the circumstances of any individual and is based on a current understanding of the rules.

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20 Responses to Lessons from my Dad, in and out of aged care

  1. Gary October 26, 2017 at 10:24 AM #

    Thanks for the personal perspective … I’ve never heard a good story about a nursing home.

  2. Eddie October 26, 2017 at 11:10 AM #

    Great article. I only recently did an aged care training course and its become so important in having the difficult conversations not only in personal life but in the advice space as well

  3. Greg Hollands October 26, 2017 at 11:36 AM #

    Welcome to the real world of aged care! Your experience is similar to many that I have been exposed to and also via bitter personal experience with my mother-in-law. Although in her case because she had a fall, there was the hospital battle to deal with which almost killed my wife who was there every day for almost 6 months.
    If you are elderly, in a hospital, you are invisible! The only person who takes an interest in you is the Bed Manager, who wants to know when you are leaving so they can have the bed for the next patient. We have to do better for for our elderly! I understand costs, but the ACAT assessments should be almost instantaneous, rather than months to organise. I believe that there is a limitation of resources in the ACAT area as a “brake” on the production line into facilities of whatever type. In many cases the ACAT assessment bears no relationship to the need of the patient, but simply matched to the available resources. If I am skeptical, I have good reason to be. But this article is a timely reminder of what it is like to be “up close and personal” to a situation that is likely to affect us all in the long term!

  4. David Reed October 26, 2017 at 12:14 PM #

    Excellent article Alex, well done.

    We have experienced similar insights with clients around the lack of mental stimulation, and as you have described, being surrounded by those that need to be in the nursing home rather than a desire has a detrimental effect on their happiness.

    We subsequently have spent a lot more time with new retirees educating and providing them with comprehensive checklists on Universal Design for when choosing which next property to buy at the time of moving homes – or particularly when a health event occurs and modifications are required.

    The vast majority of Australians want to Age-In-Place when elderly but even the newly designed homes of today are built for a society full of Peter Pan’s that never age.

    Surely an opportunity for savvy builders and architects to grab a slice of the burgeoning ageing population needs of the future.

  5. Ramani October 26, 2017 at 12:23 PM #

    Wish Alex’s dad a peaceful and relaxed time in his home, closer to familiar company and surroundings. The concern and stress the near and dear ones have to navigate are real and reflect that twilight years present irreducible challenges for the person as well as close ones.

    If a skilled person like Alex has to review the events for overlooked lessons, most of us from other occupations have little hope.

    Without in any way diminishing the challenges, I must pose a difficult question, though: Our system rightly expects parents to look after children when they cannot fend for themselves, and if one of the parents don’t, their financial resources are suborned by the state when the other parent or state has to step in. Why would this not apply when the children become adults when parents are in need of help, company and the human touch which no home can ever match?

    The western world has adopted several eastern concepts: algebra, yoga, all the major religions, acupuncture… Is it not time we infuse a modicum of oriental family values based on Confucian responsibility towards parents, as much as we axiomatically demand towards children? Why is this asymmetry of outsourcing the reciprocal offspring obligation to the taxpayer (groaning under age pension and ageing tsunami) acceptable?

    This is not intended to offend. If it provokes (debate, not acrimony), the purpose is served.

    • Alex Denham October 26, 2017 at 1:00 PM #

      Thanks for the comment Ramani, and for your well wishes to my darling Dad. Dad certainly has the option and invitation to move in with my family, but he chooses not to. I live outside of Sydney, on a rural property in cold climate. He would be very isolated during the day while I am at work, away from his beloved Probus, and he hates the cold. My sisters (who also do not live in Sydney) and I spend a lot of time travelling to Sydney to care for him and be with him, juggling young families and work obligations – the classic sandwich generation! I know many people my age caring for ageing parents while their own families take backseat. I think you’ll find that the outsourcing of offspring obligation is less prevalent than you imagine.

  6. Warren Bird October 26, 2017 at 1:04 PM #

    It doesn’t have to be a Confucian concept. The early Christians were urged in the scriptures to care for “widows and orphans”, ie the elderly and the young who in the society of the times were the most vulnerable. This is why so many of the aged care facilities that we have these days were started by Christians. Uniting is the largest provider and most of its facilities originally were local Methodist (now Uniting Church) congregations responding to a need.

    I’ve forwarded this article to my colleagues at Uniting (including the Board Chair and the Executive Director) because I know that they aspire to deliver a better standard and have been developing new facilities that address at least some of the concerns expressed here and in the comments. Always room to improve, but just as Alex hasn’t written off all providers in the article, I urge readers not to either.

    I might add that my own personal experiences with an in-law and now my own parents has fortunately been more positive and less troublesome. Among them they’ve covered the spectrum, from independent living through hostel to nursing home. It hasn’t all been perfect and we were glad to get my late father-in-law out of one place, but we didn’t get any negative financial surprises. Sounds like we got lucky, but we were well advised along the way. Don’t despair Alex, your input to your clients is, I’m sure, of great value to their decision-making.

  7. Kevin October 26, 2017 at 1:54 PM #

    My next door neighbor from years ago lived in a nursing home for a year, I would visit him once in a while, he hated it, the regulation, the feeling of being alone. Not locked in the room but virtually locked in with mobility issues. When I took him out for days he was so glad.

    He worked around the world a bit in his time and decided to take off and live in Thailand, where age was revered years ago when I worked there. He had worked in Thailand for a number of years on projects.

    He now lives in a one roomed flat in Bangkok, eating all that lovely street food as he is off the tourist tracks. Fairly close to the sky train to get around.

    The monks from the local monastery got him a dog for company, the school children talk to him to practice the English they are learning at school. He says he will never return to Australia and loves his life there.

    Ken Wyatt is doing some work on this subject I think, probably something will need to be done as one day it will happen to all of us.

    There is an old American guy lives in the same block of flats,he hires a middle aged Thai woman to take him out as he is wheelchair bound.Down to the pub twice a week,see some live music.Her children look out for him a bit. He swears that western governments should look into this as a lifestyle choice rather than vegetate in a nursing home.

  8. Ramani October 26, 2017 at 2:34 PM #

    In commenting on difficult problems, one has to adopt the average approach, but as Alex and others have pointed out, no one is just average. Extrapolation fails. Confucian, Christian or secular humanitarian, the current regime that mandates finanacial responsibility for offsprings but makes parents communal responsibility does need review (Singapore has done it).

    Money alone will not cure the problem, being one ingredient. I have found more than body comforts, company and being cared for counts.

    To those struggling with aged care, and those like me approaching it (most hope to, given the binary alternative …) best wishes and shared commiseration.

  9. Robert October 26, 2017 at 2:57 PM #

    Being at home doesn’t have to mean the home you have always lived in. A retirement village is an intermediate option, you are still independent, but can have as much social contact with other residents as you want, and don’t have to worry about home maintenance. Or climbing steps. And my village is in the same suburb as my previous home, so I have the best of both worlds, still in my original community.

    • Alex Denham October 26, 2017 at 5:22 PM #

      Hi Robert, that’s terrific! Unfortunately Dad assessed as needing high care makes him currently ineligible to buy into a retirement village. Certainly his plan is to get his legs working again to get more independent then he hopes to look into that option. It would suit him perfectly being around peers again.

  10. Ramani October 26, 2017 at 6:38 PM #

    Robert alludes indirectly to a psychological issue we face as we grow older. Familiar surroundings, family and peers cultivated over time cater to an emotional need that objectively better conditions often fail to induce. I have known old acquaintances who would routinely put up with mosquito bites (as they have always done) if they would not have to move.

    Just as we prepare youngsters for work (culture, attitude, social interaction), there is a need to prepare ourselves for declining faculties, changing personal circumstances (loss of spouse, relationship issues compounded by potential inheritance differences) and the eventual end in an empathetic way. In the past religion has served as a salve, but its influence has declined.

    Should not ‘advanced’ communities such as Australia pioneer the movement? There may well be action here that I do not know of.

  11. Martin Mulcare October 26, 2017 at 8:45 PM #

    Thanks, Alex,

    I am impressed that you are willing to acknowledge the challenges that you faced, even for an expert. My mother’s experience of an independent unit in a retirement village has been very good and my wife’s parents’ experience of higher care has also been good. The issue that strikes me, however, is the financial complexity. I am financially literate and I was overwhelmed by the confusing interaction of State and Federal regulations and the conflicting interests of the ATO, Centrelink and Health Dept. How do “average” people navigate all of these requirements? And how do people without the financial assets manage?

    Surely there must be a better way?

    • Eddie October 27, 2017 at 8:44 AM #

      Hi Martin, just saw your comment. I think you have raised some very interesting points regarding the financial complexities. Previously I have personally managed and also seen clients deal with very difficult and complex situations regarding managing finances. That is why it is important for them to see their financial planner who can guide them through this difficult time and help managing the financial well-being of the person going into care and their family. I previously didn’t think this was important until I had to deal with it – now I am starting conversations with all my clients and it has done nothing but add value to my advice process and my value proposition. I recommend looking at aged care courses out there that can build your confidence too – soon you will be able to help “average” people navigate their requirements and ensure their financial stability too when looking at aged care options.

      • SMSF Trustee October 27, 2017 at 9:40 AM #

        Yes. Good financial planners earn their keep helping people with such complexities, rather than picking stocks and trying to guess whether markets are overvalued or not.

  12. Michael October 28, 2017 at 9:10 AM #

    Great article, would like to note my observation last week when taking my elderly mother out and about, there were just so many people my age leading, guiding, helping elderly parents around

  13. Neil October 28, 2017 at 11:15 AM #

    Thanks for your article Alex, it has given me some much needed moral support.

    As a retired, tertiary trained professional (Mathematics degree) I was handed the job of organizing our 91 year-old father’s move into Residential Aged Care. In full seriousness, I am not sure who has been most traumatized by the move. I was well acquainted with the financial complexities, but I was quite unprepared for what was to follow.

    I have found dealing with the Department of Human Services the most demoralizing experience imaginable – whilst the individuals I’ve spoken to have all been pleasant and reasonable, their systems, forms and form letters are appalling. (My experience has been exacerbated by dad becoming eligible for the Aged Pension and the joys of dealing with Centrelink at the same time,)

    Within 18 months there have been numerous fee revisions and backdating, making it very difficult to plan. People should be aware that fees are reviewed every 3 months, and are in my experience likely to have major errors.

    Twice in that time, my father’s moderate assets have been miscalculated by several $100,000’s, which to any competent person would have been immediately apparent. The first case double-counted the Accommodation Bond and the second occurred when we sold his home- the modest proceeds of the sale were counted (naturally) but the $160,000 cap for home ownership was retained, despite his clear Centrelink status as an non-homeowner.

    Significantly, when I immediately informed the Dept of these errors, I was told I would have to wait until the next review, when these acknowledged errors would be rectified! I had to pay exhorbitant and incorrect fees in the mean time. In one case it took over five months of hassling before a correct refund was made.

    What happens to elderly people who don’t have a numerate advocate?

  14. Peter Stewart October 30, 2017 at 8:33 AM #

    But in 6. The Means Tested Care fee is based on the actual daily cost of care as determined by the Government based on the ACAT assessment.
    It’s actually based upon the Aged care Funding Instrument – an internal assessment by staff on the care needs

  15. Steve October 30, 2017 at 3:37 PM #

    Thanks for the great article. I have been on the nursing home roundabout three times now. I will set out some of my advice/ things learned.

    It is sad when someone older but in full mental capacity has to live in a nursing home, but I have seen people as young as in their 20s there because there was no where else for them to go.Hopefully the NDIS will now resolve that problem.

    When a family member is getting to the point that they are struggling at home you really need to get your [email protected] into gear. People wait till the last minute and that is not only highly stressful but it results in less than ideal outcomes. You will regret not acting earlier. I have found that getting advice from a social worker from the local public hospital is a great resource. They will advise you on what is available in your local community or give you contacts. An early assessment from the ACAT team will give you a sobering understanding of what is in front of you. With mum and dad, they helped to organise home care, cleaning, meals on wheels, and safety modifications for the house.

    It is essential to visit as many homes as you can and get a sense of the culture and what is the make up of residents (dementia / non dementia). You need to ask about dementia specific if you need that; and if they take wanderers. When my dad reached nursing home stage he had dementia and was a wanderer. After one unsuccessful home, we put him into a secure nursing home where again he managed to escape. No one knows how he got out, but they found him sitting in a gutter a few streets away. After that, they asked us to take him home because they could not care for him. In his last home they seat belted everyone into wheel chairs so that they could not get up and walk. If they don’t walk, they fall over, such was the philosophy of that place. Eventually the leg muscles atrophy and they cannot walk.

    Finances are such an important thing to consider. I have seen articles which well reason the idea of gifting money to the kids so that you can qualify for the age pension or part thereof, but when I have seen the cost of aged care, my advice to my older family members is hold on to your money and try to put some at least into growth. I can’t argue with the numbers provided by planners; they make perfect sense; but they don’t take into account the peace of mind that comes from being independently financially secure in your most fragile years. See how you go getting your money back from your kids if you need it. My third family member who went into a nursing home went into a home that was not lavish but certainly better than my parents had. His refundable accomodation deposit was $600,000. He could not afford that, so we took the option of paying $100,000 and paying the “interest” on the balance. His wife was still in the family home and would not have been able to cope with the stress of a mortgage, so we took their investments and put the equivalent of two years of nursing home fees into secure investments (such as term deposits) and the balance in growth stocks. In their case the aged pension increased when he went into the home, but still the pension and dividend income and interest did not fully cover costs of living and nursing home fees. My advice to anyone getting older is to not give away money on the assumption you will not need it, unless you are really wealthy and then the age pension is irrelevant anyway.

    Like Neil, I cannot understand how the elderly deal with Centrelink or Dept Human Services without help. It is ridiculous beyond words. For example when all attempts to update assets online fail, you go to the website for a phone number, but it is not plainly listed (or it wasn’t year ago when I last used it). My experience was that when you find a number that looks like it might help, it leads to a dead end recorded message. It is by far the worst, but most large organisations are difficult to deal with if you are ringing on behalf of a family member. An enduring power of attorney appointing a trusted attorney is essential.

    My last piece of advice is to visit your family when you have them admitted and take the time to say something nice to the other residents. It is devastating how many older people are just abandoned and forgotten. I sat with my dad in the rec room one day. A guy nearby also tied securely to his chair leaned out to me as I was about to leave. He said “Is he your father?” I said “yes”. He said with a broken voice as he shook my arm “Sons are very important”. He had an addressed envelope on his lap. He said “I have just written a letter to my son.” I asked if he would like me to mail it but he asked me to give it to the nurse. I said “Does you son ever visit?” “Oh yes’ he said “… he just lives a few streets away so he visits all the time.” I dropped the letter to the duty nurse and I asked if the guy ever gets visitors. She looked at him scantly and said “I had never seen anyone visit him.” A very sad thing.

  16. Doug October 31, 2017 at 2:32 PM #

    Thanks Alex and the many other people who have kindly made the effort to respond to her article. The information provided is immensely useful but makes for sobering reading; I am dreading the day when I have to move my mother to care.

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