Connections: Caring for my parents – a rollercoaster ride

Linda had to learn a lot and fast when her parents moved from the country into a unit near her. This is her story about caring for her parents.

Caring for my parents – a rollercoaster ride

My eight-year-old granddaughter Imogen ‘Facetimed’ me recently for one of our usual lively conversations. She told me that at a school assembly she was to have a part in a presentation about CARE. She would be one of four classmates holding placards that spelt out CARE and she would hold the letter R. The words chosen to represent CARE were Consider, Aspire, Respect and Engage. Here's my story about ‘care’ and my ageing parents.

Twenty years ago, I was 40 years young, in the prime of my life, and living in Perth.
With a professional husband and two daughters, my days are busy with work, hobbies and dreams. Hubby and I are vital, connected and in love. Life is good and life is ours.

Regular work flows, exercise and social activities consist of 10 hours of tennis a week, spontaneous lunches and dinners with friends, beach walks and short trips away. Music is my first passion. I’m a back-up vocalist in a band. Writing is another. My camp is in good working order. I am a red hot mama and not prepared for what is about to come.

It’s 1998 and a crisis is approaching like a tsunami.
No, it isn’t the Global Financial Crisis. It’s ageing parents who live hours away in the country. My folks, especially my father, need help and support. They reveal they are sinking in a black hole drama and can no longer cope. Dad is 75, my mother is in her mid-60s. There are family issues, and both are depressed and heading my way.

A removal truck has been hired. Mum and Dad are vacating their residence and moving to the big smoke to live two minutes away. Was it gender that they chose me? Was it because I live in an organic green suburb on the cusp of the Swan Valley? Perhaps it's the awesome public transport, hospitals and doctors close by, and a choice of shopping centres and facilities. Or was it because I'm caring? Did my old parents trust me? Did they know I would aspire to consider them and give respect? Did they know I would always engage them and tune in emotionally?  

During a six-week period over that Christmas in 1998, my life course changes. I have been selected out of four siblings to chart my parents’ final years. At age 40, I inherit them. Me. Who would have thought! I know I didn't.

Mum and Dad moved into a small unit, one street away. Shift day is both hot and exhausting. My husband, older brother and I all help. My mother throws herself into the move, my father doesn’t cope at all.

Settling them in emotionally takes about three months. The big change for them is daunting. In the following weeks, I try to help them adapt to city life and its systems. I witness their capabilities and their limitations, one of them being a lack of confidence about driving in city traffic.  

I help them navigate such places as Centrelink, my doctor’s surgery and other clinical services. Increasing awareness hits me that as your parents age and slow down in many ways, this translates into you needing to adapt your pace to stay connected with them – both mentally and emotionally.

By this stage, I haven't been out to dinner in two weeks.

It's now 2010 and I'm prioritising my time even further.
This isn't how I pictured my 50s. My dad is now 87 and mum soon turns 75. Two European parents, both with ailments and depression. My father has become more frail. The real Global Financial Crisis has arrived and other siblings seem to be unavailable.

Luckily, neither of my folks have any form of dementia. Mum can still cook and clean and is competent around the house. This keeps her sane but she becomes overwhelmed with Dad's age-related health issues. There are plenty of symptoms: back pain, aching legs, osteoarthritis, falls, hearing loss, vision loss, prostate issues, and dealing with new medications. I’m hearing and seeing changes on a daily basis. Depression and isolation are increasing, and my father is grieving for his once manly and active body.

As his daughter, seeing him like this is very confronting. He is weakening and I can display no weakness. He is relying on me. I now become selfless and it is during this phase I see a side of myself like never before. I'm now feeling like the informal carer. I have the doctor’s personal mobile number and chemists know me by my first name.

Women like me, voluntary or not, contribute a huge amount of our lifetime to old parents. We just project manage and are on call 24/7, and we somehow just slot the time in. We become miracle workers. Why? Because we wish to protect our parents. We become the soldier guarding the door. We attend doctor visits and have the ambulance on speed dial. We know all the emergency rooms, toilets and cafes and staff in hospitals. We become drivers, cooks, cleaners, interpreters, shoppers, administrators, financial planners, documentary makers, dinner buddies, social organisers, tea ladies, mental health workers, first aid nurses and so much more. Being an advocate for a parent is a job.

Time passes, and it's now 2012
Forget learning French. Ageing terminology is my new language! Words such as macular, pulmonary and pedal edema come out of my mouth. Edematous is present in Dad every day. My father's decline and need for outside medical assistance is increasing. Bladder cancer is detected. From the ages of 90 to 95, hospital stays become part of his regular cycle. These can be for four to 10 weeks in any one stay.

My father threatens to go on a hunger strike because he's had enough and wants to come home. I have to distract him and think on my feet. Buy some KFC and take it to the hospital. That will work!  

Depression is setting in for Mum. Thank the lord she is in reasonable physical shape. I am including Mum as much as possible in all my activities and errands to get her out of the house to lighten her mood. On top of that, I am at the hospital for hours every day watching over Dad. There is a lack of hospital staff. I'm checking charts and meds. I'm both tired and fully absorbed. I cannot remember when I last laughed.

The doctors are telling us that Dad should be placed in a nursing home; my father is begging me not to do so. I notice at this point he stops disclosing his ailments. Sleepless nights for me are becoming a thing. Is God really listening to me?

I start to see a weekly counsellor. I need to defragment with someone learned and professional who really understands. I'm starting to cry a lot at home.

Wine and chocolate in my fridge at home are a staple. Takeaway Pad Thai becomes a regular thing. My favourite jeans are too tight. Two new grey tracksuits and a pair of Skecher shoes have entered my wardrobe. I throw these handy clothes on without effort any time I get a phone call from Mum at 2am, when Dad is at death’s door and needs an ambulance.

Google has become my best friend. I begin to read all info on how to access at-home care services to keep Dad at home and respect my parents’ wishes. We need help.

Even though we are drained, Mum tells me she doesn't want Dad to go into outside permanent care with strangers surrounding him. I spend hours taking notes. I read and learn how to choose a care provider package.

There are four levels of home care packages – from basic services to higher-needs care. These vary from three hours a week to more than 12 hours a week. The first step to take in getting some government-funded assistance for at-home care services is to go to the Aged Care Assessment Team (ACAT) website.

Dad’s ACAT assessment is done at their unit. It is approved just two weeks later with a letter sent confirming he has been given the highest level package.

I begin to Google some package providers and make phone calls, such as ‘Help at home: costs explained’.

Eventually, I choose a company that would send a fit strong man to assist Dad daily for two hours. At this stage, Dad was wearing adult nappies for incontinence.

Dad lived and suffered until he was 95. His passing was in autumn in 2017, about one year ago, but it only feels like four months.

He spent the final six months in a nursing home very close to our house. My mother stayed in their unit. As they were now separated and not living together as a couple, their individual Age Pensions increased by $100 each. His pension fully covered his fees and all medications at the facility.

Mum and I never abandoned Dad, and visited every day. Eventually, Dad’s dark night arrived. I was at an Adele concert with hubby and got a phone call from the home at 9.30pm letting me know. We left the concert immediately and drove in silence. We picked up Mum and stayed with Dad until he passed eight hours later.

It was pure relief that his suffering had ended.

I didn't cry too much at his funeral, I had done my grieving long before. I read his eulogy, honoured him, then played his favourite song – I Know What it Is to be Young by Orson Welles. After you read this, have a listen, it's both beautiful and insightful.

What did I learn?
Looking out for an ageing parent is important work. Try to not run from it. Yes, it’s demanding, requires courage and often feels epic in every way.

When the call goes out, I have learnt that some siblings may not heed the call. This may be because of distance, fear, insecurity, inadequacy. If you don't get the help required, you will hopefully still make the right decisions. It reveals much about family relationships and siblings, but especially about you. For me, it was just about CARE and yes, there was a sense of old-fashioned duty.

What I've truly gained from this long experience is the ability to form deep relationships and accept ageing and vulnerability as natural. As a woman in this youth-obsessed world, I am and will be at peace. I hope to pass this on to my daughters. I also recognised the impact Dad had on me as a kid: the gifts he imparted, like music, and the abilities he instilled in me. These helped me later in life. He had made me strong. He probably knew that one day I would be the one to take this journey with him! 

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    COMMENTS

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    mogo51
    27th May 2018
    10:42am
    I read your article with great interest. My mother has suffered mental illness, alzhimers, dementia etc. Been in a nursing home for more than 30 years. She passed away just a month ago aged 96 and had a miserable life.
    You are to be congratulated for your efforts for your parents. My sister has been as giving as you have, as I basically live overseas. Only coming back annually to try and lend a hand.
    Now my Mum has gone, there is a void, notwithstanding her poor life standards.
    This of course raised another issue about quality of life as opposed to just sucking in oxygen .
    I hope your Mum manages the balance of her life as i am sure she will with your kindly assistance.
    Nanna75
    27th May 2018
    10:54am
    Thank you Linda for sharing your story. It's opened my eyes. I cared for my husband for many years and became quite isolated from social activites. I couldn't understando why I didn't shed any tears for him when he died. My doctor said I'd been grieving for years so that gave me comfort, I now need help and my youngest son is my carer, but thanks to My Aged Care who have put me in touch with many organisations etc to make my life more enjoyable making friends and getting out and about. Thank you for sharing. God bless you.
    Ikantu
    27th May 2018
    11:23am
    A wonderful insight to ageing and the support family (may) provide, and the toll it takes on those family members. We are all heading in the same direction and, whether we like it or not, will end up being a contributor, or a receiver of support. Most older people would prefer not to be a burden on family and can make some arrangements around that, so the role of family cared should hopefully be a supportive one. I take my (figurative) hat off to you, and all the other family carers in our modern society.
    Lou Lou
    27th May 2018
    11:30am
    I too have been where you were it took away all my 50’s
    While still caring for my family and grandchildren while my sister all just watched on. When my mother passed at 98 I could at least stand at her grave and say I did the best I could . The toll it took however on my own health was immense and took at least four years to recover.
    Then my husband was diaganiosed with dementia I was in my early 60’s he was approaching 80 he virtually change
    Over night. He became suspicious of everyone including me and starting talking more and more with his older daughter from his first marriage. She conspire behind my
    Back to get power of attorney of him as you don’t need to notify the person who currently has it me. Then made him sign over all our investments by binding nomination
    Then one day he was going to give both them money from our saving to each of his daughters.He would not listen to reason so I went to the bank and with drew two thirds of our savings and put it into my account where I had my pension going into. When I told him he exploded
    She flew over from Sydney said our marriage was over closed all our accounts as she had the power of attorney.
    I literary got kicked out, then forced to sell my house
    And have been fighting a legal battle with her and her other three siblings now for 8 months. Up till now they have only been offering me 40% they don’t really care about there father because they’ve all lived interstate for the last 30 years of our marriage they only want his money. Our son from our marriage is caring for him
    While working full time. My biggest regret is when lawyer shopping I should have gone down the path of taking it out of the hands of his daughter through the guardianship board but hindsight is a wonderfull thing.
    I was so emotional traumatised at the time I could barely think. It is now eight months since this happened I still have no settlement and living only on that money I took which to this day he say I stole out of our joint acc.
    My legal fees are gobbling up all the money . I have been to so many departments to tell them of my situation and no one wants to get involved. What is the point of making legal documents when a stranger can come along
    And change them and you there legal partner do not need to be informed the system is all wrong. That’s why there is so much elder abuse going on. This has to stop .
    Lou Lou
    flowerpot
    27th May 2018
    11:48am
    My mother is in a care home in the UK. My brother lives 400 miles from her and visits monthly for a few days. We tried moving her near him and she hated it so she moved back. She has no memory. I visit once or twice a year but it is too expensive to do that more often. She is nearly 95 and has had enough. Modern medicine is keeping her alive but for what? All her friends are dead, she has dementia and should have died happily and in her right mind five years ago. Why are we so afraid of death? It's a natural part of life. Now she is stuck on a wheel of pills and unhappiness and loneliness. Life must have some purpose or it's no life.
    Mac
    27th May 2018
    1:50pm
    Thanks for sharing your story. I went through a similar experience with my spouse. The nurse asked me if I was a nurse when relating to her my spouse's medical ailments whenever he was admitted to hospital. No, I replied, it is part time education as I researched everything.


    COMMENT TO LOU LOU - re changing of power of attorney. I sympathise with you and hope that you can have some resolution to your problem.

    Is there any chance that you can challenge your husband's actions as he was diagnosed with dementia? It is probably not too late.

    I can empathise with your emotional turmoil. My experience was not as bad as yours regarding family from 1st marriage but bad enough.
    Hopefully you will find emotional peace. Music and meditation helped me immensely.

    Is there a Consumer Law Action Centre (CALC) or Housing for the Aged Action Group (HAAG) in your State? Perhaps Council for The Ageing (COTA) may be able to help as there have been articles about elder abuse on their website newsletters.

    As for living expenses have you been to Centrelink or tried an agent who will co-ordinate your financial documents to submit to Centrelink?

    My best wishes to you in your predicament. May everything turn out well for you so that you can live the rest of your life in peace and happiness which you deserve.
    OnlyDaughter
    27th May 2018
    6:51pm
    Linda, your article was most interesting and I feel for you. I am 69 and I am faced with being the main carer for my 92 year old very physically fit mother who has vascular dementia, neurosis, possible schizophrenia or other mental illnesses, and is a nightmare. My Mum lives in a fabulous retirement block of units, fully supervised, full medical care, many activities and all she does is complain. She makes wild, unfounded allegations and because she looks so great and is physically brilliant, people actually believe her. She has gone to her bank and complained that her EPOAs are stealing her money and even though the Bank clearly showed her that no money had been removed, she refused to believe them and turned on the bank employee. She tells people that her family has stolen her house. She tells people that her family has forced her into this aged care and she is being held there against her will. She has told people that her family have stolen her money and she is never given any. She complained to the Office of the Public Guardian, triggering an investigation and requiring the 3 EPOAs to front. Every thing she has alleged was completely disproved by the OPG during their investigation but there are former family friends and church members who still believe her and she is still making these wild,hurtful allegations. People tell me that it is not my mother making my life a nightmare, it is her illness. I have heard this far too many times now. This is like telling me that it is not the sick person who burned my uninsured house to the ground, but their illness and I will just have to live in the ruins. I have to see a psychologist now to cope, but I don't cope, that is the problem. I have had to take medication to cope, but it just makes me sleepy and I still don't cope. I never thought I would feel this way but when my mother dies I will be sad, but I will not be sorry.
    Goldbangles
    27th May 2018
    7:01pm
    Love the song too.
    Chris B T
    28th May 2018
    9:03am
    When one sibling takes in or cares for Parents nearby or have moved closer to you. The other siblings disappear or say there time poor, can't manage, at the same giving advice and instructions.
    This really takes it's toll on you, how many out there are doing the same thing.
    Goldbangles
    28th May 2018
    11:34am
    I'm understanding as we approach elder care ( and soon also to be cared for ourselves) that its either the body or the mind that go's ! I've also learned that siblings many run from this fragile parents final passage in life. What I do know for sure is, that during this time..... TIME around and spent with aging parents is what's valued to them. Good job Linda, just a caring inclusive soul.
    Lou Lou
    28th May 2018
    12:44pm
    To only daughter know your not alone, as this is exactly
    What my husband is doing to me they can put on such a good act and make people believe them that you become the abuser. I’ve been seeing a psychiatrist for over four year to cope with the abuse . I’ve heard it all too there illness aging ect dementia is just progression of your personality if you were mean before you just become meaner if you never trusted people before you won’t even trust your spouse or children ect after. I have ano contact rule with my spouse till my separation is over. Then I plan to move as far away to try to forget that this man conned me for 30 years . My husband is first and
    Foremost a narcissist then has asbergers and front lobal vascular dementia. I should have gone down the path of the guardianship board but when the lawyers were talking around $60,000 it scared me of but I now know that is the path I should have taken. His golden child
    Who is as demented as him has full control over all dealing including the lawyer. As she is a corporate lawyer in Sydney she has so much advantage over me I told my lawyer from word go you are dealing with two very sick narcissistic people do they listen now she is eight month later and I’m $20,000 less money . I am going to a elder Abuse forum being held in Adelaide this June and I want to bring up what happened to me I could have gotten much more help from the Dementia foundation and didn’t it’s always about the person who has it but what about the carer don’t we count too.
    Mac
    28th May 2018
    2:38pm
    TO LOU LOU

    Hope that you achieve some good results from going to the Elder Abuse forum in June. Don't be afraid to speak out and tell your story. Perhaps you can go back to the Dementia Foundation to see if you can get some help from there. Someone might know where you can go.

    When everything is finalised, say to yourself that your future will be spent in peace and harmony compared to your turbulent past. Find yourself again.
    Kram
    20th Jun 2018
    12:11pm
    Thank you Linda for sharing your story. Please be aware that there are many sons ( I have an 88 year old father still living in his house of 52 years) also caring for aged parents. The ‘Women like me’ comment is not accurate