The Joy of Living With Ageing Parents

 

I’m writing this blog about living with ageing parents to try and give some emotional support to people who find themselves suddenly with the responsibility of caring for their parents.

This is not a blog that's going to bash anybody that feels that they cannot cope with this huge responsibility. Rather it is an encouragement to let those who wonder whether or not they can, to let them know that they can. 

This is a discussion to help with the realities on a day-to-day basis,  the not so pretty things as well as the joyful things and to help navigate through the minefield of social services and support and how to apply for it.  

In Australia the methods of social support for the ageing are changing on a daily basis. It is very hard to keep abreast of things. Understanding how complex it is when there is no one to explain it to you, when even those within the system itself cannot even explain it to you, is incredibly difficult, on top of the other stresses you will be facing at this time in your life.... but it can be done. 

• Whether you choose to continue working as you care for your parents or 
• wish to give them full time care yourself or 
• part time care yourself and part time care by others or 
• even if you have to make that decision to put them into full time care – 

how to do this without guilt – and still maximize the experience for both you and your parents.

It is a time of transition. In pagan times the person who could no longer care for themselves became a valued elder.  Just as it took a whole village to raise a child, it took a whole village to care for the elderly. There is evidence around Bright in Victoria, that the Australian indigenous had aged care facilities where several nomadic groups/mobs would share the responsibility of caring for these valued elders.

There is no doubt that caring for ageing parents is a privilege. It is a privilege that is the mirror image of raising small children. It can be just as joyful, just as sorrowful and just as awful.  Just the same as raising children can be. But one thing is for sure,  it is very emotional for all parties concerned.

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To Choose To Care

Dealing with the reality of seeing them grow small, childlike and dependent is a difficult thing to face.  It will confront you with the reality your own mortality. As you look at death inevitably creeping up on them you can see it creeping up on you too. Death comes to all of us. Everyone we know will die. Caring for ageing parents is a constant daily reminder of this. No wonder so many get scared and turn away. It is easier to face at a distance. To 'have them well cared for' in an 'ageing lifestyle facility' where you only have to visit every now and then. You can tell yourself it is 'better for them' and you can forget and get distracted by life and binge watching and social media in between visits.

But my husband's parents were very vocal about what they felt was best for them. They did not want to be in a facility where all they have to think about is that they can no longer be active participants in their own life. Doreen used to be an aged care nurse herself and she was terrified of being left far away from family to die alone. She did not care that her son was just a blokey bloke, not the cleanest person and not the most attentive. She would rather be around family, and involved with family life, then in the most luxurious place in the world without them. That is her decision. Fortunately, we are in the position where this is possible for us to care for her and her husband who has advanced dementia. Many people have such over committed lives that they do miss out on the opportunity of caring for their ageing parents. 

My husband is a big softy, and even though he has not always been close to his parents he wanted to try. And I could not say no to my big hearted man.  Even though Robert and Doreen are not my parents, and even though the burden of the majority of the care has fallen to me, I feel that it has been a privilege to have then in our home for the last 7 months. I can see this has been a scary time for my husband. These are the people that he has always turned to when he needed something, now no longer being able to be there for him.  Now it is his turn. our turn to be there for them. 

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The Elephant In The Room

 There is no doubt that when parents come into your care that both you and they become aware that they are in deaths waiting room. This is the elephant in the room. Let’s just get it out there.

We live in a society that is incredibly uncomfortable looking at death. It somehow feels that all death should be avoided. Yet the truth that indigenous societies understood was that all life is founded on death. Life cannot exist without death. Death with life forms the cycle of all living things (including many things that we would consider inanimate) 

All living things pro generate and then they degenerate and by their degeneration they give back to life itself. The humus layer, a layer of rotting decomposing matter, supports the growth of seeds, mycelium and microbes. The plants grow, then plants die to feed the animals,  and they us. All eventually give back to this rich planet enshrouding layer of blackness from with all life springs and continues to grow because of it. 

People and things don't just die. Death is the collapse of a system that supports the life of the organism. Some'thing' will end every person's life. A person can be healthy all their life and then the end is sudden, but it is always caused by something. Heart/circulation failure – cellular failure called cancer –Immune failure – called infection/virus –– blood sugar management failure called diabetes-digestive failure -hormonal failure – renal failure... Ageing is the breaking down of the body to where something fails and the organism can no longer sustain itself – Then the life force energy is given up. Then the matter of the body is broken down and reabsorbed into the world matter.

All indigenous cultures have a way of looking at this cycle. Many belief systems are invested in the life energy returning within the group. Renewed souls returning to its psychic peer group, so as to speak Grandparents becoming children again within the family.  However, some believe the energy journeys on and goes elsewhere. Yet in nature we can see this return reflected everywhere. Thehe cycle of life is the circle of life, Ageing parents follow the steps of a child growing in reverse. Like Benjamin Button, we see them getting smaller shrinking being able to do less for themselves, needing more care and more support, needing to be fed, going back to nappies. Even to the point where the caregiver will listen for every breath just as they did with a very new born child. The breath establishing its rhythms of life, until that rhythm stops and all is quiet. Then the realm of matter reclaims the body, but not the memories, not the love, not the essence of the person. Einstein said, in letters to the bereaved wives of his former colleagues, he 'believed in life after life because you cant destroy energy.'

What ever your belief, this is why it’s so important to maximize those final years.  I have spoken to so many people that regret not spending more time with their ageing loved ones before the end.  I can tell you that every person who expresses this regret, their inaction has arisen out of a sense of denial of the inevitability of the finality that is moving towards them.  Yet, if you accept it and can speak openly with your parents about it it brings closure before during and afterwards. Arrangements can be made, final wishes expressed. Wills can be made clear to all parties involved and this certainly helps prevent disputes after the love one passes away. Additionally, there will be no unfulfilled desires on either side. One of my exes whose mother died last week is crying regretting that he never took her on the cruise he promised, because he kept telling himself he had more time. Additionally, for the parent, bucket lists can be fully accomplished, and you as the child can have the joy of helping to facilitate a parents life long wish, that they perhaps denied themselves because of their parental responsibilities. the cycle of life comes together again.  Those final years can be a celebration, the joyful climax and accomplishment to an amazing life. the end of a performance without equal. Because you know it, discuss it and are there for them, you can be the catalyst. Of cause this is your choice. Death can remain an uncomfortable fact that both you and they attempt to ignore. But when this reality is embraced the joy of life can be experience to its fullest, in the full knowledge that nothing should be wasted, especially not time. This awareness enriches both the parents receiving the care and the caregiver.

Please don’t get me wrong. It will not always going to be sunshine and roses. Caring for ageing parents is so similar to raising a small child. The tantrums, the tears, the funny little things. It will have you in hysterics, and the tragic things that will have you sobbing. They do not always cooperate – don’t expect full corporation. Be ready for their rebelliousness. Yes it is a rebelliousness of a parent now needing to give control to the child that they have controlled for so long. It is also the rebellion against the inevitability of death, feeling cheated by the end. However, this feeling of being frustrated is lessened if you can help them accomplish some things that they feel they have not done yet. Things they have not experienced. Of course there will be resentment but there is a gratitude that a small child cannot give to the parent.

Of course raising a small child with all its promise of future hope and joy is easier emotionally then to see a reflection of your own mortality in front of you. Yet, even that knowledge, the reality of seeing that in front of you, makes you want to live your own life to the fullest. Living your life to the fullest does not mean just living your life for yourself. A selfish self-centered life soon becomes hollow with the repeated subconscious question nagging, why are we here...? what are we here for..? To see your own progenitor is in front of you disintegrating makes you realize that you must maximize your time. It also makes you aware of the value of true service. Service to another from a place of love from a place of your own gratitude for what they have done for you as a small child, for what they have done for their own parents, and for all the things that they should have done in their life and for all the things that you should’ve done. This is the ultimate act of service of giving back to those that gave you life. It is selfless, even at the times when they are selfish, when you are selfish, when the world is selfish.

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Isolation & Lockdowns Nearly Killed Them

We rescued my husband’s parents from Sydney and brought them to the Gold Coast to live with us after they spent 14 months in isolation and lockdowns. There was no help. No one could go to their house because of the lockdowns. There was no support for them. The doctors solution was to keep prescribing more sleeping tablets and more painkillers A very addictive medication ordered via phone and delivered to their door by delivery person who they never saw. Of course the quantities got larger with the addiction, and with the addiction came more desperation. It is horrifying that without question the prescriptions kept coming and the medications kept arriving. Yet no human contact, just a phone call asking did they need another doctor's telephone appointment as their scripts were running out. Delivered came with packets of cigarettes paid for by credit card over the phone that was kept on file by the local pharmacist. By the time we got there, Doreen was taking eight normoson sleeping pills a night and smoking three packets of cigarettes a day. The previous year, Doreen has been hospitalized for emphysema three times. Yet that was not taken into consideration. They kept delivering cigarettes and sleeping pills. Not once did they ask them did they need food or other groceries. Ken's nephew did do some shopping for them but had no idea that things were as bad as they really were. This demonstrates that this selfish society is set up to make money, that the lockdowns are about people making money out of the vulnerable people and that the lives and the health of the elderly and the vulnerable and not the real issues here. My father always said "When you don’t understand something, when the government is doing something that makes no sense, always follow the dollars."  And the dollars, for the last two years of insanity, have led to the death of the vulnerable,  just like Ken‘s parents. 

We know that there are many, many, many, similar cases like ours – feel free to share your comments below about your own horrific situations happening because of selfish laws imposed by a selfish government, promoted by selfish TV stations for very greedy selfish reasons, that only profit drug companies and that have nothing to do with protecting anybody.

But, wait, that's not all... No, no, no !!! There's more!! 

Add to this that, the roof on the house had been damaged by Sydney’s March hailstorms. Water was coming into the house. The house was full of black mold. The roof was leaking onto their bed. They couldn’t cope. They had called and reported it to the insurance company but nobody came because of lockdowns. So in the absence of any action they were just throwing towels on the bed and sleeping on top of the wet towels. And when the towels ran out they were throwing their clothes into the puddles on their bed to try and mop up so they could have a drier place to sleep

We did not realize it was this bad. They didn’t tell us. They were trying to be brave. Of course we had also contacted the NRMA to fix their roof but no one came out  and no one from NRMA checked that the work had been done. When we phoned his parents to see how they were doing they would just tell us that they were okay because they did not want to worry us. Writing this on Fri 7th of Jan, 15 months since the storm lifted the tiles from the roof, the insurance work is still not completed!

Over the last 7 months, since Ken's parents have been with us, we have spoken to so many age care workers with similar storys for their clients. They tell us how selfish lockdowns set in place supposedly to protect aged and vulnerable people like our parents have been killing thousands and thousands of them, far more than would ever have died from the covid flu.  It is very sad to realize that our parent's story is not a story in isolation but it is a story about isolation. How they went from living independently before lockdown with us visiting to do things for them every 3 months or so. Then by the end of their isolation when we rescued them, they had been so damaged by isolation that they had given up and are now totally dependent upon others.  Selfish times by selfish government for selfish reasons that made no common sense except that somebody somewhere is making a lot of money out of letting a lot of people die for a lot of the wrong reasons. 

We know that we are the lucky ones. We were able to get my husband’s parents out just in the nick of time. They were 36 and 38 kg respectively when we got to them. They went from being tough and nuggety to looking like concentration camp victims, frail and hardly able to walk or talk. Now they weigh 45 and 55 kg each respectively. However the emotional damage will never repair. They are very clingy and needy. Even though they spent 14 months in isolation by themselves they are terrified when we leave the house that "IT" will happen again. We are re-socializing them,  taking them to senior-citizen centres. We are re-introducing them again to having interaction with people their own age and to music. How Robert has missed music. Ken‘s father lights up at these seniors concerts that they hold. It doesn’t matter if it’s a professional musician or just one of the carers getting up and singing for them, he loves it. His world lights up and all the troubles are forgotten for a while.

Now we have them healthier and happier than when we first found them, when we first got them back out of isolation. However, their physical and mental health has for ever been damaged. Ken’s father who had mild symptoms of dementia before the lockdowns is now very advanced. Those 14 months without human contact have rapidly accelerated his decline.

It really has been a hard process to find out what services are available to them. Thank you to our lovely doctor Victoria and her nurse Laticia who have guided us through the process, the patient people on the phone from the various agencies and the wonderful people at Beenleigh Senior Citizens Club who have given usclear and precise advice all the way through.

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The Western Sunset of Their Life

One of the first things we did when we got them up here, when they were stable enough to take them out, was to take them to the top of Mount Tambourine, very close to where we live. We rugged them up and took them to the lookout to show them the western sunset and then took them out for a very nice meal. Their stomachs had shrunk and they could eat very little, they still love having a cappuccino and a pick at a nice meal. 

It was ironic seeing the golden evening sunlight light on their faces and shine through their hair as they hugged each other at the lookout realizing that they are facing the sunset of their life. The light of life is sinking in the western horizon for them but like all sunsets this can be breathtaking to experience with its own beauty. 

When we watch a sunset, we are not sad that the day is ending. When we lexperience the sunset we are left with a sense of wonder and awe. What is over the horizon? Where is that light shining now? What will tomorrow bring? 

 

This sense of wonder and the joy of witnessing a vast horizon lit with a western sunset is what I hope to share with people through this blog.

 

Enjoy this adventure with your parents

 

 Every Blessing to you 

 Shé D'Montford