The Joys and Challenges of Aging Parents

The Joys and Challenges of Aging Parents
By Sharon Snir
There are times when the full weight of responsibility for our beloved and aging parents can weigh us down. There are so many people who find themselves in a similar situation to me. They too have parents who are very old and need various levels of care. Some of them have children who have not yet left home. Some have jobs and husbands that require their attention and they have their own lives and occasionally need for time and space for themselves.
Change begins with acknowledging what is.
My story began 15 years ago.
It is a story of how a disease called Dementia crept into my family unannounced and left us, my family , struggling to hold on to a life that was slipping away from us like a balloon slipping out of a child’s hand.
I am married my husband thirty one years ago and we promptly had 5 children. The eldest is now 29 and the twins are 21. Between them there is one daughter, 27 and another son is 22. Life in the our household has always been busy. I had little time for socialising in the early years. I spent the first 8 years either pregnant, breastfeeding or both..
By the time our twins were seven my mother was already showing signs of memory loss and confusion. Let me put this into some perspective. Fifteen years ago my mother was 71 and my father was 79. They were living together in their own home and socialising regularly.
As the years passed dementia progressed and because there is shame and fear attached to dementia, and because we did not want to hurt or upset our mother, our family did not openly address the situation. My mother was a master at covering up her confusion and although she occasionally forgot where she had parked her car or put her handbag she was always able to make light of the situation.
Friends however, began to feel uncomfortable going out with my parents. My mother, knowing she did not remember everyone anymore, began to greet everyone she passed, just in case she did know them. She jumped up and greeted strangers that came into the restaurant and left them scratching their heads as to where they knew this warm and effusive woman.
My father dealt with this by giving her all the freedom she needed and was always there for her to come back to. Their friends, however, found the situation embarrassing and frightening and difficult to tolerate and slowly they disappeared. Only a hand full remained and to this day only one of her old friends continues to visit her.
All this took a huge toll on our family.
During those years my father was really the sole care-giver for my mum. It was the most difficult time in his life. Just recently he had back surgery because he was in excruciating pain and could hardly move at all. Whilst he was recuperating he told me that as difficult as this experience has been it was nothing compared to caring for my mother. Caring for someone with dementia, especially in the later stages of dementia is indescribably difficult.
There are more than 1,000,000 Australians who are involved in caring for someone with Dementia. Understandably this results in significant strain on families and carers as they struggle to deal with the daily challenges that arise when a loved one has dementia.
International studies make it clear that dementia occurs in every country of the world. It affects 1 in 20 people over the age of 65 and 1 in 5 over the age of 80. Worldwide there are an estimated 30 million people with dementia. By 2050 the number will rise to over 100 million.
When someone in your family has dementia there are a whole range of feelings we experience.
Let’s look at just a few.
Guilt
It is quite common to feel guilty – guilty for the way the person with dementia was treated in the past, guilty at feeling embarrassed by their odd behaviour, guilty for lost tempers or guilty for not wanting the responsibility of caring for a person with dementia.
There is a thin line between supporting our parents and taking over for them. Throughout this time I felt that I was often talking over and was burdened by the responsibility. Another feeling, one that I had not experienced since I was a wild teenager in the late ‘60’s and 70’s began to creep in. I felt I was being deceptive. Every time I spoke to someone about Lily I felt disloyal and guilty. I knew that my mother, the one I had grown up with, would have been furious with me for ‘hanging our dirty washing out for all to see.” She believed that what happened in the family stayed in the family. I never heard her complain to any of her friends. Even when we were children, at our most rebellious, she would tell her friends how wonderful we were and boasted how we always told her everything.
If our parent goes into hospital or residential care we could feel guilty that we have not kept them at home for longer, even though everything that could be done has been done. It is common to feel guilty about past promises such as “I’ll always look after you”, when this cannot be met.

Grief and Loss
Grief is an emotional response to loss. If someone close develops dementia, we are faced with the loss of the person we used to know and the loss of a relationship.
After moving my mother into a nursing home, the first few weeks were almost unbearable. She didn’t settle in at all well. She paced the corridors and I did not know how to help her.
Deep painful feelings bubbled up and leaked into my days at unexpected moments. I could be standing in a shop and a wave of grief would rise up and without warning I would burst into tears. I woke up night after night dreaming of my mother alone in her room. I still could not believe we had actually placed her into a special care unit. I felt tired and sad most days and didn’t want to see friends or talk on the phone to anyone. I stopped writing. I stopped reading. I missed her.
I did not know what to say to friends. I thought, maybe I could say I feel like my mother has died, but the words would not come out. My feelings didn’t match the reality. My mother had not died. Emotionally, however, I felt there had been a death in the family and there was no body to bury. No gathering of friends to share sweet memories and bid my mother farewell. No public acknowledgment of her life and who she was. When I learned that this grief had a name, disenfranchised grief , I was relieved.
Disenfranchised grief is the grief people feel when a loss cannot be openly acknowledged, publicly mourned, or socially supported.
Labels can sometimes be so comforting.
Anger
It is natural to feel frustrated and angry – angry at having to be a carer, angry with others who do not seem to be helping out, angry at the person with dementia for their difficult behaviours and angry at support services.
Feelings of distress, frustration, guilt, exhaustion and annoyance are quite normal.
You can imagine the pressure these emotional have on the dynamics of the relationships in the family.
4. Two years ago my father suffered a heart condition and was taken to hospital. It was there that he realised he could no longer care for his wife of 55 years alone any longer.
The decision to move your parents into a nursing home can be the most heart wrenching decision. For some people I have spoken to it felt very easy and natural and for others, my family included, it was deeply distressing.
More Challenges
Once we had moved our mother into the home we visited her every day for quite a few months. I needed to travel from the North Shore where we live to the Monte in Randwick. Balancing work, children’s needs, a marriage and some time for me became very difficult.

Now I had two parents living in different locations both needing support. My sister and I tried letting each other know who was going to see her and when, so that we could spread out our visits but it was a very challenging time.
Nowadays, I try to support my father by calling him once or twice a day. A huge portion of my life is now spent caring about and often for, my parents. I am blessed however. My sister and I share this commitment together. I also have a partner who takes a very proactive role in the care.
But we worry. There have been falls, broken hips, cracked heads and extended periods in hospital, gastroenteritis, and other illnesses. At times I will phone and my dad and he doesn’t answer (the batteries may be flat, the phone is switched off, he has left it in another room, ) then I have to drive to his place to check out if he is OK. At first those drives were terrifying but now I think I have probably imagined every possible scenario and I probably have immunised myself for whatever I may find.
I know there have been times when I have had nothing left to give another person. Times when I had nothing left to give to my children or my husband.
There are a few things that have helped me deal with the challenges and of course I am still learning .
Here are a few things I have learned along the way.
a) I give myself time. I refuse to rush. For me that makes a big difference to how I am with people.
b) When I plan to visit I made sure I really want to be there.
If we feel resentful, irritated, angry or even over tired I am sure our parents, just as our children and our friend feel it.
c) I try not to do more than I can manage. In other words I have become quite good at saying No. I’ve even learned to let the phone ring without running to answer it sometimes.
I am still dealing with the additional pressures of having aging parents.
But I find that if I complain, struggle or resist the reality of having two elderly parents in two different locations, I make it much harder for myself. And of course I am as human as the next person and sometimes I do make it harder for myself.
I have done my personal work with regards to both my parents and that is a blessing. All the loose threads and unfinished issues between my mum and I are now fully tied up and completed. To be fully present, in joy with our aging parents I truly believe we have to find our own way of letting go of past baggage, old resentments and hurts.
Here is a short excerpt from my new book.
If we choose, we can allow dementia to reconnect us to the only thing that is real, and that is this present moment. Serina, whose father had died over a year ago describes this so well. “Dad was a grumpy man most of his life. It was never easy for me to be with him. Alzheimer’s just exaggerated it even more. There was a lot a yelling during those last years. My mom trying to correct my Dad. My sister defending her son who Dad seemed to always pick on. But for me I finally got to spend some time with my Dad. He would sit with me and talk. I would take him on a daily ride around town....always the same route...always the same conversation never changing. Mum would ask me how I could sit with him for so long and I told her I just had patience. I wasn’t looking after him all the time like her. But what I really wanted to say was…finally, this man I call Dad is noticing me. But now that he has been gone a few years, I think I was noticing him more.”
Every child needs to be able to walk into any room where a parent lights up just because he is, and for no other reason. Indeed we all need to feel that who we are is of value-simply because we are. But very often that is not how it is or has been. During my early years my parents were far more interested in each other than they were of either my sister or I.
However one of the most remarkable things I’ve learned is that no matter how challenging the past was, life has a way of creating opportunities for change and healing.
My relationship with my mother has dramatically changed since she has had dementia.
One day I arrived to visit my mother and found her sitting on a chair tossing a large plastic ball to the nurse in the centre. Actually it looked more like she wanted to knock the nurse over, given the ferocity of her throw. As soon as she saw me she jumped up, ran towards me, threw her head back and thanked God over and over that I had arrived.
This was is a very different Lily to the one I had known all my life. The only time I remember Lily in direct contact with God was when she prayed, “God help you if you don’t do what you are told. She no longer knows who I am and the need to be recognised or remembered has long passed. Now my mother falls in love me with every day. No past pain and no future plans. To be cherished and loved a new by my mother every time she sees me is a gift I could never have imagined.
There are challenges. We are facing a whole new phenomenon where not only have many of us had our children a little later than the previous generation but our parents are living much longer than their parents. We are the first generation faced with caring for both our parents and our children at the same time. There is no doubt that our aging parents deserve the best that we can give them and when they need to go into full time care we rightly demand they are treated with respect and dignity. As a community we not only need to have the right answers but more importantly we need to ask the right questions and share our wisdom with each other.