I have always loved Dad. As my mother sometimes said, I “thought the sun shone out of his ass.” We lived in a small town, so he usually came home for lunch, sometimes blowing up the paddling pool, or plotting out a golf course for us, and I always looked forward to his car coming up the drive shortly after 5pm each day.
Dad played games and sport with us (never letting us win), sung to us, tickled us and read to us. My favourite was Cinderella and he patiently read it to me most nights, only occasionally trying to turn two pages at once. I loved sitting on his knee, my safe haven.
My parents separated when I was 11, and we moved away with our mother. There were many sad times for me on the bus between the two cities during my teenage years, but Dad and I always wrote letters and stayed in touch.
When I was 15, Dad married my stepmother and they have had over 40 happy years together. They also had a son and now a beautiful grandson. They have had so much in common; their love of sport, playing golf, fishing and whitebaiting, gardening, travel, family, being connected to their community, and just enjoying their home and garden and the neighbourhood they have lived in since 1980. A simple, family-orientated, non-materialistic life. And my sister and I couldn’t have asked for a better stepmother and Nana.
When I was 35, I felt a strong need to tell Dad I loved him. I was nervous about doing it as he sometimes uses humour as a defence mechanism. But I called him anyway. As it turned out, my timing was perfect as he had just got home from a funeral; someone from the squash club, in their 50’s, whose son had stood up and said “I wish I had told my father I loved him.” That was all I ever needed to say to Dad. It sealed the deal.
Dad’s father, uncle and aunt all suffered from Alzheimers, and over the past five years or so, Dad’s memory has been fading too. The most common early symptom of Alzheimer’s is difficulty remembering newly learned information because changes typically begin in the part of the brain that affects learning. As it advances it leads to increasingly severe symptoms, including disorientation, mood and behaviour changes and deepening confusion about events, time and place. It doesn’t help that people with memory loss may find it hard to recognize they have a problem and wonder why things can’t stay the same. Any attempts to discuss the situation with them, although understood at the time, are lost shortly after.
Dad still knows us, and even though he can’t rationalise very well, he can sense what is going on. He still feels things, and is still quite astute. My approach has been to try to connect from a feeling place, rather than a thinking place. Even though he has a positive demeanor and is at ease in his home environment, I can see the pain he is feeling too, as his clever mind was one of his strongest attributes. He was a thinker, a strategist, a problem solver. He can still remember rugby calls from 60 years ago! He still wants to be involved, and useful, and that needs to be respected.
For my stepmother, it has been quite a different journey and far more challenging. I can not even begin to imagine how lonely, confusing, heart-breaking, exhausting, overwhelming, frustrating, worrying, scary, shocking and sometimes disgusting it has been for her.
I can not imagine what it would be like to see your best friend, your lover, your protector, your confidant slipping away slowly.
I can not imagine what it would be like moving from the role of wife to the role of carer.
I can not imagine what it would be like to not be able to talk to each other every morning about the day ahead, share stories when she arrives home and not even be able to watch TV together because there is no connection with the storyline.
I can not imagine the exhaustion from answering the same question ten times in a morning.
I can not imagine the guilt of probably wanting to run away and return to a normal life.
I can not imagine the loneliness and yearning for company and support.
I can not imagine the pain of no longer being able to connect.
It is a cruel disease, like tearing off a super-glued plaster one painful day at a time. We are all doing our best. That’s all we can do. It puts me in awe of all the other people out there that are walking the same path. We are also grateful for all the happy times.
And for anyone who is unsure how they can help, I think the answer is.. just be there, and listen.
NB: This has been posted with my stepmother’s permission. We would like to share our story.
This Post Has 12 Comments
Thank you Kelly and Zena for sharing your personal perspectives of living with dementia that many family and friends are unaware of.
You have explained this disease so well – most of us gave no idea what those close have to endure – we only see the best of the situation. Thank you Kelly.
Having known your Dad, a few years ago, what a lovely man, he was such a good and loving father to you girls, and uncle to my boys I am sure you love him dearly, it is so sad that he has Alzeimers in his later years, and a lot of patience is needed to look after him. you explained the story with such love and feeling,
Thanks for sharing Kelly. I find all of the brain related conditions (Parkinson’s, Alzheimers, Dementia and to a slightly lesser extent Multiple Sclerosis) the cruelest of all for all concerned. I visited your Dad and Zena about 4 weeks ago and whilst good to see him was sad for you all the frustration that I understand he feels. Through all the years of knowing them and being friends I have enjoyed their company. I wish you all well and thanks again for sharing.
Kelly you’re amazing, thank you for this explanation, Zena I love you and am so feeling for you and am sorry I could not spend more time with you the other day, it is so hard to see what you really have to deal with as Lindsay is so with it there and then, so please feel free to call and talk about anything or if you get a break come up and go for a fish/relax same to the rest of the Townsend family.
Lovely words Kelly. Take care of yourself too. That’s an important message. Love to all.
wow, thank you for enlightening me on this horrid condition that Lindsay is in. . My heart goes out to both of them, as this is not an easy situation. Zena is a strong lady and is one of the most respectful humans i know and she has a lot on her hands . it is not an easy life for either people. love and respect from me.
Its hard when it happens to the parent you particularly relate to. I was the same with my dad and it was hard to see it all happening. I missed the person that he was and grieved the progression and the loss.
Hi Kelly. Thanks for sharing your thoughts about your Dads condition and it’s impact on Zena, Scott, his family and yourself and Fleur’s family. I know that the stress both for Lyndsay and Zena must take a toll on a daily basis for them both, and I thank both you and Fleur and my family and friends for the support and understanding that you are giving to them both and amongst yourselves. I will visit them both within the next couple of weeks and once again thank you for embracing this situation with a passion of love and understanding. Dave Blundell
Kelly Really touching words describing your love for your dad as a child and then growing up. It is so sad now to watch the people you love going through this. Look after yourself so you can be there for everyone involved
This is the first time I have read such a clear description of the effects of Alzheimer’s on the patient and the their family and especially their partner.
I have observed the toll it takes on both people and their families and will advise my friends who want to know more about this frustrating disease to read your article.
My dear mum she got alzheimers also Its such a dreadful disease and to witness it first hand was very depressing We couldn’t put her in a home so for a couple of years my sister Margaret and I took fortnightly turns at looking after her.
Marg and I went to an Agnew family reunion in Canada and during this time we put mum in the Kamo Home for respite care.
That was really not the place for our dear mum but we had no other choice
So I know what you have been through even though it effects different people different ways
Love to all and take care of each other
Big hugs and kisses XXOO