Times with my dad: Life, death and values

Dementia Awareness Week

Reading Time: 10 minutes

A few weeks ago, I went to a driving range with my dad, he turns 78 this year – just him and me hanging out for a few hours on a Friday morning, doing something fun. It may not seem like a big deal to anyone else, but I don’t know if I’ll ever appreciate a time spent with him more…

He’s aged a lot in the last few years, he retired aged 63, because he was worn out and unloved in a job he’d given his all to. By 65 he was diagnosed with prostate cancer. Its OK, he won, he kicked its ass, but it wasn’t without consequences. You see this gregarious bull of a man was reduced to a mere mortal, for someone who was rarely ill with even a sniffle, the idea of dying knocked him sideways a few hundred miles and if I really think about it, he was never the same again. Subsequent years have brought about a pacemaker, an aneurysm in the stomach, treatments for anxiety and depression and constant physical aches and pains, combined with a general ageing and slowing down process, he felt forgotten, lost, broken and finished. He totally lost his vitality, he didn’t have an interest and the smallest activities made him tired and reluctant.

In contrast, my mom on the other hand is 74 and a stick of dynamite, she never stops, she is the fastest walker, fastest talker, if you mention needing anything, she is already out the door to find it for you, I’ve yet to see anyone match her pace while out shopping, she leaps up escalators two steps at a time. It’s exhausting watching her, so her vibrancy and vitality feels as though it is being sucked out of her.

In truth, the whole situation for them both is not good, I feel that my dad craves slow living, gentle activities and easy socialising, whereas my mom needs to challenge herself and feel part of things, lunches with the girls, shopping for fun, she has an iPad and she loves Facebook! She craves new experiences with new people – but never gets it.

For a while, about two years or so my mom has mentioned Dad being more forgetful, foggy, vacant, saying things out of context, getting the wrong end of the conversations and much less confidence while driving, he’s had a few near misses that could have proved fatal.

Now I’ve always known him as a bit of a ratty, aggressive man who liked a drink, could be extremely funny, always courageous and stubborn in his beliefs – has no interest or time for leisure, pleasure or as he says, “anything too flowery”. We’ve had a rather combative relationship for most of my life.  There has been a noticeable difference in dads’ personality, his confidence, his energy and his willingness to participate.

For at least five years now, he has been on a cocktail of medications; he’s had – Statins (Atorvastatin), anti-depressants – (fluoxetine) and Stomach acid suppressants (Omeprazole) along with hormone injections every three months to supress his cancer cells making a reappearance.

Doctors can’t do anything until the person themselves admits that there may be a problem and asks for help. You must wait until something drastic happens first.

If you have a spare half hour, take a google at the concoction of side effects that these drugs can bring about. It’s terrifying that these are routinely prescribed.

My mom and I have talked in passing about dads’ health and whether he could be showing signs of dementia. BUT, because it’s such a hidden illness until it’s too late, my mom had great difficulty getting a doctor to step in, whenever she approached for help or advice, and was even dismissed a few times for overreacting. Doctors can’t do anything until the person themselves admits that there may be a problem and asks for help. You must wait until something drastic happens first.

None of us wanted to face the truth. It can be the hardest thing we’ll ever do as humans. As all the advice will tell you, the most important thing to do to ensure an active brain in old age is to be fit, healthy, eat nutritious food, get socially active, have new experiences.

My dad has been frustratingly stubborn in his refusal to change anything, to even eat fruit or drink water.  When prompted on anything new, all he ever replies is “I’ve worked hard enough all my life, why should I do anything now?”. I guess the idea of doing activities for fun wasn’t easy for him – a working-class lad from Belfast, who left school at 14, worked in cotton mill factories until he was 18, then left home and took up plumbing, after a couple of years he met my mom while on holiday in England, they married, had four children and he worked until he dropped. He didn’t do fun or leisure.

So, time has passed, we ploughed on through life, hoping he’d be ok, hoping they’ll be ok. We all have busy lives, children, jobs and need to juggle lots of things, so we all hoped it would right itself, eventually?

On a Sunday evening in early March this year, our world began to crumble.  I was at home with my wife, Emma, and our son Frank, preparing dinner, talking about possible bath time, about what we had to do in the morning, who was dropping Frank off at nursery etc. My phone rang, it was mom calling from their home phone number – she said words that made my stomach lurch and my chest ache; “Can you please have a chat to your dad, he’s saying he wants to go home now, he’s been saying it for a few hours, he’s got our coats and shoes ready and now he wants to go home”

I totally froze. This wasn’t supposed to happen, not yet, not now. Surely, we had more time than this?? He came on the phone to me and he carried on with the conversation, he even asked how Frank was, what we’d been up to today and then he told me he was getting ready to go home now.

So, I asked him to clarify where home was, he said “ahh you know, a wee place up the road”. I asked him where he was right now, and he said “ahh you know…”.  Then my mom then came back on the phone and said, “he thinks he’s at your house, and he’s also asked for his own mother! Pete, I’m lost I don’t know what to do, I don’t know what happens from here…”

We stayed on the phone chatting. After a while, he seemed to calm, he put their coats back in the cupboard and began locking their house up for the night, then I heard him ask about their meeting with the solicitors in the morning, as they are in the process of selling their home. So, was this a blip? A minor malfunction? it seemed he was back in the room again, he no longer wanted to leave. It was temporary relief for us all.

On the Monday morning, I called my parent’s GP and told them exactly what had happened and that I needed a joint appointment for my parents. On Monday afternoon, we went along together. We chatted about it, I explained everything to the Doctor, his medications, his recent stresses, his driving. The Doctor referred my father to a memory clinic and gave me a test to carry out at home, it contained general questions about the day, date, month, naming everyday objects around the house, following simple instructions….some of them he found very easy, others he struggled a little…. as of that Monday night, my dad was showing borderline signs of possible early dementia… the test is not conclusive and can be done several times to get different results, however it does give an indicator as to where we might be.

We have an appointment on the 21stMay at a memory clinic to further evaluate where my dad is and where we are headed. These last few weeks have easily been the hardest of my life, I’ve felt extremely vulnerable, very alone at times and yet very determined to make this ok and help my family navigate our way through this together.

It would appear that in times of great trauma, your default personality comes to the surface, this may not the one you show the world daily but more at the core level of who you are, that you can’t control…. the rawest, purest version of you…

Myself, I have been an erratic combination of efficient problem solver, sensitive carer, determined moments of gratitude, planning for my life ahead, yet terrified and the constant ache of that knot in my stomach has become normal, especially at night.

My mom has been reduced to a shell, on one hand she must maintain a level of care and kindness to her beloved who is suffering at the hands of this illness, yet on the other she is watching her husband, the love of her life, the man who she married at 19 years of age is being ripped away from her. In a conversation recently, my mom said something I don’t think I will never get over hearing; “This is the long slow goodbye Pete. I have no choice. I have no salvation – I have to watch him slowly disappear and then our marriage and relationship crumble around me, through no fault of my own. I can’t stop crying”

 

What on earth can you say in that moment?

I want to save my dad and I want to protect my mom, but I can’t do a thing – I too am gripped in desperation, Emma and I have cried just imagining how this must feel for them both. In some ways, a quick terminal illness seems like a better solution, because at least the essence of the person is still there. It’s such an awful way to think.

I have reached out to Dementia UK, they have been incredible in their kindness, patience and support. We were introduced to the Admiral nurse team, who offer guidance for carers and family, they referred us to support groups and organisations who can make this whole journey a lot easier. But, we are still awaiting an official diagnosis of actual dementia. Which incidentally, my mom wants doctors to avoid saying to my dad, because it might just send him over the edge.

The absolute hammer blow was when he said to my mom “please, please don’t put me in a home…”

And so we wait, we continue to live, and we are immersed in this relentless process.

There have since been some wonderful experiences and some very traumatic experiences, mainly for my mom who is in the eye of this every second of every day. There have been a few episodes where he doesn’t know who my mom is, he asks her to her face, “and who are you?” he thinks she might be his own mother or his aunt…there have been times when she is changing right before his eyes…He will have moments of clarity and will say “who’s doing this to me?” “why is this happening?” …. the absolute hammer blow was when he said to my mom “please, please don’t put me in a home…”

After asking for advice on how we should manage these episodes, I’ve been informed that when my father is disorientated he will believe its 40 or 50 years ago, so when he sees my mom, he doesn’t recognise her as his wife, because his wife is a young woman, the only elderly females he knows are his mother and his aunts.

Dementia isn’t constant and it isn’t immediate. It feels like a gradual misfiring engine, a glitch in the electrical current. It appears in patches, or waves that can come on suddenly and in a moment, they are gone. There are many things that can help to stimulate and keep my dad in the moment, to keep him where we are right now. One of them is a few hours around our darling baby boy Frankie!

Honestly that boy could brighten up anyone’s day! The other is telling stories to him, asking him questions and laughing at silly things, him feeling useful and validated is key, so if he wants to tinker in our bathroom with his plumbing gear then let him do it! We’ve since shared pints, we’ve played golf, done simple fun things and that is all he has ever wanted.

It takes a terrifying incident to wake us up to the possible future, it could be a near death experience, fighting cancer, the idea of possibly losing someone dear to us.

What has come into glorious and uncompromising focus is what is truly important in this life. Often, we all behave as if there is no end and yet we fear death like a disease we want to avoid. It is only when confronted with the great certainty of our lives; that we are all dying, that one day we will die, all the people we know will die. Then and only then do we start to value and evaluate.

We value summer because of winter, we appreciate laughter because we have experienced sadness, we are grateful for love and kindness because we have known hate. We crave the light because of the dark. You cannot appreciate and value life to its full potential if you do not appreciate death.

So then, back to that day as we sat having a pint together, after our driving range session, I looked at him as a person, I chose to treat him with the same love and compassion I choose every time I meet a new person, baggage free and judgement free, nothing from our past was present. Just me and him enjoying the same space.

We laughed, we joked, we talked of things now, taking a trip to Ireland, we had a very simple time together and I saw him visibly light up, he functioned, he flowed, he chatted and was lucid and present… I no longer saw him as broken or shrouded in misery, he was John Desmond Smyth, a very funny, astute man with a lot of life experiences…

And I realised this is all I can do from now on, be present with my dad – offer him kindness and love so that we can make happy memories for each other, because we really don’t have much time left.

For the sake of our families, our parents, children and future generations, we must live for today and love each other and everyday as if we were dying. We are not limitless or constant, we are glorious beams of light, alive for a glimmer and then gone forever.

Dementia UK

If you or anyone you know is effected by anything in this article, please don’t hesitate to contact Dementia UK for help and advice. They are every day angels.
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12 Comments

  • So sorry to read about this Pete – my own Dad’s deterioration was not to do with Dementia, rather it was to do with the onset of illness, anxiety and over-reliance on the pub(!). But the fact that the cancer also led to a visible and physical deterioration in some ways made it easier to come to terms with. I can only imagine the frustration in seeing someone who is otherwise physically able gradually become detached from the person you’ve always known.

    But I think your approach of being in the moment with the person sat in front of you is by far the most positive and empowering way of dealing with this. Far better to have positive life experiences while you can with someone on their own terms, than mourn the loss of the person they were to *you* prior to this.

    Have you seen David Baddiel’s documentary “The Trouble With Dad”, dealing with his father’s onset of Pick’s Dementia? He goes through a similar process… It’s worth a watch if you get a spare moment:
    http://www.channel4.com/programmes/the-trouble-with-dad

    Hope you feel able to tackle things going forwards with strength, positivity, and good humour. The latter of these may seem a stretch at times, but I think its important to do your best to create as many positive memories in the remaining time you have together as possible!

    • Hey Ian,

      how are you bud? thank you so much for your message, what a lovely message it is too! I’m so sorry to hear of your dads passing mate, that sounds like a very raw and traumatic thing to process. Totally agree that positivity and humour hold the key to pretty much every life experience thrown at you, I will endeavour to keep both at the front of our lives.

      Love the look of that documentary, will definitely give it a watch.

      Thanks again for reaching out, I really appreciate your reply!

      Big hugs

      Pete
      x

  • You’ve articulated the emotions and path you take to a Dementia diagnosis so well. My MIL had recently been diagnosed and is waiting for the “memory tablets” to kick in. Sadly after seeing my Gran lost to Dementia I recognised the signs early, but it has been hard on my Husband and Father in law. His unwillingness to accept this change has meant he appears cold and heartless, impatient and embarrassed by the women he promised to love in sickness & health. We’re currently trying to persuade him to go on the carers course, but to no avail. However your story shows it does help to talk to professionals.
    When people ask me what it’s like (with my Gran) I just tell them “it’s like a story book that’s slowly having the pages ripped out”
    Good luck with the rest of your journey with your Dad and hang on to those lucid moments but enjoy living with them in their moment too.

    • Hey Sarah,

      how are you lovely? thank you so much for the message, thats really kind of you to reply and means an awful lot to me! knowing that others have been through this journey and are going through it feels a lot less lonely.
      I can completely relate to how your father in law has processed this, because some days my mom is the same, its as though she is mad at the illness and takes it out on my dad.
      And yes the analogy of the book is spot on! its the slow decreasing of a persons character that is so hard. A similar analogy I read is that of a bookcase full of life memories, with all the oldest ones at the bottom, with the most recent on the top shelves, then every so often the book case gets shaken violently so that all the old memories stay where they are but the new ones get mixed up and lost all together.

      Lots of love and positivity to you and your husband at this really traumatic time.

      Big hugs

      Pete
      x

  • What a moving piece, and thank you Pete for sharing your story. I am so sorry your dad – and you and your mom – are going through this. You are so right to say that we must live for today and cherish what we have. Life is so precious

  • Such a sensitive and articulate account of a truly harrowing journey for everyone involved. My mum (74) was diagnosed with Alzheimer’s just over a year ago, and continues to deteriorate at pace. I empathise with much of what you have said. What can be worse than losing your identity and failing to know that of those you have loved? Much love to you, your mom, your siblings, Emma and Frank.

    • Hey Juliet,

      how are you lovely? thank you so much for replying, it means a lot.
      I’m so sorry to hear you too are going through this process too, its such a raw time for all of us and can be extremely hard to navigate your way through with out feeling helpless.
      I guess the only way forward is through communicating, sharing and utter kindness.

      Big love to you and your family sweetheart.

      Pete
      xx

  • Aww Pete so sorry to read what is happening to you and lovely family. Your writing is amazing, it’s something you should definitely carry on doing. Because your feelings and experiences, will definitely help others who are going through the same thing. Spending time together and making memories with Frank, who will brighten anyone’s day Bless Him xx. Sending You All Massive Hugs And Lots Of Love Joy xx and Jim xx

    • Oh Joy and Jim!

      What utter rays of sunshine you two really are! thank you so so much for getting in touch and what a beautiful comment! thank you darling it means the world!

      If Emma and me are half as glorious as you and Jim when we get to 70 I’ll be very happy indeed!

      Em and Frankie send their love!

      Massive hugs

      Pete
      xx

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