Dementia, Dad & Me

Dementia, Dad & Me.

My Dad, Peter, is in advanced stages of Alzheimers and has been in a care home for just over two years.  He is 82 and lived a brilliant life until Alzheimers started to take hold 5 years ago and it’s been a roller coaster of emotion since then.  My dad worked for himself in the financial services industry and didn’t retire until he was 74 and 3 years later got the diagnosis.  

He didn’t talk about it much in the early days but as it advanced he opened up a little and in one of those moments I asked him how he was getting on with it, his answer stays with me to this day.

“I’m ok, everyday is a new day to me, it’s you lot that are going to suffer”

Those words couldn’t be more true, it’s been a roller coaster of emotion over the last five years as we’ve watched an intelligent, articulate, funny man slowly deteriorate into a man without any quality of life.  Therein lies the question though, we judge his quality of life on what we once knew and the life he led, but is that the right measure ?  He appears happy enough in his own reality, he doesn’t speak but he laughs and has that same silly grin on his face.  Can we really judge his quality of life ?

Only three years ago in 2019 we took him to Wales to climb Snowdon, he was a keen mountain climber.  In his early years he climbed Kilimanjaro twice (he forgot his camera the first time !).  He has spent many years in the Alps and had ambitions to climb Everest but altitude issues above 21,000 ft prevented him from achieving that dream.  As we started to walk up Snowdon, his autopilot kicked in and he set off like a mountain goat. He didn’t speak much on the way up, just strode up without a care in the world.  My memories came flooding back of the times he had taken me (or dragged me) up mountains when I was younger.

We got to the bottom and went for dinner at a local pub and it felt like a normal day as he sat down with us all. We started talking about the walk up Snowdon and he couldn’t remember climbing it, how cruel is this disease that takes away memories so quickly ?  I also didn’t realize at the time that this was the last quality time we would have together.

Covid came in 2020 and he deteriorated quickly as the lockdown came.  My stepmum, Irene was struggling to cope with him and had done an amazing job so far but needed help and as with most people probably didn’t shout for help early enough.  My sister, Gill, and I took turns to stay at the house and we watched first hand the rapid deterioration, my other sister, Sam, lived in Spain and couldn’t get back due to the restrictions.

It was painful to watch, he was becoming very confused, violent and inappropriate. This was my dad, someone I looked upto, someone I could sit and talk to about everything in the world and now I was looking after him. I didn’t let the emotions in, I focussed on the practicalities.

He had put the power of attorneys in place but it still wasn’t easy.  There were documents and letters everywhere, they hadn’t stepped into the digital world and it made things difficult from sorting out finances through to organising medical care, everything was frustrating and took time. In some ways the lockdown helped as I could spend time at the house sorting everything out and working from there.

Over time he needed 24/7 supervision which Gill and I covered between us but it wasn’t sustainable and we started to look at care options. Where do we start ?  I found a council website that had some care companies on and I phoned the first one, Right at Home. This wasn’t going to be easy, how do you put care in place in a lockdown ?  They were brilliant and talked us through everything and within a couple of days came to the house to assess my dads needs.  My stepmum was nervous having people in the house but we settled on the caregivers coming everyday for a couple of hours to give Irene some time to herself.

Gill and I still needed to stay overnight as Dad was restless and still needed managing as he was deteriorating quickly.  Over the next few weeks we started to discuss dad going in a dementia centered care home.  Those discussions weren’t easy for any of us but the more we talked we knew it was inevitable and only a question of time.  None of us wanted it, we knew we wouldn’t be able to see him during the lockdown and whilst we didn’t speak about it, we also knew he would carry on with a rapid deterioration.  The guilt was the hardest part, why couldn’t we care for him, doesn’t he deserve more, what could we have done ?

We found him a place in a local home and the day came to take him in.  It was the longest drive of my life, he sat in the front with me, Gill and Irene in the back.  He loved cars and asked some questions about the car on the way, only two questions but repeated them over and over. The home was a couple of miles away and we seemed to get there in an instant and as we pulled up the emotion was overwhelming. I felt devastated as we got him out of the car, I knew it was the last time he would be in a car with me.  We walked him round the side of the home as we weren't allowed in and the caregiving team were waiting for us. We had packed him a bag with some of his favourite mountain books in and some other familiar items.  As we walked away from the garden and left him there, it was a mix of emotions, guilt, grief, sadness, loss but also relief and that’s where the guilt kicked in.

I’ll fast forward a couple of years as not much has changed for him, he’s not recognisable from the man I knew, my dad.  He doesn’t speak, he’s lost a lot of weight, has to wear a helmet to protect himself and needs a hoist to move around.

I tell myself I've already lost my dad and gone through the grief as I lost him a long time ago but it still hurts. I still feel guilty that maybe we could have done more, I feel angry that this disease took his life away in the cruellest of ways.  I’m angry that he’s not enjoying retirement and doing the things he loved, I'm angry that the kids have lost a grandparent. I’m angry we can’t sit and play scrabble and demolish a couple of bottles of red wine in the process, I'm angry we’ll never walk up another mountain together.  

It feels as though we are just waiting for him to die, how awful is that ?  Isn’t he going to be happier when he dies ?  I just don’t know, he has his reality and doesn’t remember or know another life so would he be happier if he wasn’t here.  Am I being selfish thinking that ?

So what have I learnt from my experience?

• Put things in place and organize your life so people know how to help.  We would have been stuck without power of attorneys for both my dad & Irene, get them in place for both Health & Wellbeing and also Property & Financial.

• Don’t leave it too late before getting help, if we had taken professional advice or got help earlier he may have had longer at home.

• Don’t argue with a person with Dementia, it is their reality, don’t disrupt it, go with it and join them in it.

• Talk about it, the emotions are intense, confusing and upsetting, you will need support, help and advice and that will come by sharing how you are feeling.  You are grieving for a living person and that is complex and difficult to deal with.  It is intense and comes and goes in waves, talk to someone about it feels.

I know my dad will die soon, I fool myself into thinking I have already grieved for him, I know I haven’t and I know I will have a wave of emotion to come when that day arrives.  That answer he gave is still true to this day.

“I’m ok, everyday is a new day to me, it’s you lot that are going to suffer”

For now, I focus on remembering who he was before the disease took hold, my dad.