So we are a year or two into the dementia drama now. (Read part one first if you haven’t already). We still didn’t know how best to handle my Grandma and it was hard, but not as hard as what was to come. If only we had known what to expect and how to act with her, those precious months could have been so different.
You might be thinking why is her doctor not doing something? Well to put it bluntly her GP was no help for quite a while. I had no medical knowledge back then either. When we did take her to the doctor, she could pass any mini mental test given to her and pass off as very normal. She would deflect questions she couldn’t answer very skilfully. We knew exactly how out of character she was behaving, but noone believed us. It wasn’t until my mum demanded a referral that we finally got a scan and a diagnosis of Alzheimer’s in the memory clinic.
She lived down the street from us with my Grandad and they both refused point blank to ever go in a home. They had us to help so it was fine and we did until the very end. The diagnosis of Alzheimer’s helped us to finally get some help though. We got carers who would come to help her wash and dress. That was a massive help especially to my Grandad.
On with the story, so now we are up to stage four, the forgetfulness phase. I mean the really noticeable forgetting. We were noticing rapid changes, she was losing things, getting lost, forgetting names, places and people. She always knew our faces as familiar though, even when it was quite advanced, she didn’t know our names but knew we were her people. It was like a Benjamin Button situation, she looked old but was turning into a child. She had resigned to the disease and it was taking hold.
Finally stage five, the baby phase. I think this came quicker for my Grandma than it does for most. Within a few short years she went from totally independent, to being totally dependent on others. She had no memory. She could speak but couldn’t make conversation, she slowy stopped walking and eventually the last thing to go was her ability to feed herself. She became bed bound.
She lived with Alzheimer’s for about thirteen years. About ten years of that time, she spent in a routine being hoisted between her bed and armchair. It was cruel, it was like she had been taken from us years ago but yet her body was still here living on.
She was a true fighter though. In all those years we looked after her, she never had the GP out, she was never physically ill and never had a bed sore. It was a chest infection that didn’t respond well to antibiotics that got to her in the end.
So what advice would I give to someone who knows a person with dementia?
1. Try not to get to hung up on how awful it is because for the most part they actually have no idea! I think dementia is harder for the people around than it is for the actual person with the disease. We see the changes that they don’t so try to accept it and make the best of the situation.
2. Never argue instead play along. There’s no point getting yourself and them worked up about whether they think its time for breakfast at 7pm! In two minutes they will have forgotten and your blood pressure will still be raised for an hour. Enjoy living in their world every so often but be careful as there’s a fine line between playing along impartially and encouraging their beliefs. So for my Grandma if she wanted to go to pick her kids up from school, it was easier to listen to her and pretend someone had already gone and let her feel satisfied enough to forget, than to tell her there are no kids and argue at the door. On the other hand if you said ok or yes they do need picking up, we were in trouble because then she felt she had a right to go now.
3. Act on your gut feeling. Don’t let other people who don’t know them tell you they are ok.
4. Get help as early as you can. Memory loss isn’t always dementia, depression can cause it and certain deficiencies too so see the doctor. Also if it is dementia the earlier you have support from others, the more time you have to spend quality time together.
5. Talk about it early. Don’t let it be the elephant in the room. Everyone is scared and noone can predict what will happen. Have your important discussions early, as awkward or strange as they may seem. Don’t let them moments pass arguing or being upset. At my Grandma’s funeral I gave a eulogy and when writing it I couldn’t remember the last real meaningful conversation we had. We all wished we had made the most of those early dementia days when we had the chance. And why did we never ask what song she wanted at her funeral or whether she wanted a burial or cremation. It felt rude back then but we wished later that we had asked what she wanted. We picked Shirley Bassey’s I did it my way. I think she would have approved.
6. Lastly, care for them in whatever way you can until the very end. It will be a rollercoaster journey, the person you once knew will become someone new. You will feel like you being there doesn’t matter because they don’t know you anyway. But in my Grandma’s final days there were flickers of recognition in her face and words that got us wondering if she might actually recognise us. It made me think… just imagine if they did actually know what was going on the whole time? Remember who they once were and treat them as that person always!