The Dementia Diaries. Communicating with parents with dementia
OK – let’s get the nasty bit over first. It is frustrating, annoying, worrying, exasperating, frightening, and can be extremely irritating when you are talking with your dementia-affected parent or relative. The constant repetition is one thing, but worse is the confusion and muddle you find yourself ploughing through every day.
If you feel guilty for being frustrated – stop! It’s normal. If you feel dread as you open the door and anticipate another onslaught of confusion – you are not alone. If you get irritated and shocked by the hurtful and unsubtle statements - don’t worry. Dementia takes our parents back to the raw honesty of a child. They do not intend to cause pain; they just say what they think. So the day my mother looked quizzical and said ‘you look really fat in that dress’ was horrible – but it was due to her brain and not her soul. It got worse.
A few facts:
Common communication symptoms with dementia patients include:
Forgetting words in the middle of a sentence
Using the wrong word e.g. pointing to the door and saying dog
In some more advanced cases, a level of aphasia in which they are unable to articulate a sentence. This is beyond missing words. They simply cannot say what they want to say.
In advanced dementia, rambling incoherently
All of this is confusing, often more to you than them. But it also heightens their frustration and fear. Being unable to communicate with others isolates and marginalises them. Do not be surprised if the response is either anger or tears. You would feel the same in their shoes.
There are a few things which will, as I found out, make it worse. In the early days of my mother’s dementia, I did not want to face up to reality. I wanted her to be OK, to chat to me like she had for years and not show me these symptoms which alarmed me and made me fear for the future. Suddenly, I found myself yearning for the interrogation and list of questions which for years had made me roll my eyes. Over a few months my chatty Mum turned into a confused and alarmed child. My reaction was to either put it right or react to what was happening with too much honesty. This might sound strange, but honesty might be your weakest tactic.
Communicating with a dementia-afflicted person is a test of imagination. There is no point trying to pull them back into your world. You have to step into theirs. Like Alice through the looking glass, you step into a realm which is one of confusion and bizarreness.
A few things I have learned over the years:
Never put on your confused face. If your demented parent or relative is saying something which is quite bonkers, your look of horror only frightens them. Just go with it.
Anxiety speak. This is common and an external expression of their fear. Do not dismiss, but instead give reassurance. When my mother continually stated that something had ‘gone wrong’, I did her no favours when I told her she was wrong. It was better, I learned, to tell her that I would sort it all out for her. When she started to get anxious that I had to go to the doctor, I lied – yes, lied –that he had seen me and there was absolutely nothing to worry about. I was unwell, but it was kinder to lie.
Losing words. This is a common symptom and your parent will feel exasperated trying to get a word out. Show no irritation and do not try to keep guessing the word or name. Ask them to describe the word. Similarly, names will escape the person. Just ask them to describe what the person looks like. My partner has been called ‘big-boy’ for the past three years (because he is tall – calm yourself ladies!) as this describes what my Mum sees. In the past two months she cannot even remember those words and so points to the ceiling. I know she is asking about him.
Wonky facts. If you are told you were born ten years later than your birthday – just agree. If your parent reminisces about pets or people and makes up ‘facts’ you know to be quite wrong – just go with it. Equally, if your mother/father thinks you are her/his sister or mother – just go with it because tomorrow they just might remember who you are again. It doesn’t matter. The argument and contention of correcting them and explaining why they are wrong will only distress your relative.
Concern. Many dementia parents get very worried about bills, getting message to people etc. Just say you have sorted it all out. Keep the reassurance up and constant.
The terrible day will come when your mother or father looks at you and asks ‘Who are you?’ It will hurt and frighten you like hell. For me, it felt like I had lost my mother for ever and I could feel the pain going through me like a knife. Friends have told me that it was the moment when all hope seeped away. But you cannot react with your pain, you cannot let the tears fall there and then because you will only frighten them. Just smile; take their hand and say ‘I am your friend.’
The next instalment of The Dementia Diaries will look at the other unhappy symptom which many of us deal with - when your demented parent seems to just hate you.