Adding my two pennorth
Dear JoJo36, having lived in dementia world for a few years now, with two very different relatives with vascular dementia, I find that truth, lies and reality are not the absolutes that I used to think they were. It is wrong to hurt people, it is right to keep them as safe and happy as possible. Do not feel guilty in seeking to protect your Dad from the fear and depression that you believe would result from telling him ‘the truth’.
Does using a dementia or Alzheimer’s label help the person with the condition? Some people, particularly younger people, want to know more about their illness so that they feel in control, can plan for their future and pursue worthwhile and fun activities (see numerous articles and stories in ‘Living with Dementia', the Alzheimer’s Society magazine). Many people, particularly older people, are too fearful of madness and ‘being put away’ so the label does not help.
From personal experience I would say don’t deny that there are memory problems, just use that term when Dad raises the matter himself. He may on occasion rationalise the changes as being temporary e.g. change in my tablets, cold weather, people forgetting to tell me things, etc. Don’t argue with this, but equally don’t collude with it by agreeing with him that nothing is wrong or that you did something wrong. You will find your own way of providing reassurance.
I don’t think it is necessary to make an ‘announcement’ to family members. You can say that your Dad has memory problems when it occurs in conversation. How far you go beyond this, particularly, at this stage, is probably the same as for speaking to other people outside the family, see below.
There will come a point where your brother needs support in dealing with his Dad’s illness, but at present he is in denial, as you know. Telling him that it isn’t easy coping with Dad is likely to provoke hurtful criticisms pointing out your inadequacy, ‘cos he’s coping fine thank you very much. Step away from this, it is your brother’s problem. Your brother doesn’t want his Dad or his family to be a focus for gossip or pity, and doesn’t want to deal with questions and suggestions from the family. It is understandable, but the burden of secrecy makes it impossible for you to get positive help and support for yourself if you are not ‘allowed’ to talk to anyone about it.
People can be extremely ignorant and insensitive when memory problems become apparent, and this can lead to self-imposed social isolation by the person with dementia because they have been embarrassed by what other people say to them: “You’ve just told me that!” “I told you about it last week, why don’t you write things down?” “I’m just the same, memory like a sieve” “The doctor can give you pills for that” “I hope you aren’t getting that Alzheimer’s disease” “Oh how awful, my auntie had that and she had to be put in a home because she was a danger to herself” and so on.
People can also be incredibly sensitive, helpful and positive. There are so many people who now have personal experience of a friend or family member with dementia that attitudes are changing fast.
My BIL, who is a very private person, shares an office with three other people, all of whom have parents with dementia. They have developed an emotional shorthand whereby they know when someone is having a tough time and offer advice and support in an appropriate manner. My OH is a senior manager who cannot easily talk about family matters at work due to his position, but he also has colleagues who know his situation. If he’s looking stressed and grim, or goes outside to take a personal phone call, one of these people will invite him for coffee, or make an excuse to speak to him after a meeting, to make sure he is OK and can talk if he needs to.
I am so impressed by how people are becoming able to support male work colleagues and friends in this way. Men usually have a horror of showing emotion, especially in the workplace, and can appear uncaring or angry so that people don’t want to reach out. Well done all those people who find a way to be supportive. It really is appreciated. I hope that in time your brother will find ways to deal with his Dad’s illness and be supported by his friends when he needs it.
In the meantime, you have come to the right place at TP. You have had so much brilliant advice already. Sending you love, Katrine x
