- Give us time and space to try and keep us doing as much as we can. Don't take over! Let us make mistakes or fail, but don't let us feel a failure. Help us not to give up.
- Maybe get us a diary, and help us parcel our activities for each day, and remind us about the day's activities to get a sense of Tuesdayness, or Julyness, and to register what we did yesterday or last week.
- Think up some sort of "brain gym" – reading children's books, magazines, perhaps. Watching quiz shows. Newspapers, board games, crosswords.
- But make sure we don't feel overwhelmed. Watch carefully for signs that we are blanking out, or just giving up and going back into our shell.
- Is there a way you can help us carry on doing at least some of the household chores? Maybe signs around the house, lists each day of steps to take for each task. Don't do it all for us – surely there is something useful we can still do.
- Make our spaces uncluttered, particularly in areas like the kitchen and bathroom. We have difficulty in vision and coordination which means we knock things over and feel clumsy. Decanting things into plastic containers might avoid breakages.
- Then when we stare blankly at the mess we have made by knocking things over, please help us clear up as we can't think through the steps needed and get flustered and confused.
- If you can afford to try one of the new drugs that raise chemical messenger levels in the brain, try it. They help some of us and improve the quality of life immensely.
(Note: Alzheimer's Association NSW has fact sheets on these drugs).
- Avoid background noise if you can, when talking to us. If the TV is on, mute it first.
- If children are underfoot, remember we will get tired very easily and find it very hard to concentrate on talking and listening as well! Maybe one child at a time and without background noise would be best.
- Maybe think about ear plugs for a visit to shopping centers, or other noisy places.
- Give us time to speak, wait for us to search around that untidy heap on the floor of the brain for the word we want to use. Try not to finish our sentences. Just listen, and don't let us feel embarrassed if we lose the thread of what we say.
- Don't rush into something because we can't think or speak fast enough to let you know whether we agree. Try to give us time to respond – to let you know whether we really want to do it.
- If we see or smell things that aren't there, don't try to persuade us they aren't. For us they are real. Comfort us and let us know you understand, and that although you can't see or smell it, you know that we do.
- When you want to talk to us, think of some way of doing this without questions, which can alarm us or make us feel uncomfortable. If we have forgotten something special that happened recently, don't assume it wasn't special for us too, just give us a gentle prompt – we may just be momentarily blank.
- Don't try too hard though to help us remember something that just happened. If it never registered, we are never going to be able to recall it.
- If you can, avoid saying "That always happens to me!" or "You look so well!".
- Don't call us "dementing". We are still people separate from our disease, we just have a disease of the brain. Saying we are people "with a dementing illness" has negative connotations.
- Provide support and material for the sufferers – we need all the support we can get after having what I think is one of the worst diagnoses anyone can get.
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