Q: Good Day Nurse Posvar, I am a friend of someone I care about who has dementia. I really miss our tea time outings. I have to admit, I am ashamed and embarrassed to go out with her because of the response from the service providers to my friend’s behaviour. She sometimes will make rude remarks. I am just taken aback and feel awful with the whole experience, that I am reluctant to invite her out again. I don’t want to embarrass her, but left with not knowing what to do when people in public don’t understand her condition. Is there anything I can do without upsetting my friend?
A: I am impressed that you think of her dignity in your own discomfort. True friend you are indeed. This is a challenge for many family, friends and carers who take a person with dementia out in public. It is important that they are involved with society as much as possible; however the public is not so easily receptive. The big reason is that they do not understand as you have stated. I find that people understand when they know. A wonderful tip I learned from the Alzheimer’s Association is these pardon cards. You actually can just make a note yourself and keep it with you (make a few of them to give away). The pardon card will discreetly say to pardon the person you are with as they have a brain disease. And you will discreetly give the card to the public service person. Many times I have actually told people that “we are on an Alzheimer’s friendly walk” to alert people to not be afraid when my companion approached a stranger with conversation that didn’t make sense to them. Continue to take her out to the same places. The people there will warm up to her and make her experience better when they understand. You will find a few that disagree, but I have found most understand when we let them know.
Q: Dear Mrs.Posvar, My neighbour asked me to email you. She is forty years and her mum is eighty-two. Her mum cannot care for herself for a long time. The daughter who cares for her daily is ill herself, but still cares for her mum. She does not know if she has dementia but she was told many years ago that she was marked as mad. The elderly lady cannot speak and has had a stroke or two and is fed like a baby. I am worried about my neighbour as she works so hard to care for her mum. A few of us around try to help her with things she needs. She can’t work because she has no one to take care of her mum so I think she does odd jobs to pay for laundry soap and things like that. Her situation is just so sad to me. What kind of support will help her?
A: Dear Kind Neighbour, Your heart is big. When families are limited with resources among themselves to help with care it becomes the hard burden on one family member and this happens all over the world. No one should endure this alone. It happens and we can do something if it is in our path. For you, it sounds like you are doing what you can and see more that can be done and are reaching out for more support for your neighbour. I understand that many people here are undiagnosed for Alzheimer’s or other dementias, but have dementia symptoms. Your neighbour’s mum appears to be in the later stages and it would be horrible at this point to even put her through any testing. She and the daughter would need support regardless of the diagnosis. The kind of support she would need is in supplies and giving the daughter some respite relief to care for herself. Angels of the West Indies is developing a volunteer programme that many people in this situation will have access to. For now, I would ask her local church to see if they can send someone to assess her needs. Ask your neighbour if you can give her contact information, and I can help with locating other services that may be able to help her. I have learnt that there are little hospitality places that are not so well known that really like to help. Even the Lions Club will give help in some small way to individuals especially when they slip through the cracks of the systems.
Brainy quote: I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.
– Maya Angelou
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