Q: DEAR Miss Regina, I am caring for my mum who has had Alzheimer’s for 4 years. I tried hard to take care of myself and stay social but sometimes I would rather stay home with my mum than to go out with friends and mingle when I hear comments like: “Why bother visiting?” “She doesn’t remember me anyway.” “She doesn’t do anything like before.” “At least she is still alive” or “I know how you feel.” This frustrates and depresses me. How can I overcome this?
A: These statements show the lack of understanding of what people know about dementia care, communication and relationships. People who say these things think they are helping and in their defense they are just unaware that it is doing the opposite.
In order to be loving and show love, perhaps you can use this as an opportunity to help them understand with statements like: “True, my mom may forget my time with her or your time with her but I still want her to enjoy the moments because it doesn’t take memory to give her a hug or other loving gestures that she can respond positively to. I would like to be there to help her experience as many happy moments as she can.”
Or something like: “Alzheimer’s is a progressive disease and there is no cure at this time and Mummy’s condition will get worse in this respect. But things can be better for Mummy and me with help. Would you be willing to come once a week to help me care for her?”
Encourage them to learn more about dementia. Perhaps, even host a family and friend awareness session with the local Alzheimer Association.
Q: Good day, Miss Regina, I have a friend whose husband has Alzheimer’s and she is very private. I can tell she is having a hard time dealing with her husband’s condition but she will not ask for help. She has family but will not ask them, either. I want to tell her about SLADA but do not know how to approach her without offending her. What will the association be able to do to help her?
A: The stigma of Alzheimer’s and related dementia continues to be negative. With more awareness, this will improve.
Your friend still needs your patience and understanding.
The St. Lucia Alzheimer & Dementia Association (SLADA) can support families with education understanding dementia and the progression; coping strategies; assist with managing behaviour recommendations; resources for trained caregivers or other health professionals that work with people living with dementia; and respite relief and activities for families. It is encouraged that families caring for loved ones with dementia to become members of the association and anyone that wants to support can be a member. There are many ways to support besides monetary.
People living with dementia, depending on their level of abilities, can help in many ways as we adapt the help to their abilities at some of the Memory Cafés, or fundraising functions. Business communities like Cox & Company have workshops for their staff on brain health and dementia to help them with customers who might be experiencing brain changes while other business like IslandMix will host or sponsor a Memory Café or fundraiser. Others like SLHTA offer space to hold support meetings for families.
There is always something that an individual, group or business can do to support and any of those supporters that are affected with dementia can participate in any of the activities. Families can benefit from other supporters experiencing similar situations and meet others that care.
If your friend is not willing to seek help, do not give up on offering. Keep in mind they do not want to be a burden, so be sensitive and understanding that that kind of guilt takes a while to heal when real love to help someone is offered. She will come around, so keep offering. Be warned that she may ask at an odd time. Don’t let her down and if you personally cannot help at that moment, help her find an alternative until you can. Don’t leave her hanging.
Send questions or stories to firstname.lastname@example.org or text 758-486-4509.