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The Person With Dementia Is The Boss

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If Only I Can Remember By Regina Posvar

Q: Dear Regina, My helper is having a hard time helping my mum brush her teeth. I leave before my mum gets up for the day and the caregiver is here when I leave. After several times of telling her to make sure, the caregiver just tells me, “You know, your mum is not going to do what she does not want to do.” This has frustrated me to no end. She said she has experience in these things but I see she does not. What can I tell her to try and get my mum to cooperate?

A: The caregiver is not experienced enough or has not developed any skills. This is common and should be addressed with her again with kindness and respect. I understand your position to not upset the caregiver who is alone with your mum. Compliment the caregiver on the good things she is doing and how hard she tries with her. Ask her when she struggles with something to keep an open door for communication so that the two of you can figure things out together. Be a team and team leader.

You do know your mum better. Think about your approach and how you help your mum. What works for you? It is in the approach. No matter how kind your words are, if the caregiver’s behaviour does not match it, your mum will pick up on it. Pull your caregiver aside for a meeting and find out more about her and let her know that your goal is for your mum to be and feel as if she is the boss. So the approach should be in a respectful way that your mum feels in control.

Ask the caregiver questions about when she is refusing, what is the situation before hand? How is she approaching her? Does she say, “It is time to brush your teeth” or “Go brush your teeth”? Or does she try to physically help her? There are many variables about this subject. I do not know the level of care she is at, so to give you specific suggestions would be hard. It is best to find out what her approach is and understand what abilities your mum still has. Helping her do what she can’t do and allowing her to do what she can gives your mum dignity and a sense of accomplishment in her own care. Caregivers tend to do it all. If your mum feels she can do on her own, she may need set-up and cues.

Q: Dear Regina, I am so frustrated with my brother and sister! My mum, also their mum, has dementia and they have left me here to care for our mum on my own! One lives in the U.S. and one lives in the U.K. and both are worthless! They come here to visit and stay in fancy hotels and just tell me everything I am doing wrong with mummy while they offer nothing to help. They tell me I have it nice. I live rent-free and off my mum’s pension and that I should not have any needs! They told me I am lazy and unappreciative, that I have a free ride. I am ready to send mummy to one of them! I do not know what stage of dementia my mum has but I would have been caring for her five years next week. I do everything for her now. I had to stop working as she cannot be left alone at all. She is very busy like a child with no boundaries. I try very hard, Miss Regina, to help mummy. My family makes me feel worthless, mummy doesn’t even know who I am, and I have pushed all friends away because I just didn’t want to burden anyone. I am most upset with my family and their criticisms. Should they be helping in some way?

A: Your situation is not the best; however, I see it more frequently in the Caribbean than other countries. It exists there, too, but not so concentrated as it is here.

Yes, your family should be supporting you. But this is not the case as with many families. Your situation may be as simple as lack of education with your family. It is clear they do not have the understanding of the impact it has on the person caring for the person living with dementia. Many times families are not willing to receive the information related to dementia. This makes it very hard for the person that does deal with it. There is no easy answer.

The best answer I can give you is to accept they are not ready to face what is happening and, therefore, cannot understand what you are going through, which means you have to get your support somewhere else and forgive them. My suggestion is to contact your friends and reconnect and/or make new ones by going to church, finding a support group on Facebook and contacting your local Alzheimer’s Association for other support activities.

Send questions and stories to [email protected] or text 758-4509.

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