Q: Dear Regina, I really need some advice. My mom has early dementia. I am not sure of the details of her condition, but my cousin has been trying to help her most as she lives closer to her. We have tried to get a caregiver to help keep her from hurting herself but mommy keeps sending the care taker home. How do we keep her safe if she does not allow anyone to help her? We are worried as she leaves the cooker on and she is not eating properly, She has lost so much weight. We think she forgets to eat.
A: This situation is one of the most challenging. At this stage of the disease you are not going to get a stranger to come into her home and start messing with the things your mom feels is her space. This person has to be invited by your mom. The caregiver has to develop a friendly approach, which means just coming over for visits first. You and your cousin should make a list of all the things your mom really likes and a list of things she does not like. What does she like to talk about, what makes her upset? Share this information with your hired help. The caregiver should not enter your mom’s home without you or your cousin in the beginning. The caregiver should be introduced as a friend of yours and you both are just visiting. The caregiver is never to present herself/himself as a person taking over your mom’s care or way of doing things. There is a lot to learn with this approach so the caregiver may need some training to fully understand her/his approach to early or middle stages of dementia.
Persons in the early/middle stages still understand their space, their things and have a sense that their life is being invaded or stripped away. It is scary so they try to hang on to what the brain is allowing them to experience. Trying to logically explain to them that they have a brain disease or they need help may aggravate them more for several reasons. One is that they are not able to process the information you are giving them. They can grasp part of it, but not all, so it becomes confusing to them and because you are not making sense to them, you become a threat to them and they will fight you and not trust you. Go with their logic, and if your caregiver makes a mistake, apologize to her. It is the quickest way to regain trust. No one wants to feel stupid AND LIED TO. Say sorry, you were right.
Introducing new caregivers is a process at different levels of the disease. The earlier stages is the hardest. Families will need to understand that the help has to build trust before fully becoming a daily routine visit and get things done. You as family will have to take some time to be with your mom and the caregiver as friends and go out to lunch together and do things that you want the caregiver to do. Make dates with your mom and caregiver. Slowly tell your mom you will not be able to make it, have the caregiver call your mom teling her to let you know she will be late for your fun time together. Allowing your mom to feel part of the planning and have responsibilities will build relationship with the caregiver. This is tea time, lunch time, whatever your time together is. Once that friendship is created the caregiver can come more frequently and it is a visit and companion care. Not a takeover. The caregiver must learn how to encourage your mom to do things without making her feel she can’t do it. This is skill and takes practice.
Building the relationships seems like it is not enough supervision for your mom in the beginning but remember the other day your mom sent them home and you had no one there. Being able to check on your mom and give you feed back will be comforting. The process takes 2 weeks to a month to become a friend/companion depending on the time that is put into it. I would advise the caregiver to get some dementia training so he/she can be more effective. Once you get to a place where your mom accepts the person then you can deal with the food intake.
Quote: “Suffering is always hard to quantify – especially when the pain is caused by as cruel as Alzheimer. Most illnesses attack the body; Alzheimer destroys the mind – and in the process annihilates the very self.” – Jeff Kluger
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