IF ONLY I CAN REMEMEBER BY REGINA POSVAR
Q: Good Day Ms. Posvar, My mother is bed ridden with Alzheimer’s. She does not talk anymore only sometimes with a few words but she mostly sleeps. We have a big family but most do not come to visit with her. They say she doesn’t know if they are there or not so why trouble. I heard someone say she is there. Do people with Alzheimer’s know who and when family and friends come to visit?
A: The last stages of the disease seem so empty to the person with dementia and the family and friends. It is empty… but it doesn’t have to be. For the person with dementia, this last stage is very lonely and often painful and scary for them. You wonder how we know this if they do not talk to us. People with late stage dementia still have the ability to feel and sense the presence of another person. They can still communicate with non-verbal skills. There are many signs that they use to tell us; we just need to be open to them. And if you use rhythmic and low tones in your voice you may be surprised with an appropriate verbal or physical response. A person with dementia in their last stages will actually have more awareness and can respond more than a person who is in a coma. A person in a coma is known to be aware of their surroundings and if they awaken from the coma can tell you detailed events during their “awareness moments” while in a coma. Therefore it is disrespectful to talk about the person with dementia in the third party while you are standing or sitting next to them. Your mother is still here and just like you and I, we would not want to be alone and forgotten.
Your mother will experience the presence of love with each person who visits and/or cares for her. Playing nature or relaxing back-ground music, singing a favourite hymn of hers over and over in lower tones, she may try to sing them with you after a while. Reading a book she likes from the past and sometimes hearing a new story with lovely passion is soothing. Don’t be afraid of silence. Sometimes just hearing either the soft back-ground music, nature outside, or your own heart beat is a blessed moment.
This too will be a healing time for family and friends as they think about how things were and how they are now. A wonderful time to reflect with someone you love. Emotions of tears and laughter are expressed. Sometimes negative feelings arise and it is ok. Use the feelings to forgive and heal.
To answer your question more directly: Yes they do know your presence.
They are unable to logically communicate connecting the dots of who you are or how they know you. What they know is how you make them feel. And without them telling you they understand you, likewise you at times feel that non-verbal connection that you both are aware of each other. This is the beauty of humanity at one of the highest levels of love. Just “knowing” that someone cares is comforting.
Comfort for families and friends are to focus on the presence of the moment, not knowing your name and relation to them.
Q: Good morning Nurse Posvar, Mummy has always awakened early for tea and biscuit. She would put the kettle on and would sit watching her glorious garden. She is unable to do this anymore so I do it for her. I am frustrated and sad as she does not try to take the tea or biscuit anymore on her own. It seems so early for this change. I try to feed her and she pushes me away. I am just trying to cope with the changes.
A: This is really hard for families and it is understandably noted. There are many variables as to why the change besides the brain causing it. Keep in mind that sometimes when we help our loved ones we may at times take away all of their ability to do some things independently. It is easier for us to do it for them. Example: for feeding, you may try putting the biscuit in her hand instead of putting it in her mouth at first. Help her with the fork or spoon in her hand and model how to use it by eating with her. Initiating the feeding may allow her to complete it on her own. In other words, help her help herself before doing it all for her. This will preserve her dignity while she lives with Alzheimer’s.
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Quote~ The quality, not the longevity, of one’s life is what is important.
— Dr. Martin Luther King, Jr