Denise Slattery, P.E., CFM, CPM, Former caregiver to my mom, Patricia Slattery (1943-2018)
Her eyes were wide open. She looked scared, lost and confused. This was my mother, in the summer of 2018. I had put her to bed (it was about 9 p.m. or so), but she had woken up a little bit later, adamant about going home to be with her kids.
She stopped recognizing me as her daughter some months before. She was getting agitated and my frustration was definitely not helping. We had gotten into an argument, and she started walking away from the house, along the curb. I tried following her, but she yelled at me to stay back. While we were passing a neighbor’s house, he recognized my mom and had called 911. A fire truck had come, with only the lights on (the siren was too loud and it very well could have scared my mom even more). (story continues below)
They started talking to mom in a gentle caring voice. I brought my car near to where mom was sitting on the step of the fire truck, and the firemen helped her get into the passenger seat. I was standing some distance away with the neighbor, hesitant and scared of my mom’s reaction to me. Would she recognize me? Would she still be angry?
After a bit, the fireman ‘introduced’ me to her as her daughter and motioned for me to come forward. Walking towards her, with the sun going down, I could just barely see her eyes and they reflected her emotions then: scared, lost and confused. When I came closer to her, and said Hello Mom in a gentle voice, she recognized me and hugged me. She was not agitated and felt so happy to see me.
This is just one of many stories I could tell you about giving care to my mom who had dementia for about 4 years, before she died from its complications in late November of 2018, just five days shy of her 75th birthday. Giving care to a loved one who has dementia is not an easy road at all; it can deplete you of all that is you. You are no longer his or her spouse, child, sibling or friend; you are a caregiver. If you are just starting down this road, or you may suspect your loved one has dementia, here are few do’s and don’ts to follow:
Don’ts:
- Don’t stand over the person in dominance. Instead, talk at their eye level.
- Don’t raise your voice. Keep your voice gentle and calm.
- Don’t correct, disagree or argue. Try not to think logical as you would normally. Their world is no longer the one we see but the world they see. Try to ‘enter’ that world and be with them.
- Don’t invade their space, but don’t be afraid of touching. A gentle touch on their hand can be reassuring.
- If you offer to stay with the person who has dementia in order for their caregiver to have some time for themselves or for them to run a few errands, please adhere to this. Don’t say that you would love to help, but then rescind your offer when they ask you because you have an errand to run or an appointment to keep. If you say you want to help, please mean it.
Do’s:
- Do establish a routine. The more you can set a routine throughout the day-to-day activities, the more you both will know what to expect, and the smoother your days will run. This helps provide stability for your loved one and doesn’t add to their confusion. This also includes upending their lives, by moving them from their home into yours. If this something that has to be done, please understand that your loved one will be angry or upset for some time; you are creating chaos in their world and because they can’t tell you how they feel, they react by being angry or agitated.
- Be patient, kind and flexible. Caring for someone with dementia is like riding a wave; go with it. Meet them where they are mentally and emotionally at any given moment. It will change constantly, and it is best to expect nothing else. And try to always remember: your loved one is still your loved one; it’s the dementia that is causing them to act this way.
- Allow as much independence for your loved one as long as possible. For instance, if they want to wear sweaters in June, then let them. Allow the person to keep as much control in their lives as possible.
- Try to spend some time for yourself. Take breaks, call a friend, or go for a walk if you can. Find a caregiver support group meeting by calling the national Alzheimer’s Association number at 1-800-272-3900 24 hours a day, 7 days a week.
- Encourage a two-way conversation for as long as possible. If the conversation dies, then engage the person in an activity such as coloring or perhaps looking through a photo album.
People tend to often see only the memory impairment of someone who has dementia, but that is not the only symptom. There are many more: the person finds it difficult to make decisions or solve problems, they put things in unusual places such as the iron in the fridge or socks in the pantry, they can’t complete everyday tasks we usually take for granted: putting clothes on the correct order or how to prepare a meal, they can’t think of words to say and cannot follow a conversation so they become more withdrawn. In the later stages of dementia, the person may become incontinent, their eating patterns will be affected and they may not recognize you anymore or know your name.
As a caregiver you want to give your loved one the best care possible, and part of giving this care is getting to know more about this disease and its symptoms in all stages. Always remind yourself that your loved one is not being difficult; they have lost the ability to tell you how they are feeling, so they act out. By trying to figure out what it is they are trying to tell you can help resolve the problem quickly and helps keep your loved one calm. There are many websites to learn from and books to read from, but, in my experience, the best resource is The Alzheimer’s Association. Find your local chapter by calling 1-800-272-3900 24 hours a day/ 7 days a week, and look into what resources they have that might help you and your loved one.
