Rebecca was just 19 years old when her mother was diagnosed with early onset Alzheimer’s Disease. She was home from college on break at the time. She recalls her brother was in high school and needed their mom to write a note for school to be excused one day. Her mother asked Rebecca to write the note and said she’d sign it, as she had done many times before. Unfortunately, her mother was unable to sign the note. A seemingly simple task, it was what Rebecca recalls was the first time something had changed in her mother.
It was 1979, at a time when Alzheimer’s Disease was much less known and certainly was not the household word that it has become today. She recalls, her mother would drive from home in Keene to their summer home that was only a 20-minute drive, and yet, she’d get lost. She’d also find dishes in the basement that her mom had hid, a behavior most can barely make sense of, yet, this is common among those experiencing some form of dementia. They try to make sense of their reality and might be attempting to gain some control of their situation. She started to have a look that was different, a gait that was different. It became apparent that something was really wrong. Unfortunately, her mom’s health began to fail quickly. Rebecca started taking courses at the local college, Keene State, instead of going back to the University of New Hampshire to be stay with her mom and care for her.
It can be tough to care for a loved one who needs a substantial amount of dedicated time and attention, as many of us work and may not have the opportunity to take time off or step away from a work situation. It can be financially challenging, not to mention the emotional toll it can take in seeing someone you love not be able to do things as they once could.
Rebecca Montrone, now a certified holistic healthcare practitioner herself (& owner of Wondrous Roots), a career that was inspired after caring for her mother, offered some encouraging words and tips for caring for a loved one who has Alzheimer’s Disease. Her perspective is personal and professional, and truly gets to the heart of things.
First, you need to be honest with the situation and understand that you cannot teach new behaviors. The person with Alzheimer’s Disease has learned what they have at that point and it’s important to keep that in mind as you help to navigate their daily activities.
The caregiver needs to be there as much as possible. It is also challenging if one person is bearing the weight of all the care. It is important to figure out who in the family and who in the medical field will be part of the team. Not only do you want a team of individuals, but you want the team to be the same team throughout your loved one’s care. It is tough enough that their memory is starting to decline, so you want as much familiarity as possible with the faces they see and people who understand what they do each day.
Along the same lines as having a consistent team, there should be a consistent routine. Rebecca remembers helping to bathe her mom and helping her with her meals. Routine activities we take for granted, like brushing their teeth, bathing, meals and meal time, bed time and so on are best on a regular schedule along with the way in which those activities are done.
Innovation is key. As your loved one’s health is declining, things can change day to day. What works today may not work tomorrow. As Rebecca claims, “It works until it doesn’t work, then you need a new way.”
Be flexible. Allow them to do everything they can do. This again can continue to change. So, as you let them do everything they can do on their own, their ability to do things will change. So, as a caregiver, you should pay attention to their abilities and limitations and start taking on what you need to do for them.
Take care of yourself. We cannot be good for anyone, if we cannot take care of ourselves. We need to preserve our energy and keep things uplifted. Rebecca would get up earlier than her mom did, before her mom needed her, so that she could have time for herself to think and to journal. This is important to continue to do things for yourself that bring you joy.
Do not take on more than you can handle. Ask for the help or figure out what you can do if you are unable to care for your loved one. We recognize it is harder for people today, as there are less single income families who may be better able to organize the caregiving in their home. Rebecca had a lot of family support and that made a huge difference.
Be patient. The responsibility and stress of caring for a loved one can have a huge impact on the family dynamics. Tempers can fly, anger can set in. Things aren’t as smooth as they might have been in the past. Remember that you’re all working towards the same thing, caring for your loved one and providing the best environment for them that you can.
Grieving is also a huge part of the process. Let yourself grieve, as it can be counterproductive to hold it all in. Rebecca has a strong faith, and she let us know she found joy in caring for her mother, as she is ‘eternally minded’. Whatever your belief system is, some form of faith can be helpful in continuing to process your situation.
This is just one story, and we know there are many. We all experience our loved one’s health situations differently, but there is a common thread in being able to manage the situation. We hope these tools are a reminder of what you might plan to do should you ever come into a situation like this.