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Caregiving Lessons and Dementia

Recently I found myself heading to a presentation about a journey through dementia from a daughter’s perspective.  Loretta Veney is a motivational speaker, a trainer, an author, a daughter, and a caregiver. This personal journey invited her audience into the life of her mother before and after the diagnosis of dementia without sugar coating her experience.  Throughout her presentation, she touched on six main points for caring for a loved one with dementia:

Forgiveness is mandatory. Forgiveness is an important part of healing and mending relationships.  Forgive whatever happened in the past, with others and with yourself. Your loved one may not be able to express emotions like they used to, become more forgetful, or even have personality changes. There may be moments when they accuse you of stealing something of theirs, or forget who you are completely. There may be moments of anger, frustration and impatience, and you may not feel like you are doing enough for your loved one with dementia.  Forgive yourself for the moments when you want it to all be over and for the moments you want to fight back at them.  Your loved one and you are not alone in this battle with dementia.

Heartbreak is unavoidable. Behavioral changes with your loved one battling dementia can be tremendously heartbreaking.  Watching your loved one become unfamiliar with their surroundings, uncomfortable with loud noises, become suspicious with others, and have difficulty with routine tasks and communication may be challenging. Joining a support group, educating yourself, and taking care of yourself is important so that you as a caregiver do not burn out.

Patience is possible. Take each day as it comes, and try to not have unrealistic expectations.  Some days will be great, and others may be awful.  Sometimes when a loved one with dementia begins to repeat something over and over again, you may start to lose your patience.  Distractions such as games, drawing, making sandwiches, going for a walk, and reading books are tasks which can help them refocus and help you keep your patience.  Arguing with someone with dementia is counterproductive because the individual lacks the capacity for logical reasoning.  When someone with dementia is asking a question, no matter how many times you have heard the question before, try to remember that for the individual it is the first time he/she is asking this question.

Preparation prevents problems. Each day holds new successes and disappointments.  Learning how to prepare for spending time with your loved one needs to involve plans and backup plans in case something fails or does not go the way you want it to.  Doing research and understanding your loved one’s dementia is important.  Awareness that some people develop a behavior called “sundowning,” which appears as confusion and agitation in the late afternoon and evening may be helpful in planning for daily activities.  If your loved one has “sundowning,” plan activities during earlier times of the day to best fit the individual’s needs.  If you notice that restlessness is present while waiting for appointments or on road trips, have toys or activities available so that they can keep busy and content.  Finding a new balance is important for the caregiver; make sure that you build a support network, ask for and accept help, educate yourself, try not to take things personally, read inspirational material, stay engaged, and try to be as forgiving and patient as frequently as you can!

Humor is healing. Humor lightens the mood, and is an important tool that everyone needs for the good and trying times.  Humor can be used as a coping mechanism. Separating the disease from the person you love is important when they may be saying something silly or hurtful.  Realize it is the disease talking, not your loved one.  Keeping hope and humor alive makes each day more meaningful and significant.  Celebrate the victories, take each day as it comes, and focus on the fond memories.

Hope can happen. Each person’s experience with dementia and Alzheimer’s is going to be different.  Reading about what works for other people can help the caregivers better navigate their journey and understand that hope can be found through other people’s stories. When Loretta started looking for information to help her understand more about dementia, she realized that there were not a lot of books that were written from an adult child’s perspective. She decided to write down her experiences with what she felt she did right and wrong and hoped that it would make tasks easier for other caregivers. There are also many apps on your phone that you can get to collaborate with a community of people who may have similar experiences.

There are many tools that are available for caregivers, one that I would strongly recommend is Loretta Veney’s book Being My Mom’s Mom: A journey through dementia from a daughter’s perspective. In this book, you can almost feel Loretta’s  heartbreak, as well as laugh while reading about her funny family memories and awkward situations.  Loretta shares advice which may be helpful as a tool for your own personal journey through caregiving with a loved one battling dementia.

There are methods available to try to slow the progression of symptoms or to manage difficult behaviors of Alzheimer’s but, challenges may still appear with trying to keep dignity and social connections intact. You can participate in the fight against dementia by joining a team for the Walk to End Alzheimer’s on September 16th at City Island. Visit the Alzheimer’s Association website or call our office (717) 697-3223 to learn more!

Abigail Lindquist, Intern