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An Open Letter to Dementia Caregivers

open-letter-dementia-caregivers

Alissa Sauer

Do you know someone who is reluctant to move a loved one to memory care? We know that deciding to move a loved one with dementia to a memory care community is a personal and incredibly difficult decision. Our goal is to come alongside families coping with this devastating diagnosis to provide support, partnership, and hope. The letter below outlines important considerations when talking to a friend about moving their loved one, and we hope it helps you as you support the caregivers in your life. 

Dear Caregiver, 

I’ve been thinking about our conversation yesterday morning. Thank you for opening up to me about your mother’s ailing health and dementia diagnosis. I know how stressful this is for you. I applaud your selflessness in even considering bringing her into your own home to care for her. I know how much you love her and can understand how you may feel like you have to care for her because she is your mother and sacrificed so much for you and your sister for so many years. I know the guilt you are experiencing firsthand. I do not want to add to your guilt if you feel committed to caring for her yourself; however, please know that the amount of work you are taking on will include managing personal and intimate hygiene care, could impact your financial situation, and may even upset the balance in your family dynamics as your primary role transfers from loving son to a caregiver. 

I know that you know this, but dementia is a progressive neurodegenerative disease. This means that it gets worse over time. With no cure or treatment on the horizon, your mother will likely lose the ability to take care of herself. This includes losing the ability to dress, bathe herself,  or even eat on her own. If she lives with you full-time, you will become responsible for her physical health, including her medication schedule (which may be complex!), her regular baths, and spoon-feeding her meals. I would highly encourage you to seek out a memory care community that will meet these needs, allowing her to maintain the privacy and dignity she desires. 

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Second, as dementia progresses, caregiving becomes all-encompassing and can unexpectedly impact your financial situation. You will most likely need to make changes to your work schedule and find childcare for your children, increasing your expenses and lowering your income,  having a severe financial impact on your personal life. Not only will caring for your mother in your own home require direct care costs such as hiring an in-home caregiver, making modifications to your home to make it more accessible, and having dementia-friendly foods available,  but it will also demand you are home more than you currently are. As your friend, I worry about the loss of income you may experience by caring for your mother in your home. If you were to move your mom into a memory care community, you could work with insurance and the community to ensure costs are covered more realistically. 

Finally, I worry about your relationship with your mother. If you become her full-time caregiver, you will undoubtedly have difficult conversations with her where she may become argumentative and angry. Although I know you have her best interest in mind, her dementia may cause confusion and stress, causing her to lash out at you. She may begin to see you as a caregiver, as someone who tells her what to do and when to do it, instead of her loving son who cares for her deeply. Moving her into a memory care community would leave the caregiving to the professionals, and your regular visits can be filled with fun! Memory care communities are well-equipped to provide life-enhancing care services and programs from professionals who know how to interact with someone who has dementia. Instead of caring for your mom at home, 

I would encourage you to join her at her memory care community, where you can do art projects together, attend a writing seminar, or enjoy a meal (prepared by someone else!) that makes you both feel comfortable. 

The truth is, you can start caring for her in your own home now and then move to memory care later. However, doing so may cause undue stress and anxiety in your own life and hers. I would highly encourage you to seek out a high-quality assisted living community now where she can transition to memory care when her dementia progresses. This will help her settle in a familiar environment, set up new routines, and even find friends! I will, of course, support you in whatever you decide to do. As you have your mother’s best interest in mind, I have yours in mind and urge you to protect your relationship with your mother and seek out a senior living community earlier rather than later. 

Sincerely, 

Your friend always

Do you know someone who could benefit from memory care? Our memory care communities provide specialized care that honor the individual. Find a Leisure Care memory care community near you.

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