Dementia caregiving is one of the most emotionally and physically demanding forms of care. It requires patience, resilience, and a profound understanding of the condition’s impact on the patient and the caregiver. The progression of dementia affects memory, behavior, and physical abilities, making caregiving a multifaceted challenge. At its core, dementia caregiving is a labor of love, but it also necessitates professional skills and strategies to navigate the unpredictable nature of the disease effectively.
To provide deeper insights into the unique challenges and strategies of dementia caregiving, we spoke with Dr. Susan Wilson Krechel, retired anesthesiologist and author of The Dementia Caregiver’s Survival Guide. Drawing from her personal experience caring for her husband through the stages of dementia, Dr. Krechel offers invaluable advice for caregivers to manage both the practical and emotional demands of this journey.
The hardest thing to do is to look after yourself. This is also the most important. Remember, your loved one wants the best for you. Sometimes, in really lucid moments, they will express this. Taking care of yourself has many different aspects; some of these self-care items are best for both of you. Certainly, eat right and exercise; do it together; it’s good for both of you. You must educate yourself about what services are available to you and the loved one you care for. The smartest thing I did was consult an elder care attorney. They can help you navigate things such as power of attorney, declarations of incompetence, and how to qualify for public assistance such as Medicaid, and they may also be able to recommend care homes for respite care in case you need a short break.
Dementia care is unique. While it can be a bit like childcare because dementia patients are losing brain function one brain cell at a time, you may find yourself caring for a 180-pound toddler. The body is strong; the mind is not. This contrasts with debilitating illnesses where the mind is strong, but the body is not.
– Dr. Susan Wilson Krechel
In caring for a dementia patient, you will, from time to time, need to deal with aggressive behavior, and often, you will deal with confusion. Yes, your mild-mannered loved one may become aggressive; they may perceive something as a threat and act to protect themselves. In this state, they can be dangerous. If you are inside, leave the room. They calm down quickly. In a public setting, don’t involve others; someone may get hurt. If necessary, call emergency response. Explain that they are a dementia patient and that restraint may only escalate the situation.
Confusion is frequent, and your loved one may tell you things that are happening that are not happening. It is best not to point out the errors. This is their reality. Trying to change it only makes them more anxious and confused.
Caring for a loved one with dementia is heartbreaking. At the moment, there is no cure. Some drugs may slow the progression but cannot stop it. The outcome is always the same. The brain controls the body; as the brain dies, body functions cease, and death occurs. There is nothing you can do to stop this process.
Do your best to maintain some quality of life for your loved one; keep them walking and as engaged as possible. Never blame yourself for what happens. Thinking, “If only I had done this or that, the outcome would be different,” does not apply. Quality of life is important in dementia care; quantity is not. Death is a given.
If they fall while living life, it’s not your fault. Wandering is a more difficult problem. Dementia patients tend to wander day and night. They may go outside in their underwear in the snow and ice or get lost in the day’s heat. Do the best you can to prevent this without letting them feel they are restrained. They cannot figure out complex locks or secure locks in unusual places. Still, never blame yourself if they hurt themselves. This is part of the disease. Roll with the punches and accept it for what it is.
As Dr. Krechel emphasizes, dementia caregiving demands a unique combination of emotional strength, practical knowledge, and self-care. Her advice highlights the importance of staying informed, seeking professional guidance, and maintaining compassion for yourself and your loved one. For caregivers navigating this journey, investing in their well-being and continuously learning about dementia care are key to providing the best support possible.
Dr. Susan Wilson Krechel is a retired anesthesiologist who became a dedicated caregiver when her husband was diagnosed with dementia. Her caregiving journey inspired her to write two books, How to Navigate the Minefield that is Dementia with Your Loved One and The Dementia Caregiver’s Survival Guide. Through her work, Dr. Krechel offers practical advice and emotional support to those facing the challenges of dementia caregiving, drawing from her personal experiences and professional background.
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