Book Review: The Self Care Guide for Dementia Caregivers
I work with many caregivers, mostly for dementia. Caregivers benefit from grief work even before your loved one dies because it’s such a stressful time. Anticipatory grief is hard on a family, and decisions around caregiving can create conflict, resentment, and cutoffs.
When I saw this book, I picked it up hoping to find a resource to offer. The author talks in the beginning about caregiving for her mother in law, so she speaks from experience. She acknowledges that the burden of caregiving often falls on women, many of whom are also primary caregivers for their children as well possibly in addition to working full time.
I appreciate that she acknowledges the huge impact caregiving has on your physical and mental health, and that it’s completely normal to wish sometimes that your loved one would die so you could get back to your life. The financial stress is also a huge factor. Many caregivers would like to have help, either part time or full time, but professional care is often prohibitively expensive.
The book continues with a chapter of education about common and less common types of dementia. If you’re already caregiving, you may already know this information from going with your loved one to medical appointments. This may normalize the symptoms and behaviors for you, or this entire chapter might feel unhelpful.
The next chapter goes into caregiving techniques that will be sustainable and practical for you. The author emphasizes the benefits of routines both to help the person with dementia and for you as the caregiver as you juggle their needs and yours. She also provides a list of safety considerations that you might not think of with an able bodied person but can be hazardous to someone with dementia. Next, the author discusses communication strategies you can use to minimize frustration on both ends as they lose verbal skills or become increasingly confused. Finally, she ends with suggestions to help you ensure your loved one is getting the nutrition and hydration they need.
Chapters 4 - 6 refocus on you as a caregiver and on your stress management, physical health, and emotional health. I know many of the caregivers I work with would be inclined to skip these chapters- after all, the stress isn’t going to go away and your loved one isn’t getting any better. But it’s important to understand the signs of stress and learn techniques to manage the physical and mental symptoms of high stress. I would highly encourage all caregivers to read through this chapter with a focus on self-evaluation and creating a self-care plan that you can fit into your daily routines. The more you can take care of yourself during this season, the more resilient you will be to the challenges that will come up from their disease and from your regular life. Both your physical and emotional well being are important.
The next chapter deals with your personal life and relationships. Caregiving is isolating, even when you have a partner at home. Several of the previous chapters have emphasized the benefits of routine, and this chapter digs into what kind of daily routines you need. The author also discusses strategies for you to ask for help from others, getting professional help, and talking with your boss about your caregiving obligations. The fact is, you can’t do this alone. You will need help at some point. And the sooner you can involve others in care, the easier it will be as the dementia progresses.
“Self care is not a tool to make your caregiving responsibilities easier or to give you a break. It is the requirement that gives you the ability to be a caregiver. Many people believe that self care is only there to help you recover from stress; in fact, it is also a preventative measure.”
Finally, the book looks honestly at the financial challenges of caregiving. Your loved one will need medical care, often during the day, which means medical bills on top of taking ever more time off of work. The supplies, safety equipment, and special foods all add up. You may face the difficult decision of deciding between saving on professional caregiving costs by quitting your job to be a full time caregiver or hiring out for more help so you can work more hours to afford their needs. You will also need to make a decision at some point about when your loved one can no longer make their own financial decisions. This discussion can be very divisive for families, so it is good to talk through decisions about medical and financial power of attorney while your loved one is able to offer their own opinions.
I would highly recommend this book to anyone who is currently caregiving for a loved one with dementia. And if you’re not in the role of caregiver, but you have a parent being cared for by a sibling or a professional, I would still recommend you get this book so you can better understand all that goes into caregiving.