Caregiving Both Ways

A Guide to Caring for a Loved One with Dementia (and Yourself!)

Molly Wisniewski

• Publisher: Mango Media
• Year: 2019
• ISBN:
  9781642506983
• Topic: Medicine
• Subtopic: Caregiving

This essential guide to caring for a loved one with dementia offers experienced advice on communication, self-care and finding the support you need. When a loved one is diagnosed with Alzheimer's or another form of dementia, it can be difficult to know what to do. Your day can spiral into a never-ending series of tasks and attempts to communicate that leave you both frustrated. In Caregiving Both Ways, Molly Wisniewski offers essential advice for avoiding burnout and acclimating yourself to this new phase of life. Molly demonstrates how to navigate difficult moments with techniques she's mastered from years of experience working with dementia sufferers. When your loved one behaves differently than they used to, they're just communicating in a new way. As a caregiver, the most important thing you can do is learn that new language. Balancing your own priorities in this time can be a challenge, but honoring self-care is essential when caring for others. Molly covers all this, plus how to build a strong support system with help from professional caregivers and how to prepare for end-of-life care. In Caregiving Both Ways, you'll find worksheets, exercises, and essential tips for smart, empathetic caregiving. You'll learn how to:

• Use non-medical interventions to reduce anxiety
• Prioritize and make time for your own care and mental health
• Identify triggers that may cause confusion in your loved one
• Handle difficult medical decisions
• Provide support and validation through all stages of Alzheimer's disease or dementia

Part One 

How to Ease Care through Activity Engagement

Chapter One

The Unexpected Family Caregiver

The caregiver is often considered a hero. We acknowledge how difficult it is to care for someone else, and, while there are programs and support systems in place to advocate for the family caregiver, the bulk of the work is left to you to handle. The joyful moments spent with someone living with dementia or Alzheimer’s are great, and I’ve had the honor of developing relationships with many individuals living with this disease. These moments, however, are formed outside the daily care routine. I’ve witnessed firsthand the struggles between caregivers and care recipients as they navigate the most delicate aspects of care. These intimate moments of caregiving hold a vulnerable part of the human experience, and one that should never be taken lightly.

The start of a caregiving journey will be different for everyone because the role of a caregiver can be brought on by an acute illness, or maybe you’ve assisted in a family member’s care for years without realizing: a trip to the doctor’s office, scheduling appointments, or light housekeeping. Often the tasks are easy enough, and for many people, these roles and responsibilities are taken on without much thought. As the family, many assume it is just part of what’s required or expected.

Whether it is a spouse, a parent or sibling, grandparent, aunt, an uncle, or whoever raised you, they are older now and need a bit more assistance in their day-to-day activities. The process all seems innocent enough, but, as care demands increase, taking care of your loved one can unexpectedly begin to intrude on your daily routine, job, family, health, and finances. Without a proper plan in place, caregiving becomes a much more complicated process for family members to navigate.

While the word care may be in it, caregiving is practical and medically driven, which leaves very little time for emotional care and relationship building. Continued focus on a person’s physical well-being can be both draining and stressful. As we move forward throughout this book, the acknowledgment of feelings of stress, guilt, and even anger is essential. So many caregivers have expressed these sentiments in whispered tones, as if they were wrong or something they should be ashamed of feeling. They are not. These thoughts are healthy and come from being put in a difficult situation. What matters is the way you choose to handle these thoughts.

Due to the sensitive and delicate nature of providing care, it is essential that both parties agree to the care arrangements. The care recipient should express either verbally or in writing what kinds of care measures they agree to, who they want to be providing this care, and an agreement with that person that they are willing and able to take on the role. The caregiver should identify what kinds of care they can provide and understand in what aspects of care they will require additional assistance. Unfortunately, this is hardly ever the case. As mentioned above, family members take on the role unassumingly, and too often without a conversation with the older adult in need. Society tells you to plan for retirement, but the conversation often stops there and neglects to prepare for, or even discuss, a time when you are no longer able to care for yourself.

Longevity is a relatively new concept in our society. Black men who were born in 1950 had a life expectancy of fifty-nine; white men were expected to live to sixty-seven. Today, this is retirement age. Meanwhile, white women who were born in 1950 had a life expectancy of seventy-five; black women were expected to live to sixty-three.1 Medical advancements and a better understanding and appreciation of nutrition and exercise have resulted in longer and healthier lives for both men and women. We never needed to make plans past retirement because no one expected even to live that long, so now, as we navigate the complexities of an aging population, planning becomes much more relevant and necessary.

To not have these conversations leaves family members to struggle to make the “right” decision for their loved one without knowing what they would want. For instance, AARP (American Association of Retired Persons) and the Centers for Disease Control report that 87 percent of adults over the age of sixty-five have expressed the desire to age in place (to live in one place through every stage of the aging process) 2,3. However, to make aging in place a sustainable option takes a lot of planning and a lot of money. This, coupled with the less than ideal reputation of nursing homes and other senior care facilities, creates added pressure in deciding whether your loved one should come and live with you. I’ve had many conversations over the years with people who say “that is just what you do”; however, living with a parent or having the parent come live with you is a significant decision, and there are a lot of factors that should be considered before living together. Not everyone has a good relationship with their parents, but that doesn’t mean you won’t have to care for them. Don’t make the situation worse for yourselves by creating little to no space to step away from the caregiving situation.

The right care setting is out there for all of us; it just takes time and consideration. No doubt, if you have taken on the role of caregiver—no matter your relationship with your loved one—you want the best for them. Sometimes that means you are the primary caregiver, and sometimes it does not. If your loved one hasn’t made a decision on how they would like their care handled, or if they assume you are the person for the job without discussing it with you, you have every right to decide for yourself if this is what you want to do. You are not a bad person for saying that the emotional and physical toll of caregiving is just a bit too much for you to take on.

There are a variety of ways you can provide care for your loved one. Getting to know them during this new phase of their life is so important, and, when left to focus primarily on the physical care, this special time together can become muddled with stressful moments. You deserve to look back on this time with joy and love.

Accessing education or resources to learn how to provide care can be difficult. It’s not that there is a lack of information on the topic; rather, because caregiving is such a personal experience, it is hard to know where to start. But it is important that you know you are not alone. There are both experts and other family caregivers out there, advocating and educating based on their own experience, and they are more than happy to share what they have learned along the way to help you.

The Caregiver Generation

The role of the caregiver can be found in almost every generation, and, over time, our understanding and recognition of the caregiver’s role has been extended beyond the family. Over the past three generations, there has been a dramatic shift in the expectations of who gives care and the extent of the caregiving demands assumed by those individuals providing care. I started work in senior living in 2005 on a skilled nursing unit, and while I didn’t know it at the time, the demographic cohort I was providing care to was part of what many refer to as the Silent Generation. Born between 1925 and 1945, the Silent Generation are known for their “waste not, want not” mentality that many suggest they learned from living through the Great Depression. They are a population of fifty-five million in the US, and for the past twenty years had made up the majority of retirees.4 They also gave birth to the Baby Boomers and, as they’ve gotten older, have been cared for by Boomers, who are an entirely different group of individuals.

The Baby Boomers were born between 1946 and 1964, and they are the largest generational cohort, making up 28 percent of the American population at seventy-six million people. Unlike their parents before them, the Boomers are known for their individualistic mindsets, are socially conscious, and make up the most substantial subset of the workforce. In 2011, the first wave of Boomers turned sixty-five, and it is projected that every day until 2030, ten thousand Baby Boomers will reach the age of retirement.5 Over the fifteen years I’ve worked in senior living, I’ve watched as the Boomers started to move into long-term care and witnessed the challenges the field has already begun to face as others attempt to care for such a large subset of the population.

For now, many Boomers still provide care to their parents of the Silent Generation, and they are doing so as they plan for their own future care needs. One of the biggest questions we ask in the field is, who will take care of the Boomers when they need it? So far, many in this demographic have been vocal about not wanting the same kinds of care their parents had, and they are working to change the “face” of old age by challenging stereotypes. But, as a whole, this group is still not planning for their long-term care needs, and, if we as a society are to provide care to such a large group of people effectively, it is important that this generation join the conversation and take responsibility for making a plan for their future care needs.

As the number of people in need of care grows, there is a significant decline in avai...