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When Dementia Challenges Love

We don’t like to admit it, but every caregiver faces times when it all seems too much. It is agonizing watching our loved ones fade away into a world of confusion, dysfunction, and dependence. And as heartbreaking as this is, it is compounded by a profound upheaval in our personal lives. Our dreams and expectations have been dashed by an unexpected enemy. We are hesitant to talk about the challenges we face, especially when we become concerned that family members and others may think we are not as focused on helping our loved ones as we should be. Dementia is relentless, and there are no winners.

Common Responses

Feeling overwhelmed is common. There has been no training or road map for dealing with this this tragedy. No wonder our hearts are conflicted. We begin to question whether we are in love with a memory, because the person we have loved for years has changed. In the dementia world, constant vigilance drains patience and joy. At times, our feelings seem inappropriate. Relationships can become strained, and caregiving begins to feel more like an obligation than an act of love. We need a way to regain our balance. Here are some ideas.

Meeting Our Loved One’s Needs

Sometimes ten-year-olds spout wisdom beyond their years. As my grandson observed: “It doesn’t make sense to worry about things you can’t control.” Easier said than done, but we know dementia is not going to disappear, and we are not going to abandon someone we love who is in need. Somehow, we must perform our caregiving responsibilities and strive for personal happiness and fulfilment at the same time. 

The critical first step is to accept the truth. While this is not the life we expected or wanted, it is the life we must live. As we told our kids, life isn’t fair. The night Gayla was diagnosed with Alzheimer’s, I wrote in my journal: “If you can’t look to the future with optimism, you must make the present as positive as possible. My job is to help make Gayla’s life as good as it can be.” But that is only half of the mission. Our lives matter too. Focusing only on sacrifice is self-defeating and not sustainable.

Rather than channeling all our energy into being good caregivers, it is better to think in terms of taking actions to benefit both our loved ones and ourselves. Where is the common ground? When we think about how we would feel if our roles were reversed, we realize the answer lies in one word: compassion. Our loved ones want to be comfortable, respected, loved, and cared for. This is what we want for them as well. It is not the quantity of time we spend with them that matters; it’s the quality of that time. When we shape our comments and actions with this mantra as our guide, we strengthen connection. Compassion leads to stronger bonds and personal fulfillment. So, we must have compassion for our loved ones and for ourselves.

In many instances, people with dementia have expectations that are unrealistic and unachievable. Diverting their attention is our most common response, but this does not prevent these issues from reappearing. There are no sure-fire solutions for periodic episodes of conflict but avoiding verbal struggles and continuously reenforcing our commitment to maintain a compassionate relationship will decrease the frequency of difficult incidents.

Meeting Our Needs

The greatest deterrents to caregiver happiness and fulfillment are attitude and failure to pursue self-care. 

All caregivers experience periods of disillusionment and frustration, because caregiving for people with dementia will forever be challenging. But our attitudes determine how well we survive the journey. If we are driven by love and the desire to help our loved ones, we find that caregiving produces satisfaction and a sense of self-worth. If, however, we look at caregiving only as an obligation, we will be burdened and struggle. Happiness may be elusive, but attitude is a choice that makes a difference. 

We all want our lives to have meaning and purpose. Endless rounds of golf and episodes of TV reruns are not enough. While leisure travel may be enlightening and fun, nothing is more lasting and rewarding than making meaningful contributions to our family or community. While we are challenged by the demands of caregiving, we know that we are making a difference in other people’s lives. And the beneficiaries of our efforts are the people we most care about. Instead of being focused on what we want, we are driven to do what is right. 

There is honor in our devotion and how we are living our lives, but we also have personal needs that demand our attention. Taking breaks to exercise, maintain stability, interact with other people, and reenergize is essential. My failure to do this was my biggest mistake as a caregiver. It nearly drove me to the breaking point and resulted in significant health issues. Astute caregivers will not make the same mistake. 

Every caregiver is told to take care of themselves, and most of us get so wrapped up in giving that we don’t follow that advice. This, however, should be near the top of our priority list. A study published by the American Medical Association reported that caregivers for spouses with dementia had a 63 percent higher mortality rate than non-caregivers.

Realize that when we fail to care for ourselves, we put our loved ones as well as ourselves at risk. Alternative support for our loved ones is available from multiple sources. Appeal to family and friends. Check out local rec centers and day programs. Hire independent caregivers to come to your home a few hours a week. Partner with other family caregivers and alternate periods on and off duty. Contact county agencies, local senior living Communities & Resources & Resources, and churches for leads. Find a way to create free time for self-care and renewal. 

Outlook

Love does not have to feel warm every day to be real. It survives mood swings and setbacks. It is the foundation for the compassion, attitude, and self-care that allow us to successfully navigate the dementia journey. While caregiving is not a role we chose, it provides an opportunity to make meaningful contributions to the people who are most dear to us. This is fulfilling and a blessing. Take pride in what you do.

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No One Walks Alone

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