In the previous post, I outlined my mother’s progression into being “pleasantly demented,” and described some of the blessings we’ve discovered during this complex journey of loss and love.
However, these blessings did not appear out of thin air, nor were they handed to us on a silver platter. And my mother being "pleasantly demented" wasn't dumb luck. As caregivers, we've had to do our part to make this journey as pleasant as possible for her and us. Here are the 5 keys to our success.
Providing compassionate, respectful, relationship-centered caregiving. The importance of this cannot be emphasized enough. Research abounds as to the effectiveness of care that honors the person and his or her history, preferences, capabilities, dignity, and needs for companionship, sensitivity, caring, and kindness. Because people with dementia become increasingly disinhibited and react honestly to their surroundings and interactions with others, they will let you know what’s okay and what’s not. For sure, some will withdraw into unresponsiveness if their needs aren’t being met, while others will persistently protest. Either way, caregivers very clearly reap what they sow. In other words, if you forcefully impose your own agenda, speak sharply, and/or disregard the humanity of the person, you will reap opposing forces, sharp reactions, and/or dismissive or apathetic responses. But if you treat the person with accommodation, caring, and respect, you reap cooperation, kindness, and warmth. And everybody wins.
For example, rather than fighting my mother’s denial about her failing memory, we quickly learned to dodge any conflict by framing our increasing care in terms of, “I’m going to write myself a note and put it here so we can all see it.” Or, “You’ve done so much for us over the years, now it’s our turn to do for you.” Or, “You deserve to be treated like a queen-- I’ll drive.” This way, she was able to lean into our care rather than resisting it.
We also focus on her strengths-- what she enjoys doing, what she's able to do, and how delightful, warm, and funny she can be. Plus, rather than insisting she be her pre-dementia self, we've embraced the new facets that have emerged, most notably her athletic abilities and a love of dancing. Before dementia, she held fast to the notion that "ladies did not perspire or exert themselves" but after dementia, she energetically plays badminton and volleyball, and races me to the end of the swimming pool with great determination. To level the playing field, I do the "dog paddle" like she does, and try as I might, I lose every time!! (Just so you know, I can clean her clock if I do any conventional stroke. But it's more fun to marvel at her ability to win doing it her way.) And before dementia, she was far too self-conscious to dance. Now, she'll cut a rug, and it's a favorite activity several of us share with her. Zumba anyone?
Quality self-care for caregivers. Self-care is the antidote to the burdens of caregiving. Self-care includes taking regular breaks from the demands of caregiving, attending to your own health, getting your needs met, doing what you enjoy, and engaging in soothing habits of daily living, such as adequate sleep, nourishment, moving your body every day, and going outdoors. Martyrdom is the opposite of self-care. Studies show that when caregivers feel highly strained by caregiving, they are at significant risk for physical and mental health problems, and are more likely to die than caregivers who don't feel highly strained. Most sobering, more than 30 percent of caregivers will die before their chronically ill or disabled loved one dies, even if they start out their caregiving role in good health. Self-care is particularly a matter of life and death for spouses and adult children who are the primary caregivers of loved ones with dementia. Hence we dedicated ourselves to building a team of caregivers so my father isn’t crushed by the demands. Indeed, I'm certain that my father’s life depends on it. We've also impressed upon him that his top priorities are to stay in good health and good spirits, and outlive my mother. It would be such a pity and a waste if his life was cut short by her dementia. He is also a critical member of the caregiving team by managing the money, being my mother's beau, and holding down the fort overnight and early in the morning. So taking care of himself benefits everyone.
I also encourage and support our hired caregivers in their own self-care. They know that if they need respite, we have enough team members (including my dad) that we can cover without strain. I also emphasize that their primary focus is to enjoy themselves, as in, find activities that are enjoyable for both themselves and my mother. And it turns out there is much common ground, including swimming at the heated pool of a local retirement community, doing jigsaw puzzles acquired cheaply from thrift stores, going for long walks, getting outside and observing nature, and finding treasures in flea markets, reading aloud to her, and watching funny, romantic, or entertaining movies (no violence allowed! It’s bad for all of our brains.) And of course, dancing.
A team approach to care. While I refer to my father as the primary caregiver and he’s owns that responsibility, we surround him with a full team that provides him with more than adequate respite. Our team consists of a weekly housekeeper and 3 dedicated women who do the vast majority of the caregiving (and cooking), working from 10 am to 8 or 9 pm, 7 days a week, giving my father the freedom to live his full, rich life of activities and pursuits. It also frees us children from the burden of care, though we do pitch in and get paid for our efforts. Getting paid has been key to us kids avoiding burnout and resentment, and I recommend this strategy-- whatever is affordable is important, as it is appreciated, reduces our own caregiver strain, boosts morale, and ensures ongoing dedication.
Of course, this intensive, quality caregiving is a costly endeavor, but it has been cheaper or comparable to placing my mother in a “memory unit” of a local retirement community. Such placement is a valuable and valid option for any family that, for whatever reason, can no longer keep their loved one in the home. But every year when we review this option, we decide against it, partly because her care is within the realm of our abilities, and partly because my father also benefits from the company of the caregivers and his home remains full of life. And if we should ever require financial assistance, there are resources available. Taking the federal tax credits and deductions for dementia care definitely stretches our financial ability.
A well-trained team. Each of our caregivers is coached, supported, and supervised by me, but lest you think that it’s necessary to be a psychologist to do this, fear not. Anyone can do it, as long as one seeks to be informed about the kind of care that will help your loved one with dementia thrive. Because dementia is such a widespread issue, there are many valuable resources to tap into, including
By sending our caregivers to workshops, making books available, and providing the materials and opportunities for a variety of activities, we are clearly demonstrating that
- we value quality work,
- we want to promote their professional development, and
- we support their efforts to be competent and feel confident on the job.
And so, they too are thriving. I also approach team management as a collaborative effort where we troubleshoot and solve problems together. Because they have more contact day-to-day with my mother than I do, I also consider them the experts on what’s going on with her, and they appreciate the fact that I rely on their insights and advice to inform my guidance and coordination of the team and the care they provide. I make an effort to communicate often, and cultivate my own relationships with each of them, sometimes hanging out while they are on duty, just for the fun of it. This is another way to provide respite to them.
A mindfulness approach to the journey. Mindfulness practices by caregivers can reduce unnecessary suffering, which makes this journey so much easier on everyone. Mindfulness includes bringing your awareness to your body and to the present moment, which soothes your brain, offers clarity, helps you find peace, and cultivates compassion for self and others. Mindfulness practices include meditative breathing, yoga, and spending time in nature. You can find more great ideas in the book, Caring for a Loved One with Dementia: A Mindfulness-Based Guide for Reducing Stress and Making the Best of Your Journey Together, by Marguerite Manteau-Rao.
These 5 keys to providing quality dementia care are essential to cultivating my mother's contentment and ensuring my father's longevity. It also makes the journey a more pleasant one for our whole family.
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