I want to talk about a very important concept, building your “care partner team.” It is far too easy to think as a spouse (or primary family caregiver) facing caregiving … “I can do it all” or “I have to do it all”.
You know I always loved that song by Helen Reddy, “You and Me Against the World.” But that is absolutely NOT the right perspective. You will burn out AND loved one will miss out on the caring, love, expertise and rich relationships with others.
Building your care partner team is vital. Ours include a wonderful adult day program (two days a week), our adult children (living across the country), my husband’s alumni friends, his doctors and nurses. It’s true that my husband’s condition continues to “evolve” and I often feel I am in a state of constant assessing and adjusting. But I know I have my “care partner team” in place and ready to help us. Before I ask for help, I am careful and respectful to think about the right person and right question to ask.
I am often faced with the challenge of getting my husband somewhere that I know is impossible for me alone. Instead of just saying, “sorry I just can’t get him there”, I think about who best could help me. Last April when Bill’s sister passed away in NY, it was my Denver son who flew in and helped me fly his dad to a family gathering and funeral that meant the world to Bill. Afterwards, the 3 of us drove around to special places in Bill’s hometown as Bill shared memories of his years there. It was an incredibly meaningful time for each of us. And, it was at the end of that visit that our Denver son looked at me and said, “Mom, you can no longer do this on your own.” And so began our move to Denver.
The lesson: Build and nurture your care partner team for your loved one and yourself. It’s not just finding and coordinating care, expertise and support. It’s about expanding the circle of love for you and your loved one!
Caring for a loved one with Alzheimer’s is a full-time job. It is a thankless and exhausting labor of love and one that many caregivers are unwilling to step away from even for a moment. However, it is this sense of obligation that often results in caregiver syndrome. CNN notes caregiver syndrome presents with guilt, anger, depression, and deteriorating health. It can be debilitating and compromise the care being given. Here are a few ways to combat caregiver fatigue so that you may continue to provide lifelong care for your aging family member:
Ask for assistance. It’s easy to get wrapped up in the day-to-day care of a person with Alzheimer’s, dementia, or other cognitive disorder. Between repeating yourself over and again, administering medications, and calming unnecessary outbursts, you may not even have time to ask for assistance. But you should. Adult children, grandchildren, and even close family friends may cherish the opportunity to bear some of your burden.
Consider respite care. Even if the afflicted doesn’t have other family that can step into your shoes, there are a number of companies that offer respite services specifically for Alzheimer’s caretakers. The Alzheimer’s Association assures that it’s normal to need a break. It does not mean you don’t love the person with dementia but that you understand his or her well-being is directly related to your own. A respite provider can take over every aspect of care including cooking, cleaning, bathing, and companionship.
Outsource time-consuming tasks. Caring for an Alzheimer’s patient also means caring for their home and pets and fulfilling other obligations on their behalf. Many of these time-consuming tasks can easily be left to the hands of others without compromising your position as primary caregiver. Dog walking, cleaning, and grocery shopping are just a few of the chores that should occasionally be handed off in order to give you a break.
Take time for yourself each day. Your mental and physical health should be among your top priorities. Set aside at least an hour each day to focus strictly on yourself. Read a book, paint your nails, go for a walk, or simply snuggle with your favorite four-legged friend; studies have shown that time spent with dogs can reduce stress and help heal depression and anxiety. Your body and mind will feel better if you physically separate yourself from your duties even if just for a little while when your loved one is sleeping.
Understand the disease. One of the biggest sources of stress in many Alzheimer’s caregiver’s lives are the unpleasant personality changes that may accompany the disease. It’s not unusual for Alzheimer’s patients to be described as cantankerous or overly-emotional. This is stressful enough at home but can be even more so when trying to do things to keep the patient’s life as normal as possible. Traveling, dining out, and doctor’s’ office visits are especially trying. Remember that Alzheimer’s is a degenerative disease that takes a toll on the brain. Your formally sweet and patient grandmother may have morphed into an angry and bitter woman who lashes out at everything. She can’t help it, and she isn’t trying to be difficult. Once you understand the effects on the brain, it is easier to handle the emotional roller-coaster associated with watching helplessly as your loved one changes for the worse.
Remember, just because you’re in charge of the daily mental, physical, and medical care of someone else doesn’t mean that you should set your own needs aside. There is no shame in stepping out for a moment to reclaim your sense of self. After all, you can only provide the best care if you are in your best shape.
As caregiver spouse for my husband (with Parkinson’s and Lewy Body dementia), I want to share a few of my key “lessons learned.” I wrote this “still relevant” list in another blogpost 2 years ago. Amazing how timeless these lessons are.
As a caregiver, recognize that you will ride an emotional roller-coaster. There were moments of feeling blessed for receiving an early diagnosis and then times of despair as I realized that our future had changed forever.
Recognize that while there may be no cure for a loved one’s diagnosis, we each can choose our response to the situation. I’ve always been an action-oriented advocate. Know there is a time for that BUT there is also a time for just being present with your loved one. There is great healing in your presence, even just sitting in silence.
Certainly educate yourself and your family members about the illness and prognosis. But recognize that each family member will process the situation differently and in their own time. My daughter told me she could not bring herself to read the info I sent her, but one night she watched a Netflix show, “The Boss”, in which the lead character has Lewy Body. She told me she sat, riveted to the show, and finally was able to understand what was happening to her father.
Ensure you build and maintain a circle of support for your loved one and for you. My husband’s “twice a week” CAREgiver is a vital part of his life. He tells me that she patiently helps him, shares in his interests and even plays the piano for him. As for me, a colleague convinced me to take a much needed birthday getaway weekend with a childhood friend while my son took my husband to see his sister. Sometimes it seems that all the planning to do special events is just too much trouble and expense, but it is critical for your well-being.
One thing I struggled with even before being a caregiver was getting enough sleep and fitting in workouts. This is not just important. It is vital to your physical and emotional health. Set a bedtime and get at least 7 hours of sleep. I choose to do my workout in early morning. It doesn’t matter when you exercise, meditate or take time for yourself. The key is actually doing it!
And, finally, recognize you are on your own unique journey. There is no right or wrong way to do things. So much is out of your control. If you act out of love, compassion and the humility that you need others, you will be doing the best you can for your loved one and yourself.
Thanks to all the many local friends and colleagues who support me each day as well as some of the most amazing virtual colleagues. It is from your wisdom and insight that I have been able to craft my caregiving philosophy and all I do. I love each of you, Viki Kind, Gary LeBlanc, PK Beville, Susan Baida, and so many more.
If you’d like to share tips from your caregiving journey, please join me on Facebook at “Transition Aging Parents”.
(Many thanks to our guest blogger Laura E. Bender, a Ph.D. student in health services research at the University of Washington School of Medicine.)
Conversations about the end of your life can be scary, sad or awkward. But these conversations also can be comfortable.
A few years ago, on a flight from Denver to Philadelphia, the woman seated on my left asked me what I did for work. I assumed my response would kill the sociable dynamic of our conversation if I didn’t choose my words carefully. I’m a palliative care researcher and, at the time, I was reading detailed patient death notes in medical records and talking with family members of recently deceased veterans about the care they received in their last month of life.
“I study the experiences of people dying and the choices people face at the end of their life,” I told her.”
Most people would quickly respond with a degree of uneasiness, saying how sad my work must be, and then they find a way to change the conversation. This woman was refreshingly different. She dove into how important she knows my work is and how she is confident in the choices she has made for herself. I learned she was perfectly healthy and vibrant. She didn’t work in a health care related field, but she was clear when she did and did not want a resuscitate order.
Many people rarely have such a casual conversation, let alone any conversation at all about advance care planning and end-of-life choices. But now is a good time to think about that decision by using the many free resources available for National Healthcare Decisions Day at nhdd.org
I confidently can say that people often don’t know that they even have choices. Many of the people I have spoken with assume they will get the type of care they want wherever they are. If a person has a condition so severe that he or she is unable to communicate, doctors, family members, friends, and, even, sometimes state and federal regulations dictate what happens. Any disagreement may prolong decision-making and possibly increase the chances of suffering. This confusion and conflict that can arise during difficult times can be eased with preparation.
Educational barriers often result in inadequate end-of-life care conversations. The NHDD website provides links to official legal documents for your state, as well as games, such as “Hello” (commonpractice.com/hello), a conversation game about “living and dying well” that can be played by anyone of all ages. NHDD reminds us that it is never too early to talk about your health care preferences and you do not have to figure it out on your own.
I long to live in a world where there are people like the woman on the plane who feel empowered to discuss these important decisions. Show love for yourself and those you love to live the best life all the way through to the last moments.
Laura E. Bender is a Ph.D. student in health services research at the University of Washington School of Medicine.
In my ongoing series of the “Face of Lewy Body”, this post explores the challenge of traveling with someone with Lewy Body. We’ve had quite the month. I placed my husband Bill (mid-stage lewy body) in respite care for a week while I attended a conference. After returning home, exactly one week passed before we had to decide if we would travel to his sister’s funeral 800 miles away.
At first the question seemed to be, to travel or not to travel to the funeral. He had had considerable trouble adjusting after the respite care. Would he experience another decline if we traveled to the funeral? Suddenly I realized I had to reframe the situation. It wasn’t an either / or question. My son in Denver offered to take a week vacation, meet us in Chicago and help me with his dad. Within a day, I had made all the reservations. Planning a day buffer on each side of our airline reservations worked well because we did encounter some really bad weather. Taking Bill’s wheelchair was a godsend. Despite wanting to go to the funeral, it was physically and emotionally demanding for him.
But, from the moment we arrived at the funeral home, I knew being there was the right thing. Bill was embraced by family he had not seen in years. Throughout the day of visitation and funeral, he frequently asked, “May I please go up to see Joy?”. He was given the time to say good-bye and start to find closure. He asked to return to the cemetery and visit his sister’s grave, next to his parents. It was a journey that I am so grateful he did not miss out on. While there, our son, Bill and I were able to visit many of his favorite childhood places (the beach, his town, …) and shared some wonderful meals together while reminiscing. And, I can’t say enough about the stellar customer service and care Bill received from Southwest airlines.
Lesson learned: Don’t let the diagnosis of dementia stop you. Only you know the significance of a trip or event for your loved one. With serious consideration, proper planning and loving support, your loved one can still stay fully engaged in their life.
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