CARING FOR THE CAREGIVER
CARING FOR THE CAREGIVER
(Note: November is “Family Caregiving Month.” Caregivers should take a breath and a break; engage in positive thinking; and remind yourself that your loved one is still a human person with needs, uniqueness, and love. The National Institute of Aging has a new booklet: “Caring for a Person With Alzheimer’s Disease.” Go to NIA’s website and do a search for the title. Free pdf and/or paper copy.)
How should caregivers care for themselves? Sooner or later there is a burden of caregiving. Life is upended as the disease progresses. Our loved one increasingly needs special care and they can be difficult to deal with. Life is less fulfilling. Though we feel satisfaction from doing what is right, the burden can be sad, depressing, and tiring. As I characterized myself earlier, I was slow to learn what helps me survive. Luckily others told me what I was doing wrong and how to “survive” more functionally. I understand retrospectively that I was occupied with her care to my own detriment; I wanted her to be well cared for and to stay connected to me. And, I am sad to confess, it took an external force (specifically Covid-caused isolation) to untrack me from that level of time and involvement. Advice to myself of 3- 4 years ago would be: visit her and stay connected to her care, but do not make that the center of your life.
Well, here are a few central ideas about caring for ourselves, the caregivers:
1. Find the best medical support. If your loved one’s medical needs are effectively met, there is great relief. (More about meeting other needs in later blogs, by means of volunteer or paid visitor at home or through a facility they live in.) Consult with everyone who can advise, especially Physicians, Nurses, Social Workers, other experts, and with other caregivers in similar situations. Gerontologists, Neurologists, and Psychiatrists participated in Beverly’s diagnosis and treatment through our many years. As discussed previously (blog: The Dementia Whisperer), her current Physician has specialized and mastered management of these patients through working with thousands of dementia patients; he is also very caring about patients and their families. Note that the specific kinds of medical intervention are never settled once and for all time; circumstances change as the disease progresses. Keeping them at home is preferable, but this may become difficult, as it did for us (See first blog From Eternity to Here). Whether at home or in a facility, someone will need to know how they are functioning for the Physician to more effectively treat. In Beverly’s facility, her Physician regularly reviews the information provided by Nurses and others in order to make appropriate adjustments to her drugs, food, and other aspects of treatment. And we caregivers should deliberately develop a relationship with those who have extended contact with your loved one, whether visiting in your home or managing in a facility. They can be very wise about how the dementia patient is functioning as the disease progresses; and they have a more objective view.
2. Accept that unhappy lonely times are part of your life. And then work at creating positivity. A strategy for dealing with the issue is to have some time interacting with others in similar circumstances. The Alzheimer’s Association sponsors support groups and hopefully those will become live meetings as Covid finally settles down. I was able to get support through time with other family caregivers of residents at Beverly’s facility; we ate together, attended facility entertainment together, and shared tears and laughs.
Meditation can also be helpful, taking you away from negative thinking. And positive thinking can be a critical element of managing. The literature on “positive psychology” (Positive Psychology, Harvard Medical School) provides many avenues of positivity, such as: Reminding yourself of the positive aspects of your life. Talking to yourself about the people who support you and about the wonderful person you still have. On a daily basis, list aspects of your life that are happy or positive for you.
3. Remember the past. Your loved one was a key part of your past through your marriage or your childhood or friendship. It is important to remember who they were through those years. To say that you must deal with their present state and your current relationship seems obvious enough. Yet the person of your past together is still there. What were the times you had together? What trips did you take? What music, movies, television drew you together? How did you help each other through those difficult times? For me, memories of our first date, our wedding, the birth of our two children, times in Missouri and Arkansas, times on many trips (Hawaii, Europe, California, Canada) all rise in my mind. Every year she encouraged me to escape to the mountains for my annual backpacking trip. She was the mediator within her family. And music of nearly every genre was central to her life.
4. Find a new life. You should not leave your commitment to your loved one. But that cannot be your only life. Develop your social life outside of the caregiving activities. You need other people in your life. Develop the hobbies and interests that fit who you are or find new activities. Education, especially if it takes you outside of your confined world. Music lessons, art lesson, woodworking, antique collecting, cooking, endless possibilities. I have talked before about how music and hiking became lifesaving activities for me; my sweet dog who helps my mood every day. And those of us who are married to the dementia person may find that dating someone else becomes necessary. Don’t be judgmental about anyone who so acts. Finally, as our loved one and we face life’s end, we tend to move toward more spiritual/religious involvement. That can contribute greatly to our functioning.
5. Get others to help. You must involve others to get through these difficulties. You should ask for help—from family, from friends, and even from medical folks. Do not go it alone. Our children and relatives helped when Beverly was still at home. They continued to be involved after she moved into this facility. If I am away for a short trip, others visit her in my place. And I feel their support for me; so many times there is a sincere question: “How are YOU doing?” So many have reminded me to “’take care of yourself.” And numerous times there has been useful specific advice about taking time off and having a life.
6. Give yourself permission to… Take a trip. Go to a concert or play. Walk or hike. Golf. Ski. Exercise. Fish. Camp. Dance. Sing. Get a massage. Buy some new clothes. Do nothing for a spell. Meet new people. Forget about your loved one for awhile. Laugh about anything, including your own foibles.
7. Finally you can help your feelings about your loved one and yourself by a consistent awareness that they are still a human, someone with needs and loves, someone with a unique personality, and someone experiencing the most difficult time of their life. They are never just “dementia.” In some ways, I never lost my grasp of who Beverly is. She retained the personality I had known for many years. But there was a muddling of her nature as she became a person who could not remember, could not think straight, etc. I have become convinced that her anger, anxiety, and sadness resulted very much from her awareness of her loss of functions. Yes, the structure of the brain is deteriorating. But until late in dementia, they fully know that they are deteriorating. This is the highly impactful psychological aspect of developing dementia. I was slow to learn about her awareness of her losses, in part because Beverly did not discuss that with me. Later I learned that she did discuss these feelings with others, including our children. The frustration of knowing how much they have lost and how it will continue worsening must produce continuing anger, anxiety, sadness, and depression for them. And that seems to partially explain behaviors, including irritability, angry outbursts, even aggression by them. This understanding of their plight is another indicator of their humanity.
Remember that they are still a human person with a special personality. Your loved one is still unique, with attributes and interests that were there before dementia and continue to this day. Their life has been drastically changed and they know it; that is terrible for them, too. Your history together matters—for you and for them.
Finally, all of this is not to say that our thought and feelings can always be under control. My life is, well, sometimes depressing and there are moments of anxiety about the future. Still we can greatly reduce these feelings and manage the stressfulness of these circumstances. Her dementia has gone on now for 16 years since diagnosis and over 4 years since we started living separately. When I visit her, I am sometimes on the edge of tears while trying to maintain a happy, fun style with her. Take care of yourself so joy and calm can prevail. Through it all, we must care for ourselves, not just our loved one.