Peter Rosenberger, author of the book Hope for the caregiver: words of encouragement to strengthen your spirit says, “If you love someone, you’ll be a caretaker. If you live long enough, you’ll need one.” The advice in this article is an effort to support a caregiver, often in the baby boomer generation who is in the stage of witnessing and helping with the decline and death of their parents.
Because no two personalities or stories are the same, dealing with an aging parent is a unique experience. However, there are some basic principles that can be helpful as you navigate a similar journey. Perhaps the list resonates with you and you can incorporate these principles into your own situation.
Accept what is. Invest less in the ideal way to age and what it should look like and practice a greater acceptance of reality. Avoid the tendency to judge and blame, because it does not change the situation. Let the parents be as they are now. It’s their journey, not yours.
Ask about your parents’ wishes early. If your parents are still independent, ask them if they intended to move to a senior community. Do they want to stay home with home care or in-house help? What are your hopes and expectations? Do they want life-sustaining care, limited medical care, or comfort care? Join a conversation to discover your wishes and review questions as your health changes.
Listen to what your loved one really needs. Instead of doing what you think they need to do, double check your parents’ wishes if they can communicate. There may be a large gap in perceived needs. Moving forward without verifying what your loved one wants can cause additional hardship for everyone. By talking to your parents, you can avoid the need to back down or apologize later when their wishes collide with your uncontrolled actions.
Listens. Deep and compassionate listening can help alleviate suffering. In a conversation, if you don’t know what to say, just listen and be with them. If persistence or inappropriate verbalization comes up, it may be wise to change the subject or leave the room.
Put the documents in order. Does your father have a standard or living will, advance directives, end-of-life medical wishes, health care proxies, medical power of attorney? Where are your documents? Do you have copies? Have you also created these items for yourself?
Prepare for death. Does your father wish to be buried or cremated? What other end-of-life decisions can be handled or discussed now? Do you have useful phone contact information to notify professionals as well as family and friends when death occurs? Do you have this matter prepared for you too?
Create lists. Compile lists of bank accounts, financial institutions and investments, advisors, doctors, medications, allergies, and other important people and matters that will come in handy when the need arises. Update these lists annually or whenever changes occur for you and your parents, and keep them in a place where you can access them and others can easily find them.
Remember that little things add up. Sometimes the little things mean more to your parents than you think. Showing your loved one a picture they might like, massaging a sore spot, reading to them, or bringing their favorite food can make a difference, even if it seems like a small gesture to you.
Gather support. Create a network of neighbors, friends, family, and agencies that can work together to care for a parent. Communicate within the group to keep everyone up to date and aware of current and/or anticipated changes and needs. Contact agencies like hospice when you need more help.
When reporting to family and friends, state what is going well first. Observing, focusing on, and sharing what works can buffer less than optimal news that comes later. Look for good news to share.
Create memory and scrapbook books. Compile photos, recipes and special stories into a book that can be shared and enjoyed now and as a keepsake for after death. Discard the collection to honor the life and legacy of your parents. Use professionals to help you if your time is limited.
Write love letters. Encourage or help your parents write love letters to the loved ones in their lives. These letters can be for your children, grandchildren or friends who would like to say a few kind words, expressing what they mean to them. These cards can heal and leave a special and lasting legacy to those left behind at the time of death. Consider writing your letters now too.
Practice giving and receiving. Your father may be painfully aware that you are giving more than he can reciprocate. This imbalance can be a heavy burden for them. Anything he can do to encourage a better balance between giving and receiving can help both of you.
Keep limits. You still have your own life to live and other roles to play. Sometimes you will have to say “no” or “not now” to maintain balance and health in your life. You may need to take back power that might be disappearing by asserting your needs as well. Give yourself permission to say no sometimes and stick with it.
Let go of the guilt. Forgive yourself and forgive your parents. They are both doing the best they can under difficult circumstances. Be kind to yourself, nurture yourself, and ask for help to support you through this phase of life.
Remember to breathe. Deep breathing will calm you when you feel fearful or anxious. Place your hand on your lower abdomen and count to four as you inhale slowly and watch your hand rise. Then to another count of four, slowly exhale all the air completely. Repeat several times.
Find some humor. Laughter will help relieve stress and worry. If you can’t laugh right now, read a funny book or watch a movie later to relax. Tune in to your favorite comedian. Ellen DeGeneres often creates a laugh. She said, “My grandmother started walking five miles a day when she was sixty. She is now ninety-seven, and we don’t know where the hell she is.”
Play a game or read to your parents. Play a game of cards or checkers to pass the time and stimulate the mind. Read a book you like or one of your old favorites to your parents. If your ear and mind can appreciate it, invest in audiobooks that can be played when you’re not around.
Remember to take it one day at a time. Worrying about tomorrow does not help you live in peace today. Have plans to navigate future contingencies and then do your best to think only of what can be done today and let tomorrow come as it will.
See the situation as an opportunity for spiritual growth. Instead of focusing solely on the ordeal or just the prospect of loss, explore the spiritual aspect of the events that unfold.
Please note that there may be frequent ups and downs per week, day or hour. Avoid catastrophic or hopeful poles of thinking that can drain your energy and lead you to false conclusions. Prepare for the ups and downs and be patient as you progress through the stages.
Wait before replying. Often you will need to pause before responding to avoid knee jerk reactions or regrets. Maybe I’ll go and get a drink of water before I answer. If tension is running high, consider taking a walk to blow off some steam, giving yourself even more time to compose your thoughts and words.
Find healthy stress relief. Your body can build up stress on your muscles, creating pain, headaches, and back pain. Consider scheduling a massage, acupuncture, or chiropractic appointment. Avoid the accumulation of ailments with treatments that align, balance and replenish your body.
Exit visits thoughtfully. Since you never know if your loved one could die suddenly, take advantage of the opportunities to express love and heartfelt farewells in each game.
And finally, allow yourself and your parents to be imperfect. Even for an organized person, decline and death rarely proceed perfectly according to plan. And there may be no plan at all if the death is sudden or there was a refusal to prepare. Unexpected things happen. So back to the first tip: accept what is.
These tips were derived from a chapter in the book A Chance to Say Goodbye: Reflections on the Loss of a Father. The intent of the book is to provide support and guidance to caregivers and adult children of an older person.