Helpful Hints

Top Ten Tips for Family Caregivers

Over many years of leading Adults with Aging Parents support groups, I've been fortunate to meet some amazing family caregivers. They have generously offered these suggestions.
  1. Take care of yourself first
    Taking care of yourself actually makes it easier for you to be a loving caregiver. Even a simple act can replenish you. I know how easy it is to be driven by guilt and resentment. There are many ways to practice self care. It can be as simple as taking a short walk before or after you visit your parent.
  2. Ask for help before you need it
    If we wait till a crisis to get help, it's harder for us to ask and to receive. Think about how good you feel when you are able to help someone else. By asking for help, you give others this same wonderful opportunity. The Share the Care model was originally developed by friends who came together to help care for another friend who was dying. It offers a system that honors the person who needs care as well as those who offer care. Visit their website at for more information.
  3. Talk to other caregivers
    Talk to friends, family members. Attend a caregiver support group. Check out online chat rooms for caregivers. Once you start talking about your own situation, you're bound to discover that many of your peers are dealing with similar issues. Your best resource for problem solving, including in home help, is usually your friends and coworkers!
  4. Laugh
    Being able to laugh at your situation helps you to step back, gain perspective. and makes it possible for your parent to do the same. I always think about the son who had to help his elderly mother bathe. They were both quite awkward and embarrassed by this but used laughter and joking to turn it into something silly and fun.
  5. Practice forgiveness
    There are so many opportunities for forgiveness: with siblings who don't do enough, with parents who can't give you what you long for, for yourself for being a fallible human being. It's common for only one adult child to take on the daily responsibility of being a family caregiver. This can easily lead to resentment that damages family relationships. Who can help you let go of your anger and resentment?
  6. Know when to listen and when to act
    When you stop and listen to what your parent really is saying and to what you really feel, you are more likely to know what action is truly needed. I remember visiting my parents after my mother had been moved to a nursing home. I turned my own sorrow and anxiety into a driving force to clean and "redecorate" my parents' home. Of course, this action didn't help anyone. It exhausted me, my dad felt invaded and resentful and it took time away from me doing something that was truly helpful, just sitting with my dad and listening to him.
  7. Accept your limitations
    You can't do it all. No one can. Recognize what is most important for you to do and what can be delegated or dropped. I once met with a couple who were caring for the wife's parents. The parents lived on a large property in a rural area and were used to heating with wood which the dad had cut and split himself. When the couple finally spoke up and said they couldn't maintain the property or provide the wood in the same way that dad had, the family was finally able to have a conversation about what choices lay ahead for the parents. Hard as this was, it led to a solution that improved everyone's quality of life.
  8. Nurture your other relationships
    Your other relationships will be there after your parent is gone. Making time for the important people in your life right now can add balance to your life. It can be wrenching to feel caught between the needs of your parent and the needs of your spouse or partner but it doesn't have to be an either-or situation. Parents of young children know that they can't ignore their own relationship in the face of the demands of parenting. In the same way, as adult caregivers, we want to have an intact life once our parents have died.
  9. Mourn what is lost
    Recognize the loss of your parent to dementia, the loss of your role as daughter or son, the loss of your free time. Working with clergy, with other caregivers in a support group, or with a therapist can help you mourn your losses so you can cherish the present.
  10. Remember that this too shall pass
    I love this suggestion from someone who attended one of my groups. It's so easy for us to get caught up in the moment, to believe that whatever is happening right now is the way it will always be. Create some ways to regularly remind yourself of the bigger picture. Change is the one thing we can always count on.

Previous Hints:

Talking About the Hard Stuff

If you are caring for an elderly parent or relative, it's important to know whether an Advance Directive exists and who is named as the Durable Power of Attorney for Healthcare. Whether or not a document has already been drawn up, your elder can benefit from a review of her wishes and a chance to share her questions and concerns.
In the course of my work as a geriatric and medical social worker, I've found that most people don't want to talk about the dying process or end of life concerns. These conversations require courage and finesse as we dive into the world of disability and death. Talking about end of life requires us to acknowledge our mortality, grapple with our core beliefs and values, and engage in an honest and heartfelt conversation with our loved ones.
There are many tools available that can help clarify our wishes. The most important tool though, is to approach this subject with an open heart and a curious mind. This is not a morbid conversation but rather a loving one that can provide a sense of ease and lower any anxiety that might exist.
There are a number of tools that can help structure the conversation and provide a legal document:
www.midbio.orgThe Midwest Bioethics Center has a workbook called Caring Conversations. This workbook provides a social ritual that helps loved ones plan for the end of life.
www.agingwithdignity.orgThis living will document addresses personal, emotional and spiritual needs as well as medical wishes. It is a valid Durable Power of Attorney form in many states.
www.codaaliance.orgThe Go Wish cards are an easy to use tool for considering what's important to you when you become seriously ill.

The primary care doctor can help complete a POLST form (Physician Orders for Life Sustaining Treatment). This two-sided bright pink document can be hung on the refrigerator. When emergency medical personnel arrive at the home, they will check there and be able to follow the wishes of your loved one. While a POLST form can contain a Do Not Resuscitate order, other advance directives do not.

An old friend recently asked me if I would be willing to be her Durable Power of Attorney (DPA) for Health Care. I was honored that she asked and glad that she is ready to think about this important subject. Whether you ask your spouse, sibling, adult child or a close friend to be your DPA, it is important that you thoroughly consider and communicate your wishes. Your DPA must be someone who is willing to follow your wishes. Sometimes the people closest to us may not be able to support our wishes. Sometimes our friends or family members themselves may not be in agreement. In these situations it is helpful to use the services of your attorney, doctor or a social worker who can facilitate the conversation and provide accurate information about the consequences of various medical options.

As an Elder Care Consultant, I am available to help facilitate these discussions.

Be Open to Change

After Mom died, my father moved to the small town where I was now living with my new husband. I had such mixed feelings when Dad announced this plan. On the one hand, he was my only remaining parent and I knew it would be much easier to help him if he weren’t 2000 miles away. On the other hand, we had not had an easy relationship and I was afraid that we would spend his final years being mutually critical, defensive and irritable.

What a surprise to discover that our relationship could change and that the time we had together at the end of his life healed old wounds and gave us an emotional intimacy I could never have imagined.

Not every difficult parent is able to change, but when we hold onto our old ideas of who our parents are, we close the door on the possibility of change.

If you find yourself as the caregiver to a difficult parent, I suggest that you imagine that it might be possible for your relationship to change. This approach involves an acceptance of the way things are as well as an openness to change. Since you really can only change yourself, start there.

Here's a book that's a great resource:
Coping with Your Difficult Older Parent, a Guide for Stressed-Out Children
by Grace Lebow & Barbara Kane with Irwin Lebow