Q: MY DAD HAS HAD MULTIPLE SMALL STROKES OVER THE PAST THREE YEARS, AND MY MOM HAS BEEN TAKING CARE OF HIM AT HOME. SHE DOES A GREAT JOB, AND MY DAD IS DOING WELL. THEY BOTH WANT TO STAY IN THEIR HOME, AND MY MOM INSISTS SHE IS CAPABLE OF MANAGING EVERYTHING. WHEN WE VISITED A FEW WEEKS AGO, WE NOTICED MOM SLOWING DOWN A BIT. SHE LOOKED EXHAUSTED AND HAS STOPPED GOLFING BECAUSE SHE DOESN’T WANT TO LEAVE MY DAD ALONE. HOW CAN WE ENCOURAGE HER TO GET MORE HELP?
A: Taking care of the caregiver is an important job and often one that gets overlooked until something happens to alert those around them that there is a problem. Caregivers are often so entrenched in the day-to-day care that they do not see how it is impacting their life and overall health.
Staying in control is how caregivers get through each day, manage each task, and somehow keep all the plates spinning. When you ask a caregiver to accept help, it can feel like you are asking him or her to give up a piece of that control, and that can be a scary feeling. There is also an emotional element. Your mom wants to care for your dad and do a great job. If she accepts help, has she failed in some way?
What if your dad won’t accept the help or feels your mom has left him? These are the questions likely running through the mind of most caregivers, and they try to find the balance. The key is to help your mom remain in control by accepting help as a better way to manage the care that keeps the long game insight, not just the day-to-day. If she can focus on the needs that are likely to develop down the road, this can help her see that there is a need for a plan and to give herself permission to implement that plan and accept the help needed to make it happen.
For example, if their goal is to remain in the home and age in place, there may need to be some modifications made to increase safety (grab bars, rails, emergency alert systems), as well as respite or supplemental care in place, so that she gets a break and has helped as his care needs increase. It is equally important to consider what would happen if she had a significant change in health. Who would step in and care for your dad, if your mom was the one in the hospital? If you can encourage your parents to start having these conversations, it will open the door to identify resources and put added support in place.
You mentioned seeing signs that your mom is slowing down. It is important to look for and recognize signs of caregiver burnout. These can manifest in many different ways: mental, physical, spiritual, and social. Here are some things you might watch for:
- Changes in eating habits
- Increase or decrease in weight
- Changes in sleep patterns, insomnia
- Signs of exhaustion and low energy (physical and mental)
- Giving up social activities previously enjoyed
- Losing touch with close friends and family
- Increased aches and pains
- Headaches, lack of ability to concentrate
- Change in spiritual beliefs (loss of hope)
- Feeling helpless, irritable or angry over the caregiving situation
When you notice signs of caregiver burnout, it is time to take action. A family meeting may be in order or getting a professional involved to help assess the situation and recommend options. Remember that your mom may not recognize these signs, so you need to be compassionate in your approach. Many caregivers focus on others at their own expense. Your role is to help her feel empowered and embrace her role in a more productive way. Here are some suggestions to accomplish that:
- Help her identify what she likes the most and the least about caregiving and her daily tasks. Start with one thing on her least list, and solicit help in that area first. It may be someone coming in to bathe dad once a week, or someone to come in and do meal prep.
- Ask her to agree to lunch out with her friends, or a golf game, once a month. Set this up on a calendar and get a family member, friend or paid caregiver to be at the house with dad, so she will not have to worry. Once she has had a good experience, these outings could be increased.
Make sure she is seeing her physician routinely and doing basic preventive care. - Create a book of local resources, services, and providers she can call on as needed. Offer to help her explore these options and meet with them to get more information on what support they can offer.
- Encourage her to journal as a way to express her own feelings out in a way that feels safe and private.
- Discuss the benefits of some type of exercise or meditation to keep her physical and mental health in balance. Remind her that to be a sustainable caregiver, she must make intentional choices to care for herself. Introducing something new may feel overwhelming, so look for a family member or friend who can do this with her.
- Locate and attend a support group in your area, encourage her to do the same.
- Talk to a professional who can help her navigate both the day to day and the long game plan. There is a nationwide database available on www.aginglifecare.org
This caregiving journey your family is on can be very difficult. Understand that it is a process, and accepting help can be difficult. Change can cause fear, and you need to counter that with empowerment and planning. Take small steps to make for an easier journey for both you and your parents.