This is Part 2 of our blog post on Caregiver Burden. Consider reading the previous blog post to learn more about Identifying Caregiver Burden before reading this post.
This post will discuss some possible strategies that may help with specific issues we identified that can characterize caregiver burden. These suggestions will NOT work for everyone, but they may support or lead you to solutions that work for you.
The best initial approach after reading this blog is still to discuss these issues with a trusted resource: a geriatrician, primary care provider, pastor, friend, or others, to find what works for you as an individual.
To organize these, I will use the same list of conditions discussed in our last post, providing some possible solutions to these issues:
Your sleep is disturbed.
Try keeping your loved ones awake during the day, engaging them in activities that can occupy them. Limit naps too-short naps, <1hr per day if possible.
Needs for sleep change with age and health conditions. Set a sleep schedule and consider putting your loved one to bed later, such as 10 or 11 o clock, to sleep in longer during the morning. This can allow you a little extra alone time to prepare for your day in the morning.
Try to take a nap when your loved one is resting. It may seem like a good time to "get caught up" on chores and tasks, but it may be better to disconnect and relax purposefully.
Ask your loved one's medical provider about pharmacologic approaches to help with sleep, prioritizing options like melatonin, which are safer and less likely to have side effects. Some over-the-counter sleep aids can cause worsening behaviors.
Don't bathe your loved one within the 2 hours before bed. This can be activating for some people and interfere with sleep patterns.
Try other aspects of "sleep hygiene"
Caregiving requires excess time or energy to perform.
Write down an inventory of what caregiving responsibilities you have right now, i.e., hygiene care, doctor's visits, cooking responsibilities, etc. See if you have helpers in your life to whom you can delegate one or more of these tasks, even if the task is small. Small changes can lessen your load.
Talk to your loved one's primary care provider about consolidating specialist visits to the same day or, if appropriate, see if they still need those follow-ups depending on their specific medical needs. If still required, ask about virtual visit options to eliminate the need for your loved one to have to leave the house for their visit.
Try to coordinate picking up ALL of your loved one's medications on the same day or arranging for medication delivery. Keep an accurate list of any medication changes to coordinate this with your local pharmacy. Many have daily packing options to simplify managing medications and refills.
Arrange delivery of groceries or other services that eliminate the need to split your time with caregiving.
Caregiving is a physical strain on your body.
Talk to your loved one's primary care provider about doing an occupational therapy referral, depending on their needs. There are also sometimes options for you to receive training on proper techniques for caregiving that occupational and physical therapy can provide.
If your loved one can still follow commands, you can ask for physical therapy to help them maintain their gait and balance.
Medicare may cover assistive devices like Hoyer lifts to help you safely give care without putting yourself or your loved one at risk.
Some caregiving tasks can be modified as your loved one progresses. For example, you may want to limit more complex functions like showering to 1-2 times a week if it is taxing.
Lastly, if you are physically unable and they have come to require more care than you can safely provide, it may be reasonable to consider placement in a facility. A nursing case manager can help with arranging this.
Caregiving has limited your social life.
Consider seeking respite care, which is sometimes offered by local organizations. Through this, you may be able to arrange time away for a few hours while someone watches your loved one. If they are enrolled in hospice, respite services are available as part of routine care.
Caregiving disrupts your routines.
Try to organize your caregiving role and delegate tasks to incorporate and maintain your daily routines.
Prioritize routines that help maintain your physical health and wellness.
Sometimes, you may need to fit your routine to your loved one's needs.
Caregiving has caused you to change your employment, vacations, or other plans.
While situational based on your specific occupation and responsibilities, if financially feasible, you can ask to fill out FMLA to protect your employment during periods of extensive caregiving needs.
Some Assisted Living Facilities may house your loved one for respite care for a few weeks for vacation needs.
If your loved one is overall stable to be left overnight but may just need a little extra monitoring, there are private nursing agencies that can check in on your loved one while you are away.
You have had to split your time caring for other family members or dependents.
This is another situational need and may be very difficult to control. Delegating tasks and finding support is critical to maintaining balance. For each individual you are caring for, take an inventory of specific caregiving tasks, and determine what you can delegate to lighten your load.
Local Adult Day programs or PACE programs can help when you need to be with your other dependent during certain hours of the day.
Your loved one has certain behaviors that make taking care of them more difficult.
Read the GeriAcademy blog post on behaviors to learn better communication skills. Readjusting your approach can sometimes help.
Your loved one may need medication adjustment due to disease progression.
Look for potential triggers and associations to the behaviors, i.e., is there a particular noise or activity that seems to trigger the behavior? If so, can it be altered?
Try not to take it personally! Your loved one may be scared and no longer have the ability to communicate their feelings and needs. They may be tired and not able to tell you so. Stay calm and realize that this is part of their disease and not a reflection of you as a person or caregiver.
Your loved one has had substantial changes from their former self.
Dementia is a long, slow, and arduous disease. Though your loved one is still alive in the present, you are likely mourning the person they were before. Through these changes, try to stay present in the moment. Find a local Caregiver support group, reconnect with trusted friends, or reach out to a trusted medical professional to help you find the help you need.
Caregiving causes financial strains.
There is financial support for caregivers through Medicaid if you qualify for this in your state. In some states, informal or family caregivers may be eligible for monetary compensation. Discuss options with your local Department of Social Services or local Department of Aging.
If appropriate, loved ones with severe dementia may qualify for Hospice Care, an often underutilized Medicare benefit. Services include nursing support, respite care, medical equipment, medications, spiritual, and bereavement.
You easily become overwhelmed with caregiving.
Sometimes as a caregiver, you may need a reset. What is your reset technique? Human beings have natural ways of relieving stress, and sometimes crying or "venting" frustration over situations can help you feel better in the moment.
Consider a daily practice of simple mindfulness techniques like deep breathing, progressive relaxation, meditation, or others that can help.
Free smartphone apps are available to help reinforce positive thinking and behaviors.
Start each day with positive intentions and affirmations for your role as a caregiver. In the morning, write down your affirmations, for example, "I love (loved one), I will stay calm today, I will accept…."
As above, look for local support groups. Reach out to the Alzheimer's association about local resources in your community..
Additionally, the American Academy of Family Physicians (AAFP) has a free online "Neighborhood Navigator" that lists resources on Senior care that may help you locate support in your area.
I hope this blog post was helpful. For more information on aging-related topics, check out other blog posts on GeriAcademy.
Post By, Dr. John Kriese DO, MSPH