Caregivers come in all ages, relationships and life histories.
Many times the caregiver of an aging person is the spouse. Naturally, children or grandchildren are supporting their family members who are caregiving but the main responsibility is on the spouse.
What we are seeing more and more is that spousal caregivers are getting burned out. They have been primary caregivers for many years as chronic diseases including Alzheimer’s or other dementias have dragged on. The person who needs care may have been slowly declining in functional abilities leaving the spouse with more and more tasks to complete including personal care and maybe even transferring or lifting.
More and more, the aging caregiver may not be physically able themselves to provide this care – – and maybe they are even growing less capable of meeting their own needs.
As chronic disease care can be required for many years, the spouse is also getting older and perhaps even weaker. Frustration also builds in spousal caregivers who just can’t handle the continuous demands, both physical and mental, of caregiving.
Statistics from the Family Caregiver Alliance
- 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia.
- An estimated 66% of caregivers are female. Research suggests that the number of male caregivers may be increasing and will continue to do so due to a variety of social demographic factors.
- According to the survey, older caregivers are more likely to care for a spouse or partner (25%).
- Many caregivers of older people are themselves growing older. Of those caring for someone aged 65+, the average age of a caregiver is 63 years with 1/3 of these caregivers reporting fair to poor health.
- Older caregivers who are 65+ provide 31 hours in an average week on caregiving.
- Alzheimer’s and dementia caregivers provide care on average one to four years more than caregivers caring for someone with an illness other than Alzheimer’s disease (43% vs. 33%). They are also more likely to be providing care for five years or longer (32% vs. 28%).
- 40% to 70% of family caregivers have clinically significant symptoms of depression with about a quarter to half of these caregivers meeting the diagnostic criteria for major depression.
Family Caregiver Burnout Stories
We have recently heard about several cases of family caregiver burnout that prompted this informational post.
In one case, we know of a male caregiver who has been caring for his wife for several years. She has dementia which is progressing toward the later advanced stages. She asks the same question all day long, can’t be taken out of the house anymore as her behaviors are hard to control, she needs assistance with all activities of daily living including toileting and feeding, and is a safety risk all day and night. She is basically wearing out her husband who is also aged. He must cook, clean, care for the house and yard, and struggles to keep his social relationships such as attending church.
This caregiver is basically at the end of his rope. Family members don’t live nearby and come to visit throughout the year but can’t provide much support on a day to day basis. This man is at risk for depression and even suicide as he faces each day with trepidation about how it will be caring for his wife.
Another story we heard from our community was a man who has been caring for his wife since her fall three years ago resulting in a closed head injury and advancing dementia. She is currently at the point where he can’t leave the house for a minute to cut his grass or grocery shop without the fear of her falling and he can’t physically get her in and out of the car to take her along. She requires more physical care than his aging body can do. He is definitely depressed and has been observed yelling at his beloved wife and may harm her in a moment of frustration. He doesn’t want to place her in a facility but has no family support. The few remaining family members bring him more trouble than help so he has maintained a distance from them. He is also at the end of his rope.
Where Can Burned-Out Caregivers Turn?
Many spouses find themselves in similar predicaments. Where can they turn?
Many have gotten support from home health, private in home care, church friends or neighbors who provide respite, meals from an agency, cleaning or yard work help for hire or other support that comes their way. Many can’t afford help and have no family members to fill the gaps or provide them with relief. Their burnout could put the one who needs care at risk for abuse or neglect.
Some spouses just can’t handle the emotional stress of the changes that appear in such diseases as dementia. The affected spouse is not the person they married. Their personality is altered, they may not remember them, they may have behavior that is hard to handle, and the well spouse may be embarrassed by the changes and may not be able to understand that it’s the disease not the person.
Unfortunately, changes should happen in how care is provided to prevent danger to either spouse. It is not uncommon for suicide, neglect or abuse to occur when caregivers become burned out.
Family Caregiver Burnout Warning Signs
- Is the caregiver tired all day every day? Are they having difficulty sleeping at night?
- Is there no good day?
- Is the spousal caregiver sad that all their hard work is not appreciated and it doesn’t feel like they are really helping anyone?
- Does the caregiver feel overwhelmed, ready to cry often, is getting ill themselves, or not wanting to eat anymore or maybe eating or drinking too much?
- Does the caregiver feel hopeless, useless, trapped or beyond caring to complete necessary duties? Are they beginning to stop doing things or isolating themselves more?
- Does the caregiver feel like their life is not worth living?
Coping Strategies for Caregivers
- Eat healthy meals.
- Set limits on what you are capable of doing and get help for the things you can’t do yourself. Don’t try to do it all!
- Get a full night’s sleep.
- Find moments throughout the day when you can relax and recharge yourself.
- Find someone to talk to about your feelings. Reach out for help.
- Get respite, time away from your duties even if it is only for an afternoon. Agencies and organizations, even your church, may be able to help you with respite.
- Get out of the house even if you have to find someone to fill in for you for 30 minutes.
- Don’t push your friends and family away, you need them and they don’t mind providing a shoulder to lean on.
- Don’t waste your effort on things you can’t control. Be aware of your own limits. Blame the disease not the person and realize that you can’t take the disease away but instead focus on what you can do to make it better.
- Join a support group and lean on others either in person or online.
- Don’t forget to laugh!
For those who have the support of family caregivers who can step in and help, we feel confident that they can avoid burnout. Many more are not as fortunate and are at risk for burnout. They are falling through the cracks and need our support to help them along the way and be alert to signs of oncoming danger.