Dementia Caregiver Challenges
Caregivers of persons with dementia, especially spouses who are on call 24 hours a day and 7 days a week, often experience worse health than the person with dementia. Adult children helping one aging parent care for the other often do not realize the toll that caregiving takes on their mother or father,r who is caring for their other parent.
Being a 24/7 caregiver can be an overwhelming and exhausting experience.
Simple things can become difficult for persons with dementia. Adult children caring for one or two parents with dementia experience extreme stress and multiple health problems. Based on my almost 25 years of experience, it is nearly impossible to understand the toll caring for a loved one with dementia can take unless you in a similar situation.
What It’s Like to Be an Early-Stage Versus a Late-Stage Dementia Caregiver
The experience of a caregiver of a person with dementia who can still manage daily tasks may fall into the category of early-stage dementia care. While spouses or elderly parents are still able to do most daily tasks, the progression of dementia can seem slow.
As a dementia caregiver begins doing more and progresses to providing 24 hours a day, 7 days a week, the experience of late-stage dementia caregiving may be more of a reality. Mid- to late-stage dementia caregivers cannot leave the person with dementia alone due to safety or other concerns.
There may be nights when the dementia caregiver and the person with dementia are awake all night. The person with dementia may exhibit behaviors, anxiety, or anger. Sometimes, the dementia caregiver may feel threatened or afraid of a person with dementia who has extreme behaviors.
Having a person with dementia who cannot care for their most basic needs, like going to the toilet, feeding, dressing, or even walking, can feel isolating and hopeless for a dementia caregiver.
Persons who are not caregivers can judge family caregivers because they have no idea the type, amount, or extent of the caregiver’s duties or responsibilities. Caregivers can judge other caregivers.
So it’s essential, even if you don’t understand what someone is going through, to be kind and considerate whether or not you are a caregiver or caring for yourself or another person.
Dementia is a Life-Changing Diagnosis
Becoming a dementia caregiver can be frightening. You spend your life with your partner, and then one day, one of you is diagnosed with one health condition, and then maybe another and another, and maybe dementia.
Maybe one spouse has a life-affecting illness like cancer, multiple sclerosis, or leukemia, and this person becomes the dementia caregiver. If you are a dementia caregiver who is an adult child, you may watch your aging parents go through these health experiences.
If you are married and not yet a caregiver, your dreams of a golden retirement after years of working hard, saving money, raising children, building a business, or pursuing personal interests can come to a crashing halt with a dementia diagnosis. Instead of planning for happy events, all you can think of is the adventures and activities now stolen from your life.
With good planning and practical discussions, spouses and family caregivers of persons with dementia can live happy and fulfilling lives.
Blended Family Dementia Care
Spouses caring for each other during a marriage who fall into the role of the primary caregiver later in life can have a lot of worries similar to their adult children who may be caregivers.
More worries add up for spouses who remarry and have biological children and stepchildren who are involved in their care. If you are a biological child in a remarriage or a stepchild in a remarriage, you know that navigating care relationships may not be easy.
There may be differences of opinion about care for a parent or a step-parent. Concerns may exist about one spouse’s money over another and what happens to the surviving spouse when the dementia spouse dies first.
These serious concerns can be emotionally and physically exhausting without family and outside support. If you are an adult child dementia caregiver, put yourself in the place of working through these experiences with your spouse or partner years down the road.
Balancing Dementia Care and Life
Let’s start by looking at the day-to-day experiences of what it’s like to be a dementia caregiver.
- If you are a healthy dementia caregiver still working, you may be juggling your job as a caregiver for the person with dementia with your paid job from 8 to 5. So there’s no time off and no days off work for you.
- Because there is so much to do, the dementia caregiver usually neglects their health and well-being.
While this type of commitment to work and caregiving can be sustainable for some time, eventually, the effects will manifest in health and other problems.
What does dementia caregiving look like?
Dementia caregiving looks like sleep deprivation, depression, social isolation, less physical activity, weight gain, stress eating, physical and mental exhaustion, and a lot of worry.
How do you feel when you don’t get a good night’s sleep? Imagine the effect on your mind and body when you rarely get a whole night’s rest. Persons with dementia can mix up their days and nights.
While dementia caregivers want their spouses and aging parents to do whatever it takes to feel better and be healthy, caregivers rarely take their advice. They feed their spouse or aging parent healthy food and then crave sugar or salty foods, alcohol, or substances to relieve caregiver stress.
Dementia caregivers make sure all of their loved one’s needs are met and neglect their own needs and self-care.
Why Spouse Caregivers Are Sick All the Time
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Stress accumulates over time for dementia caregivers and eventually affects health.
The Effect of Dementia Caregiving on Health
Dementia caregivers must be proactive about their health and well-being. This includes annual check-ups and health screenings. Numbers like high blood pressure, cholesterol, triglycerides, and blood sugar can rise and begin to cause cardiovascular issues. Heart problems can lead to other health diagnoses.
Because stress affects the brain, caregivers who feel uncertain about their situations can become forgetful and experience a greater number of health issues.
- Spouse caregivers of persons with dementia have a 15% higher rate of being diagnosed with dementia due to the length of time in a caregiving role and being in poorer physical health due to the stress of caregiving.
- The vocabularies of spouse caregivers of persons with dementia decline because they use less of their conversational skills. Short sentences and simple words replace complicated vocabulary that persons with dementia no longer understand.
- According to research from the Health and Retirement Study 2000 to 2014, 55% of spouses are solo caregivers.
- Only 36% of dementia spouse caregivers receive support from others, such as adult children, paid help, or other family members or friends.
Being a Dementia Caregiver Can Be A Lonely Job
Family caregivers – adult children and spouses of persons with dementia – tell me that family members and people disappear from their lives. Family and friends who used to call and visit don’t.
These disappearances shrink the circle of support around dementia caregivers.
As a dementia caregiver, I find it essential to extend and accept invitations to make time to get away with friends. Friendships take nurturing.
Meanwhile, caregiver-care-receiver relationships can become a one-way street, with the caregiver doing all the work. Relationships can rarely be sustained outside of caregiving if they only work one way.
The Importance of Maintaining Relationships
Maintaining relationships is one part of life for caregivers to consider. Because a caregiver’s world shrinks, it is vital to have a few constant contacts.
Even if you are a dementia caregiver and your friends love you, they may not want to talk about caregiving all of the time.
Think about a mother with a baby and how friendship relationships change. Mothers with children spend time with mothers with children – they no longer hang around with single friends or couples who don’t have children. Interests and lifestyles change.
So, as a caregiver, there are two paths.
- Establish relationships with other caregivers where all you talk about is caregiving.
- Maintain friendships outside of caregiving that bring you back to the real world with people with jobs, big vocabularies, and life experiences.
Relationship Support for the Sick Spouse
Maintaining relationships or outside contact can be more challenging for a sick spouse. With digital communication becoming more accessible, Zoom meetings can be a great option. As the dementia spouse, you can bring in volunteers, ask friends or members from your church to schedule visits.
In these situations, what the visitor gets from the relationship is less important than what they can give to a spouse with dementia. These visits can also be a time for the caregiver’s spouse to take some time off.
Family Relationships and Caregiving
Research confirms that parents with only stepchildren—meaning that one parent never had children— fare worse when they need care than parents who have biological children. When you think of relationships with parents and stepchildren, unless parents and stepchildren spend a significant amount of time together, there is no relationship or obligation on either side to provide support.
It takes around 400 hours to make a good friend or establish what might be a long-term relationship. Some parents and grown stepchildren may never spend this amount of time together in a lifetime unless they live under the same roof.
On the other hand, inheriting stepchildren later in life through remarriage can be a blessing when the parent and adult children have things in common and can appreciate each other for the person they are.
Unlike biological children, who may be expected to be the parent’s caregiver, these expectations are not as clearly defined for the role of stepchildren.
Spouses with blended families may need to be more proactive about independently planning for their care due to the likelihood of stepchildren not having expectations of providing care or stepchildren on both sides of the family not getting along.
So, look at the relationships in your family, whether biological or blended and begin having discussions long before care is needed. This way, you may be less likely to find yourself in a situation where you are a caregiver experiencing extreme burnout.
Dementia Care Planning
The dementia caregiver may die before the person with dementia. In a perfect world, married couples would make plans for life to go on after the first spouse dies. Spouses in remarriage may be more likely to be realistic about care discussions, especially if they remarry due to the life experience of a spouse’s passing.
Adult children who are dementia caregivers must also accept the likelihood that a parent simply, due to the age factor, if nothing else, will die before them. While these are not pleasant thoughts, having early conversations about planning for care and death can make caring relationships less stressful.
According to the Health and Retirement study, 30% of caregivers die before the person they care for. Specific to Alzheimer’s, 18% of spouses die before the spouse with dementia, according to the Health and Retirement study.
Worrying about the death of a spouse is bad for a caregiver’s health. Caregivers may also be concerned about how they will financially survive if a spouse passes away.
If you are in a spouse caregiver situation and money for care will be a problem, begin investigating Medicaid and the single-entry program in your state. There may be things you can do years in advance to ensure that you, as the surviving spouse, can manage financially after your spouse dies.
If you are an adult child caregiver watching your parent’s health decline as one parent cares for the other, offer your support. Talk about the stress of caregiving, health declines, and financial and legal matters.
Practical Considerations and Questions for Care Discussions
Everyone should create estate plans that include a power of attorney for health and medical, a living will, and a will or trust. Preparing these documents opens the door for family discussions about who will be the caregiver, where care will be received, and how to pay for care.
In marital situations, discussions can be held about a single spouse’s care consuming all of the marital assets, leaving the surviving spouse to live at the poverty level. These are realities that are not easy to discuss. Consider asking yourself these questions.
- While many family caregivers give up everything to the detriment of their well-being, should this be the expectation for all families and future generations?
- What if families regularly discuss and plan for future care needs that involve family but do not destroy family relationships or the caregiver’s health—whether a spouse or an adult child?
- What would these plans look like?
- What financial plans can be put in place to ensure either spouse who becomes a caregiver will have money for their care and the ability to go on with life after a spouse dies?
Dementia care can be highly demanding. If you or a loved one is diagnosed with early memory loss, this is the time to discuss the what-ifs of the disease’s progression and how to manage the stages of dementia care. When families come together instead of divide, relationships can be positive regardless of health and other challenges.
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