In this blog article, we explore the emotional journey of dementia caregiving and provide valuable insights on how to navigate and accept the complicated and distressing feelings that arise. Discover the importance of acknowledging and embracing your emotions as a family caregiver, and find solace in the shared experiences of others.
Regardless of how you have found yourself as a caregiver for someone with memory loss, you likely face some kind of complicated situation. Families being what they are, you may well have hurts, hang-ups, or bad history with the person you are now unexpectedly called to care for. Or, maybe you have siblings or other relatives who expect you to carry all of the caregiving weight. Maybe there are financial or logistical challenges.
A loved one needs more care than a single person can provide.
The reality becomes that a loved one will need more care than a single person can provide. You may be working and caring for children; you yourself may be retired.
Dementia is not a “normal” part of aging. So, the likelihood that someone would suddenly be faced with significant, ever-increasing care for another adult often is not part of our long-term plans. Moving into a role to care for an adult with progressive dementia presents changes not unlike a parent whose lifestyle is changing because of the birth of a child.
In addition to the sudden loss of agency for many caregivers (and their loved ones as well) the US and many other nations lack an infrastructure to support people with memory loss. Parents with children frequently have a responsive healthcare system, parenting resources, day care centers and schools, and playgrounds, for example. Most of this structure is missing for families managing dementia, contributing to any feelings of overwhelm or isolation.
Whatever the challenge, caregivers must manage the emotional and logistical sides of memory loss. This series will allow you to understand what to expect along the way.
Profiles in Caring
Becky is in her late 50’s and is caring for her 80-year-old mother. Her spouse is also disabled- The family is managing off SSDI and her mom’s social security. Becky does not know exactly the medical issues her mom faces. She knows her condition has deteriorated after a stroke. She is now non-verbal and having more difficulty getting out of bed, going to the bathroom, or walking around. Becky’s relationship with her mom has long been fraught with emotional abuse. Becky seldom felt loved or cared for and resents the strain caring for her mother has placed on her already difficult life.
The relationship between caregiver and care recipient are rarely simple.
If you have had any kind of contentious relationship with the person you are now caring for, I recommend spending some time reflecting on what you want for yourself during this period of caregiving. If your patient caused you pain, you must face whether you want to prolong the bitterness and control that person has levied over you.
Some are familiar with a continuum between pity and compassion (1).
· Pity- I am glad I am not you.
· Sympathy- I feel sorry for you
· Empathy- I can see myself in your situation, and I am concerned for you.
· Compassion- I intentionally want to help you.
There is a newer train of thought that expands these concepts through the opposite side of emotions. This full range of emotions from aggression to compassion more completely allows a caregiver to recognize their own feelings.
· Apathy- I don’t feel one way or another about you.
· Antipathy- I dislike you.
· Animosity- I strongly, strongly dislike you.
· Hostility- I dislike you and could hurt you (or want to see you hurt).
· Aggression- Because I dislike you, I have taken action to hurt/oppose you.
Sometimes caregivers find themselves on the less compassionate side of this continuum right from the start. Other times, a caregiver develops caregiver fatigue and may experience apathy, animosity, or aggression toward their loved one. If you are in this situation, ask yourself these things:
Is there an emergency or unsafe situation?
What's Going On? | Resources to Help |
You are in distress and concerned about your ability to care for your loved on; you need advice or a listening ear. | 855.227.3640 8:00am – 7:00pm Eastern Live virtual chat is available on the website. |
You are concerned your loved one may be in danger and it is outside of your ability or knowledge to overcome. | Call Police of 9-1-1 immediately if someone you know is in immediate, life-threatening danger. To find the Adult Protective Services division of your state or local area, you may search on the National Adult Protective Services Association webpage. Or, by phone 1-800-677-1116. |
Are you struggling with emotions and feelings related to caregiving?
What's Going On? | Resources to Help |
You are not sure you are emotionally prepared or strong enough to provide long-term support for a loved one with dementia. | Find a Caregiver Support Group near you or online. Caregiver Support Groups help in many ways, even if you listen more than talk.
Find support groups on-line or in person, as well as other family resources from the Alzheimer’s Association. They maintain a directory of support groups and other services.
|
You recognize that your feelings are more of apathy, antipathy, animosity, hostility, or aggression. You are sad, overwhelmed, and burned out and need help learning whether you should be a caregiver and how to do so without losing yourself.
| Provide for your emotional needs. It is often helpful to work through these kinds of emotions with supportive help or therapy. I personally tried the online counseling program BetterHelp and found it to have thoughtful, qualified therapists. It is not free and is not covered by most medical insurers, but the fees are reasonable. Many employers have access to Employee Assistance Programs. These programs will cover the cost of therapy or may provide resources directly. Check with your company. This service is often provided as an add-on to other policies and employers or employees may not be aware that it exists. |
Becky, in our caregiver profile, sought help and solace from her local Caregiver Support Group. No one minimized her experience. They shared resources and Becky began to get additional help at home. In this case, talking about the struggle was the first step to improvement. Speak with a friend, family member, or support group leader about your struggles.
Always remember that you are not alone as a caregiver. Yes, there are many, many others who are going through this with you. But, caring for your loved one with dementia is not yours alone to carry. Please, check out a few resources and support groups. It could make all the difference. Like, comment, and share if this article was helpful. And, join my e-mail list for occasional updates.
From my tenacious heart to yours.
Reference
(1) E. Grunberg, N., & S. Barry, E. (2023). From Empathy to the Aggression–Compassion Continuum. IntechOpen. doi: 10.5772/intechopen.106516
Comments