Experiences of Dementia Caregivers
The experiences of dementia caregivers are varied. Some caregivers find caring for loved ones with memory loss fulfilling. Others find the experience draining to the degree that some caregivers say it’s worse than death.
Caregiving relationships can be positively or negatively impacted by caregivers’ access to information, gaining knowledge, and receiving family support. In this episode, I will share two stories from my professional experience as a care manager, court-appointed guardian, and power of attorney for my clients diagnosed with dementia or Alzheimer’s disease.
The stories will provide an example of the various ways that caregivers and families choose to receive and manage a dementia diagnosis and other decisions that must be made along the way. I will also share information about the economic and social aspects, challenging family interactions, and how to work through emotional decisions.
How Family Caregivers Respond to a Dementia Diagnosis
There are two scenarios caregivers often pursue when receiving a dementia diagnosis.
1 – The caregiver and the person with the memory loss diagnosis want to understand the disease and work together to make the best of it by planning ahead
2 – Caregivers and families are unwilling to talk about the diagnosis because they believe the diagnosed person will not want to hear the information or will not accept the diagnosis.
Either decision can be impacted by the emotional stress of the caregiver and diagnosed person. Taking a straightforward path to accepting the diagnosis makes some caregivers and care receivers feel that they have more control. Working together can be a more constructive way to respond to a difficult diagnosis.
Choosing not to discuss the dementia diagnosis to reduce emotional stress between the caregiver and the care receiver can seem like an easier path; however, it can pose problems as the diagnosis advances.
In a third scenario, memory loss may have been going on for a long time without a diagnosis that a lengthy explanation of the diagnosis would be pointless. The person with dementia will forget the explanation in seconds.
Let me share two examples of how caregivers can work through a diagnosis. In the first scenario, the person diagnosed is aware of being forgetful. In the second scenario, the diagnosed person may be aware of the diagnosis but does not want to discuss the diagnosis. When the word Alzheimer’s was mentioned, the response was anger and disbelief, “I do not have Alzheimer’s.”
Unsure whether a loved one has dementia, check out The Caring Generation Podcast
Episode 11, Signs of Dementia Checklist.
Worse Than Dead | Dementia Caregiver Experiences
To watch the video, click the red arrow in the photo below.
Watch More Videos About Caregiving, Aging, and Health on Pamela’s YouTube Channel
Scenario 1 – Accept the diagnosis
I was appointed power of attorney and then guardian for an elderly woman who was never married and had no children. My involvement resulted from the police and Adult Protective Services receiving a report from her bank that she was not managing her money well and that strangers were bringing her to the bank. For the sake of simplicity, we will call this woman June.
Other concerns included
- A car accident
- Becoming lost while driving with the police returning her home.
- A roofing company took advantage of June after a hail storm charging her a hefty sum for a poor quality repair.
- June’s basement flooded when she forgot to turn off a faucet in a utility sink near her washer and dryer. The repairs were not yet finished.
Meeting June
I initially visited June’s home with an adult protective service worker she knew and trusted. The three of us discussed how I could help June and reached an agreement with her to proceed.
In addition to the vehicle and home repair issues, June had difficulties opening her mail, paying bills, and managing her money. I contacted her niece, who lived in New York, to let her know about my involvement. My goal was to be transparent about my assistance so there would be no doubt about my intentions.
Coincidentally, June’s niece was caring for her mother, my client’s sister, who was diagnosed with Alzheimer’s. For the first project, June and I went through her mail, which was piled on her kitchen table with many late payment warnings and notices, and brought all payments up to date.
Difficulties with executive function
An early sign of memory loss is difficulty managing finances and maintaining order. This difficulty is associated with executive function, a cognitive skill that translates to the ability to manage everyday tasks.
Recognizing this difficulty is common in the experience of dementia caregivers. Executive function involves tasks like opening mail and paying bills, inventorying items in cabinets and making a grocery list, scheduling and keeping appointments, and starting and completing activities without becoming distracted and never returning to complete the task.
Difficulty with numbers and managing money can be another early sign of memory loss. In June’s case, I did not want to take control of her finances without a longer-term plan in place.
I retained an attorney who spoke to June about appointing a medical and financial power of attorney agent. The attorney made sure June understood what powers she would be granting. I became the medical POA, and a colleague from a separate company became her financial POA.
For more on why simple things become difficult for people with dementia, check out The
Caring Generation Podcast Episode 169.
Memory loss advances
A couple of months into our relationship, June received a cancellation notice from her long-term care insurance company due to a missed payment.
If you do not know what long-term care insurance is, it is a voluntary policy you can purchase through your employer or an independent long-term care insurance agent. The policy pays for care costs when you are older and need services not paid for by Medicare, like in-home caregivers or an assisted living community.
June had set up the policy through her employer and continued to pay the premiums after she retired until recently. I called the company and confirmed that I could reinstate the policy under two conditions.
- Making the payment
- Confirming a diagnosis of memory loss to substantiate why June missed her payment
The letter was timely and presented the perfect opportunity to speak to June about memory loss and seeking a diagnosis. June admitted to being forgetful and was frustrated with being unable to remember certain things.
The path to a diagnosis
She confirmed that she hadn’t seen a doctor in quite some time. I suggested that she see a doctor to confirm the reason for her forgetfulness so we could make a better plan.
This appointment with the doctor would allow me to have her long-term care insurance policy reinstated if memory loss was diagnosed.
June agreed to this next step. The conversation was difficult, but it succeeded because my approach was based on facts and observations instead of emotions.
Being more fact-based when discussing complex topics can improve the success and experiences of dementia caregivers. Balancing emotions with facts is a skill that can be learned as a family caregiver of a loved one with dementia..
Fortunately, June was an efficient, detail-oriented person who always kept up with her bills and personal matters. Because of her career in public health, she was well aware of the importance of seeing doctors and engaging in preventative health activities.
Throughout her life, she was physically active and enjoyed hiking. At age 84, she still walked two miles every morning.
As suspected, the doctor diagnosed her with mild cognitive impairment. I asked him to write a letter that was submitted to her long-term care insurance company to reinstate the policy.
Due to June’s diagnosis, I put the policy immediately in effect by hiring in-home caregivers to visit her for medication reminders and meal preparation and to walk with her to make sure she was safe and did not become lost.
The next discussion
The next discussion was about June driving her car. Fortunately, hiring the caregivers limited her interest in driving. She was glad to have the caregivers drive her around because she was worried about getting into another accident or becoming lost.
In the experiences of dementia caregivers, a discussion about giving up the car keys is never easy. A vehicle represents independence.
While June was practical and agreed that her car should be sold, many of my other clients were in complete denial. I would hear statements like, “I learned to drive when I was 14 and living on a farm. I’m not about to stop now,” or “I drive as good as I have always driven.”
Unfortunately, there was usually evidence to the contrary: mailboxes driven over while backing out of the driveway, damage to a car and the garage door, and sometimes damage to the interior of a garage.
Because these discussions were sequential and June recognized that she had memory loss, my ongoing relationship with her progressed nicely. We developed a trusting relationship where we could talk about anything, even the difficult subject of moving her out of her home and into a memory care community.
She was delightful. I was blessed to be in her life for almost ten years before she passed away.
As a dementia caregiver, there are benefits to creating a long term plan not only to identify important discussions but to identify actions to be taken when care needs change.
Scenario 2 Denial of a Memory Loss Diagnosis
This is a scenario where a client recognized that she had memory loss but was angry with anyone who mentioned the word Alzheimer’s. With these clients, my relationship was more direct than consultative like it was with June, who wanted to be involved.
Because I was a guardian for client number two, whom I will call Mary, I delivered unpleasant information. Fortunately, Mary often forgot the information I relayed, and her anger disappeared.
This situation can be difficult for family caregivers who want a loved one to participate in decision-making. Unfortunately, there are times when the caregiver, the legally responsible party, makes decisions and is accountable for the results.
While family members can become judgmental, it can be difficult to understand the safety risks if they are not involved regularly. Looking in from the outside is easier than being the person who has to make difficult decisions and implement them.
Such are the experiences of dementia caregivers for loved ones with advancing memory loss who are unable to comprehend the extent of the risks associated with a dementia diagnosis.
Having difficulty talking to a parent whose memory loss has advanced? Check out The Caring Generation Podcast
Episode 26 How to Talk to A Parent With Dementia.Decision-making
In this situation, two decisions had to be made: selling her car and moving her to memory care after a trial of caregivers coming into the home to see if having in-home care might be an option to delay moving. It was not.
Mary was advised that the conservator managing her money was selling her car because it was unsafe for her to drive. She did not take the information very well. Her car was in the garage one day, and the next day, when she was out shopping with a caregiver, the car was removed.
I shared with Mary that living in her home was no longer an option. It was not a safe situation due to her inability to care for herself. Even with caregivers, the house was a mess: dirty dishes and burned pans were in the sink upon their return, medications remained in med boxes, and her dog was not let out, resulting in a mess in her home.
I researched and identified a board and care home that would take her dog. The room had enough space for many of her favorite things, and with help from my staff, we made it look like her bedroom.
I told her once that she was moving. On the day of the move, I had a caregiver take her out all day. I met the movers who packed her belongings and went to the board and care to set up her room.
The caregiver brought her to her new home at the end of the day, where her dog waited for her. All questions about “why am I here” were responded to with “this is your home now.” Because she was a social person, it did not take her long to get acquainted with other residents, and she adjusted quickly.
Navigating Experiences of Dementia Caregivers
Navigating these two scenarios can be emotionally stressful for emotionally torn family caregivers, especially when family disagreements exist.
In these situations, consulting with an independent party who has navigated them can provide peace of mind to everyone in the family that making such a difficult situation may be best.
If you are a legally responsible caregiver, you must do what is best and reasonable regardless of other people’s opinions. However, establishing sound reasoning with the assistance of a caregiving expert and discussing this with siblings can create a path to maintain family relationships.
Economic and Social Experiences of Caregiving
Let’s talk about the economic and social experiences of caregivers. Many caregivers cut back on working hours or give up their jobs entirely to become full-time caregivers.
The reasoning may be that keeping mom or dad at home is less expensive than moving them out of the home to a care community. Some family members want to keep the family home in the family.
However, what is rarely considered is the present and future financial cost for the caregiver. Before you reduce work hours, give up a job, move in with a parent, or move a parent in with you, it is important to be blunt about the short and long-term economic impacts.
- How will you pay your bills and living expenses?
- Are you moving in with a parent?
- Is a parent moving in with you?
- Is it your intention that mom or dad’s income becomes yours and that a parent or parents financially support all of you?
- Have you run the numbers to determine whether this scenario is practical?
- How long will you be off work, and what is the value of this time?
- How easy will it be to get a job when you are ready to work again?
- Will you have and be able to pay for health insurance?
- How will you replace your lost retirement contributions and savings?
These are difficult but necessary questions that may change a decision about reducing or giving up work altogether.
Leaving a job reduces a caregiver’s social network. If you do not have friends outside of work, what will be your outlet to get away from caregiving activities and take a break? Do you have hobbies?
Caregivers often become as isolated and lonely as the care receiver. With dementia, a loved one cannot be left alone. While arranging to have someone come and sit with a parent is possible, many caregivers don’t do this until burnout is affecting their mental and physical health.
Looking for more tips on dealing with dementia? Check out The Caring Generation podcast
Episode 145 How to Deal With Dementia in a Parent.Emotional Experiences of Dementia Caregivers
Emotional strain is associated with caring for loved ones with dementia. Dementia care is not a short-term assignment.
Persons with dementia or Alzheimer’s can live for years—5, 10, 20, or more. The longer dementia goes on, the more care a spouse or aging parent will need.
If a caregiver has good family support and time off to socialize and take care of their health, this is the ideal scenario. Unfortunately, it is rare.
Most caregivers do it all themselves. Less than 15-20% seek help or education.
Education and knowledge are two factors that make caregiving more bearable. Caregivers who know more about what to expect and face fewer surprises feel more empowered and in control.
Caregiver Self-Neglect
Constant worry about the unknown can be a huge stressor. Because of uncertainty, worry, and the many tasks to be completed, caregivers neglect their health.
Caregivers suffer from chronic illnesses similar to the person they care for—heart disease, diabetes, breathing issues, physical injuries, or disabilities. They do not seek regular medical care. Many do not make time for exercise or other positive health habits.
The decision to stop working can affect access to health insurance and money to pay for care, negatively affecting a caregiver’s health. Additionally, few discussions are initiated about promoting healthy lifestyles for caregivers so they can continue to care for others.
A sick caregiver may not provide the best care for a loved one. So, while care at home may not be optimal, many caregivers view moving a loved one out of home to a care community as a personal failure. Caregivers feel guilty or bad for not being able to do a good job even when their health has been affected.
In most situations, caregivers have done all they can. They have been providing care for years and are wearing out due to the stress and experience of dementia care.
Behaviors and the Experiences of Dementia Caregivers
Then, let’s add the stress of behaviors to a dementia care situation. Many middle-aged adults under age 60 can have a form of dementia called behavioral variant frontotemporal dementia that has behavioral aspects in common with dementia without memory loss.
On this page is a video about this topic. Individuals with BVFTD who are often undiagnosed can be viewed as having mean behaviors or mental health problems. Most of the time, they do not experience extensive memory loss.
The challenge for caregivers is that BVFTD is very difficult to diagnose, so in this case, it’s up to the caregiver to document and make a plan of care for the caregiver and the person with extreme behaviors.
With a BVFTD diagnosis, it is doubtful a loved one will be cooperative. The behaviors associated with BVFTD include:
- Inappropriate social behavior
- A lack of apathy, not caring about anything or having an interest in anything, but their needs
- A lack of motivation
- The absence of empathy or sympathy for others, especially for their caregiver
- They may have obsessive or repetitive behaviors or be aggressive and angry.
These behaviors are draining and destructive for the caregiver. It can take years to receive a formal diagnosis for BVFTD.
These types of behavioral situations, in addition to all the other hands-on care that must eventually be provided, make many dementia caregivers say that they would be better dead.
If this is your situation, seek support, information, and education. Choose to be different. Make time for yourself and make yourself a priority.
Consult with a caregiver expert like myself, even if it is only for 30 minutes. Impartial discussion can help caregivers create a plan to care for themselves.
Additionally, caregivers can make plans to work themselves out of being a caregiver for a loved one who now needs more than the caregiver can provide.
Caregiving should be a positive experience. If the situation harms either the caregiver or the person diagnosed with an illness, it has become imbalanced, and it’s time to consider other options.
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