A Warning to Dementia Caregivers: 8 Dangers of Denial
When family caregivers are unrealistic about their loved one’s level of functioning and care needs, they put their loved ones at risk.
Here are eight dangers of denial, ideas about how to maintain a realistic outlook on your loved one’s care, and thoughts on helping your other family members do the same.
8 Risks of Denial
Last year we reviewed “A Gradual Disappearance,” by Elizabeth Lonseth, which was described as “a warm, personal and concise guide for people who have a loved one with Alzheimer’s disease or dementia.”
Lonseth is a seasoned caregiver uniquely qualified to write about caregiving and connect with other caregivers. Both of Lonseth’s parents and both of her parents-in-law faced dementia in their later years. Lonseth still oversees the care of her mother, who now lives in a group home specializing in memory care.
A main theme of “A Gradual Disappearance” is how important it is to have a realistic perspective about your loved one’s illness and his or her needs. Lonseth’s latest speaking engagements have focused exclusively on the issue of denial, including its risks and how to avoid it. We culled this list of eight dangers of denial from Lonseth’s speaking notes, which she generously shared with us.
1. Overdosing on Medication
“Refusing to accept that your loved one has Alzheimer’s or dementia can lead to bigger problems, like your parent overdosing on medications… My mother-in-law gave us a scare. We thought by getting a weekly pill dispenser, the kind with the days of the week, it would be easier for her to take her medications. My husband organized all the pills and explained it to her one morning. A few days later we noticed all the pills were gone. She seemed okay, so she probably threw them out. But we realized we had to disperse medications ourselves.”
“Not accepting that your loved one has declined to another level of care can be dangerous. Ignoring the fact that they need a walker can lead to a fall, resulting in broken bones, displaced joints, hospitalizations and the use of pain medication… Leaving them unsupervised could lead to accidents in the kitchen and bath, and even a fire. They could cut or burn themselves, leave the stove on, or eat certain foods in excess. My father-in-law would have eaten a full pound of butter in one sitting if we had let him.”
3. Family Conflict
“Denial on the part of a family member can cause major family conflict. The ones in denial create all kinds of frustration for the ones who are facing the disease. The children in denial don’t help out and the aware ones take on multiple burdens sometimes alone. Often the ones in denial accuse their siblings of ‘over reacting.’ The ones in denial don’t think additional care is needed and Mom or Dad can be retrained to make their own meals or dress themselves.”
4. Delaying Professional Help
“Often times a spouse is very aware that their husband or wife has memory disease but they don’t want anyone else knowing about it. They associate shame with the disease. They lovingly try and protect their spouse from the outside world and begin to hibernate. Maybe in the beginning stages a spouse can handle providing the needed care, but as it snowballs, it will become overwhelming. Caring for a loved one at home is draining physically, mentally and emotionally. But the memory patient has an added dimension that wears the caregiver down. The dimension of unreality. The confusion seems contagious at times as you care for them day after day. It becomes a psychological game as you try to catch up to which reality they are in at that moment. It can be like trying to care for a two year old, on steroids, in a large body.”
5. Missing Opportunities for Quality Time
“I was in denial with my father and I avoided visiting him as often as I used to. It was so painful seeing this brilliant geneticist no longer able to hold a long, intelligent conversation. His communication skills became that of a young child. So instead of visiting every month like I had been, I came every other month or every three… Deep in denial, I lost the chance to create special memories with my father.”
6. Financial Exploitation
When a family is in denial about their older loved one’s memory loss, they leave their loved one vulnerable to financial exploitation.
Lonseth provided this amusing but sobering example: “A few years ago at a book signing at my mother’s facility, a happy little lady who I had never seen before walked up to me. At first, I assumed she was part of the group of ladies from the surrounding neighborhood. She said she would like to purchase all of my books. I had about twenty copies of each of my fiction novels stacked on the table. ‘All of them?’ I asked. She insisted that she wanted all of them. She handed me her checkbook. ‘Will you make out the check for me?’ she asked. ‘I’ll sign it.'”
“…After some negotiation I convinced her that one copy of my first book would be good enough. I wrote the check making sure I had her name on the receipt. After the signing I went to the receptionist and found out she was a new resident. Then I went to the head of assisted living and suggested that she inform the family of the incident. I also suggested that they take away her checkbook and give her small denominations of cash instead. I also offered to refund the money for the book if the family wanted. My husband and I joked afterwards that I could have had a much better book signing.”
7. Not Getting Papers in Order
“Another problem stemming from denial could be not getting needed legal papers in place, such as financial power of attorney, medical power of attorney also known as advance health directive, and written permission for adult children to see their health records. Without those in place, getting proper care, dealing with finances, and authorizing needed medical procedures can be difficult. You would have to go to court to get legal rights to supervise their care, in the form of a Conservancy (or guardianship), which is expensive to initiate and maintain. Not to mention the time it would take. Obtaining a Conservancy also involves having your loved one deemed incompetent, which can be very humiliating for them. Once they are deemed incompetent they can no longer execute legal documents.”
8. Caregiver Health Decline
Family caregivers also put their own health at risk when they are in denial about the help they need caring for a loved one. Lonseth points out that family caregivers over age 66 have a 63% higher mortality rate than non-caregivers, and that “often the caregiver dies before the loved one they are taking care of does.”
“I know of two cases where that happened this past winter. In each case it was the husband taking care of the wife with Alzheimer’s or dementia. Both gentlemen did not let their children know what they were really going through physically, mentally and emotionally. One got so worn out he had a heart attack even though he had no previous history of heart disease. The other gentleman was also so worn out and sleep deprived he contracted infections and developed other complications that his depleted body could not fight. In both cases, the children had to step in and care for Mom, immediately.”
Lonseth believes that one of the best ways to prevent or overcome denial is the family meeting, and she quoted Gary Joseph LeBlanc who, writing for the Fisher Center for Alzheimer’s website, said: “If possible, a family meeting should be held right after the initial diagnosis is obtained. The sooner everyone realizes that their loved ones will no longer be able to care for themselves in the near future, the less denial will be brought forward.”
Lonseth also highly recommends techniques in an article called “Denial is Dangerous” by Carole B. Larkin. The article includes tips to help overcome denial among your family members. For example, “Help them to understand that fear is overruling logic,” and, “Explain that denial or doing nothing is actually doing something; and that doing nothing is going to cause more pain for all involved.”
About the Author
In addition to “A Gradual Disappearance,” Elizabeth Lonseth is the author of a pair of Christian fiction novels set in the Pacific Northwest: “Leave it With Him” and “Cares of This World.” You can learn more about Lonseth’s life and work, or inquire about speaking engagements, at her website: www.elizabethlonsethnovels.com.
Do you have any caregiving tips for families recently diagnosed with Alzheimer’s or dementia? Share your thoughts in the comments below.
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