Dimensions of Dementia
Recently one of my friends stopped me in a parking lot. She needed advice about her mother’s memory loss and subsequent denial of the problem. “It’s so hard,” my friend said, “because my mother won’t go to day care or a support group, and her care is all on me.” I commiserated, sharing a similar experience of my mother’s denial of her own memory issues, and said I’d cover the problem in a column.
Our conversation brought back memories of the long-distance care I provided my mom, who had always been a loving and positive woman. However, as her memory began to fail she resisted any help I tried to offer. On my visits to her home in Phoenix she complained that she didn’t need a safety bar in her bath tub, didn’t need her soiled carpet cleaned, didn’t need a new will, didn’t need my help to cook a meal.
As her illness progressed I brought her to live with me and my husband in Florida and Pennsylvania. I tried taking her to day care but she wouldn’t stay. “Why are we here? Let’s go home,” she’d say. When I went to work or to an event I’d bring in caregivers for her. These caregivers were not easy to find, not very helpful, and she was not happy with them. My stress escalated to the point of constant headaches. After a conference call with my sister and brother, who were not geographically close, I placed my mom in an assisted-living facility. It was the hardest thing I’ve ever done.
I realize now that I lacked the knowledge of how to cope with her denial, and if I’d been wiser I could have possibly kept mom out of a facility for several more years. It would have helped so much if mom and I could have talked about her disease and taken steps to make life easier for both of us.
Now I know her denial was probably because of fear. She was coping with changes in her mind and body that she didn’t understand. Wikipedia states that while the term “denial” in ordinary English usage is defined as “asserting that a statement or allegation is not true”, the same word is used for a psychological defense mechanism postulated by psychoanalyst Sigmund Freud. When a person is faced with a fact that is too uncomfortable to accept, they reject it instead and insist that this fact is not true, despite what may be overwhelming evidence to the contrary.
Here’s what www.unforgettable.org says about a patient’s denial of their diagnosis: “Put yourself in their shoes. Imagine being told you have an essentially chronic and incurable condition. Would you simply nod your head and agree, or would you question it, particularly if you’re feeling quite well and have been telling yourself for years that your ‘forgetfulness’ is just old age. So first ask yourself… can you really blame them?”
Unforgettable.org lists five reasons for dementia denial. One: They have not yet noticed their symptoms. Perhaps it’s not affecting their life too much. This is often the case if a spouse or partner is covering for them and helping with everyday activities that they might normally struggle with if they were on their own.
Two: It’s a coping mechanism. Sometimes denial is simply a way of masking the fear, uncertainty, grief, and loss that they may be experiencing about their diagnosis and their future. They might say “there’s nothing wrong”, but also exhibit anger, moodiness, and depression.
Three: They do not remember being given a diagnosis. Even if patients accept that there is a problem when the diagnosis is given, there’s a chance they may have forgotten about it within a few weeks.
Four: They think it’s just part of getting older. One of the biggest myths surrounding dementia is that it’s a normal part of growing older, and that everyone loses their memory in the end. This is not the case. Dementia is a serious brain disease, and the decline in cognitive faculties is very different from occasional absent-mindedness that can happen to many people, young and old.
Five: The stigma attached to dementia. Having dementia simply wasn’t spoken about until fairly recently. The idea of being “demented” had connotations with a mental asylum. Therefore, if someone had noticeable symptoms it was often kept hushed-up. I believe this was one of the influences on my mother’s denial of any memory issues.
A caregiver can also exhibit denial. In hindsight, I realize that I was in denial about my husband’s decline due to Alzheimer’s. With each new loss, I didn’t see it until I was forced to. He had been paying the bills by writing checks and his checkbook was a mess, so I took over that chore. At the same time, our mailbox was piling up with boxes of products to help his memory. So, I started collecting the mail.
Although six in ten people with Alzheimer’s will wander (according to www.alz.org, the Alzheimer’s Association website), I didn’t believe my husband would. Several scary disappearances later, I had a deadlock installed and became much more vigilant. I was in denial about this and each new stage, not wanting to see the decline.
Jeff Anderson writes about denial on the www.aplaceformom.com blog. He credits Elizabeth Lonseth, who wrote about denial in her book, “A Gradual Disappearance”. Anderson says both Lonseth’s parents and her in-laws had dementia in their later years. Denial is the focus of her speaking tours.
Anderson lists eight risks of denial: First is overdosing on medication. Refusing to accept that your loved one has Alzheimer’s or dementia can lead to bigger problems, such as thinking he or she is able to take medications properly. Pills placed in a weekly pill dispenser can disappear overnight, and you won’t know if the person has overdosed or thrown them away.
Second is that accidents can happen. Denying that your loved one has declined enough to require another level of care can be dangerous. Leaving them unsupervised could lead to accidents in the kitchen and bath, and even result in a fire. They could cut or burn themselves, leave the stove on, fall, and break bones.
Third is family conflict. If family members are in denial it creates frustration for the ones who are facing the disease. Adult children in denial don’t help, and the ones who are aware sometimes take on multiple burdens alone. The children in denial may accuse their siblings of overreacting, and suggest that mom and dad can be retrained to make their own meals or dress themselves.
Fourth is delaying professional help. Often a spouse is very aware that their husband or wife has the disease, but they don’t want anyone else knowing about it. They associate shame with the disease. In the beginning, spouses can usually provide needed care, but as it snowballs it becomes overwhelming.
Fifth is missing opportunities for quality time. Lonseth wrote, “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.”
Sixth is financial exploitation. At a book signing in Lonseth’s mother’s facility, a lady said she’d like to purchase all her books. Lonseth had about twenty copies of each of her fiction books on the table. The woman asked “Will you make out the check for me, please, and I’ll sign it?” Lonseth convinced the woman that one copy of her first book would be enough and wrote the check. Afterwards, Lonseth suggested the assisted living manager inform the family of the incident, take away the woman’s checkbook, and give her small denominations of cash instead.
Seventh is not getting papers in order. Legal papers that need to be executed include financial power of attorney, an advance health directive, and written permission for adult children to see their parent’s health records. Without these papers in place, going to court for a legal right to supervise them, guardianship, involves expenses and declaring the parent with dementia incompetent.
Eighth is that the caregiver’s health can decline. Family caregivers also put their own health at risk when they are in denial about the support they need caring for a loved one, and often the caregiver dies before the loved one they are helping.
Since denial can be very serious, what is the best way to prevent or change it? Lonseth believes that one of the best ways is through a family meeting. She quotes Gary Joseph LeBlanc, who also writes about Alzheimer’s, “As soon as possible after a diagnosis of dementia, call a family meeting. 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 includes tips from author Carole B. Larkin, “Help them 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.”
I would add: Help family members learn about the disease and they’ll be more likely to be realistic. Also, a support group can be helpful for all involved. If you are a caregiver, try to emphasize your need for attending to a special discussion group, and encourage your loved one to help you do this by going too.
Shirley Woolaway has an M. Ed. in counseling and worked in journalism, in business, and as a therapist in Pennsylvania. She has 25 years personal experience with dementia as a caregiver for family members with Alzheimer’s disease, and nine years as the coordinator of an Alzheimer’s Association memory loss/caregiver support group, earlier in Pennsylvania and now on Marco Island. We believe that Shirley’s insights will prove helpful to many of our readers.
For help on all aspects of Alzheimer’s disease and other dementias call the national Alzheimer’s Association confidential, 24/7 helpline at 800-272-3900 or the local Bonita Springs office at 239-405-7008 for care consults and support group information. Also helpful with local educational programs, workshops, and support groups, is the Naples Alzh