Dementia in the Family

Lena DeKoning and Granddaughter Carolyn

“I’ve never known anyone with dementia” confessed a friend of mine.  A professional caregiver was explaining that an elderly person may remember events and people from their youth and young adulthood but not be able to say what happened five minutes earlier. According to the caregiver, one reason memory loss interferes with recognizing friends and relatives, is because dementia may cause the person to remember a name and relationship from the past, but the face the person sees now is much older than the remembered face and not recognized.

My friend’s comment startled me, not the explanation by the caregiver.  My reaction to this overheard discussion made me stop and think about my experience with dementia and why it was so different from my friend’s.  It made me wonder how many Americans have little or no experience with dementia. 

Statistics provided by the Alzheimer’s Association (https://www.alz.org/media/Documents/facts-and-figures-2018-r.pdf) show that, at age 65, 11.6% of men can anticipate developing Alzheimer’s dementia, while the comparable figure for women is 21.1%.  The percentage of the population with this diagnosis is increasing, according to the statistics on Page 22 of the 2018 Facts and Figures report:

A large segment of the American population — the baby boom generation — has begun to reach age 65 and older, ages when the risk for Alzheimer’s and other dementias is elevated. By 2030, the segment of the U.S. population age 65 and older will increase substantially, and the projected 74 million older Americans will make up over 20 percent of the total population (up from 16 percent in 2018). As the number of older Americans grows rapidly, so too will the numbers of new and existing cases of Alzheimer’s dementia.

The report from the Alzheimer’s Association points out that changes in a person’s brain occur as early as 20 years before symptoms of Alzheimer’s appear.  In addition, during the early stages of Alzheimer’s the effects of the disease may be hard to notice, since they can be subtle. Examples of early signs include a lesser ability to plan and solve problems, difficulty driving or remembering the rules of a game, confusion about time or location, poor judgment in use of money, decreased standard of grooming, withdrawal from activities, and changes in mood or personality.

In most cases I have experienced with friends and family, there has not been a specific diagnosis of Alzheimer’s Disease that I am aware of.  While Alzheimer’s is the most common cause of dementia, there are numerous other possible causes and the treatment and prognosis will vary somewhat depending on the cause.  In discussing my own experiences, I will just use the term dementia.

I don’t know what percentage of the population is directly affected by dementia occurring in their friends or family.  Logically, a person’s experience would depend somewhat on the ages of a person’s friends and family and how much time is spent interacting with older people.  A person whose relatives tended to die young and/or lived far away would be less likely to see the effects of dementia. Furthermore, a family with older relatives in care facilities may be insulated from seeing the effects of dementia since the care facility will help ensure the person’s needs are taken care of.

The discussion of dementia made me think about my own family experiences.  I had two grandparents who were both significantly involved in my life through my early teen years.  For all the time I remember her, my grandmother had dementia.  She thought the people in the t.v. could see us.  She spent the day either in her rocking chair or her easy chair.  She watched t.v. or read the newspaper, although the only thing she commented on in the newspaper was prayers that she cut out.  In all the time I knew them, my grandfather did all the housework, shopping and household maintenance.  When we came over for a visit, he fixed the snacks or a whole meal.  He canned fruit and maintained the yard.  My mother told stories of my grandmother’s singing, sewing and cooking skills, but she had given those things up by the time I came along when she was in her 70’s.  To me these relationships were a normal part of life.  I never heard anyone complain about the situation or worry about what was ahead.  We did occasionally laugh about odd comments grandma would make related to the t.v., but it was good natured laughter.  Over a period of about 13 years my grandmother’s condition got worse.  She began getting up frequently during the night and needed more individual attention.  During that time I visited less often and my aunt helped with her care. There might have been visiting nurses as well.  Eventually, I learned that she had died, at home, presumably of Alzheimer’s.

My next direct experience with dementia occurred with my aunt.  She was a strong, capable and independent woman who had moved into a continuing care retirement community with her husband when she was 61 and he was 74. For years they said the best decision they ever made was the move into this luxury retirement community.  My aunt was 74 the year her husband died. Living in an active adult community helped her make a smooth transition into life as a widow.  She had many friends and lived a very active life.  I visited her with my family every few months and she was always a gracious hostess to us and warmly welcomed our visits. Until she reached the age of 89, I had never been involved in her personal finances, day-to-day healthcare, or personal care.  I had no reason to think she needed assistance, except for her age.  

Marion DeKoning Hayek, Robert Hayek, and Edith DeKoning Inches in Portland, OR

When my aunt asked me to help her manage her finances, at age 89, I was happy to do so.  I had recently left my full-time career and it gave me something new to work on.  Initially, I spent most of my time with her gathering information about her finances and her existing estate planning documents.  Everything needed updating and we worked together to accomplish that. There were some complications that took a while to resolve.  She continued to pay her own bills with her checkbook and I would visit periodically to review the status of her accounts and items that came in the mail.  Things went smoothly at first, but then there were episodes of confusion or forgetfulness. She also began responding to numerous scams that came in the mail, sending money to pay for shipping a “free” ring or sending money for a chance to receive a large cash prize.  I had to take over the checkbook and billpaying. The family wanted her to stop driving, but she resisted that for a while until one day she called and said she was ready to give up her car.  Something alarming must have happened to trigger the sudden change of mind, but I was happy it occurred and took the car away immediately.  Unfortunately, I focused so much on the financial side of things, that I did not pay close attention to dental care, medical care and personal hygiene issues. She had not initially asked for help with those matters and I was too narrowly focused to recognize her needs. Eventually, I began to notice her occasional confusion, memory lapses and inattention to health issues.  Eventually, I was also faced with the issue of getting her laundry done, something I initially failed to think about.  I also scheduled appointments for medical, dental and eye care.  

My aunt lived to the age of 101, almost 102.  She seemed to have died from complications after a cold, but I think she mostly lost her will to live.  Because her ability to care for herself had declined, she eventually had to be placed in the nursing care portion of her retirement community, a place she had always told me she did not want to be.  Up to the very end, she kept up her sense of humor, ability to sing songs and remember the words and her optimistic point of new, but there was a sense that her time had come to an end and she breathed her last breath.

Three years before the death of my aunt, my mom (the younger sister) received a cancer diagnosis and underwent surgery for numerous tumors in her abdomen. It was a shock to the family because she had not had any serious health issues that we were aware of. An equally large shock to the family was the fact that, after surgery, my mother had serious dementia.  Before the cancer surgery, she had slowed down her activities somewhat and occasionally seemed confused about items related to cooking, but we did not believe she had dementia.  She had been functioning fairly normally before surgery. Afterwards, she had hallucinations, did not understand why she was in the hospital, and seemed generally confused. We were told these effects were from the anesthesia and would wear off, but they didn’t.  She lived another 7 months following surgery, but never regained her normal thinking ability or memory.  I later learned that her experience was probably a result of delirium, which the Mayo Clinic website (mayoclinic.org) defines as:  “a serious disturbance in mental abilities that results in confused thinking and reduced awareness of the environment.  The start of delirium is usually rapid – within hours or a few days.” Delirium is a type of dementia which is often associated with an illness, a change in metabolic balance, medication, infection, surgery or alcohol or drug intoxication or withdrawal. Unfortunately, when my mom had this experience, no one was able to explain it to us and I had to engage in my own research to later discover that hers was not an uncommon reaction to surgery, especially for a person who had had mild dementia prior to surgery.  I understand that medical personnel are currently much more forthcoming about information concerning delirium than was our experience in 2006.

For the past few years, we have been dealing with dementia issues in my husband’s family.  In addition, we have a number of friends who seem to be developing dementia.  For almost half my life, I have been actively involved with family and friends experiencing dementia.  I don’t know how common that is, but statistics suggest it will become more common.

Why am I sharing these experiences?  We can all benefit from a better understanding of dementia, since it will become an increasingly common condition in our aging society.  We need to be able to recognize it, so that friends and family members can receive appropriate advice and help, and we need to prepare for it as we do our own personal life and financial planning. Here are some things I’ve learned and would like to share:

1.     A well-drafted General and Durable Power of Attorney is important to have in place before a person develops dementia. Once serious dementia has set in, it may be too late to revise legal documents.

2.    A second critical document is the Medical Power of Attorney, with a Medical Directive included or in a separate document.  

3.    With the Power of Attorney in hand, add the designated agent to financial accounts prior to the actual need to do so.  If there is a defect in the POA or a financial institution requires a special form, this gives you a chance to obtain new documents, if needed, and time to take care of any special requirements the bank may impose, before you have an urgent need to access the account.  Note: the new account signer should be listed on the accounts as an “agent” not as a “joint owner” unless you are certain joint ownership, and its legal ramifications, is what you want.

4.    Create a complete list of assets.  Once dementia sets in it may be hard to get needed information.  Make a note of items that have notable financial, sentimental or heirloom value.  Consider recording the story behind certain items.  

5.    Consult with professionals the person has used in the past -- accountant, investment advisor, attorney, banker, etc. and determine whether a change is needed.

6.    Create an up-to-date friends and family list, which may be useful for sharing information or recruiting help.

7.    Write a biography that includes accurate names, dates, and places before memories are lost.

8.    Create a plan and schedule for:

a.    Medical appointments.

b.    Dental appointments.

c.    Eye appointments.

d.    Nail care.

e.    Hair care.

f.     Laundry.

g.    Shopping for incidentals.

h.    Food shopping, preparation and clean up.

i.     Safety and maintenance review – bathroom, car, stove, heaters, food in fridge, trip hazards, etc.

9.    Discuss preferences for when further personal care or a change of housing is needed.

10.  Create a funeral plan using resources from People’s Memorial Association in Seattle or Funeral Consumers Alliance, a national non-profit consumer-oriented organization.  Review the plan with the preferred funeral home to make sure you understand what will happen at the time of death.

11.  Be cautious about major changes.  A familiar environment helps mask the effects of dementia, since visual cues may serve as reminders of things to do.  When those visual cues are gone, serious confusion can occur.

12.  Identify helpers and information sources for the care manager, who may need support in a process which may go on for many years.

Finally, I want to say that I had many positive experiences while interacting with the family members mentioned in this blog post.  Spending many hours with my aunt acquainted me with stories of her life and the “secret” pleasure she took in special ice cream snacks. I also learned about her boyfriends (3) that showed that love interests can go on even late in life.  My aunt was always a generous person and I was able to assist her in continuing her philanthropy in the community and generous gifts to family members.  I loved seeing how she interacted with staff at her care facility, always polite, complimentary and often sharing a joke. The situation with my mother was more challenging because it came on suddenly, but easier in the sense that it lasted less than a year.  Despite everything she was going through, my mother rarely complained about anything and even made jokes from time to time.  Even with her diminished reasoning and memory, she was able to play music and sing along using a keyboard her adult family home operator provided her.  She never acknowledged that her health was deteriorating or that the end of her life might be near.  She always appeared happy to see me, but never complained when I needed to leave.  In regard to my grandmother, I will never forget the loving care my grandfather provided to her, their home and yard, and other family members.  She was always pleasant and cooperative, at least in my memories, and I never remember any complaints from family members who helped with her care.

I understand that dementia can cause personality changes and that some people, especially men, may become aggressive or lash out in anger due to dementia.  I have heard of that happening, but that has not been my experience, for which I am very grateful.

Carolyn Hayek

Note: You can subscribe to my blog by completing the form on my Subscribe page. You can send me your comments on my About page. You can follow me on Facebook. I’d love to hear from you. Thank you for reading my blog post. Please note that I have several other Blog posts on related topics.