Edna Delaney lives in a retirement home in Seattle. She’s a vigorous, high-energy 84-year-old, but she is showing early signs of dementia that her doctor says is likely Alzheimer’s disease. She’s been highly independent since the death of her husband, Frank. From the time he suffered a massive heart attack, Edna blossomed in terms of managing his care and their family finances. Three years after his heart attack, and after steadily declining health, Frank died. Edna grieved greatly, and then she seemed to put Frank’s death, but not her ongoing love of him, behind her, and decided she wanted to live what was left of her life to the fullest.
Edna has four children: Frank Jr., 57, a lawyer who specializes in estate planning and lives with his family in nearby Tacoma; Joan, 53, a housewife who lives with her family in Olympia, about 60 miles away; Roger, 51, divorced and living in Los Angeles where he works as an on-again, off-again scriptwriter for various television shows; and Heather, 50, who lives with her second husband and their three children in Chicago, where she sells real estate.
When their father died, there was some discussion among the four siblings of the best way to help their mother. It was agreed that Frank Jr. and Joan would take lead roles, since they were in closest proximity to their mother. Both Roger and Heather pledged to help as needed.
About six months after his father was buried, Frank Jr. talked with his mother about what help she felt she really needed and what other help she wanted. In that discussion, Edna made it clear that she wanted to remain as independent as possible and not rely on her children. However, she also made it clear that she wanted to stay in touch with them on a regular basis. She said she favored none over the others and that she felt that they were all equal in terms of her affection and attention.
Financially, Edna is in extremely good condition. Her husband was very successful in real estate and in the stock market, and Edna’s net worth is somewhere in the area of $3.5 million. The greater concern — at least on the surface — is her health and well-being.
All four Delaney children have a pretty good idea of their mother’s financial worth. Frank Jr. has a high income that he’s invested wisely, and he is the least concerned about any possible inheritance. Roger, in contrast, is the most financially insecure, because his work is sporadic while his lifestyle is pretty expensive, and he’s very aware of what a good inheritance could do for his life.
During the past year, Edna has become increasingly confused, uncertain, and forgetful. She’s fallen several times in her apartment, lying on the floor until either the maid service found her or it was noticed that she wasn’t present in the dining room for a meal. Although she has been given a panic button to wear around her neck to use in precisely such situations, Edna — either in her stubborn wish for independence or because of her forgetfulness — more often than not leaves the button in her night table drawer.
Because of these experiences, the administrator at Edna’s retirement home called Frank Jr. a few weeks ago and explained that his mother required more attention than the home could offer. He suggested that Frank consider how to ensure she gets the level of attention that she increasingly seems to need. They discussed increasing the care provided on-site with some in-home supplementary services and even a move to the assisted living level in the home or alternatively to a nursing home, although the latter option is one they both believe she would strongly resist.
In addition, a few weeks ago during Edna’s annual physical examination, her doctor surmised, based on her movements and a slight tilt to one side, that she may have had a mild stroke. The doctor has scheduled her for a CT scan to see if there is any evidence to support the observations.
But the doctor did tell Edna — and also called Frank Jr. to advise him — that there could be other smaller strokes and that there is a potential for a more serious stroke to occur because of Edna’s weight, eating habits, and past history of heavy smoking.
Frank Jr. shared this information with his brother and sisters. They all agreed at the time that he should take the lead in ensuring their mother has the care that she needs. Based on this collective decision, Frank Jr. has decided that his mother needs more in-home help. He has arranged for her to be moved to a larger apartment in the retirement home and has hired a caregiver, with backup support. In all, Edna’s accommodation, meals, and care are now costing nearly $8,000 a month.
Edna has been prescribed medications to improve her function and decrease the likelihood of further strokes, and Frank Jr. has arranged for the pills to be dispensed in such a way that Edna will be more likely to take them correctly. The increase in help is imperative now that her medication regimen is more complex and her care needs are increasing.
Roger, who seldom called or visited his mother in the past, now calls her every other day. He has visited her twice in the past six months. Edna confides to Frank Jr. that Roger has suggested that she should move to California to be near him. Roger has also impressed on his mother that the weather there would be better for her. Plus, in all his calls, Roger has probed about her will — again, something Edna tells Frank Jr. — and has urged her to consider which of her children needs and deserves more of her money when she passes away.
Frank Jr., having reflected on all he’s learned and been told, urges his mother to think through what she wants to do with her will, which hasn’t been revised since before her husband died. But he’s reluctant to give advice. Despite his vocation, it’s an uncomfortable situation for Frank Jr. since this isn’t just a client — it’s his mother. Heather, in her weekly telephone call, urges her mother to write a new will and plan her life to suit her own level of comfort and needs, pointing out that all her children are adults and can and should look after themselves without depending on her. Finally, Joan, who visits her mother once a month, is subtly lobbying her mother by reminding Edna that she’s always there for her and that she comes to see her regularly.
When Frank Jr. conducts an inventory of the state of the family affairs, he realizes that none of Edna’s children are really talking to the others about the situation and how best to manage it. He’s troubled by this, but not quite certain what to do about it. While Frank is busy with his day-today work and thinking about how to talk with his mother, Roger arrives for another visit. During that weekend, Roger applies great pressure on Edna to move to Los Angeles and to give him power of attorney over her financial affairs and her health needs. He vows to look after her, telling his mother that he’s the only one who doesn’t have family to support and, therefore, he can devote his time and attention to her well-being.
Edna tells Frank Jr. about Roger’s thoughtful suggestion. But she’s already confused, and when Frank Jr. tells her to think about what’s best for her, she confides that Roger made it clear that he was the one who could care for her best.
A week later, Roger calls his brother and sisters and makes his case for being the prime caregiver and moving their mother to Los Angeles. He’s adamant in his position and pleads for support. Heather is concerned; worried that Roger has a self-serving agenda. Joan doesn’t know what to think, except that Roger is going to end up with a lot of money. And Frank Jr. is worried that his mother will give in to the pressure being exerted by Roger.
None of the siblings feels comfortable with the others or with the way things are shaping up. Nor do any of them know what to do, or how to do it, except for Roger, who the others believe has a clear agenda.
Suddenly, there is growing doubt and concern among them and a sense that perhaps they must jockey for their mother’s attention and favor.
The Geriatrician’s Point of View
The primary focus of all of these deliberations must be Edna. If any of the children forget this, there must be a way of reminding them clearly, while things are still reasonably stable and before there is a crisis in Edna’s care needs or a breakdown in the relationship of the siblings. This may require a family meeting, even if it means that all of them have to visit Seattle. If that is impossible, they should plan a conference call in which they all can participate. If their basic relationship prior to Edna’s decline has been good, they can build upon that foundation to take the steps that will assure Edna’s well-being for the present and the future.
There are a number of issues that must be aired during the family discussion. With the necessary information from the doctor (a family meeting with the doctor could be of great value, but might not be logistically possible), it should be possible to get a prognosis and likely timeline of the progression of Edna’s medical condition.
If she has Alzheimer’s disease and also suffers from some small strokes, it is pretty clear that there will be continued deterioration of her mental and intellectual functioning. This is the case even if she is considered a suitable candidate for one of the more common drugs used in combating Alzheimer’s disease (e.g., Aricept®, Exelon®, Reminyl®, or Namenda®) that might decrease the rate of decline but will not offer anything like a cure for her condition.
With the knowledge that there will be a progressive decline, the next question that must be asked is whether, in fact, Edna has the mental capacity to make the kinds of decisions that she is being asked to make, such as changing her will or moving to California. It is likely that if formally tested …
Photo credit: Jakub Kadlec. Note: photo is for illustrative purposes and is not drawn from the book.