“Get out of my house,” Kathleen screamed at her daughter Susan, standing in the doorway. Earlier in the day, Susan had taken her mother to a follow-up neurological status exam, which was definitive. Kathleen was furious because it had gone badly and she was still able to understand much of what the doctor had said about her dementia.
Kathleen showed so much confusion during the test. When they got home and walked from the garage, Kathleen dug in and blamed Susan. As a senior living executive who worked for decades with families struggling with dementia, I didn’t find Susan’s story surprising when she shared it with me.
As the saying goes, “We always hurt the ones we love.” This can especially be the norm when people with dementia have lost their sense of appropriate levels of interaction and control of their emotions.
A dementia diagnosis takes its toll on everyone. As a financial advisor you may have insights into the family dynamic and are in a unique position to offer advice and counsel at such a serious time in the life of a family. The hope is families realize early that at some point help will be needed, allowing everyone involved in decision-making time to get on the same page. It is challenging to talk to a paralyzed, angry, embarrassed, exhausted and grieving family.
Live the life you love
The goal in caregiving is to want the individual with dementia to live the life they love…. whatever that means for them. But it is also important that family caregivers understand that they, too, should live the life they love. The diagnosis has a reciprocal effect on them, but this is really difficult when “mild” dementia progresses to different levels of “moderate.”
Here is the family’s crisis moment that can’t be ignored: home care becomes challenging to the point of impossibility. It doesn’t always occur when a family is caring for a parent with dementia, but it’s common enough that I view it as almost inevitable. Many times, we see a spouse who becomes physically ill from the strain of caregiving and a decision needs to be made. Where can this person get the best possible care and live the life they love, to the extent that it is possible?
Making this decision can be agonizing for even the healthiest of families. Children feel guilty about placing their parents in dementia care. Parents may feel betrayed, and the sincere, earlier promises to keep the parent at home may no longer be able to be honored. Many families must confront, and then find acceptance, that things can only get more difficult unless a concrete decision is made.
The point of impossibility
Sometimes, the decision to place a loved one in an eldercare community is the result of an earlier agreed-upon plan initiated by the one with dementia, along with their legal advisor, financial advisor or chosen power of attorney. That is a preferred scenario if a family is in a position to have discussions and include the person with dementia. Facing reality is hard.
Hopefully, care decisions are often brought up in estate, financial and insurance planning with a professional. During this time people are more likely to be under less pressured circumstances. A person of clearer mind is in a better position to make conscientious, personal decisions.
Arriving at a care-plan decision can be daunting. I’ve mentioned that many other factors may affect dynamics in a family meeting. Each person involved and each family is different. The conversation will be affected by so much emotion emanating from history, finances, present circumstances and experiences of transition. Frustration can be the factor that ends the conversation, so we often have to “start again from the beginning” on another day. This is how many families I worked with make decisions after they’ve reached what I call “the point of impossibility.”
Dementia is progressive, so at a certain point home care invariably becomes too difficult. The situation is especially unsafe for all involved. If you try to make home “easier” for the person, the well-meaning gesture can backfire and cause confusion. This is true even for families with financial resources who can afford at-home caregivers. The average American house or apartment is not equipped to handle caring for a person with dementia. Many problems are built into the design and security of the dwelling.
I spoke with one quite affluent family that was able to provide round-the-clock caregivers for their 91-year-old father with vascular dementia. However, coordinating the care was a burden and it took a serious toll on the health of the man’s 81-year-old wife. She was responsible for his care.
She had to make many daily decisions that were stressful and exhausting. At any moment, anything could change and her resilience was waning. She was the only person her husband still knew and trusted. He let her cut his hair and his food. Everyone else was a stranger. Her husband often became disoriented and terribly frightened. Within a year, she herself was hospitalized for cardiac issues from the stress.
With their mother in the hospital, the couple’s two adult children, each with careers and families of their own, had to drop everything and fly in to supervise their father’s caregiving. What made things particularly challenging was that they did not know his routine and their mother’s carefully honed coping mechanisms and solutions to manage their father’s mood swings.
Many times, an elderly couple can cope well together but not separately. The couple has known each other so well, for so long, that one of the spouses could compensate for the other’s issues. But apart, neither of them can function effectively. Put it this way: 1+1 = 1.
The need for a decision about care most often is a result of a crisis, which clarifies to a family or a partner that care for their loved one at home is no longer feasible.
Kathleen’s situation discussed above shows the commonalities of how things often progress. The practicalities of caring for someone with dementia are many and they can be quite challenging. Another reminder of the realities of aging came up a few years ago when an elderly man came to visit my office to learn about our services. He seemed frail, and I simply assumed he was looking at one of our communities for himself. After talking for a while, he said, “Well, I think my mother will like it there.” What? He was in his early eighties. His mother was over 100.
Not all stories are funny, though. Our population now has a syndrome we call “elder orphans.” We will see this more often among aging baby boomers than with previous generations. Some people have outlived their family members. Perhaps they never had children. These people manage on their own until they can’t. In some cases, they understand their situation and make plans and arrangements on their own. However, I have had calls from concerned neighbors and law enforcement asking, “Can you do something about this person? He’s all alone and becoming demented. He needs to be living in a facility.”
For some, moving a loved one to an elder care community can be emotionally devastating. For many reasons, the resident feels emotionally traumatized. People with dementia don’t deal well with change, especially changes in living situations, and may not deal well with the move. Even if the person is experiencing later stages of dementia, they are getting the point — this is the final stage of their lives.
For children and spouses, moving a family member into elder care often triggers feelings of guilt and shame, which is understandable. A spouse or a child may feel obligated to take care of the person with dementia. He or she may not be able to admit that it has all become too much to handle. This is not a failure, but it can feel that way. It can feel like giving up.
There is the perception that a nursing home is a terrible place to be. No child or spouse would want that for someone they love. Although there have been so many positive advances in elder care, a fear of nursing homes still persists in society. Kathleen used to remind Susan with her message of guilt, “When I married your father, it was ‘til death do us part,’ and I expect you to make the same promise to me. You must promise you’ll never put me in a horrible nursing home!”
Making the decision
Depending on the dynamics of the family and the severity of the dementia, at some point, the decision needs to be made. There are many different ways to start. The best approach is to involve the person with dementia to the greatest extent possible. They may not be aware of everything that’s happening, but they are definitely sensitive to big changes. If they are gently told and able to understand that they are going to be living somewhere else, that’s best.
With people who are still in early dementia, it can be very difficult. They may not accept that they can no longer live at home. Frequently, they don’t understand how difficult it is to care for them. That is one of the unfortunate impacts of the disease. They don’t see the strain the disease is causing. Indeed, they may perceive the decision to have them live in assisted living or memory care as an affront to their dignity or perhaps they feel abandoned.
In my experience, however, even if there is tension around the decision, it will probably be accepted. I think that people understand, deep down, what is happening. Usually, the move can represent an improvement in their day-to-day lives.
The importance of planning
Of course, it’s best if the family can agree about what to do in advance of someone becoming affected by dementia. Planning is critical, if it can be done. This includes managing legal and financial documents such as wills and trusts, as well as living wills, do-not-resuscitate (DNR) orders and powers of attorney.
After someone becomes demented, it’s much harder, if not impossible, to get a true sense of what they want. The plan can change, of course. It is so valuable to have a sense of what someone wants before they become unable to express themself. Encourage your clients to have the conversation. It takes courage but will pay off emotionally for everyone involved.
The good news today is that there are many new options for care. Even now, families can choose to live in communities that include independent living, assisted living and memory care. With these sorts of choices available, a family can start the transition process into care before a crisis occurs and the decision results in stress and emotional fallout.
Many times, I have heard a new resident say once they’ve settled in, that they “should have moved in years ago.” Or a family member says how mom or dad has “perked up” since moving into one of our communities. Many times, this is due to the social isolation they were experiencing at home. Maybe they weren’t eating correctly or getting necessary nutrition at home because there was too much to manage. Once these issues are resolved, people can thrive in senior living communities. We want people to be happy and live their best lives, because life is precious.
Larry Carlson was the president & CEO of United Methodist Communities, a multi-site provider of senior living in New Jersey for 11 years before his retirement. Larry’s career in senior living spans more than 45 years. He served in leadership roles for six not-for-profit, faith-driven organizations in four states. His book, “Avandell: Reimagining the Dementia Experience,” available on Amazon, is for anyone whose life is impacted by a person with dementia. Avandell embraces people with dementia, allowing them the dignity and joy to live the life they love.