August 30, 2013
We are in the business of providing caregivers to help folks stay in their home. Occasionally we get to save people from themselves. This is a story that is common. In other words we see this type of challenge all the time. I am writing in order to give some encouragement and hope to those folks who collide with parents, who I will describe as former masters of their own universe. When dementia arrives, they are faced with having to learn to let go of control.
The other day, I received a call from a woman who is the daughter in law of a man we will call Sven. Sven is a 90 year old stubborn Norwegian man. For years and years, he has been the dominant power figure in his family. He is the father of 4 boys, who are now in their 50’s and 60’s. His wife, LaVon, is in her late 80’s. She has severe dementia symptoms. She has a weekday caregiver coming in who lives across the street. Luckily, the caregiver, who we will call Diana, has plenty of qualifications and experience in the business of caregiving. She also happens to be a walking, talking saint, which is another stroke of good fortune.
So the story is that for Sven has been holding the position that he can care for LaVon, in spite of the fact that LaVon is losing weight and has had several unscheduled falls while Sven was snoozing in his recliner. Sven has his own health issues. By and large he is clear minded, but denial is a fair description of his understanding of the present situation. LaVon fell on the floor 2 weeks ago. She went to the hospital. On the way home, Sven grabbed a brochure in order to sign up for some homecare on the Saturday that LaVon left the hospital. He called over the phone, and the lines of communication appear to have failed because on Sunday morning, Sven and LaVon had a woman show up for a planned 7 day live in arrangement. The firm, Fedelta (I have no confidentiality agreement with them), did not conduct a home assessment prior to the arrival of the caregiver. They also charged Sven $400/day up front on his credit card. That is about $100 per day above the going market rate.
So we get into the mix after Sven fired Fedelta, and was telling his family that he did not need a homecare firm, that he could take care of LaVon himself. This is after LaVon has just returned from an episode caused by his failure to prevent LaVon from falling. The family also claims that Sven is emotionally abusive, that he fails to feed LaVon properly or give her the prescribed amount of pain medication.
So the daughter in law, Julie, by another stroke of good fortune, happens to be a retired social worker who worked at an excellent retirement community in downtown Seattle. She calls us, and sets up a visit by me. I do not know until after the fact that my visit is a planned intervention, just like one does with an alcoholic family member. I am the lever. But the twist here is that after the emotionally exhausted family members get things all set, am going to be left to work with Sven. So I have to help orchestrate and intervention and have Sven trust me after the dust settles.
Julie has done her homework. She has briefed one of my staff members about the situation. I have been briefed by her. I have not decided how to approach the delicate situation as I walk in the door. It is not until I am already in that Julie shows me an assessment conducted by a geriatric care manager who happens to be an old associate of Julie’s. Knowing how Sven works, Julie has set up a situation where Sven has to either accept weekend care for Lavon or accept that Adult Protective Services will sweep in and take control of the situation. In other words, Sven has the following choice: let go of control and willingly do what his boys and daughter in law demand or lose his family.
While I admire Julie’s advance preparation, I feel a little sorry for Sven, because he can’t get out of his own way. He also appears to act like a cornered animal, so I suspect there must be other forces at work that are not out on the table. In the care of a 90 year old man, these forces are usually associated with fear of running out of money. So we back off from the cliff, and I talk to Sven about how I am with many folks during their last moments on this planet. That I have learned that success is something other than what conventional folks believe it to be. I say that a successful person is one who is loved and surrounded by his loved ones at the end. A complete failure of a person is one who insists they are correct but has estranged himself from his loved ones and dies alone. I tell Sven that his is right now at a Y in the road and that I hope he picks the right path. He begins at that point to flex. Then we talk privately about finances, and I give him some assurances that we can find the money to care for LaVon if he will collaborate with us.
It took 4 hours, but eventually he came across.
I felt very good about having been a part of saving Sven from the brink of disaster.
When family members struggle to convince a former leader of a family to let go of control, it is important for them to back off from the argument about I am right and you are wrong. You have to convince the master of the universe that there comes a time when it is not only acceptable but wise to allow themselves to fall back into the loving arms of their children.
For many folks this is as scary as the first time you learned how to ride a bike or dive into the water. It goes against many years of precedent where being self-reliant and in control was the go to method to get through tough situations. This is especially true of folks who survived the Depression and World War 2.
So when you catch yourself in this very common position where you are struggling with convincing a parent to let go of control, work on communicating with the tone of your voice and your body language that you are in this for them. This is counter intuitive for most people who are used to arguing based on logic and reason. The counterintuitive side starts making sense when you recognize that the first part of the brain to fade out with a person who has dementia is their cognitive function, which is where logic lives. If you try to work in that sand box, you are precisely where they can’t play. However, their ability to feel your love lives on forever. You can adapt to them but they cannot adapt to you.
So take a deep breath, relax, and show the love in the pace of your voice. Reduce the background noise. Be reassuring in your touch and your tone. Express gratitude for all they have done for you. Explain that it is now your turn to care for them. That if they will let you protect them, they will not be doing it because they are unable to take care of themselves (admitting that involves a loss of face), but because they will be doing you a favor. If you are their adult child, this will make sense to them. There is honor in sacrificing for your kids. At this stage, finding ways to help the parent save face is critical.
So adjust your thinking. Imagine what it is like to be them. Try not to force them to make a decision that will break up the family. Everyone loses when that happens.