AS LIFE SPANS LENGTHEN, the problems of long-distance caregiving and elder exploitation are growing too. I recently discussed these matters with life coach Sandy Weiner, who has not only a professional but also a highly personal interest in the subject. (This picks up on a previous discussion on long-distance eldercare back we conducted back in 2010.) Here is our conversation:
LOST IN BERLIN: Last year you took the dramatic step of moving your 93-year-old father from a nursing home in Florida across the ocean to your home in Berlin. What events led you to take to this remarkable decision?
SANDY WEINER: My father had been living on his own and then started receiving outside assistance. When we realized he was having a problem, my partner and I brought him to a neuropsychologist for evaluation. This doctor gave a really nice, fancy title for the kind of dementia my father had. We thought this was quite strange, because we had seen my father just a few weeks before and he had been perfectly healthy and normal, still driving a car and volunteering to do taxes for the IRS. Suddenly he couldn’t add three figures together and come up with a figure that made sense, or even understand the meaning of numbers. The assisted living facility he moved into didn’t help matters either. My father got very depressed, stopped eating, and became incontinent. My stepmother sent him to the hospital on Christmas Eve a year ago and from there he moved to a nursing home for Rehab.
What could have caused such a sudden change to his condition?
It was his medication. Over the past two years we’ve learned that if you overdose on some of the typical medications that older people take – like high blood pressure medication and anti-cholesterol medication or blood thinners – just the combination of those medications alone, taking them twice as often as you’re supposed to or not taking them at all, causes what looks like dementia. Also, if you do it often enough it impacts the thyroid. In my father’s case, at ninety-three, he was diagnosed with sudden onset low-functioning thyroid, which is unusual at his age and his overall good health. We are fairly certain this was caused by stopping and starting his medication. A low-functioning thyroid that is not treated also causes what appears to be dementia.
So have you seen this phenomenon corroborated by other medical and anecdotal evidence?
When my father was in the hospital the physicians examined his thyroid. His doctor said once his thyroid was treated we should start seeing improvements, even though it could take three or four months. But it would seem like a miracle, where he started regaining memory again. Other healthcare givers I’ve talked to at hospitals and nursing homes have reported the same thing with patients whose medication has been brought under control.
Where I’ve seen it myself has been watching my father in the past three months when he’s been living with us. He’s started to regain lots of skills again that he had just lost two years ago when he went into this really morbid depression and loss of being in touch with himself and the world around him, where he’d just shut down practically overnight. Now his memories are coming back, he’s got a much better perception of place – not so much of time, but in naming things, picking up skills, starting to take care of himself again, and recognizing the people around him. We’ve noticed some really big changes.
So if drug-induced dementia is a common occurrence, how come we don’t hear more about it?
Drug-induced dementia is on the rise. It is one of the scams for the elderly that is hardest to detect and prove. Normally, when we see this sudden change in elderly people, we write it off, saying it’s just another change in life. Even when we trust our intuition, when we know that something is wrong and seek professional help, doctors and psychologists regularly say the same thing and try to console us, telling us that we need to face up to the fact that our parent/relative/friend is aging... be realistic, we're told. It happens all the time. But in many cases you may have a new caregiver who’s gotten involved, or someone is influencing the person to rebel or take new control over their life. The caretaker tells them to stop taking the medication or gives them more of it, and the older person trusts them or rebels against something, just like a teenager, and shows their power with their actions. Who would ever suspect that? Either way, there is an imbalance in the system that leads to dementia. If this lasts long enough, it may lead to problems with the thyroid, with the capacity to think clearly, and other problems in the body.
So why isn’t this a bigger issue? Why is it permitted to happen, assuming the person is receiving proper medical supervision?
It’s really hard to prove. These are medications that people already have. It’s easy to say an elderly person isn’t taking their meds, or that they’re doubling up on their meds because they “forgot” to take them. If you look at the medications themselves, these side effects are not necessarily obvious. Rarely do people know about the impact of combinations of meds or their impact when they are not properly administered. Most people, including doctors, automatically jump to the conclusion that “this is just an elderly person and it’s normal. You have to face reality.” Someone told me that just today in one of the nursing homes I was looking at for my Dad. People say: “But this is what happens when people get old – they get dementia.” Hardly anyone ever asks why they get it.
Pulling away from life
That’s an interesting point, because I'll admit that my automatic reaction when I see an elderly person with problems is also to think: “That’s just an old person, of course they’ve got dementia or Alzheimer, you can’t expect that much from them.” So do you see this as a serious problem for today’s elderly?
Yes, I see it as a massive problem. Up until the past few years, we thought the brain deteriorates over time and that you can’t build up new skills. Now we know it’s more a case of people aging and losing interest in what they used to do. Consequently their brain is no longer active, there’s a lack of stimulation. If you don’t use it, you lose it.
This doesn’t mean you can’t regain your faculties, however. Many elderly people lose touch with their normal patterns. A spouse dies and they no longer want to do the things they once did, or they lose mobility. The people they used to do things with die. Their interests change and they aren’t encouraged to find something to replace them with. Or, in my father’s case, he became part of an environment that discouraged him from doing the things he loved to do, which would have kept his brain more active.
So how did that come about?
With my Dad, influencers got involved in his life and started to “take care” of him rather than allowing him to take care of himself. Then they told him he couldn’t do things for himself. So suddenly he couldn’t do things for himself any more, and others believed it too. They discouraged him from doing things he wanted to be doing. The influence came from people around him that he had grown to trust and wanted to please, convincing him he shouldn’t be doing volunteer work, like his work for the IRS. They said since he wasn’t getting paid for it, he shouldn’t do it. So to keep things calm in his life, my father stopped doing things he really enjoyed because people told him over and over again he should stop. He retired. So he started pulling away from his previous life and the close friends he had who were still alive. Instead, he trusted in the wisdom of the new people around him.
Rediscovering a mission in life
So what do you think is the best way to keep the elderly stimulated? Nursing homes are usually equipped with TVs…
…and TV is horrible because there’s no interaction. But it’s not just TV. People moving to assisted living facilities or nursing homes stop doing little things, like making their own breakfast or putting away the dishes. Even basic skills get lost because it’s all done for them. So there’s no motivation to get up and move. There’s no motivation to go anywhere. There’s no external stimulation: volunteering, visiting the grandkids. It makes a huge difference when they are interacting, volunteering in preschools and minding the kids, playing ball, doing things that keep them active and involved. I’m a great believer in logo therapy and discovering a person’s mission in life, then having them be involved somehow so they’re living their mission in life.
So how does the notion of a “mission in life” apply to a person at the end of their life?
It’s still the same. In my Dad’s case, his mission in life is and always has been to help people. When he’s not helping people, he feels he has no value. He doesn’t want to get up. He’s depressed. If you take that away from him, there’s no impetus to keep living.
I’m a life coach. I often support my clients to find what their mission in life is, to listen for it, discover what gives them value, and then apply it to their present set of circumstances and the future they want to create. There are many things people can do to feel involved and live their personal missions. If somebody’s mobility is good but they don’t want to go far from their care facility, there can be plenty of opportunity at hand if they are engaged. Like in my dad’s case, maybe he can push a wheelchair for another resident, take someone out to the garden (something he wouldn’t do alone, though he loves gardening, but would gladly do for someone else). Whatever the involvement, if it aligns to our mission in life, we start finding meaning again and start noticing the beauty and joy of life again. This doesn’t necessarily mean being active the way we are in midlife or earlier on, but rather to create something that has meaning and is in life with the person is now.
So how have you been able to implement this with your father?
There are a few things. At first, my father was severely depressed and didn’t want to get out of bed. But we knew he had always loved to garden and contribute to someone else’s life. So we spent a lot of time planting the garden. I planted most of it, but my father felt as if he did it himself. He directed me on what to do and what to put in. He watered it a couple times a day. He didn’t really do much, especially at first, but he felt like he’d done it all. He had responsibility. He could look out the window and see the colors, see the flowers. He could always relate colors he would see elsewhere to the colors in the garden. We invited him get involved with my teenage son and pass on his life stories to him. In time, he and my son would take our dog out together, and also go out for coffee and cake. They would reconnect. He loves our dog, his grandson, and sweets.
It is exhausting
Now this process of recovery has been a serious challenge to your father, but also to you personally. So although you studied psychology and have worked for many years as a coach, this goes way beyond what people normally learn in books. So how have you dealt with it yourself?
For me it has been exhausting. You see, when a client comes to me, we work on issues and then the client leaves and works on them on their own. In this case, however, my client lives with me 24 hours a day, together with the rest of my family that’s living with the same issues. As my father grows and moves out of his depression more and more, he gets excited about little things. He’s also more aware, which is great for him but means more work for us. He wants to understand more, we have to pay attention to where he is wandering to, answer his questions and keep paying attention to what he needs next. Now he’ll shake me awake at 1, 2, 3 o’clock in the morning to say that he has to go to the bathroom, whereas before he was incontinent and had no conception that he had to go. That has been exhausting and has disturbed my sleep and my overall ability to think.
The other aspect is that as he has been growing new skills, he’s like a kid going through the terrible twos. His neurons are growing. Then something happens like a small stroke, and amazingly he integrates new skills! My father’s doing better, but I’m wiped out, and so is my family, due to the lack of sleep. For us, there came a realization that we can’t do it alone. In this case, I chose a nursing home, because we couldn’t find someone to move in and care for him. Finding the right nursing home has been extremely difficult. What we really needed was a nursing home that understands this situation, something more like a care-development center.
How are you doing now?
I’m tired. The last couple of weeks I’ve been exhausted. It’s also hard to make time for anything else. It’s been tough for me not to be on 24 hours a day. I’ve found I’ve had to ask friends and colleagues who are masterful coaches and talk through the situation as much as possible. I’ve realized the need not just to go to a friend, but to a coach and have someone listen and give feedback, help me work through it, and give myself permission to take time for myself.
How do you reconnect an elderly person who has become depressed and lost their bearings?
For me it’s twofold. First, you need to help someone discover or remember their mission in life – often by listening to their life story and listening to the themes, what was important to them. The other is to remember what someone really loved, what gave them power. In my Dad’s case, he always loved music, he loved to dance. And he always loved to help people. If you listen to his stories – and most of us tell stories – you can hear his theme, and that is his mission in life. My father’s theme was always helping people. As a fireman in New York City, or arranging a rescue mission on Okinawa during World War II – helping people has been a theme throughout his life since he was a little boy. And that’s where he wants his praise to come from – that’s where his value is. So to create an environment where he’s helping people and doing something, and adding beauty – that will give him purpose again. A mission.
Sandy, do you believe everyone has a mission in life? All seven billion of us?
Absolutely. And I think each mission is unique. They might all sound similar when we talk about them, but I think each one of us has a unique perspective on what our mission is, on what gives us meaning. Finding it, and living it, energizes us and makes us whole. That’s where our power comes from. That what gives our lives their special meaning.
Sandy Weiner lives in Berlin, Germany, and for over 25 years has worked with clients around the world to help them find their mission in life and business and create the life they choose. She is a Master Certified Coach, mentor coach, change management facilitator and master coach trainer. Sandy's focus is on developing ways to support long-distance caregivers’ quality of life and fight against elder exploitation while learning to keep balance and love in her own life. For more information, go to: