“Take care of yourselves, rest as much as you can, read good books, sing loud songs (when you’re alone…would be best) and read a poem now and then” Ann Sefton, 2015
“Take care of yourselves, rest as much as you can, read good books, sing loud songs (when you’re alone…would be best) and read a poem now and then” Ann Sefton, 2015
WESTBOROUGH, MA January 20, 2015 Dementia is a life changing affliction for both the patient suffering with the neurocognitive decline and spouse and family members alike. Caregivers have a particular cross to bear – especially those without support. It is a highly stressful role for any spouse that requires both education and support. They are at high risk for burnout otherwise known as caregiver fatigue. For anyone who has had a loved one suffer with this disease “it is like seeing a family member die slowly, daily, withering away into an empty vessel” according to Michael Sefton, Ph.D., Director of Neuropsychology at Whittier Rehabilitation Hospital in Westborough, MA. “It is very important to obtain a careful and sound neuropsychological assessment of patients’ suspected of having dementia because so many conditions mimic dementia and may be treatable” according to Sefton.
When a caregiver is overwhelmed something must be done to provide emotional respite for the spouse or family member. Caregiving spouses frequently have powerful feelings of guilt, anger, and sadness as a result of seeing a loved one become forgetful, detached, and confused. They can be extremely difficult to managed in the home setting and sometimes require specialized day treatment. The decision to hospitalize or seek nursing home admission for a family member is an individual one. It is critical to look at the functional change in the afflicted family member and see what placement options make the most sense. Caregiver fatigue places afflicted patients at greater risk for neglect, battery and abuse than other medically complex cases. It places caregivers at risk for health problems of their own.
Throughout America, physicians and psychologist alike are mandated reporters for cases of suspected abuse – regardless of whether the caregiver is experiencing caregiver fatigue or not. Family members are strongly encouraged to support parents, e.g. respite care for afflicted parent, whenever one is suffering from a severe illness like dementia. Read the post at link below.
Lena told me she grew up in East Germany – behind the iron curtain from which she escaped when she was 33. Her best memories were from a time when Hindenburg was the country’s president. She lived in East Prussia near the Polish-Lithuanian border where most East Germans were Lutheran. As children, they were made to stand under the “Hitler cross” each day before school and recite the Socialist pledge for nationalism that she cannot forget. She recites the narrative for me in her native German – translating the final few words into English – “the flag is more important than the dead” she mocked shaking her head. Lena had an unexpected and compelling history about which her doctors seemed unaware.
They were driven from their homes by the advancing Red Army during WW II in the 1940’s as millions were. Yet, these East Germans were subjected to despicable atrocities most people are not aware of during the evacuation. “They took our homes. The banks were all closed. We had nothing” becoming tearful. I bear witness to Lena’s personal memories – the narrative of her life living under the Hitler cross and the journey to America.
Now 91, she lives alone since her husband died over a decade ago. She lives 70 miles from her daughter. I was asked to interview Lena and determine if she was capable of returning to her home alone after she sustained a fall and broke her humerus – the long bone in her arm. It was the second time she had fallen in the past year. I reviewed the chart and her nurse commented that she is noncompliant and suspicious somewhat randomly. It was my role to provide an understanding of Lena’s cognitive status for the treatment team with some pithy explanation as to why she keeps falling and whether she can go home again.
Lena is frail in appearance and has a small frame. Her eyes are hard and I cannot tell what color they are. Her white hair is wispy, thinning. She is sporting a blue sling that keeps her shoulder from moving. It is her dominant arm I note with some reluctance. Sadly, I wonder if the traumatic recitation I am now hearing may be a sign of the psychic unraveling that some elderly trauma survivors experience shortly before death.
As a consultant I try to remain dispassionate. I need to determine her orientation, awareness of illness, capacity to concentrate, and review her gait training, balance, and daily carry over. I find Lena hard to redirect but I need to respect the urgency of her thoughts while she painfully unburdened herself. I am not optimistic about her returning home.
Moments of pleasure
Lena wants to go home so she can maintain her small garden in which she plants tomatoes and colorful flowers each year. “People admire my yard and sometimes stop to take pictures of the flowers” she reports with a slight and hopeful smile. She even boasted a one-handed technique used to plant her garden last year after suffering a shoulder injury in her first fall. With her left arm she dredged an orifice just large enough for the seedling. Then with the heel of her foot she covered and packed the plant with great acumen and apparently admirable results. Resourceful and independent, I thought bringing new meaning to the green thumb adage.
Unfortunately for Lena, there is more than just making her garden she worries about. She is afraid about what might happen to her home when she isn’t there. There has been vandalism – “they painted the Hitler cross on my mailbox and house and broke my windows” she reported indignantly. “What can you do” her voice trailing off. Once, she paid some boys to shovel the driveway. They convinced her to pay them before the job was done and ran off taking her twenty dollars leaving only the snow behind. The same thing happened with the landscapers who she had hired to rake the leaves this fall. Can she go home again? I could derive little experience of joy in her history – often an outward sign of depression.
Lena was raised on a farm, I learned. But she had a brief childhood marred by atrocity and abject savagery. She was one of 9 children. “We had horses and cows and an orchard” she reminisced. Lena was brought up Lutheran but had Jewish ancestry. “Her mother was very religious” she described. Because they had property, landowners were expected to attend regular community meetings during which her father often spoke out against the government – against Hitler. “They had an eye on him when he came home from the war” she reflected. “They came and beat him up once, she remembered – somebody told on him” referring to the time he spoke out against the war at the community meeting. His battered and bruised body “looked like a rainbow” when describing his wounds. “Hitler did not grow up a German – he moved from Austria and promised to spread the ‘German way of life around the world'” she mused. “All he did was invent the autobahn”, now her bitterness and mistrust began to show.
Lena saw 15 members of her immediate family murdered. Her father was shot to death in the orchard behind the family home when she was 9 years old by the German secret police because he spoke out against Hitler at a local meeting of property owners. Her 7-year old brother was made to watch. Her 4 older brothers were conscripts and died in the war. Lena said that her grandmother married a Jew. He was very nice, she pleaded. Later, the family home was taken from them and the animals were killed during the evacuation of East Prussia late in the war. By then she had already lost her parents. Neither the Germans nor the Russians were humane to the native population of Lutherans and Catholics, and Jews.
After being forced from their farm, Lena was committed to a warehouse to live. It was one big room. She was made to sleep between similarly damaged souls – many who succumbed – leaving their postmortem remains for others to see. She and her sisters were raped. Elderly women were raped and murdered. “People don’t know” she grieved now bearing witness to spectacles no person should ever see. She described the dreams she has to this day – of being trapped in a room with no escape but would go no further.
I return the next day to see what carryover she has of our first emotional conversation. I notice Lena sitting next to others in the community room – intrepid – yielding no outward sign of her inner torment. She spoke to no one with a glower on her face that could dissuade even the most confident salesman. She nodded and smiled slightly – faint recognition, I predicted. Uncertain. We agreed to meet again later in the day after bingo. I had been strongly impacted by her disclosure and felt I needed to hear more. What had happened to Lena since coming to America? Was she a member of her community? What kind of life had she built here in New England?
The promise of a better life brought Lena and her husband to America in 1952. She had one daughter. Her Lutheran beliefs taught her the importance of helping others in her community – even neighbors on Cape Cod, MA where she still lives. But the efforts made by she and her husband were often not returned in kind. People were not friendly and welcoming so soon after the war.
“My husband was a teacher in a technical school (in East Germany) and used to help the man who lived behind us when his car would not start” boasted the frail woman with a strong German accent. Here she expressed her bitterness at being persecuted by those who were ignorant and prejudice against people who are different – perhaps more so toward immigrants from Germany when they first arrived after WW II. “Kids don’t know about it today” she complained. She worried that the abject trauma she experienced during the second World War would one day become irrelevant – forgotten.
The pain she felt in Germany was not eased by the democratic change of scenery. In fact, Lena herself was accused of killing Jews by a neighbor simply because of her country of origin. Her daughter was bullied and abused between school and home. The child’s principal refused to allow her to come and speak to the students to help them understand that she too had Jewish blood and had suffered unspeakably at the hands of the Nazi’s and those who drove them out. She wanted to protect her only daughter from the hatred and vitriol and suffering she had endured.
“I am responsible for what happens here in school,” said the child’s principal, “not for what happens when she leaves the school grounds” in a despicable collusion of denial and lack of courage. More than anything Lena wanted to shelter her only child from the same truculence she endured and make a better life than the one she knew. She didn’t even know Hitler” she cried, now rocking slightly.
Lena described a time when her husband was burned by acid that had been mixed into the water he used to wash his hands while working a stint in a local automotive garage. Afterward, he was sent to a physician who indicated the condition of his hands was a disease brought with him from their country in an outrageous distortion of the truth.
“You can complain to nobody” she bristled. “The police don’t do anything” she bemoaned. After her home was vandalized, one officer asked “What do you expect us to do sit in the driveway?”
Can Lena go home again? I am sure Lena would love to return to the idyllic family farm with the orchard and horses the way she remembers it before the Hitler cross flew above her school yard. To visit with her large family before the time when her father was murdered and her windows were broken and her mailbox was disgraced with the Hitler cross. Who can you tell, nobody knows what happened anymore?
I cannot envisage a life-like the one Lena has had with its childhood trauma, loss, and recurring prejudice and persecution. Yes, I would expect that Lena is suspicious and mistrustful but she is not paranoid. What would anyone do if they experienced the life events and atrocities experienced by this woman? The emotional resilience Lena has shown raising her daughter and making a home for her family has inspired me to look at her differently than others might have done in my position.
Lena should go home and yet she is at risk of falls when alone. She has fallen and broken both the left and right shoulders – unsteady on her feet. Her fear and anxiety stem from an underlying sense of vulnerability based entirely on her history of personal trauma and abuse while living under the Hitler cross. The reason for her noncompliance and emotional detachment are the predictable product of her early beginning in East Prussia near the border with Poland. It represents her fiercely stout-hearted spirit and enduring strength – features of the emotional veneer that are the underpinning of her being. It would be wrong to remove her from her place of safety and take her from the garden she loves that brings her a few moments of joy each summer. She feels pride in the tomatoes and colorful flowers she has grown for others to stop and see and sometimes even take pictures.
I return yet again to visit Lena and clarify some of her story and see how she is progressing. In what city did she live?How had she coped with the trauma of her life? When I enter her room I notice an aide rounding up the sheets and blankets from her bed. “She has been transferred to a nursing home,” he remarked without emotion. She had been discharged only a few minutes before I arrived. Her doctor believed it was the safest thing to do. Her daughter agreed I suppose.
For whatever reason Lena felt safe enough in my presence to share the narrative of her life over the course of a couple of weeks. I made an effort to deconstruct the mistrust she projected and summarily to lessen her emotional burden. Arguably, I was unable to extract a pithy aphorism that would send her homeward based on my impression. Yet I wanted to explain the rationale for her transfer. I am sure she was dispirited about not going back to the Cape. Again conscripted into battle over personal control and humility forced to sleep once more among the damaged souls. “Nobody knows what happened” Lena might say – but I do now.
WESTBOROUGH, MA November 30, 2014 A patient once said Dr. Sefton “don’t ever grow old”. At the time I wondered what he meant. The man was alert, physically fit and had a great support system. We have heard for years that today’s baby boomers are growing older. No kidding, I am one of them. “People believe human touch and the relationships we forge along the way sustain us into our old age with a sense of well-being” according to Michael Sefton, Ph.D., who provides neuropsychological testing for older patients. Along the way the connections we make open our experience and our hearts. As people age, time begins to have greater significance – especially at the end of life. Some people say time moves quicker with age – especially when memory fades. Greater attention to things of importance must include keeping memory and history alive. Ask yourself “what do I value most?” If the answer in your head is money, job promotion, or things like material objects then priorities may be outright misguided. Next, ask yourself how much dignity you might feel if you suddenly were made to feel irrelevant? That is how may older Americans feel as they age and enter the “golden years”. Depression and loneliness are highest among people who are older and have become marginalized. This contributes to the inability to participate in their communities adding to feelings of loneliness and increased risk of functional decline and even early death (Singh, A. and Misra, N., 2009).
Cultures everywhere include senior citizens among the things that are valued and respected although this is not universal. Some believe that with age comes wisdom. Here in America, the population of older citizens will grow by a factor of 2 in the next decade or two. No society should discredit those who are older and may be stepping aside to a younger generation. “Senior citizens, especially those who may be blind, deaf, immobile or senile, contribute less and require more care, which is likely unavailable” according to Discovery Health. The growth of older Americans has far exceed the growth of programs geared to help those in need. Why?
Retirement and aging
For those who are entering the last years of employment a sense of trepidation may confound their decision to retire. The age of retirement has edged upward largely due to financial need. People are constantly speaking out about the need to plan ahead for the retirement years. In a blog I wrote about police officer retirement the success a person feels in retirement depends upon how valued they feel in society (2014). Many believe that older workers are more reliable and bring a higher level of maturity that benefits employers everywhere. Others see the older worker as the greeter at the local box store – someone now irrelevant. The impact of this prejudice adds to a high incidence of depression among people over 65. The rate of poverty among older Americans is greater than 15-20 percent, according to Intergenerational Learning Service based in Illinois. And the rate of grandparent’s who take care of their grandchildren has never been higher. How is this scenario apt to impact human development for years to come?
A fundamental change in attitude must take place toward people who are aging here in America. At the same time, a belief in lifelong learning and personal responsibility for health and well-being will give an older person an equal advantage for those who are aged and wish to continue being relevant.
Singh, A. and Misra, N., (2009). Loneliness, depression and sociability in old age. Industrial Psychiatry Journal, Jan-Jun; 18(1): 51–55.
Sefton, M. (2014) https://msefton.wordpress.com/police-service/the-working-chief-a-job-greater-than-the-sum-of-its-parts/. Blog post, taken November 30, 2014.