Facing Alzheimer’s Together
Posted on Saturday, March 8th, 2014 at 9:53 am by lifemediamatters
Carrie Jackson spent the better part of her twenties caring for her ailing father who was suffering from severe Alzheimer’s disease. As her father’s primary caregiver, Carrie spent years watching his health decline and managing his care.
Henry George Jackson Jr. died in 2012, after nearly three years in hospice care. Carrie currently serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and she is on the Junior Board of the Alzheimer’s Association. She contributed an essay set to be published next month in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.
Why did you choose to share your experiences of caring for your father?
Jackson: Alzheimer’s is the sixth leading cause of death in the United States, and no one knows that. It’s also severely underfunded.
People think it’s a memory disease, but it’s so much more. It’s language, it’s perception, it’s judgement, and it ultimately shuts down the entire body. End-stage Alzheimer’s is non-verbal, requiring total care, involving hallucinations and terrors, and people not being able to move their limbs. It’s a horrible, horrible disease.
Caring for dad really changed my life. I was in my mid-twenties and my friends were dating and going on job interviews and getting married and having kids, and I would always be like ‘I have to leave early to go to the hospital.’ I was his advocate, and he really didn’t have anyone else. So, I feel that I need to share.
What is the hardest part of caring for an individual suffering from Alzheimer’s or dementia?
Jackson: There becomes less and less that the person afflicted can do for themselves. Early-stage is really difficult because they argue with you and hide things. When I first started taking care of Dad, I looked at his check book and I found that he had not paid rent in three months. He was making donations to anyone who would solicit him, so donations to the Republicans, to the Democrats, and even to the Ross Perot Party.
I remember there was a big fight when I had to take his keys away after he failed his driving test for the third time. That was the only time we almost got into a physical altercation.
It was very hard telling him he could not go for walks by himself anymore, because he might not know how to get home. He also had some colorful words that he would use on a regular basis while on the streets of Evanston. He developed an irrational fear of sprinklers, so every time he saw one he would swear at it and at the person who put it there. People didn’t understand that it was the disease talking, not him.
What advice do you have for adult children caring for seriously ill parents?
Jackson: You have to find support, you have to. It sounds so cliche. It helps to relate to someone going through a similar situation. Sometimes you don’t need an answer, you just want someone who will listen to you, someone you can vent to and be like ‘this sucks.’
After witnessing your father’s decline, do you fear Alzheimer’s?
Jackson: Alzheimer’s is my biggest nightmare. I am just absolutely scared of it.
At work we try to create moments of joy for those facing it. I do Alzheimer’s training for the new volunteers, and I tell them that a beautiful thing about the disease is that the person afflicted has no recollection of the past and the future doesn’t mean anything. If you say lunch is in 20 minutes, it doesn’t mean anything. They live and are truly engaged in the moment. I try to make that moment positive; the best thing we can do is make them happy.
Read an except from her essay here
Soup For The Soul: Living With Alzheimer’s
Posted on Thursday, March 6th, 2014 at 8:19 am by lifemediamatters
Life Matters Media was given permission to share an excerpt from Carrie Jackson’s essay set to appear in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. Jackson’s father died from Alzheimer’s disease in 2012, after nearly three years in hospice care. Jackson serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and on the Junior Board of the Alzheimer’s Association. Her essay recounts an afternoon visit to her father in his nursing home.
The Hand that Feeds
By Carrie Jackson
Music is one of my best ways to communicate with him so I start singing to him about Daisy and the bicycle built for two. My pitch and tone are way off, but I don’t care. It’s one of our favorite songs, and after a minute his eyes open. I ask him if he’s ever ridden a bicycle built for two. He says no, and I remind him how he used to put our dog Rusty in the grocery basket of his old bike and give him rides around Evanston. Finally, I get a smile. Then the moaning starts again.
I ask where it hurts: this time, it’s his shoulders. Jeff says he’s already had his pain medicine and we’re waiting for it to kick in. I ask Jeff if the hospice volunteer came today. He says yes; Dad says no. I believe Jeff. I put on some music. Ellington. We’ve changed the words a bit.
In our version, it’s “If you want to get from Sugar Hill to Harlem, you better take the A train.” We sit. His hands are soft. Softer than mine. His arms are splotched with purple and red marks. I take note of a few new bruises and cuts.
It’s dinnertime, and lately Dad has been taking his meals in his room. Jeff brings in some soup. Tomato barley. I stir it, taste it, and scald my tongue. After a few minutes it’s ready and I ask Dad to open his mouth. He does, takes a bite of soup and makes a horrible face but it stays mostly in his mouth. He chews for almost a minute and I wonder how that’s possible. I don’t see him swallow, but the chewing stops. I try with another spoonful, and another. Four more bites and he’s had enough. The bib is covered with spills. I wipe his mouth and nose. I haven’t seen him eat this much in months. Jeff brings in his plate.
Chicken and mashed potatoes. I know Jeff usually ends up feeding him Ensure, yogurt, and dessert—that seems to be all Dad will take these days. But I’m here, so we try for solid food and whole nutrition. And he eats. It surprises even me, but his eyes are closed and he’s reluctantly accepting every bite I bring to his mouth. Chew, chew, drool, chew, spit, moan, chew, swallow.
With each bite I feed him, I am reminded of what his doctors and the hospice team keep saying—as long as he has nutrition and is able to take food, he could survive for quite some time. And I think of the pain he is in. And I think of the loneliness in his eyes when I’m not there. And I wonder if what I’m doing is helping or hurting. He is chewing, swallowing, digesting. He is surviving. But is that what he wants? Is it worth it?”
Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias will be released April 22, 2014.
Diane Meier: Palliative Care Improves Quality Of Life, Reduces Medical Spending
Posted on Thursday, December 5th, 2013 at 5:21 pm by lifemediamatters
Half of older Americans visit emergency departments in their last month of life; 75 percent in last six months of life
Palliative medicine helps improve quality of life and reduces unnecessary spending on emergency care for the chronically ill, said Dr. Diane Meier, director of the Center to Advance Palliative Care and a professor of medical ethics at the Icahn School of Medicine at Mount Sinai. Meier was the keynote speaker for “Palliative Care: A Major Paradigm for Care Coordination,” a conference presented by the Illinois Hospital Association in Naperville Thursday.
Meier opened her lecture with the true story of an elderly couple struggling without palliative support:
Mr. B is an 88-year-old man suffering mild dementia and admitted to the hospital via the emergency department for management of back pain due to spinal stenosis and arthritis. His pain is an 8 on a scale of 10 upon admission– he receives 5 grams of acetaminophen (Tylenol) each day. He has been admitted three times in two months for pain, weight loss, falls and altered mental status due to constipation. His 83-year-old wife is overwhelmed.
“He hates being in the hospital, but what could I do? The pain was terrible and I couldn’t reach the doctor. I couldn’t even move him myself, so I called the ambulance. It was the only thing I could do,” Mrs. B told Meier.
Meier pointed out to an audience of palliative care nurses and other medical professionals that among Medicare enrollees in the top spending quintile, nearly half have chronic conditions and functional limitations, just like Mr. B. Most of the costliest 5 percent of Medicare enrollees (61 percent) suffer from similar conditions. Nationally, spending on dementia-related services totaled nearly $215 billion in 2010.
“The emergency department has become the modern death ritual in the U.S.,” Meier added, because half of older Americans visit the emergency department in their last month of life, and 75 percent do so in their last six months.
According to Meier, a palliative care strategy with geriatric support could have helped Mr. and Mrs. B manage symptoms more adequately, and it could even have helped them avoid some unnecessary hospitalizations. “What we need to do is get out of our taxonomy silos, specialty driven silos,” Meier said. “Because of the concentration of risk and spending, palliative care principles and practices are central to improving quality and reducing cost.” The costs of Mr. B’s four most recent hospital visits totaled several hundred thousand dollars. But the Bs did not do anything wrong, Meier said, because the medical system encouraged their situation. What else could they do?
Meier suggested more home and community-based services to help reduce the number of seniors who find themselves in situations like the the couple– lacking an able-bodied caregiver and without an easily accessible medical provider. “Staying home is concordant with people’s goals, she said. “Based on 25 state reports, costs of home and community-based long term care services are less than one-third the cost of nursing home care.” For example, in a study published in the journal Health Affairs, researchers determined that simply having meals delivered to a senior’s home significantly reduced the need for a nursing home.
As HealthDay News reported: “If all 48 contiguous states increased by 1 percent the number of elderly who got meals delivered to their homes, it would prevent 1,722 people on Medicaid from needing nursing home care.” Still, the U.S. lags behind every other industrialized nation when it comes to the ratio of social to health service expenditures.
Hope Brown, a nurse with the Carle Foundation Hospital in Urbana, IL, said she appreciated Meier’s attention to the costs of care and the need for social support. “It happens every day, situations like the Bs. We definitely need to get people into social services earlier, even meal delivery,” she added.
Overall, Meier urged medical professionals to “treat the person, not the disease.” Since most patients prefer to live at home and remain independent, (76 percent rank “independence” as most important, followed by pain and symptom relief, and staying alive last) palliative medicine should reflect those wishes.
The Accidental Caregiver: An Interview With Gregor Collins
Posted on Monday, December 2nd, 2013 at 8:49 am by lifemediamatters
When Gregor Collins began caring for noted Austrian Holocaust refugee Maria Altmann nearly five years ago, he did not expect his experiences to evolve into the most profound and intimate relationship of his life. The aspiring actor/producer also did not foresee a critically acclaimed memoir detailing their unique bond, or his involvement in A Good Day To Die- an upcoming feature film exploring end of life issues with a comedic perspective.
Now 37, Collins spoke to Life Matters Media about his relationship with Altmann and his caregiving experiences. His first book, ‘The Accidental Caregiver,” was published in 2012. Altmann died in 2011 at age 94 with complications associated with dementia. She is remembered for her successful legal campaign against the Government of Austria to reclaim five family-owned paintings by the artist Gustav Klimt; the paintings were stolen by the Nazis during World War II.
How did you become a caregiver for Maria Altmann?
I was never drawn to it. Actually, it was never something I considered doing. I was just living this selfish life in Los Angeles and pursuing acting pretty heavily. A good friend of mine called me and said, ‘I’m taking care of this woman from Austria and she’s awesome, you have to meet her.’ I sort of blew him off a bunch of times, but then he told me that the family really wanted another caregiver. I finally agreed to meet her, and my life changed right there. It was like the first time in my life I cared for somebody besides myself, really.
I was definitely not a perfect caregiver. I didn’t have any skills or know anything about medicine. All I had was a good heart, and she was unbelievably amazing. She brought the best out of me. I was hired as a caregiver, but I became her companion- someone she wanted to have around to talk and laugh with. I wanted to be there every day. She was like a mother, a grandmother, a friend, even a lover from another lifetime.
Los Angeles is a lonely place, so it was nice to talk with her about art, the weather– she satisfied me in a romantic way, like we wished we could have met 70 years ago. We just clicked, you know.
What was the most difficult part of caring for someone?
Because I really fell in love with her, it was difficult to see the aging. It is really difficult to see someone you love and know that they won’t be around. That’s the hardest part.
Whenever I got emotional around her, I would leave the room. There were many occasions she would say something so sweet to me. One time we were driving and she said to me, ‘You’re going to miss me. I’m going to miss you.’ I started crying out the window, and she never knew. Towards the end, I cried in front of her for the first time, and I felt guilty- like she would know she is going to leave soon. But she almost giggled at me because she thought it was so cute.
How did you interact with Maria when she was feeling ill?
She developed some dementia towards the end. When I met her a few days shy of her 92nd birthday, she was right on the ball. After the Klimt case, her oldest son tells me that she was sharp as a tack until 90. She would talk to reporters in Italian and French and German, and would really get the media laughing and on their toes. After the paintings came in, she felt like she could wipe her hands and just be an older woman. It was never close to the point where she couldn’t recognize me, but I could leave the room and come back- and she would think I was coming back for the first time.
Often times with Maria, I saw firsthand how exposure to love and youth were more powerful than medicine. Instances where she was in pain or not her usual effervescent self, I would play her an opera, or I would walk in the room with a smile. These little things brought more life and joy and love to her face and body. The notion of ‘love is more powerful than medicine,’ I stand by it.
Also, I read that when it comes to Alzheimer’s and dementia, all the top doctors and medical professionals agree that medicine is not the most powerful or effective means to fight them– keeping minds active and stimulated is. I felt that was part of my job to keep her mind scintillated, and I really believe this extended her life and kept her dementia at bay as long as humanly possible.
Why did you choose to write ‘The Accidental Caregiver’?
I kind of wrote it because I felt like it was one of the most important things I could do in my life. I needed to preserve her legacy and our relationship. I also wrote it because I was so emotional, and it was an intensity. It was just me alone in a room at night crying or laughing about the day. It was really touching and surprising when people started to connect with it. I never expected the response.
Caregiving in America: How Do We Support Those Who Care?
Posted on Saturday, November 16th, 2013 at 4:33 pm by lifemediamatters
Family caregivers are the glue between patients, physicians and medical facilities, said geriatrics expert Dr. Cheryl Woodson during “Caregiving in America,” a conference presented in downtown Chicago this week by Washington Post Live.
“In the new health care paradigm, the caregivers have to be the glue, because the communication systems are not there yet. When you transfer from one facility to another, it is the caregiver who has to be the institutional memory,” Woodson said. “There are specific questions to ask and ways to organize that information.”
Robyn Golden, director of health and aging at Rush University Medical Center, said she is continually “shocked” by how often she meets caregivers who do not identify themselves as such. “The place to catch the invisible caregiver is either in the church basement or in the health system, because many caregivers don’t say, ‘I’m a caregiver.’ So it’s really important we create a safety net to find them,” she said. Caregivers, Golden suggested, need to be asked about how they are feeling and about their overall health.
Golden said it is especially difficult for medical providers to engage with family caregivers as equal partners, partly because physicians and nurses are often overwhelmed with patients and unaccustomed to dealing with caregivers. The result is that caregivers can feel unwanted or invisible to medical providers, and they often miss out on their loved one’s discharge orders or changes in treatments.
According to findings published by AARP’s Public Policy Institute, almost half of family caregivers performed medical or nursing tasks for their recipients facing multiple chronic physical and cognitive conditions in 2012. Nearly 80 percent of family caregivers who provided medical or nursing tasks were also managing medications, including administering intravenous fluids and injections. ”We are asking caregivers to do things that an RN would be nervous to do on their own,” Golden said.
The answer to the caregiver crisis, Golden added, is taking time to teach caregivers their tasks and determine if they even have the capacity to care, as many caregivers still work full-time jobs or are raising young children.
Woodson maintains that a greater safety net of home services and support for caregivers, including assistance for things like placing catheters or preparing infusions for antibiotics, is desperately needed.
When asked what advice she would give to adult children caring for their parents or grandparents, Golden told Life Matters Media: “They should know what they can do and what they can’t do, and then work through any guilt they may have. They should also take advantage of caregiver resources and area agencies on aging.” Golden said many caregivers live like a “club sandwich,” caring for their children, parents and even grandparents simultaneously.
But the best thing for families, Golden said, may be early conversations about aging and end of life preferences. “There is a lot of denial, none of us want to think about getting older. People don’t discuss these issues until a crisis,” she said. “But the media can help change that.”
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