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.
Nurse Prosecuted For Murder After Allegedly Pulling Life Support
Posted on Monday, March 3rd, 2014 at 2:38 pm by lifemediamatters
A Mississippi registered nurse is facing charges of depraved heart murder, according to the state’s attorney general. April Renae Grissom, 28, is accused of turning off machines that were helping to keep a 77-year-old patient alive at the medical facility where she worked.
Attorney General Jim Hood said in a news release that Grissom turned herself in Wednesday, after she was indicted by a Lamar County grand jury. Under Mississippi law, depraved heart murder is an action that demonstrates a “callous disregard for human life” and results in death. If convicted, Grissom could face up to life in prison.
Grissom was booked at the county jail under $10,000 bond.
According to court documents provided to Life Matters Media: While working as a registered nurse at Wesley Medical Center on March 26, Grissom entered the room of the patient without medical orders or “clinical inclination” and turned off the dialysis machine, the amiodarone drip, and decreased the norepinephrine and phynelephrin drips causing death. The victim’s name was redacted.
Prosecutors are seeking an enhanced penalty due to the victim’s age and impairments. Grissom was set to be arraigned Monday, but waived it, according to the attorney general’s office.
“This is a matter that involves an individual who was an employee of Wesley Medical Center, but has not worked at the hospital since April 2013. The hospital has cooperated with local law enforcement in their investigation,” said Wesley Medical Center in a statement to LMM.
Older LGBT Hispanics Face Discrimination, Loneliness: Part Two In Series
Posted on Thursday, February 27th, 2014 at 9:46 am by lifemediamatters
The National Hispanic Council on Aging (NHCOA) released the first report of its kind highlighting the unique status of Hispanic lesbian, gay, bisexual and transgender older adults. The organization plans to use their findings in recommendations to legislators and health care providers.
Throughout 2012, researchers interviewed seniors, caregivers and service providers to better understand the experiences and challenges facing this aging population. Services & Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (SAGE) collaborated on the report.
“The rapid aging of the population presents our country with the opportunity to embrace diversity as it appears at all stages of life,” said Dr. Yanira Cruz, NHCOA president and CEO. “Our hope with the In Their Own Words: A Needs Assessment of Hispanic LGBT Older Adults report is that we can be an active part of the necessary paradigm shift that needs to take place so that we can achieve a stronger, golden America for all, including LGBT Hispanic older adults.”
Although family support is one of the most desirable relationships for older Hispanics, many in the LGBT community say their family ties are broken. Participants expressed feelings of social isolation within their families because of their sexual orientation or gender identity.
“Acceptance is very difficult among us Latinos, maybe because of our nature,” said a participant. “When a mother divorces and she wants to remarry, the children won’t accept it. The same thing is with homosexuality. The thing is to orient people bit by bit and find ways to prepare oneself, introduce this to each person and see if they are accepting.” Unfortunately, many LGBT seniors find themselves jumping from couch to couch to avoid living in shelters; others become homeless from lack of support.
The participants who do not face prejudice from their family said they still face problems of rejection and emotional and psychological abuse. According to another participant: “In my opinion, the rejection is more from society than from the family. Of course, there are exceptions, but society’s rejection is worse… It is the one that marginalizes.”
Although almost all participants were passionate about causes ranging from same-sex marriage to affordable housing, many said they do not volunteer for fear of rejection and a lack of knowledge about their rights.
Others offered their mixed experiences with organized religion. Some said they attend church regularly; others said they do not believe in organized religion and cultivate their own spirituality privately.
“Unfortunately, I don’t believe in any religion as an institution. In our community, certain people were altar boys when young. But when they grew up, they were thrown out of these same churches and that was traumatic,” said an older adult. Some said they are still discriminated against by members of specific religious institutions, such as members of fundamentalist Protestant churches.
The report focused more on gathering interviews than on producing raw data and figures. Jason Coates, a public policy associate who helped develop focus groups for the report, told Life Matters Media more research is needed. “When we were conducting this study we found there was no research on Hispanic LGBT older adults. This is an important report and serves as a foundation to researchers on where to look next.”
Holly Returns With Great News: Intimate Desires Reawakened After Double Mastectomy
Posted on Tuesday, February 25th, 2014 at 8:54 am by lifemediamatters
“She stood and faced me, and her hands reached out until they came to rest on my scars. It was like her touch was both fire and ice, but I didn’t pull away. There was no turning back. I was finally doing what I should have done two years ago.”
Do you remember my friend Holly? She is a 43-year-old graphic artist who shares a home with Jean, her wife of ten years, and their teenage daughter, Annie. She is also living with breast cancer. Holly had a double mastectomy three years ago and she has been dealing with some big-time body issues post-surgery.
The mastectomy scarred her both physically and psychologically. These scars have had a tremendous impact on her intimate life with Jean. In my earlier column, I recounted a meeting in which we tried to formulate a strategy to overcome these emotional and physical obstacles.
I asked Holly if she had ever taken the time to grieve the loss of her breasts. I suggested that she ask Jean to hold her while she mourned for what is no longer hers.
I recommended that the Holly and Jean begin to explore what is possible in their sex life together now. I suggested they avoid comparing what they are able to do now with how things were in the past.
I gave Holly two exercises: 1) spoon breathing — to rebuild a sense of confidence about being physically together with Jean again. And 2) guided-hand touch — to reestablish a threshold for what is possible between them.
I asked Holly to get back to me in a few weeks and let me know how things are going.
An ebullient Holly returned, and recounted the couple’s past weeks.
“On my way home from your office, I was trying to work things out in my head- what should I tell Jean? I couldn’t just blurt out all the stuff you and I talked about,” Holly said. “Besides, I was afraid that Jean would pitch a fit about me airing our dirty laundry in public. I thought maybe if I told her that I had a headache, she would leave me alone.”
As a matter of fact, Holly did have a headache, mostly as a result of all the anticipation. She had so much fear and shame bottled up inside for so long, she didn’t know what or how would come out. She was afraid she would say the wrong thing and make matters worse.
When she entered the house, Holly reported heading straight for the bedroom- but Jean cut her off at the kitchen, inquiring what was wrong.
“I was shaking all over,” she said. “My legs felt like rubber, and I began to cry. I wound up slumped on the floor where my crying became a wail.”
Understandably, Jean was freaked. She had never seen Holly in such a state. She helped her to her feet, and the couple stumbled to the bedroom to collapse.
However, Holly began to undress- until that point, a signal for Jean to exit.
“I haven’t let her see me naked since the surgery,” Holly said. “She was afraid to leave me alone in my hysteria, but she also didn’t want to embarrass me more. She got up to go, but I could feel her anguish.”
By that point, tears streamed down Jean’s face too. But Holly reached for Jean’s hand and pulled her down next to her. She began to undo the buttons of her top, turning away from Jean as she undid her bra. Holly was frozen in place.
“I was never so scared in all my life,” Holly told me. “Jean stroked my back with her fingers, and the caress was so gentle that it could hardly even be called a touch at all. But for some reason, it calmed me.”
As she turned toward Jean, Holly brought her hands to her face in shame and began to sob harder.
“She stood and faced me, and her hands reached out until they came to rest on my scars,” Holly said. “It was like her hands were both fire and ice, but I didn’t pull away. I was finally doing what I should have done two years ago.”
When Holly was finally able to speak, her first words were “they’re gone.”
She took Jean in her arms and the two kissed as lovers for the first time in three years.
Holly’s story and her courage were stunning, and she now reports noticing a renewed interest in living.
“I don’t mean just going through the motions- I’ve done too much of that already,” Holly said. “I want to live and be present for whatever life holds for as long as it is available.”
This new focus includes being aware of her own limits; when Holly is tired or in pain, she knows she needs to acknowledge it and rest.
I believe Holly is a role model for anyone facing a similar situation.
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