Here are 2 articles about caregivers in relationships.
Dec. 2, 2016 "Overcoming the shame and loneliness of the caregiving spouse": Today I found this article by Jann Lee in the Globe and Mail:
My husband and I were at a restaurant with my family recently when I noticed a blank look on his face. His body was frozen and his right hand was gripped around his spoon.
I called his name softly and placed my hand around his. He remained still and a wave of anxiety overcame me. Although I’ve witnessed many of his seizures before, the level of discomfort never subsides.
My sister noticed me holding my husband’s hand. “Everything okay?” she mouthed. I nodded, but she knew instantly what was going on.
My mom also sensed a change in the table dynamics and looked at my immobile husband. “What’s wrong? Are you okay?” she asked, a bit too loudly. My sister shushed her and changed the subject. My other family members seemed oblivious, eating and chatting among themselves. When my husband regained consciousness after a few minutes, I gave my sister a look of gratitude for intuitively allowing us a moment of privacy, a reprieve from questions and looks of concern.
My husband’s seizure disorder has permeated our relationship from the very beginning. When I first met him five years ago, he was candid about being diagnosed with epilepsy at 15 after undergoing brain surgery to treat a serious bout of meningitis.
The ramifications of his invisible condition didn’t sink in until much later though, since on the outside, my husband was far from what I imagined a person with a chronic illness to be.
He played hockey recreationally and maintained a stable job at a bank that required him to fulfill complex tasks. The notion of him entrapped in the clutches of a disorder seemed incomprehensible until a year after we met during a cottage trip with a group of friends.
I was jolted awake by his scream, which was followed by violent spasms that rippled through the bed.
I turned on the lights and found my husband (then my boyfriend), unconscious and overcome with convulsions.
I screamed for help and his friends rushed into the bedroom. Most, like me, were frozen in shock. One tried to snap my husband out of the seizure by shaking him: I learned later that it’s best to leave someone alone and let the seizure run its course, but who could blame his friend?
We were all stupefied and had no idea what to do. Although they had known him longer than I had, most of them had never witnessed him having a seizure of that magnitude.
Crying hysterically, I called his parents, who were sleeping miles away. His mother calmly told me that he should be fine. Seizures, she said, only need medical attention if they continue past five minutes. The episode lasted less, but it felt longer to me. My husband eventually stopped shaking and we all went back to sleep.
The next morning, I acted like nothing happened, ignoring breakfast conversation about the incident. Our friends commented about how scary it was and some couldn’t help but sneak glances of pity at me. It made my insides curl with embarrassment and frustration.
Much of that was about my husband’s vulnerability – the mortality rate among those with epilepsy is higher than in the general population, and epilepsy is related to other causes of death, including traumatic brain injury, unexpected drug reactions and cardiac arrhythmias.
But I was also in emotional turmoil about my responsibilities, and vulnerabilities, as his partner.
After dating for a few years, we moved in together. Soon after we got engaged, his seizures increased in frequency and he began experiencing both convulsive and non-convulsive seizures a few times a month. I started to become anxious about how his illness would affect our marriage, wondering if I could really handle the responsibility of being his wife and potential caregiver.
Ultimately, I decided to make that lifelong commitment because, as simplistic as it sounds, my love for him outweighed my trepidations over the illness and its weight on our relationship.
But, as I had sensed during our engagement, our marriage has undoubtedly been affected by my husband’s epilepsy.
I’ve had to barrel through my fear during an emergency, only to feel overcome by helplessness after seizures, wondering whether I could have prevented them.
I became angry over the inconveniences that came with my husband’s condition, such as his inability to drive or his dependence on daily medication.
I nagged him about taking his medication and shouted in anger if he denied having a seizure after regaining consciousness.
I pestered his stoic neurologist about how safe it was for him to ride a bike home from the train station at night. The doctor’s response was a benign statement about how life is uncontrollable and that even a person without epilepsy can hurt themselves from falling off a bike. This placid, almost indifferent, statement gave me little comfort.
My husband’s illness was something that I couldn’t control, and my resentment over this grew, followed by more anxiety, and then guilt over all of these negative emotions.
Chronic illness can bring great challenges to relationships, says Karen Fergus, an associate professor of clinical psychology at York University. “Although the disease is located in one person’s body, the illness is a responsibility that’s shared by both partners in the relationship,” she says.
The partner, she says, is as important as the person with the illness.
Communication is key to any relationship, but even more urgent for couples managing the difficulties of an illness. “One of the traps that couples can fall into is protective buffering, when each partner is not disclosing important information because they don’t want to burden each other,” Fergus says.
Such behaviour is counterproductive, because by withholding thoughts and feelings, both caregivers and their partners can end up feeling isolated and lonely in the relationship.
After years of avoiding conversations about how his illness affects our relationship, my husband and I finally spoke frankly this past fall, before his admission into the epilepsy monitoring unit at Toronto Western Hospital for a two-week stay. His doctor had concluded that my husband’s medication was not fully effective at controlling his seizures and wanted to see if he’d be a candidate for a new laser surgery that removes scar tissue from the brain.
My husband told me how scared he was about the uncertainty of the treatment: Even if he qualified for the surgery, the side effects are still unclear. I shared the difficulties I’ve faced witnessing his seizures over the course of our relationship.
While it was difficult to speak about our vulnerabilities, we both felt a sense of relief after finally revealing our candid emotions to each other.
During his stay in the hospital, I no longer felt compelled to hide our struggle. I had closed myself off from everyone, not just my husband, but friends and acquaintances, avoiding questions that would lead to me disclosing his epilepsy. I realized that shame has prevented me from seeking the support I needed – shame about his illness and shame about my guilt and negative reactions about having to take care of him.
Fergus says shame around chronic illness is more likely if the illness experienced has any associated cultural stigma. In my case, I’d never met anyone with epilepsy before my husband. My lack of exposure led to my discomfort, but when I visited my husband in the monitoring unit, I saw that many people and families also grapple with the outcomes of epilepsy.
There was a 24-year-old woman who had just graduated, a young man who had brain surgery after getting hit by a truck and a volunteer who testified that the laser surgery worked in alleviating his seizures. Their loved ones visited them daily, patiently waiting for updates from the doctors. I realized then that we’re not so alone after all.
Aug. 14, 2017 "The lonely business of caregiving": Today I found this article by Paula Span in the Globe and Mail:
Looking after someone can make a social life difficult, but even modest-sounding interventions can reduce the sense of isolation
For years, Marcy Sherman-Lewis went to a beauty salon in St. Joseph, Mo., every few weeks for a haircut and highlights.
It had become something of an ordeal to prepare her husband, Gene Lewis, for this outing; he has Alzheimer’s disease, at 79, and helping him shower and dress, insert hearing aids and climb into the car was a very slow process.
But she could no longer leave him at home alone. And once at the salon, “he just sat, watched TV, slept – didn’t bother anybody,” said Sherman-Lewis, 62. Her stylist kindly trimmed his hair, too.
Then last month, the salon owner took Marcy Sherman-Lewis aside. “Marcy, he makes my other patrons awfully uncomfortable,” she said.
“I was dumbfounded,” Sherman-Lewis said. “It’s okay for other people’s little grandchildren to be running around sometimes. What am I supposed to do, keep him in a crate in the car?”
Like so many caregivers, she has discovered that along with the abandoned career, the hands-on tasks, the medical scheduling, the insurance tussles and the disrupted sleep, she faces another trial: social isolation.
“It’s hurtful,” she said. “You need friends more than ever.” But where are they? Betsey Brairton, 48, cares for her mother, Sue, in rural Olean, N.Y. The elder Brairton, 79, suffers from spinal stenosis, arthritis and lingering damage from a stroke, so she has limited mobility. “We hardly go anywhere and nobody comes here,” her daughter said. When she does leave for an hour or two, she’s afraid to put down her cellphone.
Although a couple of friends occasionally invite her out for dinner, “I can’t commit to anything, in case my mom is having a bad day,” Brairton said. She has begun to worry that when she does spend time with others, her narrowing life leaves her with nothing interesting to say.
Those who work with caregivers know this phenomenon well, especially when the cared-for person has dementia, a particularly arduous responsibility.
“Caregiving is done with a lot of love and affection, but there’s a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”
Sometimes, caregivers isolate themselves. Barbara Moscowitz, senior geriatric social worker at Massachusetts General Hospital, hears clients lament that with a loved one whose dementia-related behaviour can be startling, venturing out in public creates more apprehension than pleasure.
“They say, ‘I’m exhausted trying to explain to people why she’s doing what she’s doing, why they shouldn’t be angry or afraid,’ ” Moscowitz said. “It’s just easier to stay home.”
Yet a habit of avoiding others – or watching them avoid you – collides with a growing body of research showing how damaging isolation and loneliness can be. They are associated with a host of ills, including heart disease and stroke. Among older people, isolation is linked to depression, even higher mortality. Lonely old people, Dutch researchers have found, are more apt to develop dementia.
We’ve long thought of these factors as dangers for the people being cared for. But they also imperil caregivers, who are often older adults as well.
Years of caring for his wife, now deceased, who had early onset Alzheimer’s, left Les Sperling, 65, so despondent that “I’d stay in my room in the dark and sleep all day,” he said. “I didn’t want to come out.”
Sperling, of Lake Worth, Fla., went into therapy and took antidepressants until he felt able to function again.
We know something about how to help caregivers feel less alone. Researchers have shown that even modest-sounding interventions can reduce their sense of isolation and improve their mental and physical health.
Mary Mittelman, director of the Alzheimer’s disease and Related Dementias Family Support Program at NYU Langone Health, has been conducting such studies for years.
With federal and state grants, the program – involving several counselling sessions, followed by support groups and phone access to counsellors as needed – has inspired others that have been adopted throughout New York and in several other states.
“The support is what leads to less stress, less depression, better health and delayed nursing home admissions,” Mittelman said. Interestingly, her team has found that “instrumental support,” in which others actually help with tasks, has less impact than emotional support.
“Having someone outside who is paying attention and who cares is more important,” she said.
Other initiatives, such as Savvy Caregiver and REACH, have demonstrated similar
effectiveness. And since getting out of the house can be a struggle, program developers are also testing online versions.
Caregivers already gather in Facebook groups and on websites, but experts have mixed feelings about online chats and groups. “They provide anonymity, and that may permit more honesty,” said Wexler Sherman, the gerontologist. “Sometimes you need to vent at 2 a.m.”
“But we need skills,” she said. “Being a caregiver is a job.” Online, is the information passed along accurate and useful? Is there a trained, knowledgeable moderator?
“It’s important to have a leader to monitor and validate,” said Moscowitz, who leads several support groups for Mass General employees and for community members. Besides, “there’s nothing like a real person to hug you.”
On other fronts, we’re seeing more efforts to provide convivial social and cultural events for both people with dementia and their caregivers: Memory Cafés, museum programs, choruses.
The Dementia Friendly America campaign aims to make whole communities – including police forces, churches, restaurants and hair salons – more knowledgeable and accommodating.
Individuals can also play a role. It’s too easy to let caregiving friends slip off our radar with a general call-if-you-need-anything.
“Don’t put the pressure on the caregiver to tell you what to do,” Moscowitz said. She suggests asking what would be helpful, making a list of specific tasks and parcelling out assignments.
“Don’t invite me for lunch – you know I can’t go,” Sherman-Lewis said. “Just bring a pizza and a bottle of wine and come by.”
Although tangible help counts – and let’s acknowledge that an aging country can’t rely solely on families, friends and volunteers to provide everything dependent elders need, however well supported they are – so do regular texts, calls or visits. They help keep caregivers from feeling invisible and forgotten.
Counsellors in the NYU program once had the friendly inspiration, since they kept caregivers’ information in their database, to send clients a card on their birthdays.
It sounds sweet, if trivial. But often, Mittelman said, “they’d call up, so grateful, and say, ‘You’re the only one who remembered.’ ”
My opinion: This part stood out to me:
"Although a couple of friends occasionally invite her out for dinner, “I can’t commit to anything, in case my mom is having a bad day,” Brairton said. She has begun to worry that when she does spend time with others, her narrowing life leaves her with nothing interesting to say."
You don't have to talk about your life. You can talk about the news and current events, and TV and movies. A lot of people have things to say about that.
This week's theme is about marriage:
"Open marriage, open heart"/ "Open heart"
"The Long Haul" (bipolar marriage)/ "My depression doesn't stunt my capacity to love"
My week:
Oct. 8, 2021 "Monkey sounds, slurs and strobe lights target a Black family — but police say they're powerless to stop it": Today I found this article by Marquise Francis on Yahoo News. This gets me angry. Here's an excerpt:
Jannique Martinez says that since July, her family has had to endure recordings of loud, screeching monkey noises and recordings of racial slurs directed toward their Virginia Beach, Va., home every time they leave or enter their residence.
Martinez — who is Black — claims her neighbor has set up motion sensors to detect the family’s movements and harass them. But police, citing no physical confrontation or verbal threats, have said there is nothing they can do.
This week, following national news attention, Martinez said the loud noises coming from her neighbor’s home have finally stopped. But, she says, the neighbor continues to display dizzying strobe lights.
“I feel like it shouldn’t have to be violent to be against the law,” Martinez told Yahoo News. She also says that the neighbor still has eight cameras pointing at her home.
“This isn’t about me,” Martinez said. “Racism affects so many people in this country. ... No family should have to live with this kind of harassment.”
Other neighbors have also come to Martinez’s defense. Nine complaints have been filed against the neighbor, mostly for noise violations and parking complaints, according to WAVY News. So far, however, the neighbor has not been charged with a crime.
My opinion: At least this is on the national news and the loud noises stopped, and that the neighbors came to Martinez's defense.
This reminds me of the movie Lakeview Terrace, but it's the Black man who is harassing the interracial couple who lives next door.
Also, this is another reason why you shouldn't own a home and be renting. What if you have a really bad neighbor? It's a lot easier to move away when you're renting.
I wrote about the movie here:
Tracy's blog: Faster/ Lakeview Terrace/ The Saga of the Jack of Spades (badcb.blogspot.com)
Oct. 11, 2021 Trevor Daniel: I have discovered this singer a couple of weeks ago. I was on my tablet and listening to the Stingray Hitlist channel on my TV and this song "Falling" came on. After I heard it I decided to check out the video.
I like the chorus:
But when I saw you, I felt something I never felt
Come closer, I'll give you all my love
If you treat me right, baby, I'll give you everything
I then started listening to all his songs. This is pop music. I find that most of his lyrics seem kind of sad and deep.
Thanksgiving: My family made a roast beef dinner on Sun. The roast beef was from Superstore and it wasn't really good quality.
Superstore on strike: We then discussed about Superstore going on strike.
Marineland closing down: I also brought up this:
Oct. 12, 2021 "What does the future hold for Calgary's empty office towers?": Today I found this article on CBC news. A lot of oil and gas companies closed down in 2015, and then the pandemic came and there is even more empty offices. The new ideas:
If you ask architect Jonny Hehr, the city's downtown vacancy problem is actually rife with possibilities.
Hehr, with Gibbs Gage Architects, is behind a project to reimagine a former oil and gas office tower as low-income social housing — saving the structure and bringing more people into affordable homes downtown.
"We really have to rethink how we leverage the buildings and the infrastructure that we already have and turn it into the metropolitan city that Calgary always wants to be. To do that we have to have life in our downtown core after 5 o'clock," he said. "The adversity of it breeds creativity and if you don't have that problem then you don't have the creativity to solve it."
One slightly more unusual possibility could be vertical, urban farming.
Travis Kanellos with Ontario-based Elevate Farms says former towers could be turned into automated, multi-storey greenhouses that would allow for fruits and vegetables to be grown year-round.
"If you have office space that is dwindling from a usage standpoint and we can flip in some farm-equivalent product out of there, I think that is a pretty useful scenario," he said.
Oct. 14, 2021 COVID vaccine ID: I went to the Capilano registry when they opened so I could get this. My mom told me I had to get this, because my 2 pages of COVID shots wouldn't be valid when Nov. 10, 2021 comes.
I called ahead, and they said I should come in on a weekday morning when it's not busy, because it will be very busy on Sat. morning. I was 1 of 6 people that came in.
Capilano mall:
1. Reitman's- the store permanently closed down.
2. Ardene's- " ".
3. Halloween Craze: This store replaced where Ardene's was.
4. Four 20 opened.
5. Dollarama- I checked out that store.
6. Winners- I went there.
7. Wal-Mart- I went there.
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