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
Canada: A National Dialogue About End Of Life Care
Posted on Saturday, February 22nd, 2014 at 8:05 pm by lifemediamatters
Maclean’s newsmagazine and the Canadian Medical Association hosted the first in a series of discussions about the importance of end of life care Thursday in St. John’s, Newfoundland. A panel of health care experts touched upon the importance of palliative medicine for the terminally ill and the lack of advance care planning across the nation.
“Nobody wants to talk about death, but we all know we are going to face it,” said Dr. Louis Hugo Francescutti, president of the Canadian Medical Association. Francescutti recounted the recent decline and death of his mother to colon cancer, an event he said taught him how to die. “When she got into what she would call ‘heaven,’ a palliative care facility in the West Island of Montreal, she kept saying, ‘is this possible?’” Francescutti said the staff supported his mother by also supporting her family.
“She always used to grab my hand and say, ‘feel my skin,’” he said. “The staff was so attentive to making sure she always had lotion on her hands. She left feeling that she had come to the final chapter in a place that was taking care of her needs. That is palliative care.”
Dr. Susan MacDonald, president-elect of the Canadian Association of Palliative Care Physicians, offered her experiences caring for seriously ill patients. “People think that I look after the dying, but everybody I look after is living,” she said. “I work to provide really thorough care for patients, so that I can help manage the symptoms they are having, both the physical and spiritual. It is not a sad job, it is a wonderful job.”
MacDonald said one of the biggest misconceptions about palliative medicine in Canada is that it involves only “handholding” accompanied by aggressive medicine.
However, most Canadians do not receive such compassionate care at the end of life, because palliative care is only available to some 30 percent of Canadians that need it. Although the vast majority of Canadians say they believe it is important to have clear conversations with loved ones about the care they want at the end of life, only a small minority have done so.
“It is a conversation that we need to have, but it is also a conversation we need to have universally, not just with persons who have disabilities or are ill,” said Jeannette Holman Price, past president of the Brain Injury Association of Canada. In 2005, her daughter was run over and killed by a snow removal truck; her son was seriously injured. Price said that tragic event inspired her to spread the message of the importance of advance care planning.
“I lost a child, and I lost her quite suddenly, so advance care planning wasn’t an issue for us, she was taken from us without warning,” she said. “But since that time, I have witnessed other families who had to bury their young loved ones, and they’ve had the opportunity to plan, to discuss with their loved ones what is important to them, what they wanted in care. All of us should be planning.”
Posted on Saturday, December 28th, 2013 at 10:15 am by lifemediamatters
“I’m not used to such a frank discussion about sex. I’m more comfortable with the locker room bravado that passes as sex talk for us guys. At least in that situation, I don’t have to be honest.”
Michael is 52. Four years ago, he was diagnosed with multiple sclerosis. In the past two years, his disease process has escalated to the point in which he has become confined to a motorized wheelchair. Recently, he has had multiple MS-related setbacks that have kept him bedridden for several weeks at a time.
Things have become so difficult that several months ago, Michael was forced to sell his once-thriving law practice. The few hours of work he could manage each week there proved more frustrating than fulfilling.
Mike is often depressed. He continually repeats his self-defeating mantra: “I’m not half the man I used to be.” The superhuman support of his second wife Maryanne, his son Kyle and his beloved Seattle Seahawks are the only things that prevent Michael from killing himself.
The first time I met this couple, an exasperated Maryanne tearfully reported how Mike’s smoldering rage and bouts of sullenness terrorize the family. “I love him, but he’s gotta get off his pity-pot or I’m gonna walk, and take Kyle with me.” Mike sheepishly acknowledged his disruptive behavior. His ruggedly handsome face often distorts with shame. “It’s not me. It’s this damn MS. I just can’t seem to get it together. I feel like such a failure.”
When Mike and I have some time together, I broach the topic of sex. Mike blanches. I start by asking him some very pointed questions about his intimate life with his wife.
“I’m not used to such a frank discussion about sex. I’m more comfortable with the locker room bravado that passes as sex talk for guys. At least in that situation, I don’t have to be honest. This is very intimidating.
I don’t want to talk about this because I’m afraid you’ll want to know how a gimp like me does ‘it.’ I would have to tell you that a gimp like me no longer does ‘it’ because he can’t get it up anymore.
I would probably then have to tell you how frustrating it is for me not to be able to make love to my wife, and how this is a source of constant friction between Maryanne and me. She accuses me of throwing out the baby with the bathwater. All she wants is for us to be close.
So you see, if I told you all these things I would really be embarrassed. So I’m not going to say anything at all.”
“I see,” I responded. “Do you really see yourself as a gimp? Or is that just a term of endearment you use for yourself?”
“What do you think? Just look at me. I’m one fine specimen of virile manhood, wouldn’t you say?”
Mike turns bright red. I can’t tell if it’s rage or embarrassment. Maybe both.
“Ok, Mike, have it your way. Maybe you are a gimp. Although I wouldn’t have guessed by just looking.”
I tell Mike about another client I had years ago. His MS was even more advanced than Mike’s. His wife claimed that despite being a very large man and being bedridden, he was a remarkably good lover. She said he had a vivid imagination and an exceptionally talented mouth. He was affectionate and gentle, and there was absolutely no hint of a chip on his shoulder. My former client used to say that his pleasure came from giving pleasure to others.
Most men occasionally experience the inability to have an erection, but repeated problems, whether they are organic or situational, constitute what was once referred to as impotence.
Mike apologized. “I’m not myself today. Or maybe this is what I’ve become. I know my wife and son think so.”
“So is all of this rage just about being unable to have an erection?”
I tell Mike that many women don’t care if their partner has an erection or not. While losing the ability to have an erection may be a humbling experience for a guy, his female partner may have an altogether different experience. For her, it may signal the possibility of some really good sex.
I ask, “How do you feel about your oral sex technique, Mike? If Maryanne wanted you to pleasure her, would you be comfortable doing that?
I also ask if he is able to communicate his need for intimacy to Maryanne, and if there are any specific issues that prove to be barriers in the way of him asking for what he needs.
“We stopped talking about sex about the same time I got sick,” Mike responds. “Actually, we never really discuss it at all. Maryanne brings up the topic, I get angry, and she gets hurt. That’s how ‘discussions’ about sex go in our house.”
Mike tells me that he wishes he could let his wife know how ashamed he is, not for being such a bully, but for being a coward. How we can’t seem to get past saying “I’m sorry.”
I ask if he’s talking to his doctor about his concerns.
“Nope, I just figured there wasn’t anything to talk about. Besides, it’s too embarrassing to admit.”
That’s something I tell Mike he should reconsider, and I then give him this advice:
“First, begin a dialogue with Maryanne. Let her know that you are serious about working through your problems.
Second, contact your doctor as soon as possible and initiate a frank discussion. A great deal of progress has been made recently in understanding and treating male erectile dysfunction.
Most men occasionally experience the inability to have an erection, but repeated problems, whether they are organic or situational, constitute what was once referred to as impotence. Men with chronic problems are often too embarrassed to ask for help, and they may not have the impetus to do so. Statistics on how widespread this concern is among guys is hard to come by.
Getting an erection is a process that combines complex emotional and biological functions. So it’s clear that either a physiological or psychological problem can interfere in the arousal stage of the sexual response cycle.
For example, a relationship problem, depression, anxiety, prescription medications, excessive alcohol consumption, a hormone imbalance, cardiovascular disease, a neurological problem, being overweight, some cold and allergy medications or a poor diet can contribute to arousal dysfunction.
Major breakthroughs in treating erection problems were made by a chance discovery in the mid 1990’s. A researcher studying the effects of a new heart medication noticed a remarkable side effect in some of his male subjects…erections. When Viagra hit the market, it revolutionized erectile dysfunction therapy.
It is important to note that this medication, as well as all the other erectile dysfunction medications out there, are ‘erection enhancers’ not ‘erection inducers.’ Without proper stimulation, these medications will not cause an erection on their own.
There are some reported side effects to these medications and one can only get them by prescription, so talk to your doctor as soon as possible.
There are options. Stop thinking about what used to be, and start working at finding out what is currently possible. There is still no need to go without partnered sex and pleasuring. There are erogenous zones all over and in your body.
Your erection-centric sex life maybe over, but there is so much more available to you if only you give yourself and Maryanne a chance to make the discoveries. How much time do you have left? Don’t let this issue continue to contaminate your marriage and short-circuit the intimacy that is still available. Maryanne deserves better, and so do you. I’ll continue to be available to you as a coach and guide, if you wish. Because there’s no need to go through this alone if you don’t want to.
Now get out of here, and make something pleasurable happen. You won’t regret it.”
LMM Founders on Barriers to End of Life Care for Chicago’s Public Radio
Posted on Friday, July 19th, 2013 at 5:58 pm by lifemediamatters
The barriers standing in the way of the best end of life care are numerous. Randi Belisomo speaks with Dr. Julie Goldstein of Illinois Masonic Medical Center, Dr. Mary Mulcahy of Life Matters Media and Ronette McCarthy of Elements Cremation for the Morning Shift.
Unreasonable Optimism Among Physicians Common During End Of Life Care
Posted on Monday, May 6th, 2013 at 10:06 am by Life Matters Media
Unreasonable optimism among physicians negatively impacts patients’ end of life care- often influencing the terminally ill to accept more aggressive, costly treatments with little chance of effectiveness.
Haider Javed Warraich, a resident of internal medicine at the Beth Israel Deaconess Medical Center, recounts his optimism when he first met a woman suffering from heart failure and a condition preventing blood from flowing out of her heart.
“While learning her medical history, I also got to know her,” Warraich writes. His patient was a 50 year-old former artist, derailed by addiction. “At this point, she wasn’t a suitable candidate for heart surgery. But I felt there was still hope,” he recounts in The New York Times Sunday Review.
With perseverance, Warraich convinced his colleagues to order a procedure called alcohol septal ablation. Though the procedure could potentially reduce her symptoms, it came with many risks. His patient died the next day, after a complete heart block and aggressive attempts to revive her.
Warraich explains that he was victim of “irrational optimism, a condition running rampant in both doctors and patients, particularly in end of life care.” These physicians may push for costly and more aggressive treatments as a last resort, even when there is little hope of recovery.
As a study published in 2000 for the British Medical Journal shows, about two-thirds of doctors overestimate the survival of terminally ill patients. ”Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic,” concluded the researchers, headed by Nicholas A. Christakis, then of the University of Chicago.
Many times, those poor estimates are never fully communicated to the patient. A 2001 study of cancer patients published in the Annals of Internal Medicine found that physicians only told patients their estimated survival 37 percent of the time. No estimate was given 23 percent of the time. “Around 70 percent of the discrepant estimates were overly optimistic,” Warraich notes.
A 2012 study published in the Journal of Clinical Oncology found that cancer patients who talk with their physicians about how they want to die are less likely to opt for aggressive end of life treatments in the last two weeks of life, and they have much more comfortable deaths.
“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said lead author Dr. Jennifer Mack of Harvard University Medical School.
Similarly, Warraich suggests more palliative care for patients unlikely to survive a serious illness. “Modern palliative care originated in response to the proliferation of new treatments and resuscitation technologies,” he writes. Palliative care not only provides more comfort alongside standard treatments, but it has been shown to help patients live a little longer.
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