Category Archives: Awareness & Activism

My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.

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White House Conference on Aging: Great discussions, now we need to see action

Update: I was moved by many of the stories and statistics shared at the White House Conference on Aging. How little paid caregivers earn and the rallying cry to pay them a livable wage of $13/hour. A woman who juggles the demands of motherhood and her father who has Alzheimer’s, yet sits on hold or gets the run-around when calling for help from government agencies.

There were many programs and initiatives unveiled at the conference, and while many sound promising, the proof will be in the results.

Original post:

The White House Conference on Aging is happening today. I think it will be of interest to many who follow this blog.

I wish I could be in Washington, D.C. to participate in person, but I am following along with the live stream of the conference and taking part in the conversation on social media by using the hashtag #WHCOA.

whcoa logo

I hope the conference will help generate greater awareness for the issues impacting caregivers in America, both family caregivers and professional caregivers. The fact that the government is taking a day to discuss aging issues is progress, but of course, legislative action and government funding is ultimately what is needed.

If you catch any of the conference, share your thoughts below.

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Glen Campbell documentary ‘I’ll Be Me’ a powerful, profound look at Alzheimer’s

I finally had the chance to see the documentary about Glen Campbell called, “I’ll Be Me.” I highly recommend seeing it, even if you are not a fan of Campbell’s music.

The documentary is an unflinching yet loving look at how Campbell and his family have managed his Alzheimer’s diagnosis. The film once again confirms the power of music. It was amazing to see how long Campbell’s music ability endured, even as he entered the late middle stages of the disease.

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The film, made in conjunction with his family, doesn’t shy away from the ugly aspects of Alzheimer’s. Viewers witness Campbell’s temper, repeating questions, communication difficulties, wandering, discussions of incontinence episodes and paranoid outbursts.

Viewers get a behind-the-scenes look at the sometimes chaotic backstage scene before shows. As we all know, those with Alzheimer’s have good and bad days, until they end up with more bad ones than good ones. When you are performing in front of hundreds of people, the good and the bad are magnified.

Campbell is now in the final stages of the disease and lives in a residential care facility.

For Campbell fans it will be difficult to watch one of the greatest guitarists of all times deal with such a debilitating disease, but his phenomenal guitar work is on display throughout the film, as is his sense of humor and his fighting spirit.

If you’ve seen the film, please share your thoughts.

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Being the ‘angry advocate’ is sometimes necessary

I don’t like conflict. I like things to run smoothly and everyone to do their job. This is especially true during a crisis.

Of course, it is in these tough situations that conflicts and issues often arise.

Ironic door sign

I found out yesterday that after waiting over a week for hospice to begin, with my mom reporting an 8 out of 10 on the pain scale during every home health visit, that the hospice transition process had not even started! The home health agency told me I needed to talk to my mother’s primary care physician. But last week, when I was at the doctor’s office, I asked about starting hospice and the doctor’s staff told me the home health agency needed to fax them paperwork.

I was beyond frustrated. I don’t get angry very often but I was really furious. My mom had suffered needlessly for over a week because these two entities that work with each other all the time can’t get their acts together?

Since the local home health agency is now part of a larger corporation, I filed a complaint at the corporate level. I don’t generally like to throw people under the bus but I wanted action.

And it worked. Tomorrow a staff member is coming to transition Mom to home hospice.

I just wish I had been the angry advocate sooner.

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Dying with dignity shouldn’t be so difficult

The last week my mom’s health has taken a steep decline. Barring some miraculous turnaround, it is fair to say she is actively dying.

Hard to believe this photo was taken just a little over a month ago.

Hard to believe this photo was taken just a little over a month ago.

While I have prepared myself for this moment, and have seen it coming for awhile, what I didn’t necessarily expect was how difficult it would be to just allow someone to die in peace and comfort.

I literally had to run all over town just to get prescription paid medicine for my mom. I know new regulations on controlled substances took effect this year, but frankly, if an addict wants narcotic pills they are going to get them no matter what. In the meantime, those who are legitimately in pain have to suffer.

The doctor made me go in person to pick up the prescription. They said they required a family member to pick it up, even the nurses at the home care agency my mom uses were forbidden from picking it up. Guess it’s good I just arrived in town! There is no way my mom could have made it to the doctor’s office.

There are plenty of pain-ridden people who live alone, what do these poor souls do?

And while I don’t necessarily want my mother to waste away in a hospital setting, I am surprised that the doctors keep sending her home from the ER. Uncontrollable pain, emaciated, can barely ambulate … I mean, geez, what does it take to be admitted to the hospital these days? The doctor told her she didn’t qualify for an inpatient stay under the new strict guidelines.

So we are starting hospice, but her overworked doctor has to sign off on it. I’m not too hopeful that it will be done quickly. While her doctor was off last week, my mom had no pain medicine and being cut off cold turkey really sent her health reeling into a death spiral.

So much red tape and regulations are getting in the way of treating people who are suffering with some form of dignity.

Family caregivers shouldn’t be left feeling helpless and devastated as they watch their loved one suffer needlessly.

I hope we can work together to advocate for better end-of-life treatment.

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Guest article: The Disease of Forgetfulness

By Jami Hede of Exploring Dementia

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In 1901, German neuropsychiatrist Dr. Alois Alzheimer took up a position at the Institution for the Mentally Ill and for Epileptics, in Frankfurt, Germany. One of the first patients he examined there was a woman named Auguste Deter, who was 51 years old. Just a few years previously, Frau Deter had been a happy wife and mother, living a normal life for the time period. But then she began showing symptoms of memory loss, trouble sleeping, delusions, temporary vegetative states, dragging sheets around the house, and screaming for hours in the middle of the night. Poor Karl Deter had no choice but to admit her to the institution, because he just couldn’t care for her any more, and also continue to work to support their daughter.

In 1996, Frau Deter’s actual medical records were discovered, written in Dr. Alzheimer’s own handwriting (and her own, at times). The neuropsychiatrist made careful and accurate transcriptions of his interviews with his patient, and a short excerpt of them is given here:

“What is your name?”
“Auguste.”
“Family name?”
“Auguste.”
“What is your husband’s name?” – she hesitates, finally answers:
“I believe … Auguste.”
“Your husband?”
“Oh, so!”
“How old are you?”
“Fifty-one.”
“Where do you live?”
“Oh, you have been to our place”
“Are you married?”
“Oh, I am so confused.”
“Where are you right now?”
“Here and everywhere, here and now, you must not think badly of me.”
“Where are you at the moment?”
“We will live there.”
“Where is your bed?”
“Where should it be?”

Dr. Alzheimer asked Frau Deter many questions, including a test of her memory, and also asked her to write her name. She attempted the latter, but repeated, “I have lost myself.” She was then put into an isolation room, and when released ran out screaming, “I do not cut myself. I will not cut myself.”

In subsequent writings, Dr. Alzheimer described his patient as having no sense of time or place, and poor recall for details of her life, made frequent irrelevant and incoherent statements, had rapid and sudden mood changes, and often “accosted” other patients (who would then assault her). He indicated that he had previously seen patients who showed similar behaviors, but they were much older than Frau Deter. He used the term “presenile dementia” to describe her, and stated that she had the “Disease of Forgetfulness.”

In 1902, Dr. Alzheimer took up a position in Munich, where he worked with another neuropsychiatrist named Dr. Emil Kraepelin. (Dr. Kraepelin is quite well-known, in his own right, for work in the area of schizophrenia and other disorders.) He continued to follow Frau Deter’s case, however, and in 1906 was notified of her death, apparently due to sepsis related to an infected bedsore. He requested that her medical records and her brain be sent to him for further study. It was upon examining her brain that he discovered the neurofibrillary tangles and plaques which are now considered characteristic of the disease.

Dr. Alzheimer gave a very significant presentation to the 37 Conference of South-West German Psychiatrists, in November of 1906, in which he discussed the case of one Auguste D. The following year, he published an article in which he described “A serious disease of the cerebral cortex.” However, the person who first coined the term “Alzheimer’s Disease” was Dr. Kraepelin, and not Alzheimer. He first did this in writings published in 1910.

And the rest is history, as they say. Now, the disease which bears Alzheimer’s name is the most common of many different forms of dementia which have been reported since his time.

Source material is from Wikipedia, “The Lancet,” and others. For more informative articles about dementia, visit Exploring Dementia.

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A simple act of kindness is often greatly appreciated

Recently, I visited my mom. It was the first time I would be meeting her personal caregiver. I’ll call her Debbie (not her real name.) Mom had raved about how wonderful Debbie was and how much she liked her.

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We’ve all heard horror stories about the other kind of caregivers, those who steal from clients or abuse them. I was relieved that Mom was happy with her caregiver. I think the service has lifted her spirits and helped take the burden off of her when it comes to housekeeping and grocery shopping. In short, personal attendants can help my mom live independently longer.

Debbie made me comfortable immediately. She is warm and kind and doesn’t let Mom get down on herself. But she also isn’t fake in her positive thinking, instead she is encouraging. She is an ideal match with my mom, who is set in her ways and finds changes in routine stressful. Debbie knows how to keep my mom on the right track.

I thought the least I could do was get Debbie a thank you card, to let her know I appreciated her taking good care of my mom. Apparently it’s a struggle to keep gas in the car on her wages, and she doesn’t get reimbursed for mileage. She was one of the few people who was almost looking forward to jury duty, because it would pay the same/better than what she earns normally!

So I gave Debbie the card and she told my mom later that she was so touched that she cried after reading it.

Caregiving is a job where you may not receive much thanks or positive feedback. Showing a bit of appreciation can go a long way.

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Determination in the face of disease

This week, Richard Glatzer, the co-director of “Still Alice,” died. He was only 63 years old. He had been courageously battling ALS since 2011, another debilitating disease that like Alzheimer’s, takes so much from a person and is devastating to watch as a family.

Glatzer saw the connection too, telling NPR that he almost didn’t want to adapt Lisa Genova’s book for the big screen, because it cut too close to the bone.

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But it was Glatzer’s personal connection to independence-robbing illness that gave “Still Alice” a greater authenticity. The movie focused just as much or more on what the main character, dealing with early-onset Alzheimer’s, was feeling about her condition as it did about her family’s reaction to her declining mental state. This is the book’s running theme, and preserving that in the film offers a much more impactful experience than making it just another family illness drama.

But what impressed me most about Glatzer’s direction was his determination. Glatzer used a text-to-speech app on his iPad with one finger to communicate during the film’s shooting.

The next time I make excuses about not focusing upon my personal writing, I’m going to think of the fearless determination that those with devastating illnesses demonstrate, as they strive to leave their mark on the world or accomplish a personal goal before they depart.

 

 

 

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The constipation chronicles

All of those health experts weren’t kidding when they kept saying, “Eat your fiber.”

If you are caring for a senior now, carefully monitor their fiber intake. The typical American diet is woefully deficient in fiber.

My mom actually eats healthier than most people her age. Lots of vegetables, oatmeal, nuts, etc.

Slice of brown bread

But [and pardon if it is TMI] constipation has been the bane of her existence this past year.

And the bane of mine.

Last week was a very busy week, as I’m training someone new at work. I’m working late night weekend shifts at the moment, and of course, there was the time change. I knew I wasn’t going to get much sleep Sunday. I finished work after midnight (which I was already computing in my mind as 1am.) It was after 2am when I went to bed.

Then my phone started buzzing at 5:50am. Mom.

Of course, my heart started pounding as I rushed to answer the phone from a dead sleep.

Mom said her stomach hurt and was bloated. She couldn’t sleep. Yes, she may have skipped her tea (a fiber/stool softener liquid that was prescribed for her) one day.

I told her to take some Milk of Magnesia and tried to go back to sleep.

I’m still convinced there is something else besides old age causing Mom’s irregularity, but it has become a chronic health issue that must be managed aggressively.

Many medications and common health issues can cause constipation, and it can cause a great deal of suffering.

There are many ways to add fiber to the diet, from supplements to naturally high in fiber foods. The key is finding sources of fiber your loved one enjoys (or at least tolerates) on a consistent basis.

How have you dealt with this problem as a caregiver?

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Guest article: Dealing with geriatric depression

By Jesse Waugh

It is normal to experience grief when facing major life changes.

However, for older adults, drastic events can lead to extreme sadness and, ultimately, clinical depression.

Approximately 15% of the elderly suffer from this condition.

If left untreated, depression can last for months and take a toll on the immune system, making the afflicted person mentally and physically weaker.

A geriatric psychiatrist can tell if a person is depressed or experiencing bouts of loneliness and helplessness.

sad senior man

What are the warning signs of clinical depression?

If you think an elderly friend or relative suffers from depression, look for warning signs. There are several health indicators that suggest persistent feelings of sadness.

Withdrawal from society – It is common for elders who experience depression to avoid social situations, even with close friends and relatives.

Loss of self-regard – Putting off personal grooming and proper hygiene may suggest a feeling of detachment and could be a sign of the early stages of depression.

Increased irritability – Sudden drastic changes in an older adult’s mood may suggest the outset of depression.

Amplified physical pain – Contrary to popular belief, depression affects both the mind and the body. Since it weakens the immune system, it can increase physical pain.

Older adults who have suffered from a serious disease or are recovering from a surgery may also be susceptible to depression.

Studies show that around 15% of older patients experience episodes of sadness after they are discharged from the hospital.

What can you do to help?

Keep in mind that depression is an illness. It is much more serious and damaging than grief or sadness. If you suspect that someone suffers from it, keep an eye out for the symptoms or warning signs mentioned above.

Do not attempt to control their lives. If you do things for them that they can do by themselves, you might strengthen their perception that they are helpless or incapable. In fact, many aged care homes do their best to make their guests feel at home and in control of every important aspect of their lives.

Talk to them. This is a good way to alleviate depressive episodes. Just be indirect when you open up the topic of depression. Instead of saying it outright, ask them how they feel. Even if they tell you that they’re fine, they may unknowingly drop hints about how they truly feel.

Basically, you must understand the situation they’re in, and do your best to help them cope with the bouts of extreme sadness. Perhaps one of the most helpful things you can do is keep them company. Loneliness may also be connected to Alzheimer’s, so be there for them when they need you.

Many older adults have successfully recovered from depression without intervention. However, it is best for friends and family of the afflicted person to look into professional help and build a support network. Compassion, empathy and sensitivity can go a long way in the treatment of elderly depression.

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