Showing posts with label caregiving. Show all posts
Showing posts with label caregiving. Show all posts

Tuesday, 8 May 2012

Dementia Care is not a 9-5 job!

Unfortunately for my Dad he did have hallucinations that night which resulted in 100 mgs of Seroquel being administered. Thus, began my Dad’s downward spiral into a personal hell we are still struggling to correct.

By Ellen Belk
Alzheimer's Reading Room

This is a Call-to-Action to the myriad of ‘service providers’ that litter the landscape of Senior Care.

The operations, organizations and companies that cater to the care providers of the memory impaired.

Please keep in mind, that although your offices may shut down at 5pm each day and are closed on weekends, those of us who seek your help after hours are left to fend for ourselves in serious moments of crisis.

If you aren’t available, where are families to turn in their greatest moment of need?

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As an accomplished dementia care employee myself, I’ve personally guided families after regular business hours. I’ve greeted them at the door on a Sunday. I’ve held the hand of an anxious son, past 8pm on a Friday, when his father was moving in. I’ve answered my phone on holidays and weekends many times throughout my career. Professionally, I’ve made the conscious decision to be available to folks during their times of struggle.

Recently, my professional and personal worlds collided when I got the call from my 83 year old mother on a Sunday, that my dad had fallen and she was in the local Emergency room with him awaiting X-ray results. I, like so many other adult children of aging parents, am a long-distance care provider. I live in the South and my parents, in the Midwest.

On that Sunday, my dad awoke, like any other day. He dressed and had breakfast with my mom in the condo they share. Unfortunately he fell in the bathroom that day, sometime around Noon. Ten days prior to his fall, he’d visited his primary Doctor, where it was discovered that Dad had a UTI. Not uncommon for a man of 82 years. Although the Doctor had commented on my Dad’s noticeable weight loss, he prescribed a strong anti-biotic for the infection. In the days leading up to the fall, Dad had experienced nighttime hallucinations, which we now know may have been due to the medication.

Dad walked into the ER that Sunday with Mom and was able to fully explain to the hospital personnel what had happened. My parents were simply there as a precaution to make sure there were no hidden injuries, to be concerned about. As the hours dragged on, and they were still sitting in the waiting room, it became apparent that Dad would be held overnight in the hospital.

I immediately called my brother and sister, who live in the same state as my parents and alerted them of the situation. Because I’m familiar with how Hospitals treat those, who have hallucinations, I became anxious from long-distance with dread of what may happen if my Dad had one of those episodes overnight.

My brother and I spoke via phone as he drove to the hospital and I instructed him to find out if they ‘medically restrain’.

In an instant, I began a crash course with my siblings, who up until this incident were ignorant of the procedures and methods of an industry that isn’t equipped or trained to handle dementia-like behavior.

As a precaution, I called a well known company that provides companion services with the intention of hiring someone to stay with my dad overnight to ensure his safety. It was approximately 3 PM on that Sunday. The first company I contacted told me point blank that it was too short of notice for anyone from their office to assist. When I asked her if someone from another of their offices could help, she told me she wasn’t familiar with the area and I abruptly ended the call, as I quickly realized this was not going to be an easy task.

Through internet research, I found another office that served the area my parents were in, however was told again, it was too short of notice for them to be of any assistance. Realizing that industry professionals were not going to be our answer; my sister willingly agreed to hold vigil with Dad that night in the hospital. Because the X-rays had been negative, we all thought it would be a one night stay and he’d be home by late Monday.

Unfortunately for my Dad, he did indeed, have hallucinations that night which resulted in 100 mgs of Seroquel being administered. Thus, began my Dad’s downward spiral into a personal hell we are still struggling to correct. Dad had a significant adverse reaction to that medication and by Tuesday, he was unable to speak coherently, walk or feed himself. I arrived at the hospital on Wednesday and he didn’t even recognize me.

I reached out to various Geriatric Care Management companies in search of a professional advocate who would assist my family, when I had to return to my home. Unfortunately, I had to make those calls, after 5 PM, as time becomes your enemy when you are sitting bedside with your loved one all day.

And again, I was hearing automatic answering responses instructing me to call back during ‘normal business hours’. Normal? There is no normal when you are in crisis and seeking help for a loved one.

Our journey still continues and throughout our two month journey, we’ve endured Doctor’s who couldn’t be reached because they were on vacation, another Geriatric Care Management company who couldn’t provide weekend coverage and a primary Doctor who was too busy with patients to return our calls.

Newsflash to those of you touting your ‘Senior Care services’, find a way to be available after hours and on weekends. Because the reality is; crisis doesn’t always occur Monday thru Friday between 9 AM and 5 PM.

Surely, there has to be an organization who will realize this phenomenon and become an industry leader in offering services when the others have gone home for the day.

Ellen Belk is President of Keep In Mind™ and creator of Memory Magz™. Since 2001, Belk has specialized in developing programming for the memory impaired. A mature musician concert band, an intergenerational Senior Prom and a Fine Art appreciation program are amongst her professional highlights. Memory Magz™ are ‘magazine style’ picture publications with full page vibrant images purposefully designed for people with cognitive decline and/or developmental disabilities. As a public speaker, Belk engages the audience with her inter-active style and witty story telling. www.keepinmindinc.com.



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Original content Ellen Belk, the Alzheimer's Reading Room

Saturday, 7 April 2012

Reading, Engaging and Communicating with an Alzheimer's Patient

I suspect that if you stop engaging a person with Alzheimer's, talking to them all day long, they might stop talking sooner rather then later.


Dotty and the Georgia Bulldog AlzheimersReadingRoom.com

Take the extra step. Walk the extra yard. Engage. Keep on living. Don’t be afraid to try things. Do things that you have always done together. Don’t let anyone discourage you or get in your way...

Make your own parade and have fun.

Topic - How to listen to an Alzheimer's patient


By Bob DeMarco
Alzheimer's Reading Room

The following is the transcript of a podcast

the other day i put up the first podcast where everyone could hear dotty’s voice.

she was particularly Up that morning so i decided to try it for the first time.

you heard her reading a recipe that was printed in the newspaper.

some people were surprised, others emailed me and said that there Alzheimer's patient can not read that well.

a few wanted to know what stage of alzheimer’s dotty is in.

Topic - Seven Stages of Alzheimer's disease


as far as reading goes, we go through the exercise you heard on the podcast several times each day. sometimes it is the same recipe over and over.

when i sit dotty down to eat, i always try and get dotty to read or comment on stories in the newspaper.

i started doing this not long after dotty was diagnosed.

some of you that have been here for a long time and know i often write about how we live our day one day at a time.

Topic Search - Alzheimer's World


you also read about how i learned if you don’t let Alzheimer's patients do everything they can, if you start doing everything for them, then soon they will forget how to do things. once they forget it is difficult or nearly impossible for them to relearn.

Alzheimer's Caregiving Rule Just Let Them Do it


i see this reading exercise as falling into both those categories.

when she reads, dotty uses her brain. i am always trying to figure out ways that i can get her to use her brain.

reading is one. listening to dotty read also gives me comfort. comfort that she can still do it. for years now i have been expected her to stop reading. to lose the ability to read. i have watched her lose other abilities one by one.

Topic - How to listen to an Alzheimer's patient


it is my belief that she can read because we do it everyday. i ask her to read the gasoline signs when we drive, to tell me the price of a gallon of gas. i ask her to read billboards or street signs when we are stopped at red lights.

I think it is important to engage in as many activities as possible.

in the case of reading this helps dotty use her brain. this also helps us to communicate with each other, to engage each other.

this engagement is an important factor in our quality of life.

i suspect that if you stop engaging a person with alzheimer’s,

repeatedly,

and all day long,

that they might stop talking sooner rather then later.

i don’t know this for a fact, it is just one of my observations that i made along the road of Alzheimer's caregiving.

Take the extra step. Walk the extra yard. Engage. Keep on living. Don’t be afraid to try things. Do things that you have always done together. Don’t let anyone discourage you or get in your way. Make you own parade and have fun.

Custom Search - How to Get a Dementia Patient to Do What You Want Them to Do


My name is Bob DeMarco I am an Alzheimer’s caregiver. My mother Dorothy lived with Alzheimer's disease. We live our life one day at a time.

1. What's the Difference Between Alzheimer's and Dementia | Alzheimer's Reading Room

2. Alzheimer's Reading Room: Test Your Memory for Alzheimer's and Dementia (5 Best Memory Tests)

3. What is Alzheimer's? What are the Eight Types of Dementia?


Bob DeMarco is the Founder of the Alzheimer's Reading Room and an X Wall Street executive turned full time Alzheimer's caregiver. The blog contains more than 5,000 articles. Bob resides in Delray Beach, FL.

Original content the Alzheimer's Reading Room

Tuesday, 8 July 2008

The New Old Age Blog

I recently ran across this New York Times blog--The New Old Age.

The blog is dedicated to Baby Boomers and issues they will be facing. You should consider adding this blog to your reader.

I will also be adding it to my Blog Roll (Weblogs) for your convenience. I included the link and the description in the clip below.

About The New Old Age

Thanks to the marvels of medical science, our parents are living longer than ever before. Adults over age 80 are the fastest growing segment of the population, and most will spend years dependent on others for the most basic needs. That burden falls to their baby boomer children, 77 million strong, who are flummoxed by the technicalities of eldercare, turned upside down by the changed architecture of their families, struggling to balance work and caregiving, and depleting their own retirement savings in the process.

Jane Gross on eldercare

In The New Old Age, Jane Gross explores this unprecedented intergenerational challenge and shares the stories of readers, the advice of professionals, and the wisdom gleaned from her own experience caring for her mother in her waning years. You can reach Ms. Gross at newoldage@nytimes.com.

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By Bob DeMarco
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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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"I Remember Better When I Paint"


Original content Bob DeMarco, the Alzheimer's Reading Room

Wednesday, 25 June 2008

Alzheimer Disease Behavioral Symptoms Protocols


I found this very informative and valuable handout for caregivers on the Indiana University Center for Aging Research website. The opening webpage is titled Alzheimer Disease Behavioral Symptoms Protocols. On the right hand side of the page you will see a link entitled View Behavioral Symptoms Protocols and this will take you to the handout. If you prefer you can get to the PDF by clicking on this link, Behavioral Symptoms Protocols.

Please pass this information and link on to others. 

Thursday, 1 May 2008

Health Implications of Family Caregiving

Follow the link for additional information. Sponsored by the National Institute for Health this looks like it could be very informative and of great value to caregivers. This is only a short list of the topics being covered.
clipped from videocast.nih.gov
View event:
You will be able to view the event at http://videocast.nih.gov when the event is live.
Air date:
Wednesday, June 25, 2008, 1:00:00 PM
Caring for a loved one?
Overview of the issue of health and caregivers
Male caregiver’s experience
Powerful Tools for Caregivers
Veterans Affairs efforts to support family caregivers

Sponsors: Centers for Medicare & Medicaid Services and the Department of Health and Human Services New Freedom Initiative Subcommittee on Caregiving


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Wednesday, 26 March 2008

Dementia Factsheet (Alzheimer's Disease)

The section entitled, What are the Symptoms, is particularly interesting.Milton S Hershey Medical Center
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Source Milton S Hershey Medical Center

Dementia

What is it?


Dementia is the gradual deterioration of mental functioning, such as concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities.

Who gets it?

Dementia occurs primarily in people who are over the age of 65, or in those with an injury or disease that affects brain function. While dementia is most commonly seen in the elderly, it is not a normal consequence of the aging process.

What causes it?

Dementia is caused by the death of brain cells. Brain cells can be destroyed by brain diseases, such as Alzheimer’s disease, or strokes (called vascular or multi-infarct dementia), which decrease blood flow to the brain. Lewy body dementia is another common cause attributed to changes in brain tissue. Other causes can include AIDS, high fever, dehydration, hydrocephalus, systemic lupus erythematosus, Lyme disease, long-term drug or alcohol abuse, vitamin deficiencies/poor nutrition, hypothyroidism or hypercalcemia, multiple sclerosis, brain tumor, or diseases such as Pick’s, Parkinson's, Creutzfeldt-Jakob, or Huntington's. Dementia can also result from a head injury that causes hemorrhaging in the brain or a reaction to a medication.

What are the symptoms?

In most cases, the symptoms of dementia occur gradually, over a period of years. Symptoms of dementia caused by injury or stroke occur more abruptly. Difficulties often begin with memory, progressing from simple forgetfulness to the inability to remember directions, recent events, and familiar faces and names. Other symptoms include difficulty with spoken communication, personality changes, problems with abstract thinking, poor personal hygiene, trouble sleeping, and poor judgment and decision making. Dementia is extremely frustrating for the patient, especially in the early stages when he or she is aware of the deficiencies it causes. People with dementia are likely to lash out at those around them, either out of frustration or because their difficulty with understanding makes them misinterpret the actions of others. They become extremely confused and anxious when in unfamiliar surroundings or with any change in routine. They may begin a task, such as cooking, then wander away aimlessly and completely forget what they had been doing. Dementia is often accompanied by depression and delirium, which is characterized by an inability to pay attention, fluctuating consciousness, hallucinations, paranoia, and delusions. People in advanced stages of dementia lose all control of bodily functions and are completely dependent upon others.

How is it diagnosed?

Dementia is diagnosed through a study of the patient’s medical history and a complete physical and neurological exam. The doctor will speak with those close to the patient to document a pattern of behavior. He or she will also evaluate the patient’s mental functioning with tests of mental status, such as those that require the patient to recall words, lists of objects, names of objects, and recent events. Diagnostic tests, such as blood tests, x-rays, or magnetic resonance imaging (MRI), positron emission tomography (PET), or computed tomography (CT) scans, can help determine the cause of the dementia.

What is the treatment?

In some instances, treating the cause of dementia may successfully reverse some or all of the symptoms. This is the case when the cause is related to a vitamin/nutritional deficiency, tumor, alcohol or drug abuse, reaction to a medication, or hormonal disorder. When dementia is related to an irreversible destruction of brain tissue, such as with Alzheimer’s disease, Lewy body dementia, or multiple strokes, treatment involves improving the patient’s quality of life as much as possible. This includes maintaining a stable, safe, supportive environment and providing constant supervision. While this may be done in the home, people in the advanced stages of dementia may require round-the-clock care in a long-term healthcare facility. It is important to provide the patient with structured activities and avoid disruptions to his or her daily routine. Many patients enjoy therapeutic activities, such as crafts or games, designed specifically for people with dementia. Some medications, such as donepezil and tacrine, have been effective in improving the mental functions of those in the beginning stages of dementia. Patients with hallucinations and delusions may also be treated with antipsychotic drugs, while antidepressant medications are used to treat depression.

Self-care tips

There is currently no known way to prevent dementia associated with Alzheimer's disease. You can decrease your risk of dementia associated with stroke by maintaining a healthy lifestyle, following a heart-healthy diet, and controlling high blood pressure and high cholesterol. Healthy lifestyles, including not smoking and not abusing drugs and alcohol, go a long way in keeping most people in good health. Caring for a person with dementia is stressful. It is important to learn all you can about the disease, seek the help of support groups, and find a responsible caregiver who can give you a break when needed. There are daycare programs specifically designed for patients with dementia that are good for the patient and the family.


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This information has been designed as a comprehensive and quick reference guide written by our health care reviewers. The health information written by our authors is intended to be a supplement to the care provided by your physician. It is not intended nor implied to be a substitute for professional medical advice.

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Saturday, 22 March 2008

Reminiscence Therapy and Dementia

clipped from www.cochrane.org
Reminiscence Therapy (RT) involves the discussion of past activities, events and experiences with another person or group of people, usually with the aid of tangible prompts such as photographs, household and other familiar items from the past, music and archive sound recordings. Reminiscence groups typically involve group meetings in which participants are encouraged to talk about past events at least once a week. Life review typically involves individual sessions, in which the person is guided chronologically through life experiences, encouraged to evaluate them, and may produce a life story book. Family care-givers are increasingly involved in reminiscence therapy.
Reminiscence therapy is one of the most popular psychosocial interventions in dementia care, and is highly rated by staff and participants. There is some evidence to suggest it is effective in improving mood in older people without dementia. Its effects on mood, cognition and well-being in dementia are less well understood
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Also see: The Four Phases of Resolution -- Naomi Feil --Video

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,300 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Wednesday, 19 March 2008

Keeping time with Alzheimer's Disease

The following is an excellent article that I read some time ago in the San Francisco Chronicle. It is worthwhile reading.

"When guilt catches up with me, I am on the bike path above the creek, ducks swimming along beside me. Guilt rolls off our backs like you know what. Alone at last, I walk at my own pace. Fast. Fast is what Ben can no longer do -- and fast is slow compared with the woman coming toward me as I near the marsh. She is wearing shorts and earphones. She smiles and I smile back. What a good idea this is, walking out in the sun and cold. What could produce better clarity? I don't have to work it out the first day. I don't have to do it right the first time."


Source The SanFrancisco Chronicle

Keeping time with Alzheimer's

Persis Knobbe, Special to The Chronicle
Wednesday, December 27, 2006

Hanging on like the mom of a new kindergartner, I watch my husband from the social worker's glass cubicle. He is facing the piano player, the shrunken woman on one side of him, and on the other, falling asleep, the guy they call the Major. Ben -- of all people -- in that circle, a little dazed, being good, going along with the group, his new group. I can go home now and be alone for six hours. No TV, no one trailing after me. Shadowing, it's called. He doesn't always do it. Not yet.

He nods his head in time to the blues, then Gershwin suddenly returns someone's smile. It's beginning to look like a good bet. Senior Access, it's called, adult day care. This branch is in Novato, the best game in town as far as I know. I checked out every possibility that had a few men on the scene, not just a roomful of elderly ladies. Each time I took one look and said, "Never. Never Ben." So how did never become now?

Here is a moment, and for a change I recognize it. I will have a permanent memory of him joining the circle, lowering himself into the chair, eyes fixed on the piano, head bobbing immediately with the rhythm of the blues, then patting his knee as if he is soothing it. He knows he's in the right place before I do. He's one of them, not as far along on the Alzheimer's road as some, still dapper in his crisp shirt and clean Dockers. But he is one of them.

There is no going back to where he was, doing what passed for functioning at home, where he could still propel himself through the day with TV and frequent naps. He is ready; I'm the one not quite ready. From here in the cubicle, for the first time I see what "down the road" means: squeezing out every ounce of making it work at a level you can live with and then stepping down to the next level. Step, step, stepping along.

This is a good thing, I say to myself on the drive home, and I shouldn't turn it into dross because it's a gift. It's as close to what he needs, what we both need, as anything I could find, stimulation for him, a little freedom for me, twice-a-week freedom. Maybe we can work up to three days, who knows? And what will I do with the time and life this offers me? Catch up with two years of unfinished business? The house, the desk, the roses? Give way to a free-flowing all-out depression?

There is a Costco just off the freeway and the car veers off to the nearest exit on its own. "What am I doing?" I ask myself, as I push a huge cart with three items in it: two plants for the garden and a polo shirt for him. "What am I doing, killing a morning like this, wasting it on shopping?" Guilt approaching panic is making my heart beat faster. I will barely get home and have to go back for him.

Setting the plants near the front door with a thud that loosens the soil, I head for my desk. Checkbook and bank statement to my left, Italian class assignment to my right, I study the space between them until the phone rings. Sandra from the Caregiver's Group. "Would I have time for a few brief questions?" I already had time for a few brief questions. She asks about my family. Are they helping me? Am I being good to myself? Answer on a spectrum of "Always" to "Never." I answer with "Always" or "Never," nothing in between. Sandra says she'll call back another time.

When guilt catches up with me, I am on the bike path above the creek, ducks swimming along beside me. Guilt rolls off our backs like you know what. Alone at last, I walk at my own pace. Fast. Fast is what Ben can no longer do -- and fast is slow compared with the woman coming toward me as I near the marsh. She is wearing shorts and earphones. She smiles and I smile back. What a good idea this is, walking out in the sun and cold. What could produce better clarity? I don't have to work it out the first day. I don't have to do it right the first time.

By the time I go back for Ben, I'm capable of being quite pleasant. I don't ask him how it went. He still looks dazed, but he smiles when he sees me. We drive home, have dinner and rent a movie. A musical. We love musicals, the older, sweeter ones and the biting, jaded shows like tonight's. At least we used to. Neither of us is crazy about this one. I try to pry a critique out of him and he gets as far as "It was ..."

Then he opens his mouth wide, an expression of alarm in his eyes, his arms waving frantically. Abruptly he drops the pose. "It was ..." he says again and waits. "Boffo?" I ask. He doesn't answer. It is hard to engage him. "You mean every number was a showstopper? Over the top? Like Liza Minnelli?" He nods, slowly at first, then with mounting pleasure as I elaborate on the word "boffo" and I know one thing: He's not all gone. Not yet.

Persis Knobbe chronicles her journey with her late husband through his Alzheimer's disease. Read her essay "Farmers' markets can turn into lonely places'' (Home&Garden, July 29) on SFGate or e-mail her at home@sfchronicle.com.

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Insight and Advice


Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,880 articles with more than 95,100 links on the Internet. Bob resides in Delray Beach, FL.

The Alzheimer's Action Plan   300 Tips for Making Life Easier


Original content Bob DeMarco, the Alzheimer's Reading Room