Showing posts with label alzheimer's caregiving. Show all posts
Showing posts with label alzheimer's 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.



More Insight and Advice from the Alzheimer's Reading Room

Original content Ellen Belk, the Alzheimer's Reading Room

Monday, 23 April 2012

Alzheimer’s and the Truth from Both Sides

Truth is a funny thing. There is truth in ‘our world’ and there is truth in the ‘Alzheimer’s World.’ Which is the ‘real truth?’

By Carol Blackwell
Alzheimer's Reading Room

Definition of truth.

Alzheimer’s and the Truth from Both Sides
(1) : the state of being the case : fact

(2) : the body of real things, events, and facts : actuality

(3) often capitalized : a transcendent fundamental or spiritual reality b : a judgment, proposition, or idea that is true or accepted as true c : the body of true statements and propositions 3a : the property (as of a statement) of being in accord with fact or reality
Truth is a funny thing. There is truth in ‘our world’ and there is truth in the ‘Alzheimer’s World.’ Which is the ‘real truth?’

It depends on which world you are in, I think. What is ‘real’ to me is not necessarily ‘real’ to my husband, Bob. The truth of both worlds is that we love each other and are trying to do what is best for each other.


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Carol’s Truth

My name is Carol Blackwell. My husband, Bob, was diagnosed with Alzheimer’s 5 and a half years ago. He did well—with the help of Aricept and Namenda—for the first 3+ years. He started a small photography business, took classes and we traveled a lot.

In February of last year Bob began a steeper cognitive decline. We can’t travel anymore, and he seldom takes photos. He can’t drive which is a source of constant frustration for him. Bob no longer remembers he has Alzheimer’s and I think that is a blessing. He used to worry a great deal about the progression of the disease and now he isn’t sure what it is. He now believes that he is young, newly graduated from college, and should be able to get a job and ‘do something meaningful’ with his life.

Bob attends day care three days a week and loves it. He is a strong extrovert and enjoys being with people. The day care is great---there are many activities and lots of singing and they often take ‘field trips’ which the staff says he loves. (They also say he loves to dance and I have pictures to prove it)

However, Bob does not seem to be happy at home anymore. He is unable to settle down and paces a lot. He has trouble grasping what I am trying to tell him and becomes angry at what he thinks I am saying, even though what I am trying to communicate is something else.

For example, our friends visited last month and I said to him, “Bob, why don’t you shave and take a shower so we can hike with our friends?” He looked at me in shock and said, “How can you say something like that about them. They are nice people”. ???? It does make it hard to communicate when one person can’t process what the other is saying!

Bob can no longer do household tasks, although he often tells me he wants to help. He frequently wants me to take him somewhere, but can’t express to me where he wants to go or what he wants to do. He tells me that he is ‘afraid’, but he can’t tell me the source of the fear. I am quite sure that he often does not know who I am, although he knows I am Carol and that I take care of him. However, once in a while he will look at me and say, “Oh, it’s you! I didn’t recognize you. You know I love you.” ???

After a ‘sort of’ conversation the other day, I realized I needed to go deeper into his Alzheimer’s World to find the source of his discontent and the following narrative, although not his actual words, reflects comments he made to me many times.

Bob’s Truth

“My name is Bob Blackwell. I am fine. People keep talking to me about this Alzheimer’s disease, but I don’t know what they mean. I am fine.

I attended the University of Georgia and I graduated not too long ago---I can’t remember when, but it doesn’t seem long ago. I want to get a job, get married and have children. I want to make a difference and have a career like everyone else, and I am frustrated that I don’t get any opportunity to do this.

I live with an older woman who is nice and I like her most of the time. Her name is Carol. I think she must be my mother because she is always telling me what to do. She always talks about ‘shaving’ first thing in the morning, but I am not sure what that is.

She tells me to take a shower a lot and sometimes I do. She lays out clothes for me but I don’t always wear them. I can pick them out myself and I get irked when she tells me I am wearing too many layers and shouldn’t wear the white shirt over the other clothes. She doesn’t let me drive and I know I can because I drove when I went to Georgia. I am a good driver, but she tells me that ‘they’ won’t let me drive because of this Alzheimer’s thing. It is unfair. I don’t know why they are doing this to me. I have never done anything to them.

I do like the woman and she does a lot for me so I try to be kind to her and I know you must help and respect your mother. I keep trying to tell her that, while I like her, I want her to take me somewhere so I can get a job.

I do go to an activity center and there are some nice young women there, about my age. I like them and would like to find someone to date. I am a little worried about Carol, though. I have told her I know I am her son and owe her respect, but she gets upset when I say that, tells me she is my wife, starts crying, and usually leaves the room.

I feel really awful when she does this. I did tell her I think she has a mental problem and needs professional help. For some reason, she thought that was funny. I don’t think it is funny. I want a life…..”

So, here we are, each of us telling the ‘truth’ from our side. It didn’t ‘make us free’ but I do have a better understanding of his viewpoint and I will try and make that work to his advantage. I will try and be more patient and more understanding.

I can’t promise I won’t be still upset. I do find the more I understand ‘his truth’, the better I react to it.

And so the journey continues……one we didn’t want to make, but here we are and still together……..

Carol Blackwell lives in Northern Virginia with her husband Bob. Bob was diagnosed with Alzheimer’s in 2006. Carol is a part time leadership coach and instructor. Both Carol and Bob are active advocates in the fight against Alzheimer's disease. Bob and Carol also blog on the USA Today website.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Sunday, 25 March 2012

The Brain of the Alzheimer's CAREGIVER

By Claudia Marshall-Apers
Alzheimer's Reading Room


A spider sits in the middle of its web, spinning.

That spider is the brain of the Alzheimer's sufferer.

You jump into the web to help free the Alzheimer's sufferer. Instead you become trapped in the web as well.

Custom Search - Caregiver Brain


The spider wraps you around and around with its amyloid plaques and tangles. You suddenly feel like a cocoon, unable to move. Oddly, no one is jumping in to free YOU, the accidental caregiver.

This makes you angry.

But you are too busy dealing with the situation to dwell on it. Yet you don't know how you can keep this up and for how long. What if something happens to me? You feel pretty sure that it will.

Slowly, you figure out how to function in this position in which you find yourself.

Somehow you learn how to breathe, move and meet your own needs as well as those of the Alzheimer's sufferer that you are helping.

You find out that the more you smile and create positive fun experiences for both you and the Alzheimer's sufferer the better they are and the better you are.

They smile. They laugh. They say things that make you smile and laugh.

Custom Search - How to understand the difference between Alzheimer's and Dementia


You begin to break free.

You have figured out how to provide Sustainable Caregiving.

The spider has not devoured you. A wing emerges. You have become a butterfly.

Custom SearchAlzheimer Disease Stages


Claudia Marshall-Apers is the full-time caregiver to her mom, Pauline, who is in the moderate to severe stages of Alzheimer's/dementia. Claudia is a transplant from New York where she was born and raised and now lives in the beautiful landscape of Rio Rancho New Mexico with her husband and 18 and 21-year-old sons, when they are home, along with their dog Cinnamon. Claudia holds a Master's in Art Education and is currently working on a series of artwork about Alzheimer's/dementia.

You are reading original content from 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.