Archive for August 2012

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Stressful Problems We’ve Had to Solve

Tuesday, August 28th, 2012

What was the single most stressful concrete problem you had to solve as a caregiver for your loved one with Alzheimer’s Disease?  Was it taking away the car keys? Was it convincing your loved one to move to an assisted living facility? Dealing with long-distance family members who weren’t around often enough to see the signs and understand how serious the situation actually was? Or was it engaging hospice services or making end-of-life care decisions?

For me it was finding a way to get Ed into a long-term care facility. This proud and fiercely independent man was adamantly opposed to moving to any institution. I begged, pleaded, cajoled, even threatened him – all to no avail. Then I made plans to admit him against his will, but found I didn’t have the courage to follow through. Finally, one day he was so confused he forgot about his opposition to moving, and I rushed him to the facility before he could change his mind. For me, this was the most stressful problem I faced during the entire seven-year period of caring for him.

Tell us about yours and how you solved it.

Intensive Care for the Nurturer’s Soul: 7 Keys to Nurture Yourself While Caring for Others

Saturday, August 25th, 2012

Intensive Care for the Nurturer’s Soul: 7 Keys to Nurture Yourself While Caring for Others.  By Hueina Su, MS, BSN, CEC.  Published by RX for Balance Productions, 2009.  Available from Amazon.com.

Hueina Su, www.HueinaSu.com, is a registered nurse with more than 20 years of experience in nursing, coaching, counseling, speaking, training, nonprofit management and small business. She is from a Chinese family and is the fourth generation to work in the field of medicine.

Su’s approach is holistic and blends eastern and western philosophies, combined with real life stories, practical tips and self-coaching exercises. The book focuses on stress management and self nurturing.

One of the most important points Su makes about caregiving is that self-nurturing is not a luxury but a necessity if one is to care for others. She compares this to putting on your own oxygen mask in an airplane before putting on your child’s. If you don’t put on your own first you may pass out and not be able to help your child. This is a solid book on general stress management that could be helpful to those caring for people with Alzheimer’s.

 

 

 

Love Remembered Despite Alzheimer’s

Saturday, August 25th, 2012

Here’s a true story that illustrates that people with Alzheimer’s can remember and experience strong emotions related to a past event even if they can’t remember the facts surrounding the occasion.

One day I’d decided to show Ed the cards and photos I’d found in his storage unit while I was cleaning it out.

“Ed, I found some old photos and cards that I sent you many years ago and I’m going to show them to you today.”

“Marvelous!  Superb!” he answered.

I started with the cards. He laughed at the funny ones and was more seriously about the others. Next we looked at the photos. There were several pictures of Ed with me from the ‘80s and ‘90s. The last one was a picture of him from 1985 with a woman standing behind him. She had her hands on his shoulders and her head was peeking around his, facing the camera.

Ah . . . She loved me,” he murmured, an affectionate expression on his face. He appeared mesmerized and kept looking at the photo in silence.

I was stunned. He didn’t realize that I was the woman in the photo, but he remembered vividly that the woman in the picture had loved him. He remembered and experienced the affect.

“What are you thinking?” I asked when he didn’t say anything more.

“I’m thinking of love,” he said softly.

“I’m that woman and I still love you.”

He looked up and gazed into my eyes exactly the way he did when we were lovers all those 30 years earlier.

It was surreal. I couldn’t tell if he was in the past or the present. I decided it didn’t matter.

 

Alzheimer’s Disease: A Caregiver’s Guide

Wednesday, August 22nd, 2012

Alzheimer’s Disease: A Caregiver’s Guide. By Susan D. Vani and her sister, Patricia M. Cabrol. It was published in 2012 by Create Space and is available from Amazon.com

This book is clear, concise and straight forward with many bulleted lists, making it easy to read in just a couple of hours. The authors wrote the book to pass along some of the things they learned while caring for their father.

The book includes:

  1. A definition of Alzheimer’s and explanation of the stages of the disease
  2. How to get  organized for a visit to a doctor and an attorney
  3. Practical solutions to problem behaviors and various difficult life situations
  4. Helpful hints and some “unhelpful” hints
  5. Lists of free and paid services for Alzheimer’s patients
  6. A list of helpful products
  7. A discussion of hospice care
  8. A variety of useful forms

The advice in this book is solid and will be very helpful for caregivers of people with dementia.

 

 

“Likes” of Huffington Post Article Up To 1,800 and Counting

Saturday, August 18th, 2012

  My story from Come Back Early Today about the violinist I had show up in a tux at Ed’s nursing home to play a special concert just for him in his room has now received over 1,800 likes and more than 100 comments on the Huffington Post.

To read the story go to the Huffington Post and type in the search box: Please Wear a Tux.

 

 

 

The Innate Capacity to Feel Joy – Despite Alzheimer’s

Wednesday, August 15th, 2012

Here’s a short story from Come Back Early Today that shows that people with Alzheimer’s can still feel joy.

When I entered Ed’s room one day he was asleep and actually snoring in his wheelchair. It took quite a bit of effort to wake him. But after a few moments his eyes lit up, he lifted his head and said,

“Oh! It’s you. Oh! I’m so happy to see you. You’re an angel. I’m overwhelmed to see you.  Oh, I’m overwhelmed!”

“I’m happy to see you, too,” I said, sitting down on the sofa, wondering what was causing such an outpouring of joy and affection.

Then he looked in my eyes and said in a most serious tone of voice, “Since I became in such high admiration of you, other beauties didn’t exist.”

His eyes were shining, his face glowed, and he held my hand, kissing it again and again. I wanted the joy he felt to last, and so I picked up Adorable and put him in his lap, hoping that would elate him even more.

“Oh. The little one,” he said, looking at Adorable. “I love him so much,” he added, picking up the bunny and holding it tightly against his chest.

It was as though he’d never seen Adorable before. His eyes glistened as he caressed the little animal and kissed its head several times. Then he carefully put Adorable on the sofa, turned to me, and kissed my hand again.

His happiness at seeing me, and his affection for Adorable touched me deeply and I realized that no matter how demented Ed might be, he still had the innate capacity to feel joy. It made me feel joyous too.

 

Preparing for Your Loved One’s Death: A Critical Piece of Advice

Saturday, August 11th, 2012

There are many emotional issues facing family members and friends when a loved one is terminally ill. These include things such as communicating the terminal diagnosis to others; overcoming denial that the person is in fact terminally ill; feeling the need to “be strong” for that person’s benefit; dealing with anticipatory grief; and deciding when or if to engage hospice care services – just to name a few.

I want to share my experience near the end of Ed’s life. After I started hospice care for him I consulted Doug Smucker, MD, a family physician at the University of Cincinnati who specialized in end-of-life care.

After answering all my questions, he told me something that completely changed my thinking and feelings about the situation. He said that rather than focus on Ed’s impending death, I should focus on doing everything I could to help him have the highest possible quality of life in the time that was remaining.

That turned me around and led me to focus on all the special things I could do for Ed – visiting him more often, taking my little Shih Tzu to see him, having the violinist come back and play another concert for him, and buying him even more of the stuffed animals he loved so much. This helped both me and Ed have a beautiful, pleasant months-long conclusion of our life together.

Do You Worry You’re Getting Alzheimer’s?

Wednesday, August 8th, 2012

It wouldn’t be unusual for anyone to fear they are getting Alzheimer’s. When you have ‘a senior moment’ you may laugh about it, but you may also be one of numerous people who are secretly afraid it may be an early sign of dementia.

Two groups of people are especially vulnerable to this fear – those who have a loved one with dementia and those who work with dementia patients. If you belong to one or both of these groups you witness signs of dementia daily and as a result, become highly attuned to them. You may begin to interpret some of your own memory issues, no matter how minor or infrequent, as early warnings that you, too, are becoming a victim.

Most of us have had moments of concern after being unable to remember someone’s name, forgetting why we went into a room, or not being able to find our car keys. How are we to know whether these are normal sign of aging or whether they may be something more ominous?

The Alzheimer’s Association has addressed this issue in a 17-page PDF, Basics of Alzheimer’s Disease – What It Is and What to Do. This document includes a section on the 10 warning signs. The important feature of this PDF is that after a brief description of each there is a statement of “What’s a typical age-related change?”  After studying this document, one might conclude that generally speaking it isn’t what signs of dementia we have that matter. Rather, it’s their frequency, severity and the extent to which they interfere with our daily activities that counts.

The Alzheimer’s Association states: “Having trouble with memory doesn’t mean you have Alzheimer’s.  Many health issues can cause problems with memory and thinking. When dementia-like symptoms are caused by treatable conditions – such as depression, drug interactions, thyroid problems, excess use of alcohol or certain vitamin deficiencies – they may be reversed.”

So if you have serious concerns about your mental state you should see a primary care physician or a neurologist as soon as possible. It’s the only way to find out if it’s just normal aging, some other health problem, or if it’s in fact Alzheimer’s.

 

Excellent Reviews!

Friday, August 3rd, 2012

 

I published an article on the Huffington Post entitled, “An Alzheimer’s Love Story – “Please Wear a Tux.” It received over 100 comments. A few are given below. (See the end of this post for a link to the article.)

  • Absolutely inspiring! The author knows true love. Selflessness and remembering those important things to a loved one. I was brought to tears. Thanks.
  • This is the nicest, purest article I’ve read in a very long time. I’m wishing blessings on you for your kind and caring spirit and blessings on Ed, who perhaps is showing us that what we did for a living is not as vital as what and who we are in the moment!
  • Such a beautiful story, just like the beautiful friend you are. My heart was so touched. Thank you for sharing.
  • Thank you Ms. Marley, Young people may think they invented love and romance but they have nothing on us!
  • Such a vivid and beautifully written story. I teared up! Thank you for sharing, Mrs. Marley. It was a breath of fresh air to Huffpost.
  • An absolutely beautiful piece; thank you for sharing your soul mate and his love of “moo-sic.”
  • I am writing this through tears. Thank you for this touching and beautiful story.
  • Thank you for making me feel that humanity is still not lost.

 Link to the article: Click Here

 

 

 

 

 

 

Ten Tips for Successful Communication With People Who Have Alzheimer’s Disease

Wednesday, August 1st, 2012
  1. Make eye contact. Always approach them face-to-face and make eye contact. Use their name if you need to. Always approach from the front as approaching and speaking from the side or from behind can startle them.
  2. Be at their level. Bend your knees or sit down to reach their level. Do not stand or hover over them – it is intimidating and scary.
  3. Tell them what you are going to do before you do it. Particularly if you are going to touch them.
  4. Speak calmly. Always speak in a calm manner with an upbeat tone of voice, even if you don’t feel that way.
  5. Speak slowly. Speak at one half of your normal speed when talking to them. They cannot process words as fast as non-diseased people can.
  6. Speak in short sentences. Speak in short direct sentences with only one idea to a sentence.
  7. Only ask one question at a time. Let them answer it before you ask another question.
  8. Don’t say “remember”. Many times they will not be able to do so, and you are just pointing out to them their shortcomings.
  9. Turn negatives into positives. For example say “Let’s go here” instead of “Don’t go there”.
  10. Do not argue with them. It gets you nowhere. Instead, validate their feelings, by saying” I see that you are angry (sad, upset, etc…). It lets them know that they are not alone and then redirect them into another thought.

Note: This is a shortened version of an article published by Carole Larkin on the Alzheimer’s Reading Room. Please see that article for more detail on each of the ten tips listed above.