Archive for October 2011

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“Silly Saturdays:” I’m an American!

Saturday, October 29th, 2011

Alzheimer’s is a deadly serious topic, but sometimes laughter is the best medicine. So I’ll make a “Silly Saturdays” post weekly with some amusing story about Ed, giving us a chance to smile in the midst of our somber life situation. Please send me your own “silly” stories and I’ll post them, too.

Ed was in many ways a ‘typical dementia patient,’ experiencing periods of lucidity interspersed among long stretches of dementia. Yet at the same time, he had always been inimitably eccentric, and his dementia hadn’t changed that.

Whenever Ed wanted his way he shouted, “I’m in America! I can do (or have or say) anything I want!”  He used that phrase when he wanted the facility to turn the parlor lights brighter rather than lower in the late evenings, when he wanted to eat in the middle of the night, when he wanted to be served Stouffers frozen dinners, and, of course, early on when he wanted his vodka.

And he turned the phrase around to avoid doing anything he didn’t want to do.  He would say things like, “I don’t have to
get out of bed today. I’m in America!” Or he would declare, “This is America! I don’t have to get a haircut!”  He sometimes firmly stated, “I’m an American! I don’t have to get dressed today.”

Above all, he was happy to be in America because he thought the American government was paying his bill for the Alois Center. I just let him continue thinking that!

Reader Review: Come Back Early Today as a Book for Caregivers

Wednesday, October 26th, 2011

When I wrote Come Back Early Today, I wrote it mainly as a love story. However, most people who have reviewed the book have focused on its value to caregivers. The following review illustrates that point.

This book is a must read for caregivers of dementia patients! It provides great insight into the difficult path that Alzheimer’s patients and their caregivers must face, and it is intertwined with a beautiful love story. It made me laugh and it made me cry, all at the same time! I watched my mother descend into a similar journey with dementia, and I wish my family and I had read it while she was alive. It gave me a deeper understanding of my feelings, and the frustrations that my mother faced daily, as her mind simply deteriorated, seemingly before our eyes. It also put my mind at ease, in some
ways. I realized that, although these patients fret and worry a great deal, they are also capable of feeling joy. Marie Marley found a way to celebrate the joys of life, at any level of coherence, and capitalize on those moments. She found a way to improve the quality of her loved one’s life through those moments.

This book is informative and very supportive for caregivers. It put things in a new perspective for me. It still makes me sad to think of all the patients, caregivers and families who must cope with this cruel disease. It is difficult to watch the mind of our loved ones deteriorate, no matter how you look at it. But I feel more at peace after reading this book. I realize that many of the struggles we face as caregiver’s of patients with Alzheimer’s are OUR struggles. The patient truly lives moment to moment. I can’t recommend this book enough.

“Silly Saturdays:” Ed’s Bad Appetite – Again!

Sunday, October 23rd, 2011

Alzheimer’s is a deadly serious topic, but sometimes laughter is the best medicine. So I’ll make a “Silly Saturdays” post weekly with some amusing story about Ed, giving us a chance to smile in the midst of our somber life situation. Please send me your own “silly” stories and I’ll post them, too.

As I’ve mentioned in previous “Silly Saturday” posts, Ed had a bad appetite all his life and was always seriously underweight. And his appetite got even worse when he was living at the Alois Center. One day when an aide was trying to feed him he said he wasn’t hungry. The aide then told him, “Marie is worried that you aren’t eating enough.”

He immediately responded, “If Marie doesn’t think I’m eating enough have her come here herself and tell me!”

The aide laughed, Ed laughed and I laughed, too, when I heard about it!

 

Alzheimer’s and Family Strife: Tips for Dealing with Critical Relatives When You’re the Primary Caregiver

Wednesday, October 19th, 2011

Having a loved one with Alzheimer’s disease can create a  tremendous amount of stress in families, although sometimes the diagnosis  brings family members closer as they work toward the common goal of caring for the patient.

In families where there is generally good will, conflicts  can typically be worked through for the common good. Advice given by the Mayo  Clinic (http://www.mayoclinic.com/health/alzheimers/AZ00027)  includes strategies such as sharing responsibilities among family members,  meeting regularly to discuss care issues, being honest in discussions, not being critical of each other, and, if needed, joining a support group for  Alzheimer’s caregivers or even seeking family counseling.

However, in families where people didn’t get along well before the diagnosis, it can create nightmares, especially for the primary caregiver.  The situation can be even worse when the primary caregiver is not a direct family  member, such as, for example, when the patient has remarried and the caregiving spouse is not a blood relative of the children.

The situation can become worse still if some of the family members live out of town and only see the loved one for short, infrequent visits. They just don’t have the opportunity to witness the severity and frequency of demented behaviors you have to deal with every day.

You may find you’re being criticized unfairly for the care you’re providing even though you’re doing a heroic job and making major sacrifices in your personal life to do so. Although you may never convey the full extent of the patient’s impairment or the burden the caretaking is placing on you, there are some things you can do to try to reduce friction within the family:

1)  Educate  Others about the Patient’s Condition: It can help if you make very detailed lists of the patient’s dementia behaviors and share them with other family members. Remember, they’ve never seen the patient do many things you see on a daily or even hourly basis, so put down even the smallest details. Update these lists frequently and share them with everyone on a regular basis.  

2) Have Other Family Members Care for the Patient for Awhile: The best way to let other family members get a better understanding of the loved one’s condition is to have them take care of the patient for awhile. Ideally, this would be for a week or two while you go on vacation, not just for an afternoon while you’re at a movie or go shopping. Almost anyone can deal with a demented patient for a few hours. Let them take care of the person for a couple of weeks and you may find you’re being criticized less and appreciated more. 

3) Be Patient and Understand Where They’re Coming from: Most of all, however, try to put yourself in the other person’s shoes and understand why they lack knowledge of the situation. If you can stay calm you’ll have a better chance of decreasing stressful interactions.

 

 

 

“Silly Saturdays:” The ‘Beep’ Game

Saturday, October 15th, 2011

Alzheimer’s is a deadly serious topic, but sometimes laughter is the best medicine. So I’ll make a “Silly Saturdays” post weekly with some amusing story about Ed, giving us a chance to smile in the  midst of our somber life situation.

This Saturday’s story is about a silly little game I played with Ed when he was at the Alois Alzheimer Center:

 I rushed into the Alois Center dripping wet. It was raining so hard I got soaked just coming in from the parking spot
closest to the door. I found Ed in his room trying to read the newspaper.

Before leaving my house that day I’d concocted a splendid game to play with my little boy. I started the visit by  handing him one of his myriad stuffed animals, an act that always made him smile. I reviewed his growing collection and selected Adorable for the purpose.

“Oh!” he said, his face shining as he stretched out his arms to take Adorable. “Oh! The little one!  I love him so  much.”

He put Adorable to his face and kissed him. And, as always, it was as though it was the first time he’d ever seen Adorable.

Suddenly I pressed Adorable’s nose and said “beep” at the same instant. Just as I’d hoped, Ed thought Adorable said  “beep.”  He looked at me and his eyes widened as he marveled at the bunny’s new ability. Then he pressed on the bunny’s nose and I went “beep” again. He laughed, pressed the button repeatedly, and I went “beep” each time.

He laughed more, then turned to me and said, his voice full of wonder, “Listen what he does, Kitty.”

He pushed Adorable’s nose and I said “beep.”

“No, Kitty,” I said, laughing, deciding to reveal the secret. “I’m saying “beep” – not Adorable.”

“Oh!” he said. “You are wonderful. You are great. You are superb to make this “beep” just when the bunny’s nose I press.”

He then exclaimed loudly and emphatically, “You could ask a hundred people and they would all say you are  magnificent.”

He then repeated that sentence verbatim.

Next he tried to trick me. He pushed the bunny’s nose several times in a row very fast. I managed to keep up, saying “beep” each time. Then he suddenly slowed down, still trying to fool me. He is really alert today. Then he picked up The Little Yellow One and we played the same game with him. Ed kept praising me for being ‘so magnificent’. We giggled like a mother and her two-year-old playing together. It was fun.  As I was leaving he asked when I was coming back.

“Soon,” I said.

“Oh! Kitty. I’m so happy when you come back soon!”

 

 

Alzheimer’s Caregivers – Get Help! 10 Things Friends and Family Members Can Do to Lighten Your Load

Thursday, October 13th, 2011

As we all know, taking care of an Alzheimer’s patient can be a full-time job that quickly leads to physical and mental exhaustion. Alzheimer’s patients, especially those in the mid and late stages, require around the clock care and no one can do that alone. 

If you’re the primary caregiver of an Alzheimer’s loved one it’s important to ask for help for two reasons. First, simply to preserve your own well-being, and second, because you can’t provide good care for your loved one if you’re exhausted all the time.   

Many caregivers are reluctant to ask for help. They often feel they should be able to do it all and they don’t want to impose upon others. The fact of the matter, however, is that most people are happy to help, they just don’t know what to do. 

A good way to start is to make a written list of some of the things you are currently doing that could potentially be done by someone else. Then you can assign names of possible helpers to each task. After that you can call each person on the list and simply ask if they would be willing to do that particular task. 

Here are 10 ideas for specific ways friends and family members can help you out:

  1. Do the laundry
  2. Help clean the house
  3. Cook a meal
  4. Mow the lawn
  5. Make minor home repairs
  6. Pick up the patient’s medicines from the pharmacy
  7. Take your loved one to a doctor’s appointment or other appointments
  8. Take your loved one out for a drive
  9. Come over for coffee and just be there for you as you talk about your feelings
  10. Most important, look after your loved one for a few hours so you can have some time to yourself 

So the next time someone says, “Let me know if there’s anything I can do to help,” have a specific request ready for them. You might be surprised at the positive responses you’ll get.

 For more information on this topic see Alzheimer’s Caregiving:  How to Ask for Help, an article published on the Mayo Clinic’s web site (http://www.mayoclinic.com/health/alzheimers-caregiver/AZ00018).

 

 

 

 

 

 

 

 

 

 

Alzheimer’s Caregivers: More Resources for You

Tuesday, October 11th, 2011

AARP (http://www.aarp.org/) is a nonprofit, nonpartisan membership organization for people age 50 and over. It’s dedicated to enhancing the quality of life for all as they age. It leads positive social change and delivers value to members through information, advocacy and service.

The organization’s website contains a vast amount of information for caregivers. Most of this is located in the CaregiverResourceCenter- http://www.aarp.org/relationships/caregiving/. It includes tools, work sheets and tips on how to plan, prepare and succeed as a caregiver. In addition it has posts of important items in the news, active online discussion groups, columns by various experts, and a “Take Care” blog, just to mention a few of the Center’s features. 

There are also literally hundreds of short, helpful articles in the following main categories:  Getting Started, Providing Care, Housing Options, Legal and Financial Issues, and End-of-Life Care. 

Although the Center doesn’t focus exclusively on caring for Alzheimer’s patients, it does have a wealth of information that can be of value to Alzheimer’s caregivers.  I urge you to check it out.

“Silly Saturdays:” I’ll Eat It If You Eat It!

Saturday, October 8th, 2011

Alzheimer’s is a deadly serious topic, but sometimes laughter is the best medicine. So I’ll make a “Silly Saturdays” post weekly with some amusing story about Ed, giving us a chance to smile in the midst of our somber life situation. Please send me your own “silly” stories and I’ll post them, too.

Ed had always had a horrible lack of appetite and was seriously underweight all his life. At 5′ 8″ the most he ever weighed was around 120. When he entered the Alois Center he was down to 111. The Alois aides were constantly trying everything they could think of to get him to eat more. When an aide once told him I was concerned he wasn’t eating enough he said, “Eef Ma-r-r-rie’s worried that I’m not eating enough you have her come here and tell me that herself!” 

Another time when an aide was urging him to eat, he finally smiled impishly and , obviously aware he was being humorous, said, “I’ll eat it if you eat it!” They both laughed and I had a good laugh, too, when the aide told me about it.

Alzheimer’s Caregiver Resource: The Journey of a Lifetime by Jane Meier Hamilton

Wednesday, October 5th, 2011

BOOK REVIEW. The Journey of a Lifetime: The Caregiver’s Guide to Self-Care, By Jane Meier Hamilton, MSN, RN. Infinity. 2010. 129 pages. Available on www.Amazon.com.

Ms. Hamilton has been a psychiatric nurse for 35 years and a family caregiver for 20 years. For 8 of those years she cared for her mother, who had Alzheimer’s. She also founded a company called Partners on the Path (www.partnersonthepath.com).

Many helpful caregiver resources are included in this book. Each chapter presents: 1) A story from the author’s Alzheimer’s caregiving experience, 2) Practical self-care recommendations, 3) Suggested self-care activities, 4) Other caregiver resources, and 5) Inspiring quotes from authors, philosophers, and others. The book also includes questionnaires to help readers assess their caregiving experiences.

The nice things about this book are that it’s short, easy to read, and to the point. Also, it focuses on down-to-earth, practical strategies caregivers can immediately put into practice. This makes it a valuable resource for those who don’t have time to read long, complicated self-care manuals. I highly recommend this book to you.

Alzheimer’s Caregivers: The Staggering Financial Value of Your Services

Monday, October 3rd, 2011

Caregivers Everywhere: The financial value of your service has been estimated, and the numbers are shocking.

All Caregivers: In 2009, family caregivers for loved ones (with all medical conditions) provided care valued at $450 billion. That’s more than the total sales of some of the world’s largest companies, including Wal-Mart’s $408 billion. It’s also more than the $439 billion in combined sales of Toyota, Ford and Daimler. (www.thefamilycaregiver.org.)

Alzheimer’s Caregivers:
In 2010, 14.9 million family members and friends provided 17 billion hours of unpaid care to the 5.4 million Americans living with Alzheimer’s and other dementias. The total economic value of these dedicated caregivers’ services exceeded $200 billion. (www.alz.org.)

Despite these numbers, however, the emotional, social and societal value of your work is inestimable by any measure.