Posts Tagged ‘Elder Care’

I’m Planning a New Book

Sunday, July 8th, 2012

I think I have accidentally written a second book. I realized a few months ago that I’ve published over 50 articles online at the Huffington Post, The Alzheimer’s Reading Room and other sites, and that I could put them all together to come up with some sort of caregiver manual.

I have found a marvelous editor – Marjorie Rentz, MSW, who is with the Greater Cincinnati Chapter of the Alzheimer’s Association. Marjorie was my on-line caregiving coach when Ed had Alzheimer’s and we’ve stayed in touch. With her background in social work and all of her experience with Alzheimer’s disease, I couldn’t have found a better editor for my new book.

We’re just in the early stages of work. It’s going to be awhile before it’s out, but when we get closer to publication I’ll have a place on this website where you can pre-order copies.

A Valuable Resource: The Website of Bill Hammond, Elder Law Attorney

Sunday, July 1st, 2012

Bill Hammond is the founder of the Kansas Elder & Disability Law Firm in Overland Park, Kansas. His website, www.kcelderlaw.com, has a wealth of valuable resources for Alzheimer’s caregivers.

  • A free guide, “How to Deal With Alzheimer’s at Any Stage Even if You Are Low on Funds or Don’t Know Where to Begin”
  • Another lengthy and very detailed free publication, “The Alzheimer’s Legal Survival Action Guide”
  • Videos on various Alzheimer’s legal issues
  • A blog on relevant legal issues

When you sign up to get the free guides you’ll have to give your email address and Bill will send you valuable frequent emails about legal issues. (You can opt out at any time.)

These items are packed with excellent information, but before taking any actual legal action consult a local attorney because laws vary from state to state.

 

Another Resource for Caregivers – Caregiver.com

Wednesday, February 15th, 2012

I have mentioned many resources for caregivers on this blog, including AARP’s sections on caregiving and The Alzheimers Reading Room, just to mention two. I recently discovered a new website dedicated exclusively to supporting caregivers. Although not limited exclusively to Alzheiemer’s caregiving, Caregiver.com has many articles and tips about caring for people with Alzheimer’s. It also publishes a helpful magazine, “Today’s Caregiver.” Check it out.

A Helpful Tip for Reducing Your Distress When Your Loved One Becomes Distressed

Saturday, February 11th, 2012

There is a helpful tip that can help you reduce your emotional distress when your loved one becomes distressed over some event. You just have to be aware that people with dementia live only in the present.

 This means that people with Alzheimer’s have several traits:

People with Alzheimer’s disease usually don’t stew about bad things that happen to them. They don’t fret over things that happen simply because they don’t remember them.

Yet caregivers who experience their loved one’s distress over some issue tend to become quite upset. They suffer long after the person with Alzheimer’s has completely forgotten the issue and moved on.

In addition, people with dementia often adjust to change more easily than their loved ones do because they don’t remember how things were before the change. Thus, they are not aware any change has taken place.

Finally, people with dementia typically don’t worry about tomorrow. They don’t experience the kind of anxiety about the future that we may because they don’t have the mental capacity to do so.

So one secret to reducing your emotional stress is to remain aware that your loved one lives only in the present. That way you can be more at peace when your loved one gets upset about something. You will be able to end your own suffering as quickly as your loved one does and then you can move on to something pleasant.

 

 

I Am Now a Blogger on the Huffington Post

Sunday, February 5th, 2012

I would like to share with you that I have been approved as a regular blogger on the Huffington Post, where I will post articles on Alzheimer’s caregiving.

To see my first article go to http://www.huffingtonpost.com/marie-marley/alzheimers_b_1244155.html.

I would welcome any of you to go to the article and post a comment and/or click on the icon to become a friend.

Thanks for your support. I appreciate it.

Connecting with Alzheimer’s Patients in the Latest Stage of the Disease

Sunday, January 22nd, 2012

The following four activities are virtually guaranteed to reach persons at all stages of Alzheimer’s: 1) Being visited by a child, 2) Being visited by a pet, 3) Listening to or performing music and 4) Observing or creating artwork.  

1. Being Visited by a Child 

It’s a well-known fact that children can reach demented people at a deep emotional level that adults often cannot. 

Children can play with people with Alzheimer’s. If you need some specific ideas check out the Alzheimer’s Association website, which has a list of 101 things a child can do with someone who has Alzheimer’s. (www.Alz.org 

2. Being Visited by a Pet 

Much like children, animals can often touch demented people more deeply than people can.  

For example. at a nursing home there was a late-stage Alzheimer’s patient whose face someone’s dog licked when he held him up for her to see. The visitor told her the dog didn’t usually “kiss” people he didn’t know, and she immediately answered, “Dogs are very selective.” That was the first lucid remark she’d made for months. 

3.  Listening to or Performing Music 

After listening to music some are clearly more calm, in a better mood and more outgoing than before, which improves the quality of life for both the patient and the caregiver. Music has even been found to help those with dementia retrieve some memories their caregivers had assumed were lost forever. 

Often times late stage Alzheimer’s patients can sing songs, including the lyrics, long after they’ve lost the ability to recognize loved ones, dress themselves, or remember what happened five minutes earlier.  

4.  Observing or Creating Artwork                     

 If your loved one is able to go out, a trip to an art museum could also be very beneficial. Just looking at art, much like listening to music, has been shown to calm dementia patients. 

In the late stage of the disease, Alzheimer’s patients can often still create striking art work that allows them to express themselves and connect with their loved ones – even when they can no longer speak.  

You can arrange various types of art projects for your loved one. Common activities include painting with water colors, coloring with crayons, making scrapbooks or molding objects out of clay. 

Resources: 

There is an online store, Best Alzheimer’s Products, that features games for those with Alzheimer’s. http://www.best-alzheimers-products.com/games-for-people-with-alzheimer’s.html.

For more specific ideas about how to use music to engage people who have dementia go to: http://www.alzheimersreadingroom.com/2011/11/music-and-alzheimers-disease-using.html.

 

“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.

The Caregiver’s Bill of Rights

Thursday, September 1st, 2011

I have the right:
1. To take care of myself. Caregiving is not an act of selfishness. It will give me the capability of taking better care of my loved one.

2. To seek help from others even though my loved ones may object. Only I can recognize the limits of my endurance and strength.

3. To maintain facets of my life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

4. To get angry, be depressed, and express other difficult feelings occasionally.

5. To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

6. To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

7. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

8. To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.

9. To expect and demand that as new strides are made in finding resources to aid physically- and mentally-impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

This Bill of Rights has been circulating on the internet for some time and is attributed to various persons on different sites. This version is taken from www.caregivers/utah.gov, where it is attributed to Jo Horne.

Using Music to Reach Alzheimer’s Patients

Saturday, August 27th, 2011

They say that children and pets can reach Alzheimer’s patients in ways that we normal adults can not. I also found that music was a wonderful treat for Ed. One time I engaged a classical violinist to come to the Alois Center, where Ed lived, and play a special concert for Ed in his room. I even asked the guy to wear a tux!

Ed was delighted beyond belief. He moved in time to the music. Hummed along to some of the pieces he knew. Clapped heartily at the end of each selection. And held hands with the violinist after the concert was over. (Ed held hands with ALL of his visitors!)

After the concert I asked the violinist to sit beside Ed on the sofa so I could take a picture of them. Ed looked as proud as if he were sitting next to the President or the Queen of England.  I knew he wouldn’t remember the concert the next day – or maybe not even that evening. But he had thoroughly enjoyed every second of it while it lasted. And that’s what it’s all about to give joy to an Alzheimer’s loved one.

Has anyone else used music to bring joy to their Alzheimer’s loved one? What was your experience?