NEVER List for Caregivers

I’m not sure where I read this. Perhaps it was from an email, from  one of the comments on the blog or from a forum. However, it is worth repeating. I take no credit for it.

"As a caregiver I know first hand how important it is to avoid aggravating, agitating, confusing or making demands on my loved one.  The lbd forum is a good place for more insights." 

I repeat the NEVER list from that source.

1. Never "argue", instead "agree"

2. Never "reason", instead "divert"

3. Never "shame", instead "distract"

4. Never "lecture", instead "reassure"

5. Never "remember", instead "reminisce"

6. Never "I told you", instead "repeat"

7. Never "you can’t", instead "do what you can"

8. Never "command or demand", instead "ask or maybe"

9. Never "condescend", instead "encourage or praise"

10. Never "force", instead "reinforce"

John 15:5,8 “I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing. This is to my Father’s glory, that you bear much fruit, showing yourselves to be my disciples.” Brought to you by BibleGateway.com. Copyright (C) . All Rights Reserved.

Warmly………….David

Some questions about Lewy Body Dementia — Would you provide some input?

Pam and I are going to have a busy day today out and about. I’m working on part 2 of yesterday’s post but I won’t have time to finish it today.

Meanwhile, I’ve been thinking of something. I would like to ask for as much input as possible from those with Lewy Body Dementia (LBD) as well as from their caregivers and friends. Here are some of the questions I have:

1. How old are you now?
2. Are you male or female?
3. How old were you when you were diagnosed with LBD?
4. How long did you have signs/symptoms of Lewy Body Dementia or some other type of dementia before you were diagnosed with Lewy Body Dementia?
5. Although no one can truly predict the prognosis of Lewy Body Dementia, many references indicate that the average length of life time with Lewy Body Dementia after diagnosis is about 7 years. What are your thoughts about this?

 Thanks in advance for you input. I sincerely appreciate it.

Warmly………David

 

FREE Subscription to My Blog 

RATE My Blog here — A high rating will help educate more people about dementia 

Several Helpful Websites on Dementia

I’ve discovered several informative websites today which I found to be helpful to me. I would like to share them with you.

One of them is from Lancashire Care Library and Information Service.The title of the article is “Dementia – New research reveals that mental health professionals fail to recognise the importance of sight loss in dementia.”

The second source is from the Tangled Neuron and Richard Taylor’s site.“1,001 ways to take a shower and perhaps have lots of fun doing it.”

 

We awakened to 9″ of snow in the front yard today and there’s more to come! The dogs love it….they’re like bunny rabbits jumping around.

 

Stay warm………..David

Dementia and Alzheimer’s Caregivers Make the Holidays Wonderful

I wish a very Happy Thanksgiving to all!

I found this article to be powerfully helpful! http://www.articlesbase.com/elderly-care-articles/dementia-and-alzheimers-caregivers-make-the-holidays-wonderful-656355.html

 

David

Adorable Photographs of Our Baby: Meaningful, Mind Stimulating Activities and More for the Memory Challenged, Their Loved Ones, and Involved Professionals

The author, Susan Berg, is donating a portion of the proceeds of the sale of this book to the Alzheimer’s Association.

In light of recent research, activities should take on a whole new dimension in long-term care. Activities can no longer be thought of as leisure time fillers, but rather, as opportunities to provide mental stimulation. If done thoughtfully, activities can help those with Alzheimer’s disease hold on to their remaining cognitive skills longer and enhance mood. In a word, activities should be “therapeutic”. Susan Berg’s book is a treasure-trove of therapeutic activities that can bring joy and purpose to those with a cognitive impairment.

Paul Raia, Ph.D, Director of Patient Care and Family Support
Alzheimer’s Association, Massachusetts Chapter

 

Susan Berg’s book is a must have for the Activities Professional and anyone who is caring for an individual with dementia. The baby pictures are delightful. The discussion questions will stimulate many memories, and the additional activity ideas will aid in holding the attention of dementia persons. This is a great tool for someone who has never assisted an individual with dementia, and it is also beneficial to the seasoned Activities Professional.

Brenda Bogart, A.D. Activities on a Shoestring
http://www.angelfire.com/in/shoestring, Crawfordsville, Indiana

 

Therapeutic activities are what we should all strive for when doing activities. I was very impressed with the involvement you created with the dementia population in this book. I am going to incorporate these ideas with the population I serve. God bless you for your caring and concern for others with such a tremendous need. I plan to share this information with caregivers.

Lisa Patton CSS Technician, Adult Life Programs
Hickory, North Carolina

 

Brenda I have had the pleasure of using Susan Berg’s book with residents having various stages of Alzheimer’s disease in both large and small group settings. This book is full of great ideas for discussion and reminiscing groups. I recommend this book to Activity professionals, caregivers and family members, alike.

Patrick, Dementia Unit Activity Coordinator
Beverly, Massachusetts

 

The book was very insightful. I especially enjoyed the pictures that the staff and family can use. They will help me communicate with the memory challenged and provide a personal touch while I am doing it. The ideas were also very helpful because they can involve people with all stages of dementia and can easily be adapted for verbal and nonverbal individuals. I give the book two thumbs up.

Vernessa LuShaun Burgess, CNA
Delray Beach, Florida

 

Susan Berg’s book is filled with heart-warming pictures of endearingly adorable babies that will leave any person feeling pleased and enchanted. The pictures reflect on many daily routines accompanied by discussion ideas that may help guide you through a therapeutic conversation with a person(s) affected by dementia. The book can be used as a tool in providing mentally stimulating one-to-one and/or group discussions.

Andrea Wolfram, Recreation Facilitator
Winnepeg, Manitoba

Swallow This! Bittersweet Memory Pills

 

This week I had three very good days in a row. So good that I overblogged on those days. Pam even said, “You’re spending a lot of time on the computer. Why don’t you take a break?” I felt well. So well that on this past Wednesday evening I began to ponder whether I really needed to take all these ‘memory pills.’ ‘Dementia pills.’ Nothing wrong with me. I don’t think I need to take them. I could go to work again. On those days you feel poorly, kick yourself a good one and get going. It’s all in your head (oops, excuse the pun).

So I mentioned it to Pam. A good mistake, I guess. Talking about tough love! The earth shook. The dogs barked. And the wind blew. I ended up stammering, “Yes, yes. I’ll take them and no, I didn’t stop taking them. I swear to God with both hands on the Bible.” Caregivers……..tough love does work!  My red face grin. 

Later that evening, Chad said goodnight to which I responded, “I hope you don’t die tonight.” In my heart, I was trying and meaning to say, “OK. You have a good night and sleep well.” I walked into the bedroom. Again the earth shook. Pam told me how inappropriate my comment to Chad was. I wasn’t sure what she was talking about.

Evidence of lacking good judgment twice within hours of each other. Before going to bed, she said, “You really did stop your medicine, didn’t you?” I had to convince her that I didn’t. Whether it was poor judgment, word or phrase finding difficulty or just plain not thinking, it wasn’t the read David. Pam reminded me of my past couple of years and the symptoms I’ve shown. She reminded me of my abnormal SPECT scan.

And then the next morning — Thursday. I awakened having slept poorly. I was in a fog and feeling fuzzy. My gait was a little stiff and slow. Good morning, Lewy Body Dementia. I see you’re back. Reality smacked me in the face! With no sarcasm at all, Pam said, “Do you still want to go off the Namenda and Aricept?” I had no retort……..

David

Spirituality and Religion for Caregivers and a Treatment Option for Dementia

Born again Christian, Christian, Catholic, Jewish, Native American, Sikh, Buddha, yoga, mysticism, Muslim, Kwanzaa, meditation, prayer, cosmic power, aheist, hell, fortune telling, aboriginal, horoscopes, cults, demons, religious and others. These are just some of the words we think of when the word spiritual is mentioned.

There is an old expression. Never argue over religion or politics! Without being argumentative, please leave some of your thoughts in the COMMENT section regarding the questions below. Hopefully this will be helpful to all of us in many different ways.

We are taught that a person is ‘normal’ if there is a balance between his/her social, occupational and recreational life. Others feel that the element of spirituality and/or religion should also be part of an individual’s life and it also needs to be in balance with the above mentioned aspects.

1. What do you think about this statement?
2. Do you think this is a necessary and core element in the treatment of demented individuals and their caregivers?
3. Do you think it’s too late to be concerned about the demented inidividual’s spirtitual state? Are their different aspects or types of spirituality which should or should not be used in their treatment?
4. Do you think this topic should be included as part of this blog?
5. Or do you think we should just cut the crap and leave this religious/spiritual stuff out?

Thanks……..David

You have the option to remain anonymous when you LEAVE a COMMENT.

Friday October 31, 2008

 

 

Why do drugstores make the sick walk all the way to the back of the store to get their prescriptions while healthy people can buy cigarettes at the front?

 

 

I know. I have a real soft spot in my heart for caregivers. Maybe I went overboard last night. I ended up sending 50+ emails to newspaper editors and government officials last night about November being the National Family Caregivers Month. I received an email today from Helene Moore part of which states, “word of mouth is potent, and my words are spreading, slowly but surely. So, maybe. Just maybe one of those emails will touch someone’s heart! I’ll see. But then I’ll never know but that’s OK too. Someone will have read the emails anyhow.

 

So, to all caregivers. There undoubtedly will come the time whenever I won’t be able to verbalize or to share this. While I have the wherewithal to do it, I give you my thanks and respect for all you do for your loved ones and friends. The energy you give, the sacrifices, the hurt and pain you sometimes go through, the joy and sorrow along with your own need to have rest and to be comforted just like anyone else. Your patience with me (and I speak on behalf of those who can’t) is appreciated. Pure and simple. I don’t know how else to say it.

 

Thank you, Pam. You are the best wife anyone could have. I am blessed that God gave you to me through the paths that we least expected. Please remember this in your moments of weakness and despair.

 

 

I finally started to make a few posts on the forums on the Lewy Body Dementia website. One of the forums is specifically designed for those of us who actually have LBD. So far, this forum is slow. But I’d like to see it be an avenue of support we can give to each other. Certain things will be easier to understand and to deal with after hearing it from another sufferer.

 

The source of most of our frustrations and anxiety are the result of living in the future, or in the past.

 

 

David

Wednesday October 29, 2008

 

Don’t be afraid to say “I’m sorry.”

 

Yes! It’s our first day of snow! Big snow flakes whorling through the air. Looks like there’s 1″ out there so far and possibly getting 3″ today. Not too bad for this time of year. I remember it snowing at the beginning of October.

 

I thought I’d write some thoughts about caregivers today. I’m sure most of them already know these things but I’ll jot them down anyhow.

 

1. Don’t worry about whether or not something makes sense. I have emotions which are still powerful and valid — I just may not be able to piece everything together. I actually get a little more distressed and anxious when I feel I’m not understood. I would prefer that my emotions are accepted instead of the reasons or logic behind something which leads up to the emotions.
2. I’m good at still reading body language. Try to keep a warm and gentle facial expression for me when you are trying to correct me or to help me. It would help to keep my anxiety down.
3. Let me save face. I probably already know something is wrong but I still have an ego!
4. Sometimes it’s a little more difficult for me to be able to abstract. Keep it easy. Just use simple concrete language and questions.
5. Ask me how I feel about things but don’t try to talk me out of something (unless it’s dangerous for me). Just let me know you’re trying to help me.

I keep talking about how our brain continues to grow whenever we learn new things. So, today I’m learning a new knitting technique called Portuguese knitting. I read the review about it on Carole Wulster’s Knitter’s Blog. I’m excited about it like a kid at Christmas. It doesn’t take much to make my happy! From her review it may help me to knit more smoothly with the tremors. It might even help to cut down on my right rotator cuff problem if I knit to much.

 

Oh, yea. Finally pleasant dreams last night. Hurrah!

 

Now to lunch and then on to learn Portuguese knitting.

 

David

The First Rule of a Good Lifeguard

The First Rule of a Good Lifeguard

 

 

Don’t drown with a drowning victim. Save yourself first.

Don’t spread yourself too thin. Learn to say no politely and quickly.

 

 

 

Caregiver Pointers

ü Do not lose your patience with me.

ü Sometimes I am sad and lost — I need you to be with me.

ü I can’t always help the way I’m acting.

ü Please don’t holler or make me feel guilty because I don’t remember

        or understand something.

ü I can’t always explain how I feel. It’s beyond your understanding too.

ü I’m not the person you used to know. I pray to God that you won’t

        expect me to.

ü I try to do my best so please stand beside me.

ü When I’m confused or frustrated just let me calm down and let me

         know you’re with me.

ü Hold me and give me a kiss when I least expect it.

ü Please just love me no matter how sick or bad I ever become.

 

Onward with my story. So during October, November and December 2007 we decided we needed to sell our home. We would need to move from California back to Pennsylvania, our roots. I had no option but to quit working and to go on permanent medical disability. I no longer was clever enough to cover my cognitive changes in order to do any job plus the fact that I could not drive. My wife’s father and her step-mother flew to CA to help us move. I have failed to mention that my step-son had moved in with us by this time. On December 27^th, the movers loaded up the truck and the 5 of us along with 2 Shitsu dogs left our fond memories behind. We loaded up 2 cars and drove across the country and arrived in PA on New Years Day, January 1, 2008. I remember very little of that odyssey other than I sat in the backseat of the car silently crying for several hours. What a loss. A career. Friends. A lovely home. Beautiful country and scenery. Goodbye California and San Francisco. I will never forget you. You’ve enriched my life and have fertilized my mind forever. Thank you California and to those with whom I came into contact.

Tomorrow……..the odyssey.

 

Dr. David