Wednesday, December 30, 2009

The Holidays With Alzheimer's Disease

The Holidays are moving forward and when you have someone with the disease, the Holidays are bitter sweet. Although the joy is still part of the season, the Holidays often are full of many bumps. Just before Christmas I was spending time with Mom and although I spend a hour or so each day, this day, as the 2 days before, I was only spending 30 minutes or so. I said to Mom, I have to go, I have so much to do. I love you." She looked up at me and said "if you loved me you would not go" At this very emotional time of the year, you can imagine how difficult this comment was. Although I tell families all the time "it is the disease talking, not your loved one" It is different when it is your Mom. It is true, however, that Alzheimer's Disease causes people to do and say things they would never have done without the disease.

Let's discuss some things which can help us to decompress from the "Holiday Stress" over the next several weeks.
1. For any parties, family celebrations or other gatherings, remember they do not have to be perfect. Don't create your own stress
2. Try to keep things simple.
3. Phase the festivities in and out. The best way to not end up depressed and with a sense of loss, is to not take away ALL of the holiday trimmings at once.
4. Use the traditions of the families. This is helpful to you and for your loved one with the disease.
5. Get enough rest, exercise, and fluids. Over eating, too much coffee, and inactivity, all are forms of stress in their own right and take their toll at this time of the year for you and your loved one.

Take care of yourself. May God keep you in the palm of Her hand

Tuesday, December 8, 2009

Alzheimer's Medications: What makes a differance?

One of the requests made RE Research in our last poll was to talk about medications and their impact on the quality of life for the Alzheimer's Disease survivors. A while ago mom said to me, "you are a sweet heart" and I replied "you are a sweet heart also". She looked back me for a few seconds and then said "I guess we are just a couple of sweet hearts!!" Before Mom was put on her current Alzheimer's med, she was unable to inject this humor into a conversation.

The current Alzheimer's medications help to slow the decline of the disease. I help Directors manage residents behaviors and these medications have a positive impact. We also see a profound decline in the cognitive functioning in those who are taken off the med. Additionally more behaviors occur and they often seem to just enjoy life less. The common myth says "there comes a time when the person with Alzheimer's disease no longer gets benefits from these medications". Both the research and our experience shows discontinuing the med will precipitate a huge and very steep decline.

In our next posting, we discuss other Medications which make a difference. May God bless you and hold you in the pal of Her hand.

Monday, November 9, 2009

Who Knows What They Will Remember!!

I just returned from Houston where I accompanied my oldest granddaughter to a dance scholarship convention. I was gone 3 days and returned Monday not knowing what to suspect. Sometimes when I am gone, she is very distant and sometimes a bit angry that I have been gone. Tonight she looked at me and said do you remember when we picked the lilacs this spring?" I said of course. Mom then said "well I think it is okay to pick the lilacs, but I think it was illegal to pick the apple blossoms". Needless to say I was pretty speechless. I then asked what made her think of that. She said "your perfume".

I puzzled over the remarkable memories then realized a few days before I left, we had reduced her Alzheimer's med patch dosage. She has lost some weight but is now stabilized but, this meant she probably was on a higher dose than was therapeutic. In other words she probably was being overdosed and the reduced amount may be more appropriate for her. I am a big believer in the Alzheimer Medications and have had Mom on one of these med since she went into Assisted Living and I believe it has been a big advantage for her. The next Blog will discuss the various issues associated with these med, but for tonight I am just very thankful for the med and the quality of life they have given both mom and me!

May God keep you in the palm of her hand

Monday, October 26, 2009

Why They Do Whay They Do!!-WTDWTD-Part Two

Behaviors or WTDWTD have many components. We discussed where the disease starts or concentrates in the brain, determines what behavior or function loses show up first. Early in the disease, rarely do two different people act alike or have similar disabilities. Some people with Alzheimer's Disease loose the ability to speak early in the disease, others have mobility troubles early and yet others have neither of these two but have very faulty judgement. You probably have noticed that I did not mentioned memory loss.


Memory loss is the the most frequent symptom identified with the disease and yet it may or not be an early part of the disease. Although memory loss is not normal aging. Just, however, because a person does not have significant memory loss, does not mean there is no Alzheimer's disease. The memory loss, as well as the behaviors we have discussed, originate from the brain death that is occurring. It tough to think about but it is truly the cause of all we have discussed.


In addition to the brain tissue destruction which causes the behaviors, the person's own personality also contributes. Sometimes the person's characteristics become more exaggerated because the loss of the person's inhibitions allow a trait to become more exaggerated. Sometimes the loss of inhibitions allow the person to do some things they never would have done with the normal inhibitions in place.


Mom has always been kind of partial to men. She liked male MDs, and male waiters. She always was very discreet about these choices, but we kids knew this to be true. A few weeks ago, she said "hello Corey" to a male care giver as he passed by. One of the female caregivers said to Mom, "Helen, why do you remember his name and you don't remember mine?" Without missing a beat, Mom said"because he is better looking than you are!" With out the dementia, mom would never have said this, but she may have thought it. The disease allowed her to now say it. It was worth a good laugh and even she chuckled. Just another WTDWTD!!


God Bless and may She keep you in the palm of her hand!!

Wednesday, October 14, 2009

The Silver Lining

One of the joys in having a Mom with Alzheimer's is the loss of inhibitions. I was raised in an era of "spare the rod and spoil the child'. Affection was not given out easily. My Mom, likewise, was raised by very strict German/Bohemian parents. Telling someone, even a child, you loved them, was reserved for very special occasions such a birthdays, weddings, graduations. Now Mom is likely to tell me "I love you" 3 or 4 times in an evening. I never get tired of hearing it, however!! So I guess mom was right, there is a silver lining in everything if you continue to look for it-even this tough disease. May God bless you and keep you in the palm of Her hand.

Monday, July 20, 2009

Life Story Book-Research says it is a window into the Soul!!

More than 5 years ago, there was some remarkable research out of Europe, which has been replicated in the U.S. which indicates the huge success one can experience by using the very old reminiscing technique with photo albums. The research indicated an enhanced effect by doing this "remembering" in a group setting with cohorts who also have Alzheimer's Disease. Since many people who are progressed in the disease, better remember themselves when they were 20-30 or 40 the photos an accompanying memories are profound. We have used the technique at Harbor House for more than 5 years and have seen tremendous results. Numerous persons with the disease will come up with words or phrases at the first introduction to the concept at a family night party to develop their "Life Story Book" with their family. These are often men or women who have not spoken for months. We will talk later about why the researchers believe it works, how to go about putting one together for your loved one in the prescribed manner, and how to use it. Tonight, however, we are going to talk about the concept and Mom's use of hers.

Mom's book got done several months after she came to live in assisted living at Harbor House. I of course should have done it immediately, because I understand how powerful it is and have seen the results. I, however, acted like the typical family and put it off. When we did go to the family night, however, Mom said to me, "where has Mom been hiding these pictures?" In the next breathe she said " this is just like having Betty Jean back with us." Betty Jean is a sister who died at the age of 10- about 60 years ago. Mom got big tears in her eyes, as did I!! In the next breathe she looked at her wedding picture and said your Dad was a very handsome man and he married a very beautiful women! I am not sure if she know at that moment she was talking about herself, but I didn't ask and just enjoyed the moment as I could tell she was also. The Life Story Book provided a wonderful night of memories and many after that.

At another time will discuss this technique further and some of the wonderful comments and memories it has "jarred" loose for Mom. Enough for now, however!

God Bless you and may She keep you in the palm of Her hand.

Friday, July 3, 2009

WTDWTD-More insights

We have had several requests for additional explanation of the "behaviors" people with Alzheimer's Disease experience. We have also called these occurrences "Why They Do What They Do or WTDWTD. In our last discussion, we talked about the person's likes and dislikes and how that did translate over to their WTDWTDs. We discussed Mom's like of nice clothes and good grooming and how that was still very important to her.
Another factor which enters into this, is where the disease is initially most concentrated. If it is most concentrated in the frontal lobe, reasoning and judgement will be affected first. If, however, it is first concentrated in the temporal lobe, language may be first affected.
Mom had been living alone with help types coming in. She however, called the ambulance to go into the emergency room 8 times in a short period, with such complaints as constipation. Upon receiving the 9th call, the ambulance crew told she was fine, so she then called the police and they took her in. The ER docs told me something had to be done. I agreed, but told them it was very hard because she was "my Mom"!!
Now this occurred in a woman, who 4 years later can carry out a conversation RE the advantages of President Obama Vs. Bush, but may start saying "help, help" in the middle of the conversation rather than asking for the peanuts she really wants. Her issue is not so pronounced with memory as with judgement. It is a strange disease!
I hope this helps in your understanding of Alzheimer's.
May the good Lord keep you in the palm of her hand!!

Saturday, May 9, 2009


Alzheimer's Sisters Travel with Hope Tour Announced

Harbor House-Alzheimer's Sisters Travel with Hope-Mary Kay Baum & Chris Baum Van Ryzin



This posting is going to be a bit different from the others we have done. Mom always taught us to “look on the bright side” and our blog has been and attempt to continue to do this with a bit of teaching thrown in. This is why when I heard the message of hope the Baum sisters were giving, it reinforced the idea for the Blog and the message of hope. This also reinforced our company’s mission and the fact Mom and the Baum sisters know and respect each each other and the mission of Hope.

Harbor House Memory Care is committed to providing educational, advocacy and enrichment opportunities for those with memory loss, their loved ones and professionals in the communities where are homes are located. That is why Harbor House is proud to announce it’s partnership in bringing a special community presentation called, “Traveling with Hope: Sharing Our Life with Memory Challenges” by Mary Kay Baum and Chris Baum Van Ryzin to each of our Harbor communities.

Mary Kay and Chris are sisters who will share their firsthand experience of maintaining a high-quality of life while living with a diagnosis of early-onset Alzheimer’s disease. As person’s who are diagnosed with the disease, they will share ideas that everyone can benefit from in all areas of their health, including reducing the likelihood and severity of experiencing Alzheimer’s disease.

The Baum sisters will also discuss ways they are working to enhance the lives of those with early-onset Alzheimer’s disease through a national network of similarly situated persons called forMemory. The group’s website http://www.formemory.com/ those diagnosed with early-onset Alzheimer’s disease through a blog support system, national conferences and a database of those diagnosed, which with permission, is used for research and education purposes. We will be posing both a photo and a poem from these very talented ladies book.

Life with Memory Challenges” presentation.

If you’d like to experience this message of hope, please check below for dates when the “Traveling with Hope” presentation will be coming to your area. The unscheduled sites will be posted in the next few days.

Wednesday, April 29, 2009

It's your Choice

I was traveling for several days a few weeks ago. When I returned, I came into the assisted living home that Mom is in. After saying hi, I gave her a big kiss and said "I missed you Mom" and then gave her another kiss. Mom then looked at me and said "You kiss just like my daughter, Delores."
At this point I had two choices. I could have chosen to be devastated and could have said to my self "she has certainly deteriorated in the days I was gone." Secondly I could have chosen to say to myself "Wow how wonderful I have such a memorable kiss!!" I chose to view her commentary through my "Rosy" lenses and believe the later. I also got a big belly laugh by using that interpretation
My experience as a caregiver has often times felt like a roller coaster. As family members and friends of someone with Alzheimer's Disease, we all have a choice as to the lenses we use to view this type of experience. Mine has a rosy "glow" to it. What lenses and the color of the lenses we use is our choice. It however is not a one time choice, but a daily choice. This daily choice, however, makes all the difference in the interactions we have with our loved ones. Its up to us.

Thanks for joining us and may God hold you in the palm of her hand.
This is my Mom Helen.

Upon returning from a recent trip, I walked into her assisted living facility and after greeting her I gave her a kiss. I then told her I missed her and gave her another kiss. She looked at me and said you are a sweet heart. She paused and said "you kiss just like my daughter, Delores."

In that situation I had two choices. First I could have been devastated and felt like I was responsible for her declining over the last few days which I was gone. Secondly I had the opportunity to say to myself how wonderful that I have such a memorable kiss! I decided to look at it as the latter. She remembers my kiss and that is grand!!

In my experience, the caregiver role for the family can be quite the roller coaster. I have found humor and irony an effective lenses that can give a healthy "glow" to our interactions. We all have a choice in the lenses we take, however it is not a one time choice. It is a daily choice. Each choice however determines the interaction for the rest of the time we spend with our loved one.

Saturday, April 25, 2009

Why they do what they do: AD and the person

There have been several requests and questions about what some people call "behaviors". It is not fashionable to use that term, so we will use the phrase "why they do what they do" or WTDWTD. That is probably too confusing!! Oh well!

Tonight we are going to discuss the foundation of the WTDWTD. The first, but not the only reason, we do what we do is inside our heads. The foundation of what we do is literally found deep in the center of the brain, specifically in the Amegdela. This small little "nub" is found at the tip of the Hipocampus and is the seat of the of our "emotions" or that which makes us who we are. This is most times, intact until the day we die. With a bit of diligence, consistency and understanding we can access this place. We will discuss "how" at another time.

If you follow us over time, you will recognize that a reoccurring theme with Mom, is her desire to "look great". Whether it was her weight, her dress, or her home, she wanted the "wow" factor. The following story is one of the first times I became aware of this trait and I now know it is part of Mom's WTDWTD.

We were not wealthy people. My Mom made many of my clothes as I was growing up. She was a wonderful seamstress. One Christmas when I was about 10 years of age, Mom made me a beautiful baby blue taffeta dress and I adored it. It was then announced that I had a solo song in the School Gala which was a highlight of the season in the small town in which we lived. I guess she thought I needed an even more special dress. The next Saturday she took me to the local department store, which we rarely frequented. She picked out the most beautiful and I am sure the most expensive dress of pink organza and black velvet and purchased it for me. I felt like a princess!! To this day I do not know where she found the money, but I have been eternally grateful!!

Every day, I pick out mom's clothes becuase I know that is important to her even now. Mom can no longer make choices, but it is important to her to approve the clothes for the next day. Some days when I ask her what she thinks of the outfit, she will ask "do you think Delores would approve"? Some days I tell her I think Delores approves and other days I tell her that I picked it out so I approve. I do this in a non confrontational, supportive manor. Based on what I know about the research, and the most success approaches, I try not to correct her or talk to her in "reality orientation" way. I underswtand it is all part of Mom's WTDWTD.

In using this approach our visits rarely become argumentative. I can honor her asking how her hair looks or her very frequently asking how much weight I have lost. Each of these are done numerous times. Because I understand this is just part of who she is, I can love her for it.

Thanks for joining us and may God hold you in the palm of her hand.

Thursday, April 23, 2009

I am just a Daughter!

I see my mom quite a few days a week. Because my mission, the last 20 years, has been to to provide the highest quality of life possible to person's with Alzheimer's Disease, I think I should "walk the talk". A few weeks ago, however, I was with Mom and we were watching "Hard Ball" on MSNBC. Mom and I were talking about politics as we watched. Mom's two of loves, in terms of conversation, were politics and sports. Mom can carry on a a great conversation at times, but in the middle of the conversation that night, she started calling out/yelling HELP HELP! Now this is not unusual and it is not ordinarily disturbing. It is what it is, part of the disease. However this had been a tough day, also Mom was not having a great day and neither was I. So I said what, of course you should never say, "Mom if you are going to continue to yell I am going to have to leave". Now that seems heartless in retrospect, but it was how felt at that moment. Mom paused for a moment, turned her head toward me and asked, "Why do you think I do that"?

Now I do talk to her upon occasion about her Dementia/Alzheimer's Disease. Not this night, however. I simply said, "I don't know Mom"

She was silent for a few seconds and then turned to me and said, "do you suppose it could be my dementia?" Well I was blown away!! I laughed so hard I had tears in my eyes! I finally said "maybe Mom, maybe"

The rest of the evening felt different! A good laugh can change so much. It turned out to be the gift that keeps on giving as I have told a number of my friends and family and it always brings a smile to their face. I am smiling now as I tell "our" story. Okay, I am not a perfect daughter", but after a good laugh, I could forgive my self.

So keep smiling and enjoy what you can. Thanks for listening to our tale. May god keep you in the palm of his hand.