The Roller Coster Continues

Mom is continuing to progress in her disease. She is less and less able to carry on a conversation or initiate a conversation. We are in her 7th year of actually knowing or having confirmed that that she has Dementia of the Probable Alzheimer's type. She probably had it for 3-4 years before this. So the fact that she has progressed is not a surprise. Mom will now answer questions almost exclusively most often with yes or no. A few days ago I was talking to her about my day, doing what we call "Storytelling". I then talked about what we would be doing tomorrow which was to polish her nails with the new "winter" color from the "Christmas red" which she had currently on her nails. When I finished, I said to her "does that sound like a plan?" She said "it sounds like something" with real emphasis in her voice and a big smile. Not a huge bit of conversation, but more than she has been able to do for several months. It made my heart sing. It was a small glimpse of "mom", a shadow of who she used to be!!

Now as we all know, joy is as stressful as a negative event. This comment by Mom caused a whole flood of emotions, love, tenderness, guilt-had I done enough?- could I do more next time and get the same or better results next time? I work everyday in the Dementia field and teach and counsel with families all the time, I still have the roller coaster ride as a daughter, when something like this occurs. I really want to say to all family and friends with people who have Alzheimer's Disease reading this, that when your roller coaster comes, don't fight it, but find a way to get out of it as quickly as possible. There may not be a way to totally prevent them. Knowledge, preparation, talking to others all help to flatten the lows and will help you to enjoy the highs. A few months ago I talked about the Dementia roller coaster, and I guess I now have begun to appreciate that the roller coaster continues, but I would not have it any other way.

May God keep You in the Palm of Her hand.

Alzheimer's Disease and Eating Diffuculties

Mom, until recently was able to inject quite a bit of humor in her conversation. A few months ago she looked across the table at the woman who sits across from her and said "she is so thin she looks like an xray". The irony of this comment comes from someone who weighs 92 pounds.

Eating difficulties and weigh loss are relatively common in Alzheimer's Disease. The damage in the brain affects the perception of food and hunger. In other words nothing smells or looks good. Hunger like pain may not be percieved for what it is. As the disease progresses the ability to remember what food is for is lost. Another eating problem which occurs in the disease is the inability to hold eating utensils, such a fork or spoon.

Chewing and swallowing problems also arise as muscle diffucuties in the throat and tongue arise. This slows the eating process and increases choking. It makes the meal process more problematic and less pleasureable. Eating becomes a chore for all involved, especially for the person.

Interventions which help with eating and prevent weight loss
1. Cue the person by eating with them to "rolemodel" the process
2. Make foods into finger foods so the person can help themselves as long as possible which perserves dignity and independence. This can be done by make most things into a "sandwich", including peas and mashed potatoes.
3. Remove distractions at meal time including music and TV. Even these are distractors to the brain which has diffuculty sorting out what is going on in the enviroment.
4. Take enough time for the eating process. Meals may take 30-40 minutes of eating time, but we must keep the food warm .
5. Add calories whenever possible. This can be in the form of butter on everything!! Lots of it! Also adding peanut butter on crackers or celery or high fat ice cream to Carnation Instant breakfast or Ensure.
6. Remember calories are king.

Meals are VERY important. Without this focus it leads to "failure to thrive" weight loss and a premature downward slide and loss of quality of life.
May God be with you and may She hold you in the palm of her hand.

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

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.

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

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!!

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.