Communication-Be Prepared Not To Be Perfectly Prepared

I was gone for a few days to Tulsa, Oklahoma. I went to a dance convention with two of my grand kids. My oldest grandson is an assistant in one of the dance companies and my granddaughter was a scholarship finalists. I always wait to tell Mom, when I am going till the day before I leave. She then does not have to morn my going ahead of time. I always dread coming home,however, as I am not sure if she will be upset that I was gone. When I come home, I always bring her a bell to add to her collection. When I arrived, she said "my daughter, Delores, will like it that you brought this bell for me, she always brings one too". What is the right answer to this comment? I simply said "I thought you would like it, Mom". I tried not to "correct her" and just move on. That's what we did and it was fine. We talked about what Bryce and Caitlyn did at the convention and where we ate and lots of other fun things. She really enjoyed hearing about the great grand kids. She seemed to reorient herself without my doing it and embarrassing her.

My point is, I do this for a living. I teach communication with people that have Dementia 3-4 times a week. Even with this, level of experience, I am not always sure what to say. Having said this, I will just reinforce it is important to know what to do in a general way. Knowledge is helpful, but you will never know what to say in all circumstances. From there, do the best you can "getting into their world". The person with Alzheimer's Disease or other Dementia's can't get in to our world so we often have to get into theirs. Its not easy, but it is rewarding!! God Bless all of you who care for people with dementia, as you teach me as much as I teach you! Thanks.

May God hold you in the palm of Her hand!!

March Basketball Madness-An Azheimer's Family Event

We have always been a "sports" family, whether it was the Packers, the Badgers or the Braves, (yes the Braves used to be in Wisconsin!) and we rooted them on because they were "our" teams. Mom always loved watching and cheering for them and taught me to do the same. The last few years, my grandson Logan has put together a bracket competition for the NCAA tournament. This year was no exception. Yesterday I took over the bracket when I went to see Mom and we went through the match ups. Last year she would ask me who was favored to win. Her Dementia has progressed, however, beyond being able to do this, so this year, I volunteered in each pair, who was the favored of the two. Now I expected her to just choose the favorites, but she surprised me. Any team which had a "catholic name" she chose, thus she chose St. Mary's, an upset today, and Notre Dame, who got upset today. She seemed to enjoy choosing. She also enjoyed it when I called Logan to get the bracket input information and had to get further input advise from my son. She really loved it when I mentioned this had become a 4 generation project. We had a blast and will continue to discus how well (or poorly) we have done for the next 3 weeks.

Adapting and simplifying tasks and projects will help you to share your life with your loved one and replicate the life your loved one would have had if they had not gotten the disease. We want to do this at a level which is manageable for them. Time spent with them can be more fun, and probably more stimulating for them. How can we make the experience "failure free"? How can we include others in the family? How can we do it in a way which they can handle, but still participate? All questions we can ask our selves, and when answered, can make a fun, interesting experience for all without a huge amount of effort.

Mom and I want to thank my son, Jonathan and my grandson, Logan for making this experience possible and fun. It's another step in the Alzheimer's journey made positive. Thanks to both of you!!

May God hold you in the palm of Her hand.

"I Love You" and other Alzheimer's Positives

When I contemplated doing a Blog and feature my Mom, about a year ago, I discussed the idea with her, at the level I thought she could understand. When she said that it was a good idea, I asked her what I should write about. She looked me right in the eye and said "tell them we love each other." I need to remind everyone reading this Blog that I grew up hearing "I love you" very sparingly' not because my parents did not love us, but in the 50's this was said out loud much less than we now say it; just a sign of the times. It was very "cool" to hear Mom choose that topic.

That was a year ago, and Mom has progressed in her disease, but it gets even better. Now if things aren't going well, I can put on a big smile and and look at her squarely and in a few seconds she will say, "I love you". I never thought I would have a instant way to get my "love fix." Now I will say, Mom says "I love you" to others, not infrequently.

I could get bummed out about this, but, I have chosen to look at it as "Mom has a lot of love to go around, and after all I know she really does love me." The other question is why does she do this. Of course, we cannot know exactly why someone with Alzheimer's disease, does what it is they do. We cannot ever know why anyone does what they do, but there are a few clues. Mom always loved being the "healer", loved being the person that others "feel good." I believe this is her attempt to make me feel good, feel loved. Even though Mom is quite debilitated her basic personality is showing through in this gesture. This is often true in the behaviors of people with Alzheimer's. Their basic personality shows through if we are patient enough and creative enough to figure it out. I would encourage everyone to find the patience and creativity to do this, it is very rewarding.

Thanks, good night and may God hold you in the palm of Her hand.

Music-Noise and other Counter Intuitive Dementia Facts

Mom and Dad always loved music. In my early years it was the Country and Western. Now I am here to tell you it was the old time, very twangy Country and Western music, not the modern "cross over" that you now hear. The "tumbling, tumble weed" Hank Williams type music. Later they became "more enlightened" And played modern music like the Beetles!! Whether in the car, at home, or watching TV, we had music. Mom can sing the oldies with the best of them!!

Doesn't it make sense that the use of music would be therapeutic at meal times, during activities and during cares? It just makes COMMOM sense, doesn't it? Well the disease rarely makes common sense and this is true for music.

When you have Dementia, you can focus on only one detail at a time. No multi tasking here. If you are playing Bingo, and have Dementia, you need to concentrate on Bingo. The same is true of eating, you need to concentrate on eating. If you have Dementia, music in the background is simply noise, or worse yet, it is a distracting factor. Again, you can concentrate only on one thing at a time. Now if I am resting and have Dementia, the music is great, because I don't have to concentrate on anything else. Our loved ones have this request, "present me with one thing at a time and I can do pretty well!!" This a simple concept, but not an easy one to remember because it is so counter intuitive. It is important, however, for their highest quality of life and prevention of behaviors caused by the "overload" or over stimulation of trying to concentrate on two things at a time. Music at the right time is great, but knowing when it is the right time is, is most important!!

Thanks. May God keep you in the palm of her hand.

They Just Say "No"

I had breakfast with Mom this AM. When I have breakfast with Mom, I always get her coffee after we are finished. Today I asked her if she would like some coffee, and she said "No". I then, realized I needed to take my own advise-never ask a Yes /No question as people with Dementia/Alzheimer's Disease will almost always say No. I then got her coffee with milk and sweetener-The Irish way-she immediately started drinking it and said this is "great coffee."

Although this seems counter intuitive, it was quite predictable. I always tell our team members, "our residents with Dementia say no for a living" and the research supports this supposition. If the person says No, nothing is expected and this comfortable. If the person says Yes, they know at some level, that they may be required to do something and this is not comfortable. After lots of "No, don't do that", "stop, you are going the wrong way" and other failures, No is the most comfortable response.

It is important that those of us who care for and love someone with Dementia/Alzheimer's disease, that we need to approach the choice factor differently. If ,for instance, Mom had refused to drink the coffee, that would have been fine. This is Mom's level of ability to choose. Choice can be overwhelming to those with progressed disease, but by adapting and modifying choice, to the level the person can successfully tolerate, everyone can enjoy the interaction more and person with the diease will have the ability to chose and feel successful.

May God Keep you in the palm of Her hand!!

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.