Memory:Why is it so Complicated and so Sporatic?

I have been bringing Mom strawberries for the last several weeks. Mom has always loved strawberries and down through the years, I remember growing, picking and canning them. I learned to love strawberries also! As I mentioned, I have been bringing her strawberries for a couple of weeks and we have been enjoying them together. We have been talking about all of the things we did around strawberries and have had many laughs about those times. Today when I brought the strawberries she said "I was wondering when you would bring some strawberries, I have bee hungry for them." Now this was surprising since I have been bringing them almost daily for several weeks. Mom is becoming more and more unable to save her more recent memories.

We know that the hipocampus, located in the center of the brain, is a big part of the "save as " function of the brain. As Alzheimer's Disease progresses and the hipocampus becomes more and more affected, the person becomes increasingly unable to save their memories. Now this is very deceiving as the hipocampas will hold the memory for 24-48 hours and sometimes longer. So something the person remembers from 2 days ago will be lost on the 3rd or 4th day. When someone remembers for several days, but then cannot remember that event later, it is confusing or even seems feels like the person with dementia "is not trying". It may even seem like the loved one is out to confuse or make "fun of us". The contrary is true, it is just becoming more and more diffucult for the person to remember.

My advise and the advise I live by, is to rejoice when Mom remembers and let it go when she does not. It is the disease and its devistation at work. Mom and I have had fun with the strawberries, but she is not remembering this today. That's okay because the smiles and the laughs were helpful for her even if she does not remember them. A tough, complicated concept, but an important principle for all of us to internalize so we can move on as the disease progresses.

God bless you and may she keep you in the pam of Her hand.

Flashes of Mom:Hope Springs Eternal

Yesterday morning, I went to visit Mom for breakfast. She has had her Alzheimer's med patch reduced slightly as she was feeling "ill" on and off and this could be a side effect of the med. She weighs 91# and it is recommended to reduce the med for people who are under 100#. I have been trying to systematically visit at different times of day to see if her level of awareness, functioning, behaviors were getting better, worse or staying the same. We both had finished breakfast and were going to do her walking for the day. I brushed off her slacks where some of her scrambled egg had fallen. She looked at me with twinkle and said, "so you are giving me the big brushoff"!! We both had a good laugh and my heart sang. It was a flash of the Mom I have know for almost 64 years!! Hope springs eternal, but hopefully does not delude me or trick me into a "false" sense of hope.

Since I do this dementia work day in and day out at Harbor House, I understand this "flash" is just that, a "flash". I also understand this is a very temporary improvement in Mom's functioning. I also believe I should just enjoy the humor and enjoy Mom for the day. One of the reasons this disease can be so devastating is that these flashes can trick us into thinking that this new level will be a permanent state. If we can only enjoy the moment, enjoy the humor, enjoy the flash, but not be tricked into thinking it is permanent, we will be all the better for it.

Again let's enjoy the humor, the humanity, the momentary return of our loved one. Because Alzheimer's Disease is progressive and will eventually take our loved one, it is good to celebrate the joy of the moment. This joy, no matter how brief or how fleeting, is there, if we want to grab on to it, even if it is only a quick flash. The best advise I give myself and I would give you the readers, is ENJOY, but do not try to hang on to it. Hold the joy in your heart and forget what you can of the terrible devastation of the disease. In the long haul, your mom, dad, husband or loved one is the same person and should remain in your heart, the person you have known all these years, not what the disease has turned them into. Love them, cherish them and enjoy what you can. Again this is not easy, but with a bit of grit and determination you can hold the true person in your heart.

May God hold you in the palm of Her hand.

As the Disease Progresses

I just returned from a very short cruise to Nassau. For the last few years, when I have traveled, Mom has given me a hard time, a subtle but plain message that she missed me and I should not leave her again. 3 years ago my sister, my niece and I went to Ireland to meet some of our relatives and do a genealogy hunt. Upon landing in O'Hare I received a voice mail that Mom had gone to our home town with one of her friends and reserved a room at an an assisted living facility there (40 miles from the facility which our family owns and she was now living). We worked it out, but I have come to expect some grief when I get home after traveling!!

You can well imagine what I was expecting when I returned Monday. However, it was like I have never left. Even today she acted as though I had never been away. I should be thankful, but it is so very different. I can't say I miss it, but when you have lived with something for a number of years it feels almost like something is gone. A part of the loss however, is the fact that Mom is progressing and she not longer misses me. I, of course, knew this was coming. There have been many small things she is losing, her ability to carry on a conversation, her ability to feed herself. These, somehow were easier to accept. I don't have too much teaching to do tonight-only sharing. This is tough disease and sometimes those of us who share it with our loved ones are hit hard-kind like a punch in the gut. I have no humor tonight, no insight, just an understanding for those of you who are suffering.

May God Hold You in the Palm of Her Hand.

NCAA Playoffs and other Alzheimer's Topics

This entry is a follow up on our discussion RE Mom and I filling out the NCAA bracket. Mom and I had fun doing it and we followed it every few days as the games progressed. It became quite the process and Mom was doing very well because as many of you know, she picked many of the "Catholic" sounding schools. Several of them were quite the upsets. By the time all was said and done Mom won the entire process!!

Last Saturday, there was a quarterly party at Mom"s assisted living facility. One of my sons, his wife, and 2 of my grandson's were there and we discussed Mom winning the contest. Everyone congratulated her and we moved on to other subjects. After they left, Mom asked if she really had won the contest. Yes, I assured her, she had. She then commented on how disappointed she thought Logan (the grandson who had set it up) looked. "I think you should tell him he won. That's okay with me." Now Mom could not process the fact that Logan is almost 14 not 3 and just telling him he had won, would not work. He would "know".

Now I had a decision. I could tell Mom that Logan would know the difference or I could take her generous offer and tell her that this would be very nice and he would like that. One was the absolute truth and the other was was "entering into her world" and using what we often often call Creative Reality. I decided to "enter into her world" and tell her that this was such a nice offer, that I would do just that. She beamed when I told her, and it was apparent, that this approach very much nurtured her desire to make the world a good place for her family. That had always been her a key part of her philosophy of life.

My advise to anyone reading this account ,who has a loved one with the diease,would be to "enter into your loved ones world" whenever it is needed. The "truth" sometimes needs to be flexible as the disease progresses. Your loved one's happiness and quality of life can sometimes hinge on doing this. Try it and you will find it may assist you, when you are in a "corner". It will help you and please your loved one-real win-win!!

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

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.