Mom, Music and More: Keeping the Rythm of Life

My Mom loved music. We grew up with music. My grandmother played the piano at most holidays especially Christmas. Dad gave us accordion lessons. It was Mom, however, who made sure we practiced and were ready for our lesson appointment. She encouraged us to do performances in the backyard or accordion recitals in the neighbors garage. She loved, and saw the value of music. The dilemma was discovering how to keep music as a part of her life and determining what was the most beneficial to her and to her quality of life.

The Alzheimer's Association has some current suggestions posted on their Website which we have used at Harbor House and I tried to insure, were used with Mom and the other residents at her assisted living. The first suggestion is to use "their" music-the music the person with dementia liked when they were younger. This may be big band music, country and western music, but always keeping in mind what was meaningful to them. Next, use the music before and after reminiscing as it sets the mood (gets the wheels turning so to speak). It is important,however, not to play the music during the reminiscing or other activities, as the music then, becomes a distractor during the reminiscing. The mind, confused by the dementia, can concentrate on only one thing at a time.

Perhaps the most important, and I believe the most neglected, is adding movement to the music. Whether this is clapping, dancing or wheelchair dancing. Wheelchair dancing involves the person sitting, but their upper body moving with the music as though they actually were dancing. This movement adds a kinetic or muscle memory to the experience and helps the event to tap into other memories involving this or similar music and similar movement. These are but a few of the important, but powerful components of the use of music in the quality of life of our loved ones. Give it a try and I believe you will see tremendous and even surprisingly positive results.

May God keep you in the palm of Her hand.

Communication and Storytelling-Remembering Mom

With Mom being gone, life is full of adjustments. There are many reminders anything from continuing to go through her boxes of memorabilia to the occasional Blackberry reminders which pop up even though I have supposedly erased all the invites, the reminders continue. In going through one of her boxes I found a little poem about kisses. It must have been one of her favorites, but I never knew. It did remind me of a little interaction a few months before she passed. I got back in town when dinner was almost done so I came over and kissed her twice on her forehead as her mouth was full of food. "Well" she said "that was a double one". Now I have no idea what that meant or what she intended it to mean, but I tried to just go with it. "Yes" I said back to her, "I guess it is double trouble." She laughed and I proceeded to tell her about my day. I got a chuckle and we just went on.

Communication with people who have dementia can vary from being difficult to being VERY difficult. Whether it is someone who talks very little, to someone who talks a great deal but their word are entirely gibberish, they all present a real challenge. The best advise is do the best you can. Often it is about just picking out one word and going with it. There was some research from Duke University which indicates the most important element in communication is doing it. There is a natural tendency to talk less as our loved one talks less. The research indicates we do need to do exactly the opposite. We can talk about their history, your day your history or even the movie you saw over the weekend. A couple of years ago I was presenting to a Hospice group about this concept, and a young woman in the back raised her hand and said "I couldn't do that as I saw "Avatar" last weekend and it has blue people in it." I had to chuckle, but responded "well you are talking to an Irish woman, and we have had green people for hundreds of years." We all laughed, but the reality is "just doing" it is what is important. Just talking, creates a sense or normality, a sense I still count. Even if there is no response, the previously mentioned research showed that if the one way communication is carried out, there were more smiles and fewer behaviors over the next several hours. It DOES make a difference. Difficult as it is, continuing to carry on the one way discussion-becoming a storyteller-is great for our loved ones and in many ways good for us also. Do what you can. It gets easier as time goes on.

May God keep you in the palm of Her hand.

Funerals, Memorials and Other Greiving Processes

It has been over 2 months since Mom has passed. The Hospice which cared for Mom had a Memorial service for everyone who had died in the last 12 months. I thought I was ready for such a service, but it was very difficult. We were asked to say something as a tribute to our loved one and I could barely get through it-a surprise to me! I guess we all believe we are stronger than we are!!

Grieving is a strange and in many ways a counter intuative experience. It very much has it's cycles. It however definitely is not an A to Z experience. In other words it is more likely to be A to F to C to L to G etc. There are certainly ups and downs which take you backwards as well as forward. It is also an emotional experience at times and an intellectual experience at others. It is one thing to believe your loved one is "in a better place" and quite another to be able to let go. One can truly believe "It was their time to go" but still miss their loved one terribly. Much of the bereavement literature talks of grief as a process. Grieving is billed as a normal part of life. That however ,does not makes it any easier, quicker, or shorter. I did not think I would need or use the bereavement services offered. I guess I was wrong.

Mom, we would not wish you back, as we know you are in a better place, but we miss you terribly.

May God keep you in the palm of Her hand.

Death Certificates and Other Information About Alzheimer's

Mom passed away about 6 weeks ago. I will be receiving her death certificate in the mail in the next day or two. Now you may wonder why this would be a subject for the blog. For so long, we have very sparingly used Alzheimer's Disease as the cause of death. Like my Mom, many people with Alzheimer's Disease develop pneumonia and die. They also die of eating disorders, weight loss, falls, hip fractures caused by decreasing ability to safely walk and loss of balance. These are often, however, used as secondary diagnosis and are not listed as the cause of death. We are beginning to understand, however, the significant, primary role, Alzheimer's Disease has in the death of our loved ones. The role is huge and it is the cause of death, more often than it is given credit.

Alzheimer's Disease DOES cause people to die. It depletes the body by depriving it of nutrition, depriving it of mobility, and other necessities of life on the cognitive level. More importantly, Alzheimer's disease kills brain tissue. The brain is the center that tells all of the bodies organs to function as they should. It tells the heart to beat properly, the lungs to exchange oxygen, and the pancreas to produce insulin. At the subconscious level, all bodily functions are regulated in their proper order, by the brain. As Alzheimer's Disease destroys the brain tissue, there is less and less functional matter to regulate these processes. Eventually the brain does not have enough tissue to direct the body and coordinate it's maintence so the the person dies. Mom was a perfect example. Her body was depleted- she weighed only 89 pounds. She was able to take only 1-2 steps per day and she was able to drink in limited amounts. Although she did develop a bronchitis/pneumonia, a stronger person, with reserves in her body and her brain, would have been able to fight it off. Her dementia was so progressed, her brain so devastated, it could not continue. We now recognize that people with Alzheimer's do die from the disease. It is the cause of death more often then we acknowledge. In spite of the diagnosis on the death certificate, I know Mom passed from this terrible disease. It was her time and I would not wish her back. I miss her terribly, but I do recognize her death came from Alzheimer's Disease. I will continue to do what I can for the people with this disease and for the families who suffer for and with their loved one with the disease. This is all any of us can do until there is a cure or a true treatment for the disease. We all must continue to struggle and move forward in our journey.

May God keep you in the palm of Her hand.

Mom's Passing-Grief and More

It has been a month since Mom passed. I believe the transition to life without Mom has provided several life insights which I want to share with all of you. Before I do that, I want to pass on some of the things Mom did to help make this new phase of our lives easier. Mom had a very nice list of things which she wanted at her wake and funeral. Items she specified which were very helpful such as what hymns she wanted at her funeral mass: "Old Rugged Cross" and the prayer she wanted on her wake card. She also specified pallbearers and people she wanted to read at her funeral. She also prepared an outline for her Obituary. These do not seem large, listing them now, but did feel huge and extremely comforting when she passed. To know these are items she chose and we could now carry out on her behalf was immensely straightening for us. I was so grateful that I did something similar, as a gift for my sons. They of course will not truly appreciate it until my death as I did not truly understand the value of having these things specified, until Mom passed. Now on grief, I know you can never predict how you will react to your grief. I was so very fortune to have my brother here with me for a week after Mom's passing. We had many hours to talk, laugh and sometimes cry. We went through her clothes, her jewelry and the several collections she had of bells, angels and crosses. None of this put me into a grieving place. The one thing which hit me so very hard, was cancelling her Charter cable account. Go figure!! My wonderful husband finally asked me if he could go ahead and do the cancellation. Because it was in my name, he needed me, however, to give verbal permission. After simply saying yes, I was put into a long crying bout and several hours of solitary grieving. I now understand much better what I have heard grief counselors say for years. "You will not be able to see into the future and know how you will react." There is nothing fair, consistent, or reasonable about how you grieve. I do truly believe Mom is in a better place. She looked very much at peace. It was her time and she was ready. My tears are probably for me more than for Mom. I do miss her, but it would be selfish for me to wish her back. I saw her everyday, so there is a big hole left by her passing. I know that my largest task now is to create a new "normal" in my life. One of the grief counseling guides given to by Hospice reminded me "the way out of grief is through it" It is now part of my journey and I am ready to embrace it. Thanks to everyone for all the kind words, support and prayers. Life goes on. May God keep you in the palm of Her hand.

Mom's Passing-May She Rest In Peace

My Mom passed away on March 14th. At this time the Blog seemed to be gone. for the last 3 weeks my very able IT guy has been working on getting back up and running. He finally succeeded!! So we are back!! I wanted to post a modified Obituary. I just hope Mom didn't have a hand in making it disappear!! I am quite sure she did not however !! She always enjoyed my reading the posts to her and I loved hearing her comments. Here is a summarized version of her obituary and I will post next week a bit about her passing. Thanks to all who have sent their love and support and prayers. Helen Foley Mom, 86 passed quietly away, March 14th at her assisted living facility after a short illness. she was born on August 11th 1924, in Eastman WI, of parents August and Anna (Zlabek) Moeller. She married John Foley at St. Patrick's Catholic Church in Seneca WI in 1945. They moved to Dodgeville WI in 1958. John passed away in 1998. Because John was in poor health, she lovingly cared for him for 20 years. They enjoyed traveling extensively including internationally. She was an active member of St. Joseph's Catholic Church Helen was the chief cook at St. Joseph's School for 23 years. She was a tour guide at the "House on the Rock"for 7 years. She was a crossing guard for the city of Dodgeville and tutored for 5 years at St. Joseph school. She was a published author of "Rage of Ambition" published by Badger Books in 1991. She is survived by 3 children Delores, Kathy and Kirk, 4 grandchildren and 10 great grandchildren. Mom was a grand lady, superb Mom and an all round terrific person. We often called her a "character" as she was always helpful to others and always made life interesting for those of us around her. May she rest in peace. May God keep you in the palm of Her hand. I know she has Mom!!

Research Exercise and Mobility

In a few days we will come to our 2nd anniversary of Mom's Physical Therapist's decree that Mom was no longer "safe" walking with her walker. Mom is now walking only about 10 feet daily. Mom has gone through some health challenges in the last several weeks which has restricted her ability to walk and many days she was only able to stand for 5-10 seconds. Yesterday when we were walking her 10 feet (down from 150 feet 2 years ago) she looked at me and said "are you sure this is worth it?". It was a good question because walking even this short distance is a real struggle for Mom. There is also the question of being realistic. Over the last 20 years of Harbor House I have certainly come across families who were not realistic and I wanted to search my soul to be sure this is not the case for me. In the last two years, I have been the only one who is walking Mom. Since I am with her everyday, I was able to help her to maintain the walking safely. I am proud to report there has never been a fall in the two years, obviously it has been safe. I then replied "yes Mom, this is tough but keeps you in a good place. You have always been in favor of exercise, right?" Her reply was quick, but not necessarily cheery! "Yes, yes" she said "when can I sit down!"

The reason I could fairly quickly answer affirmatively regarding the need to keep as mobile as possible and exercise when you can even if you have Alzheimer's disease or a related dementia is simple. The research is clear. There is an ever increasing body of knowledge, reinforcing the positive effects of exercise and keeping as active as possible. The Wisconsin State Alzheimer's Conference in May, for example, has 3 presentations RE Exercise and Mobility in Dementia. The subtopics range from prevention of dementia, to preventing premature disability from not using your muscles etc. Keeping as active as possible is becoming increasingly researched and the results point to the need to keep moving. I would encourage everyone to look at publications from organizations like AARP which almost monthly have articles displaying the positive side of exercise whether a senior has Dementia or not. When possible advocating for our loved ones to keep mobile will make a difference.

May God keep you in the palm of Her hand.

Psychotropic Meds and Alzheimer's Disease

Recently I met with the Medical Director of Mom's Hospice group. Mom continues to deteriorate and we discussed this decline and the level of her psychotropic or mind altering medications. We had first used the Alzheimer's meds and then added a med which seems to help with her "disordered thinking." Before these two types of meds were ordered, she called out, "help" much of the time and seemed "tormented." After the meds she was much more able to carry on a conversation and be content. As she has declined, however, we wondered if perhaps less medication would be appropriate. We decreased the dose about 10 days ago and now she seems less settled, less at peace. We will return her meds to the original level.

Now it would be easy to look at this decrease as a "mistake", but it is important to remember that a bit of trial and error in med levels is necessary when dealing with the disease. As the person with Alzheimer's Disease declines, their brain is shrinking, actually dying. This deterioration may also dictate we decrease their psychotropic meds as what their brain needed 9-12 months ago may not be what is needed now. If we never try to decrease the meds we will never know if a lower dosage may be the appropriate. It may seem like trial and error and in fact it is. There is no absolute blue print for the med level in this disease. We always do want to have the lowest level of meds possible which also gives a quality of life to our loved one. The process is not easy, it is not clean and neat. It is a necessary balancing act. Only one more difficult, but necessary struggle in the tough fight against this awful disease.

May God hold you in the palm of her hand.

Alzheimer's Research-Mom Knows Best

Recently I presented some of the latest research to our leadership group. When I got to mother's assisted living facility, I began relating my day to Mom as I usually do. This seems to be enjoyable to her and it gives me a place to start, as carrying on a conversation becomes more and more difficult. I started listing some of the remarkable advancements and how they were breakthroughs which could make a real difference in the future. Toward the end of this, Mom said "Can any of this help me?" It rather broke my heart, as she was so right, none of this research was in time to help her. She then surprised me, stating "I am just glad somebody is doing something, this is so terrible." It had been a long time since she had mentioned her pain with the disease. I, in fact, had thought she progressed beyond even understanding the pain, but this interaction helped me to understand, she still, at least sometimes, has the pain, but was thinking still of others.

What is some of the newer research? First, we are now beginning to understand that the amyloid plaques, which Dr. Alzheimer found on autopsy in 1906, are formed because the brain of the person with the disease can't dispose of this normal protein. it's like having a clogged drain. Could a medication in the future help this problem? Secondly, we know there are times when we make more of the normal protein than others. When we are daydreaming we make large amounts of the protein and when we are focused in a deep thinking task for a long period we slow down the production of the protein. Also in deep sleep we produce less amyloid protein. How could we keep our brain in this focused states more of the time so we would not have the large amounts of the protein to dispose of, naturally or with a medication? Thirdly, there is more research looking at the relationship between higher education and Alzheimer's disease. It is exciting to see the progress of research in this field. If you go back 20 years the research was much more sparse. We are making real progress!! Thanks to all.

May God keep you in the palm of Her hand.

Death and The Truth an Alzheimer's Dilema

My uncle recently died. He was 90. He and my aunt (my Mom's sister) lived in an assisted living across town. He "took care" of my aunt Marie in the assisted living every day. She has quite profound dementia and as it is so often the case, his health was seemingly fairly good for 90, but he passed first. As I went over to Mom's assisted living, I weighed telling Mom the truth or just leaving her in peaceful ignorance. I decided to give her the news. Upon telling her of uncle Merit's death she said "many of us are dying these days aren't we"? She did not seem upset just reflective.

It is often a dilemma as to delivering "bad news". Is it better to tell the person with Dementia and potentially up set them or not tell them and have them not fully understand what is going on in the world around them. There is no right or wrong answer as whether we should tell someone with dementia or not. The reality is people with dementia forget. If they become upset with the news of a death for instance, but the reality is they will probably forget. If it was upsetting, it is probably best not to repeat the information. You have informed the person, but there is no need to force them to relive the event over and over. If however they were not upset you may want to tell them more than once. Again there is no right or wrong answer. Listening to your heart will show you they way.