by Marlene Kupsch
You know when you walk in a room and you stand there for a second and laugh cause you have no idea why you went in there? You’re talking to someone and you can’t think of that word, yeah you know, the one you say when you want to sound smart? It eventually comes back, right? What if it didn’t? What if that happened to you with every single thing in your daily life? What if it repeatedly happened and your doctor told you that it will only get worse and he can’t stop it?
I have the joy of meeting and spending time with some pretty great people through volunteering with a local hospice. Most of the patients I meet are older and have a variety of health issues. One very common health issue is Dementia/Alzheimer’s. It is not an easy disease to understand, and I feel grateful that most times the patients do not know what is happening to them and they do not suffer. One special lady, who has the symptoms of Dementia/ Alzheimer’s loves to do crafty things. I came across these styrofoam shapes that you push colored tissue paper into with a little plastic stick. She loved it and was very pleased upon completion. Although she no longer remembers where she has left her rainbow, and that we made it together, she does remember how to use the plastic stick. She smiles every time I pull the stick out of my bag for another project! Repetition for our brains, very important!
I am pretty biased and believe that nurses are smarter than doctors (two of my aunts are great nurses), but to help better understand from the doctor’s perspective there is Alzheimer’s Disease: The Complete Introduction by Dr. Judes Poirier and Dr. Serge Gauthier. This one has color photos and diagrams to help you better understand what happens to the brain and body as you go through all of the different stages. For a more hands on approach, I recommend Alzheimer’s Activities That Stimulate the Mind. I have found that books like these that are written by nurses are always on point and make you feel the love and time that was put into it. I will be putting these activities to good use. Emilia C. Bazan-Salazar, R.N., B.S.N., I, Thank you!
Children have a hard time understanding that just because they can’t see it happening, that our brains change. Also, as parents we want to protect our children from all the scary things that life throws at them. Faraway Grandpa written by Roberta Karim tells the story of Kathleen and the special bond she shares with her grandpa. Every summer she visits him and he always does the same things to make her smile. One summer, Grandpa forgets to do his shenanigans and even comes to live with Kathleen. She then figures out that when she sings their special song that the “clouds” will lift from Grandpa for just a few minutes and that’s where she can always find him. I am not a fan of telling children lies or sugar coating many things. The last thing you could want is your child realizing you lied to them. I believe that you should answer any and all questions that they have, but don’t give more details than necessary. Besides, they get bored fairly quickly!
Even adult children can sometimes have a hard time with this and need the comfort of each other to get through! The film Savages is about a dysfunctional family that must come together to help Dad (Philip Bosco) when he starts showing signs of dementia. Son (Philip Seymour Hoffman) and daughter (Laura Linney) place Dad in a nursing home and then care for him through his remaining time, while struggling with their own personal lives.
The family and caretakers are the ones who experience most of the emotional effects of Dementia/Alzheimer’s. It’s a difficult situation to be in when someone starts forgetting who you are and what is happening to them. It hurts, and it hurts a lot! I often think that because memory loss runs in my family, that I should make sure that my nearest and dearest understand my wishes, if this were to happen to us. It’s not typical table talk, but it is definitely an important conversation to have. All too often I come across a family who, when asked a question of this nature, sound the crickets, all look at each other, and wait for someone to answer. That’s not going to help when you can no longer make your own decisions and your family is arguing over what you would want. Let them know! Today!
The Day We Met by Rowan Coleman will give you a glimpse of what it might be like to start losing your memory. The main character, Claire, is suffering from Dementia/ Alzheimer’s. When she is lost, so are you. When she doesn’t understand, neither do you. It made me think about being in her place and what I would want my family to know if this started happening to us.
I do not know how it feels to be on the spousal end of this disease, and I hope that I never have to. Since I have been watching films and reading books on the subject, I at least have a glimpse of what it might be like. Away From Her, a Canadian film, starring Julie Christie and Gordon Pinsent is based on Alice Munro’s short story, “The Bear Came Over the Mountain.” The film won seven Genie Awards. Seven! The story is about a husband and wife who have lived over 40 years together. She has started to show signs of Alzheimer’s and moves into a facility that can care for her around the clock. Upon moving in, they cannot see each other for 30 days. In those 30 days, she forms a close bond with another resident and forgets who her husband is. You go through this with him, you feel lost and betrayed, and in the end, you also feel all the love he has!
I believe that this is one of the worst diseases ever. It’s a hunter that has no rules or regulations. There is no cure, and it slowly attacks and eats your brain. You cannot run and hide, it comes from within you! We must fight it head on!
Help me raise awareness! The state of Tennessee participates in the Walk to End Alzheimer’s. Held annually in more than 600 communities nationwide, Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. Hopefully, by the time you have read this, I have completed my 2 mile walk in Nashville and donated a few bucks to a worthy cause that affects my family and I. There are local walks in your area in the month of November. Put on your sneakers and get going!!