My grandparents, Sylvia and Mitchell were both children of Jewish immigrants. They met on a blind date and my grandma told me he was the first man she ever let kiss her on the first date (she later told me when I was older that my grandpa was the first man who never got a slap from kissing her on the first date!). They married while my grandpa was on leave from WWII. Both lived happy lives, both helped raise me, and both were giving people. Both got Alzheimer's disease. It was a hard adjustment for my family, we were lucky to have help, but finding a good match for an at home care taker was a challenge at times. Though my grandma outlived my grandpa, my grandpa's Alzheimer's progressed at a faster rate. He had only 2 or 3 words left in his vocabulary and would want to go back "home" (his childhood home). Despite this some things never changed. He still loved dancing and singing, but most of all he never forgot how much he loved my grandma, likewise she never forgot her love for him. They would always kiss each other in the cutest ways. I have heard stories of couples who forget each other, but my grandparents never did. I will always be grateful for it. Some folks believe that when an individual gets Alzheimer's it means they are gone. I do not believe it. The love my grandparents had for each other and their family never died. I can still remember my grandma stroking my hair and asking me about my life when she was near her end. My family started volunteering and giving to an Alzheimer's charity, and we still do the walk. I can share my experience to help others. Alzheimer's may have pain, but the love is still forever.
I became a nurse aide in 1994. I worked in a few nursing homes caring for all stages of patient care. I started a job back in 1998 of a local nursing home when I lived in Pennsylvania. I worked in the skilled unit at first but was the substitute for the Alzheimer unit when the full time aide was off. I loved working with these beautiful souls. I eventually was placed in the Alzheimer unit full time around 2000. My unit was primarily a first stage care unit but we had some that were early stage 2 patients. The residents grow to become like a grandparent and family to you. You learn about their lives, their professions, and who they were before the illness struck. Many don't realize how special Alzheimer patients are until you sit down and spend time with them. They aren't little children. They are grandparents, parents, former teachers, people who have a brain disorder. They are people and sometimes can be combative but they love and laugh just as you and I. I moved and had to leave my job when I met my husband who lived in another state. I cherish the memories of those lovely people and realized how blessed I was to spend with them and care for them. Hopefully, one day, a cure can be found for this disease. Besides being a caregiver, my great grandmother and my grandfather had Alzheimer's disease. My great grandmother lived to be 105. She was unaware of her surroundings before she passed. My grandfather became very aggressive against my grandmother whom he loved dearly and had to be placed in a nursing facility. He smiled every time he saw my grandmother. There was a bond between them even though he didn't really recognize her. His face lit up every time she came into the room. She died 2 months before him. One aide told me that he cried every night for weeks as if he knew she had passed. He died shortly after her.
When I took care of my grandmother who had a dementia-related illness, she always wanted to bake but could not follow a recipe and also had trouble standing for long periods of time. Busha (or more properly, “Busia” - the Polish word for grandma) always seemed happiest in the kitchen, and I could tell she was frustrated at not being able to cook and bake like she used to. I’d regretted that I hadn’t gotten "Busha’s Banana Bread Recipe" from her before she could no longer recall it; she’d baked from memory not a cookbook. But I found that if I gave her the bowl and spoon, and brought each ingredient to her where she sat at the table, she could remember what went in (with some prompting) and also she could show me how much she ‘guesstimated’ it needed. She would mix and chat away just like when I was a kid and she was teaching me to bake. I would jot down what we were doing. In this way, after a few batches, I figured out the proper measurements. I'd collected interesting journal entries as memories were prompted during our baking sessions, and I had time to ask her questions about things from my childhood that I could barely remember but she knew, since the dementia mostly affected her more recent memories. In this way, we accomplished something together, and enjoyed the warm-from-the-oven bread with lots of butter afterward. Baking together reduced my stress and hers, and though she would tease me for being on “gramma-sitting” duty every week while my mom was at work, they are some of my sweetest memories of her now. And you can bet I wrote that recipe down! (It is the most worn and stained recipe card in my file box!)
My grampa was the apple of my eye, and I was the apple of his. He taught me how to play cribbage, scrabble, do crosswords. When I was young and would stay with my grandparents, he taught me poker and darts as well. He was always so loving and caring, and so much fun. When I was in my early 30s, financial circumstances forced me to move, and I moved in with my grandparents for about three years. I treasure that time. He had not yet officially been diagnosed with Alzheimer's, but the decline was there. When I first moved in, we could still play cribbage if I counted his points, but scrabble was no longer possible. As time went on, even cribbage got to be too much for him. All I could do was spend time with him, talking and asking about memories. I got to hear so many of his navy stories. It was wonderful. I married and moved out of the area, and only saw him a few more times. He continued to decline, and finally passed just before his 89th birthday. He was both a father figure and grandfather to me, and will always be my hero.
BIll, my father-in-law is a kind, gentle soul who loves his family and is loved by everyone who meets him. He is the grandkids' favorite Pop-pop who used to let them throw him in the pool, wrestle, play make believe; everything one can hope to have in a grandfather. But this is a story of the past. Barbara Lea, his first wife (childhood sweetheart and great love)--my husband's mom--died of lymphoma when she was just 21 years of age and my husband was 18 months old. Bill subsequently remarried and had two more children; but Bill was so devastated by his loss, he rarely spoke of Barbara Lea to my husband. So he grew up never really knowing his mom. Of all the bad aspects of this horrible disease, the one small light is that as Bill's dementia worsens, he goes back in time to a period of great happiness for him. That time being married to Barbara Lea and taking care of their baby boy together. Bill has been telling my husband stories of his mom and their life together. I see the joy not only in my father-in-law's eyes as he remembers her, but I see the joy in my husband's eyes as he finally gets to know his mom.
There are only two of us left in our family of seven. Ida is 88 and i am 82, youngest in the family. Unexpectently Ida's husband Ed died after knee surgery of septic shock. She in Baltimore and I in New Jersey. That was nine years ago. I was unaware that she was in the early stages of Alzheimer's disease and knew she could not be alone in Baltimore. After taking care of her affairs, I brought her to my home in New Jersey and for over a year, as her disease progressed, I enrolled her in the Visiting Nurses. What a wonderful caring place they have. The town provided bus transportation. However, she needed more help and I placed her in an Assisted Living facility nearby. She then progressed to the Alzheimer's ward - the Cottage in that facility. She is so well taken care of but unable to recognize me. She doesn't hardly ever speak but mouth's the words to God Bless America. I see her at least once or twice a week and attend all the wonderful functions they have for her. She needs assistance to keep her balance; however she is not in a wheelchair nor has a cane. I have arrangements for her transfer to Baltimore to be with her husband when the time comes. I thank God I am here for her and always will be. Mary L. Sorensen
Part III At Mom's new care center. As I write my name in the visitors log book, I scan through the pages, hoping to see a familiar signature, one who'm Id know that has come to see Mom, as it's been a week and a half since I saw her last. Sadness and guilt tore through me, as there were none, :( I take note of the not so pleasant smells and a couple of screaming residents begging for help. My eyes begin to tear, and heartbreak hits me once again. The halls look so dreary, I am determined to get her out in the sunshine. I peak through her door and she is laying in bed sound asleep. I quietly pull up a chair and sit next to her. I gaze at her face just as I remember sneaking into her room as a child at night from being afraid and staring at her in the same way, hoping she'd lift the covers enough for me to crawl in bed next to her. She then begins to wake, I get up to greet her and smile as big as I can, "Hi Mary June, it's me Lori" I've resorted to calling her Mary June as I don't want to confuse her anymore as she no longer knows me as her daughter, she smiles. "I've come to take you outside, fresh air" this makes me happy, as it relinquishes my guilt. She mumbles, "Well, then, okay" I'm pleasantly surprised, I have learned even though her words no longer form complete sentences, If I nod, smile and agree, she's there beaming with a beautiful smile and a whole lotta love! Looking back through the year, I used to feel sorry for myself, that 'my mother', my own mother has forgotten me, but I know now as I look into her eyes, feel her warm cheek against mine, or hold her hand, or hum a gentle hymn together, that even though her memory of me is gone, she still has SO MUCH LOVE to give, and for that I am grateful.
As a little kid, my favorite memory of my dad is him chasing after me in the pool, saying he was Jaws Now he is being chased. He always will be my most favorite person in the world. Our rolls have reversed now and coming to terms with that was difficult. But no where as hard as watching him slip deeper into the unknown. Dad has a few Masters Degrees, he was this brilliant man who seemed to know so much about so many things. He knew that this Alzheimer's monster was chasing after him. Both his parents, his aunts, a sister....they had all already been caught. He read every article he could get his hands on, did all he could to prevent it from catching him. But when the monster wants you, he is going to get you. Dad was in deep denial for many years, he became angry, quiet and isolated. It took my mom becoming very sick and him having a fall while she was in the hospital, for him to get help. He has been in care since December 2012. My mom passed away in October 2013, he doesn't remember her anymore. Which is hard but easier then trying to explain to him why she wasn't there to see him anymore. He is at the point now where sometimes he knows who I am and sometimes he doesn't. If I can get him to smile, it makes my day.. It happens less these days. I am an only child with no extended family near by, so I am it. Watching him slip away is heart breaking, remembering all the wonderful times I had with him extend all the way back to being a toddler. It has taken three different facilities to find him a place that truly loves him and takes wonderful care of him. He is slipping away more and more each day, but he is treated with dignity, patience and love. I know a day will come where he will be gone, but until then we are in this together. I love you dad.
2007 we accepted the fact that my beloved husband's diagnosis was Alzheimers - the dreaded, horrible condition that would take the man I had loved for 53 years and leave a shell. We talked, planned, accepted and then told our three adult children. Their immediate reaction was - we're with you all the way. Praise God our three children, in-law children and our grandchildren have helped every way possible and continue without complaint. It has now been 7 full years and he has entered last stage where he does not know me or his children - this is the hardest of all things to accept. I am a strong person but when he looks at me with fear in his eyes, and he does not know who I am, where he is, who he is - it breaks my heart all over again. The thing that no one prepares the caregiver for is the absolute loneliness - the helplessness, the fear of the unknown and the loss of your best friend, lover, confidant, protector and there is nothing that can be done about it - nothing. We understand and accept what is but the hurt goes so deep that it interrupts sleep and rest. I go as hard as I can each and every day because to stop and think is unbearable. I involve myself in my home, church, family and cook. I take care of my husband but am fortunate to have around the clock caregivers assistance and our children. Each evening a son-in-law or our son helps me put him to bed-I do the cleaning and dressing because I feel that is my right and responsibility. The grandsons also take turns helping. One time, before he lost all memory, he apologized that I was having to help him so much. I responded that he had taken such good care of me the first 50 years of marriage so I would take care of him the second 50. He thought for a minute and said but you won't live that long! It is what it is,I love him..
As I entered my adult years, my relationship with my mother changed. We became close, and talked like friends. She would come to my house and visit several weekends a year, and we would watch action movies and eat junk food. She especially loved Chuck Norris, and the Die Hard movies. We would go to the casino together; how she loved those slot machines! I carry these beautiful memories inside me, even if she cannot. We would spend the day shopping, for clothes and earrings. She always loved earrings: she still does!!! Then out to lunch. After she retired, she formed a card club with her friends from Nursing School. She was the catalyst, she would plan, pick up those who didn’t drive; they would go out to eat, and play cards all day. I am writing these things as a celebration of her life. There is so much heartbreak with this disease, so I try to keep the good times in my heart. All her nursing friends have passed away; she does not remember them anymore, anyway, which is a blessing. Her husband has passed away. Her sister just died from Alzheimer’s several months ago. She does not remember those things, either. So it is only her. And us, her children. Yet her will is strong; she gets up every day, spends time at day care, gets taken on outings, and see concerts like The Singing Policeman and Irish Jiggers. She enjoys herself, and is always smiling. We all laugh with her, love her, and take care of her. We stay upbeat for her, and enjoy her one day at a time.