CancerCompass message board discussion started by Wingsforwheels on 3/2/2006 http://www.cancercompass.com/message-board/message/all,4662,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mother had Alzheimers. She moved into an assisted-living home when she was in the early-stages and still had some independence. Over the years I watched her lose her independence and require more and more cuing and more and more assistance. It was heartbreaking to watch her decline, but there was always some comfort in knowing that she was not fully aware of her demise. There was also comfort in having her living where she was. I had looked at many assisted-living homes and this was the only one I didn't walk away from crying. The staff was wonderful, the attitude and mission of the home was "right on", they preserved her dignity and encouraged her independence right through the end. When she developed seizures (I came to learn that 10% of people with Alzheimer's do) things really got tough. Trying to find a seizure medication that she could tolerate was such a struggle. Because of the Alzheimer's, Mom could not communicate to me what side-effect these drugs were causing. She was not able to say to me, "Kris-babe (that's what she called me), I feel dizzy." or, "Kris-babe I feel sick." I had to try and "read" her. Over time I became quite good at this. I could see just by looking at her eyes/face when the seizure medication was causing her to become toxic. I immediately called her doc and told him to order a blood test. He wondered if I was a nurse, I said, "no, I'm a daughter, even better." When the blood tests showed she was close to a toxic level, he trusted my intuition from that point forward. Unfortunately, I did not acquire this intuitive skill until she experienced full-blown toxicity once. It was so bad she ended up in the hospital and then spent 100 days in a nursing home for rehab. She had to learn how to eat again, how to chew, how to swallow, how to walk. She made progress, but it came slowly. Since that time, she was often in a wheelchair. But damn if I didn't get her up and using a walker each time I visited her (3 times a week for hours at a time) when I gauged that she had the energy to do so. The caregivers were often amazed at how Mom responded to me. They couldn't always get her to walk, they couldn't always get her to eat, but more often than not I could. This was the first indication that Mom and I shared a special bond...a spiritual one. She no longer knew my name, she no longer knew that I was her daughter, at best she may have recognized me as someone she knew - someone familiar to her. Whatever the case may have been, the pressure was on me now to succeed where others couldn't. I was not going to waiver, but I needed help. I turned to the Alzheimer's Association and found a support group. By God if it wasn't just that. I learned so much from the facilitators, and they were a great help. I watched the other assisted-living residents closely, and tried to anticipate what might lie ahead for Mom. I saw Hospice at work and was impressed with what they had to offer. The residents on Hospice had the best wheelchairs, and other cool items that insured comfort, etc. When the head of the Alzheimer's unit suggested Hospice for Mom, I said "I was wondering when she could start to benefit from their services." Hospice services combined with the assisted-living home's caregivers...we had the bases covered. Now Mom's team of caregivers included a social worker, a chaplain, a RN, a Hospice doctor in addition to - not in place of - the doctor I had been taking Mom to for years, a message therapist, etc. I was still quite involved in Mom's care but it was nice to know I had so many extra sets of eyes engaged in my goal to keep Mom comfortable and at "home" (i.e. out of the hospital). As I filled the Hospice team in on Mom's situation: what challenges we faced, what our biggest concerns were, etc. The social worker commended me on reducing my workweek to help care for Mom, and she got a kick out of the fact that I would fax notes to Mom's doctors as a sure-fire way of being heard. The chaplain was pleased at my efforts to keep my life in balance: work, Mom's care, and fun. When they asked what I did for fun, they were interested in my, "I'm a Bruce tramp", answer. Music was and always has been a coping mechanism. When Springsteen wasn't on tour, I'd hit the Blues clubs. Additionally I kept a "health club" routine, and boy could I feel the tension and stress diminish as I worked out. Thank God I was turned on to such a routine via a bad knee and continued physical therapy...everything happens for a reason! But still, despite my efforts to keep things in balance, watching Mom suffer with Alzheimer's was almost unbearable at times. I had my fair share of meltdowns. I formed opinions, like: Alzheimer's has got to be the cruelest disease there is. To rob someone of their mind, their memories, the essence of who they are! Absolutely so horrible, it's hard to imagine. I would go visit Mom and look upon her and wonder where on Earth has my mother gone? She sits here in front of me, her familiar frame, those are the loving hands I know, her fine black/grey hair, her brown eyes, her pretty legs, etc. But that's all that was left, just her shell. Her wit, her opinions, her intelligence, her reasoning skills were gone. In the end she'd still respond to music (I am my mother's daughter!), to my voice, to my loving touch, and to prayers. That was all, and it had to be "enough" for it was all that was left. So I held her hand, put my arm around her, showered her with kisses. We listened to classical music and I could see the calming effect it had upon her. The radio in her room was set to the classical station 24/7. I read to her, short stories. I'm sure she couldn't even comprehend long enough to follow the plot, but it was my voice that mattered not the story. I'd say the "Our Father" or the "Hail Mary" and she could only nod in approval and on one unique occasion responded with a "good!" Watching someone suffer with Alzheimer's is a constant grieving process. You mourn the losses as they occur, you mourn their loss of words, you mourn their loss of comprehension, you mourn the loss of their memories - especially the ones you shared, you mourn their physical inabilities as they occur; you're constantly mourning. By the time death comes, you have no more tears left. There is a peace that comes, knowing that the suffering is over (theirs and yours). Mom passed on almost one year ago. As Alzheimer's took its course, I couldn't help but thinking, how it must be easier on friends and family when someone is dying of a disease that didn't cause dementia. Like Morrie (Tuesdays with Morrie) for example, his body was failing but he was still ALIVE...witty, thoughtful, laughing, crying, etc. He was still Morrie. And Christopher Reeve, he was still the Chris everyone knew and loved, it's just that he couldn't control the movement of his body. But he wasn't a shell, he remained in essence. I still cried as I watched Ted Koppel and Morrie, it hurt to see him struggle. But he had come to terms with it so well, that there was some comfort in that. Wasn't there? Now I know my thinking was flawed. I was wrong. It's not any easier to watch someone you love struggle with cancer than it is to watch someone you love struggle with Alzheimer's. The pain and anguish I feel is the same. My dear friend - one whom I have communicated with on almost a daily basis via e-mail for the last 17 months, one who knows me better than friends I've had for 17 years, and one who I've been blessed to visit with on a few occasions despite the 800 miles that separate us - has been given "months" to live. My confidant, I will lose. I will miss him terribly. I've learned that when someone you love is terminally ill, regardless of disease, the grieving process starts long before they breathe their last. Dear God, this might be a lesson I could have done without, it's awfully hard to bear. Wingsforwheels Thu, 02 Mar 2006 00:00:00 GMT I am just starting to learn about the disease. My father-in-law was diagnosed with it about a year ago. They live about 250 miles away so we really don't see them much, we talk several times a week. My father in law is still driving. I can notice differences one is that he gets very emotional. I really worry about him driving and they live so far away. All three of his children live 250 miles away. My mother in law doesn't really know much of the disease and really don't want know anything in advance. She says she will take it one day at a time. I saw your message and could tell you loved your mother very much. I also learned quite a bit from your reading. Grieving is a hard process as I lost my mother to lung cancer 7 yrs ago, my son to suicide 2 yrs ago. And now my best friend was just diagnosed with stage 4 lung cancer in which I am trying to research her cancer. Tb2771 Tue, 28 Mar 2006 00:00:00 GMT