I am happy to stumble across this blog. I was asking the same question, "Why We Fear Alzheimer's?," to a girlfriend of mine who saw the movie, Still Alice, with me yesterday.
My mother has been in early to mid stage Alzheimer's for at least 7 years now. I don't know where her disease will lead her but so far there have been many wonderful times and spiritual lessons. My mother is the happiest she has ever been. She sings and dances and plays Scrabble and gardens and paints (she is an artist), watches the news, cooks and take pictures of all her artwork, animals and flowers -- with the help of her wonderful caretaker/s. For the first time she lives in the moment and has let go of many of her resentments and character defects that held her back in life. She has become a kinder person and learned to let go of some independence to accept and trust help instead.
Me, I have enjoyed getting closer her; she has finally become the sweet and happy mother I have always wanted. Also, helping her has helped my brother and I focus on what is important in life; temporarily knocking us out of our narrow "busy and selfish" lives.
It hasn't been ALL easy. She often repeats herself (doesn't bother me at all), sometimes comes up with delusional stories which she is convinced are true and has started to wet her pants at night which is very shameful for her. Losing her driver's license has been the hardest of them all. For me, it has been difficult to work AND manage caretakers, figure out how to sell the house / downsize, and manage expenses with this very costly disease. But we are very blessed. She is fortunate to have children and money to help her through; I can't imagine what it would be like without either.
I can imagine that it could be very different for others. Like I said, I can't imagine having this disease without family who can help or money for caretakers. I can't image what it would be like to become fearful and angry and confused. And I can't imagine not having a co-operative family that can work through unpleasant family disputes on how to handle money and changes as the disease progresses. But for my mother and my brother and I, I feel Alzheimer's has made our lives much richer and more meaningful.
There is hope, this is not only my story but many others. My husband's father had Alzheimer's and became happier as the disease progressed and helping him gave my husband and his siblings a renewed connection to him. He died a happy man. So did my grandmother who had some type of dementia. I have also heard countless stories from friends and acquaintances of hope, laughter and meaning walking through this disease with their parents.
So I think about why everyone fears losing their memory. How many of our thoughts and memories are really important and how much of "our mind" really defines who we are? My mother, the essences of her, seems very much alive even with some of her failing memories and comprehension. What seems scary to me is not our failing memory but living in fear and the inability to let go and enjoy the moment. Or not having any loving support to stay alive and connected.
I agree with some of the observations in the article. I feel for you, Doctor. Once the diagnosis is out there, many things change. Both of my parents have dementia. In my parents' home before dementia, Mom was a difficult personality and Dad was easy going. Now, after dementia has set in, Mom is easy going and happy. Does she repeat herself constantly....yes. I don't have a problem with that as it's easy to repeat my answers. I don't get upset. I'm enjoying my new relationship with Mom. Dad, on the other hand, is opposite also. He's angry and upset most of the time. He rarely knows me or my family. My thoughts are, make the most of what ever has been handed to you. My Pollyanna attitude is that we can find something good in everything if we choose to look for it. Having a bad attitude about our circumstances is a recipe for depression. Dementia is a difficult disease because we never know where it will lead us. I mean "us" because the person affected with the disease isn't the only person it impacts. Both of my parents have moved to a care facility. I couldn't take care of them in my home and survive it. I feel blessed to have them in a safe and caring environment. Doctor, I wish the best for you and your family. It sounds like you are making a point to enjoy your life. None of us know what tomorrow will bring. We should savor every moment of what we have and who we have an opportunity to share it with.
Stan your pain is so evident in your post. You are a good man to be taking on such a challenging job when you both should be enjoying a happy retirement. It just does not seem fair. We do not have too many male caregivers on this forum but all the females can certainly relate to your frustrations and the grief at the loss of your wife's personality. Try and get some respite even if you need to hire professionals to do it so you can have some down time Blessings
Never got the chance to fear it....it just arrived, I find painting a rosy picture of this dastardly disease a disservice to victims and caregivers facing the true curse of alzheimers. My wife does stare blankly into space, struggles to communicate searching for words that never come and frustration builds to outburst. Hygiene is a huge problem and constantly calling me or calling of 'hello' challenges my sanity, ignore the calls and volume rises. It appears the alzheimer term is relative, some manage, some struggle and some exhibit hostility, intense but brief and immediately forgotten, after a few episodes it becomes easier to deal with, amazing what one can adapt to and learn to accept. Hate to be a downer but I see no redeeming factor whatsoever in this curse, social skills wane and associates, friends even family become creative in finding excuses to avoid socializing, a once self reliant aggressive gal is now an empty shell at 68.
Dear Dr Hilfiker, I am sitting here trying to hold back my tears after reading your insightful and personally generous article. I lost my mother six years ago to Alzheimer's and I can relate to so much of what you and your readers have said. For the last few years she became my little girl and then my baby and I must say, ironically, that our relationship, too, was at its best at this time. My biggest regret was during her early stages, when she expressed her concerns, her doctor repeatedly told her things such as, "If you can sit here and tell me that you think you have Alzheimer's, then you don't." or "Losing your key is normal; forgetting what a key is, is a sign of Alzheimer's." Even when she expressed her concerns to me I tried to appease her fears with a flippant, "I know; we all have memory problems as we grow older. I'm terribly forgetful now." She knew her condition long before anyone else and, when she was finally diagnosed, our father urged us not to tell her. So we were never able to discuss this thing of such importance, fear and confusion in her life. Thank you again for your article and I wish you well.
David, what a beautiful and insightful article. I strongly suspect---no, I know---that you are right when you say the projections of those without dementia (or any other aging milestone, before it is experienced firsthand) may not be accurate. When I was 20, I thought life without disco and rabbit-like sex would not be worth living. This has proven to be largely incorrect. Mark Twain said, "I have lived through some terrible things, some of which actually happened." Let us remember Mark Twain. Until we cannot, and don't actually care to.
Dr. Hifiker, Thank you for sharing your own perspective of this devastating disease. My mil has always been negative most the time n not very social. Today, she still can be very negative unless I can pull her away from it n sometimes I am just tired myself. It is sad how this illness can rob their memories n I am afraid that my husband or I may get this disease due to other illnesses that I already have now. Yet, I have to try to stay positive n focus on now and do the best I can until I cannot any longer for mil. Alzheimer's can also be very expensive and all the more reason why we need our researchers to be funded to help find a cure. Sorry to hear you have this illness n I hope their will be a cure very soon. Thanks for sharing.
Alzheimer’s disease and other forms of dementia are one of the most debilitating diseases of our time. In the United States, approximately 5.4 million Americans are known to have Alzheimer’s. Hiring home care workers as full-time or part-time caregivers for Alzheimer’s disease is a sensible solution.
Thank you for sharing your perspective. It is definitely interesting to hear what's going on from the point of view of someone with the disease. My experience with my mother, unfortunately, has not been so positive. I always knew her as an easygoing, sociable person. She is now in severe cognitive decline due to Alzheimer's at the age of 67. She engages in OCD behaviors and has occasionally become violent, hitting my dad for example. She can no longer carry on a conversation and doesn't know any of us. So I'm sad to say that it can also go the other way. We have no idea what is going on in her mind now. The brain is just so messed up at this point...I hope your experience turns out better than ours.
It was a great article! I fear Alzheimer's tremendously as it runs on my mother's side of the family and I am certain that I will also have it or already have it. Since I am a single mom with a disabled son, my greatest fear is that I will have no one to take care of me. My son has Down Syndrome, which leads to a far greater chance that he will also have a form of dementia and probably begin displaying symptoms much earlier than a non-disabled person. Just knowing that a diagnosis of AD doesn't mean life is over is comforting. Please keep writing and I'd also love to hear from others who are in the same situation. It helps me not feel so lonely when I can connect with others who have the same fears. Thank you!
Dr Hilfiker. I hope you will continue to update this community as your condition progresses. It is very help to see what is happening from the inside. It helps those experiencing the condition and their caregivers what to expect as time goes on..
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Why We Might Fear Alzheimer's
My mother has been in early to mid stage Alzheimer's for at least 7 years now. I don't know where her disease will lead her but so far there have been many wonderful times and spiritual lessons. My mother is the happiest she has ever been. She sings and dances and plays Scrabble and gardens and paints (she is an artist), watches the news, cooks and take pictures of all her artwork, animals and flowers -- with the help of her wonderful caretaker/s. For the first time she lives in the moment and has let go of many of her resentments and character defects that held her back in life. She has become a kinder person and learned to let go of some independence to accept and trust help instead.
Me, I have enjoyed getting closer her; she has finally become the sweet and happy mother I have always wanted. Also, helping her has helped my brother and I focus on what is important in life; temporarily knocking us out of our narrow "busy and selfish" lives.
It hasn't been ALL easy. She often repeats herself (doesn't bother me at all), sometimes comes up with delusional stories which she is convinced are true and has started to wet her pants at night which is very shameful for her. Losing her driver's license has been the hardest of them all. For me, it has been difficult to work AND manage caretakers, figure out how to sell the house / downsize, and manage expenses with this very costly disease. But we are very blessed. She is fortunate to have children and money to help her through; I can't imagine what it would be like without either.
I can imagine that it could be very different for others. Like I said, I can't imagine having this disease without family who can help or money for caretakers. I can't image what it would be like to become fearful and angry and confused. And I can't imagine not having a co-operative family that can work through unpleasant family disputes on how to handle money and changes as the disease progresses. But for my mother and my brother and I, I feel Alzheimer's has made our lives much richer and more meaningful.
There is hope, this is not only my story but many others. My husband's father had Alzheimer's and became happier as the disease progressed and helping him gave my husband and his siblings a renewed connection to him. He died a happy man. So did my grandmother who had some type of dementia. I have also heard countless stories from friends and acquaintances of hope, laughter and meaning walking through this disease with their parents.
So I think about why everyone fears losing their memory. How many of our thoughts and memories are really important and how much of "our mind" really defines who we are? My mother, the essences of her, seems very much alive even with some of her failing memories and comprehension. What seems scary to me is not our failing memory but living in fear and the inability to let go and enjoy the moment. Or not having any loving support to stay alive and connected.
It just does not seem fair. We do not have too many male caregivers on this forum but all the females can certainly relate to your frustrations and the grief at the loss of your wife's personality. Try and get some respite even if you need to hire professionals to do it so you can have some down time Blessings
It appears the alzheimer term is relative, some manage, some struggle and some exhibit hostility, intense but brief and immediately forgotten, after a few episodes it becomes easier to deal with, amazing what one can adapt to and learn to accept.
Hate to be a downer but I see no redeeming factor whatsoever in this curse, social skills wane and associates, friends even family become creative in finding excuses to avoid socializing, a once self reliant aggressive gal is now an empty shell at 68.
I am sitting here trying to hold back my tears after reading your insightful and personally generous article. I lost my mother six years ago to Alzheimer's and I can relate to so much of what you and your readers have said. For the last few years she became my little girl and then my baby and I must say, ironically, that our relationship, too, was at its best at this time. My biggest regret was during her early stages, when she expressed her concerns, her doctor repeatedly told her things such as, "If you can sit here and tell me that you think you have Alzheimer's, then you don't." or "Losing your key is normal; forgetting what a key is, is a sign of Alzheimer's." Even when she expressed her concerns to me I tried to appease her fears with a flippant, "I know; we all have memory problems as we grow older. I'm terribly forgetful now." She knew her condition long before anyone else and, when she was finally diagnosed, our father urged us not to tell her. So we were never able to discuss this thing of such importance, fear and confusion in her life.
Thank you again for your article and I wish you well.
I strongly suspect---no, I know---that you are right when you say the projections of those without dementia (or any other aging milestone, before it is experienced firsthand) may not be accurate. When I was 20, I thought life without disco and rabbit-like sex would not be worth living. This has proven to be largely incorrect. Mark Twain said, "I have lived through some terrible things, some of which actually happened." Let us remember Mark Twain. Until we cannot, and don't actually care to.
I hope you will continue to update this community as your condition progresses. It is very help to see what is happening from the inside. It helps those experiencing the condition and their caregivers what to expect as time goes on..