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Struggling with dementia
- September 21, 2009 11:43 AM |
- By Your Voice
More than 35 million people around the world are living with Alzheimer's disease or other types of dementia, according to the most in-depth attempt yet to assess the brain-destroying illness -- and it's an ominous forecast as the population ages.
Barring a medical breakthrough, the World Alzheimer Report projects, dementia will nearly double every 20 years. By 2050, it will affect a staggering 115.4 million people, the report concludes.
Do you know someone affected by dementia or Alzheimer's? Share your stories below.
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Comments (11)
My mother has a rare form of Alzheimer's Disease that is not discussed very often nor is known about very much called Early Onset Alzheimer's Disease. This form of the disease affects people under the age of 60 and usually progresses a pretty rapid rate as indicated by the rapid rate of progression of the disease in her.
She is only 60 years old now and was diagnosed with the disease at the young age of 53. After receiving news of her diagnosis, I realized it may have started to develop earlier than that as certain things I had seen and heard her do made more sense to me now.
She is now in the advanced stages of the disease and has been living in a nursing home for the past 8 months. She has lost approx. 30 pounds in the last year or so and is hovering at around 105 lbs, and looks very skinny even though she does eat pretty well. She has to be fed most of the time as her coordination is very limited.
My wife and I tried to keep her living at home to care for her, however my mothers safety started to become an issue as she could not be left alone for any length of time, plus she became aggressive to my 4 year old daughter (known issue with Alzheimer's sufferers). She still remembers me (her son) and her grand daughter, but I can see she struggles with remembering my wife sometimes. She sometimes has to step back and look at me to remember me when I go to see her
It is very hard to see the person who raised you , who helped groom you into the person you are today and who was so full of life, be relegated to a mere shell of her former self. Every morning for her is a new life as more and more of here past life is drifting away, and I know that it won't be long before any memory of me or her past life will be non existent.
This disease has ripped out a big hole inside of me that I don't think I will ever be able to repair, but it has also opened up my eyes to how fragile our lives really are and that we can NEVER take a day of our lives for granted no matter how bad of a day it is.
I hope that we can all band together to help stop this terrible disease and that we do not assume it is but only a disease of the elder, but could afflict anyone, of any age.
Several years ago, my wife started to show classic symptoms of dementia related illness. Repeating herself, forgetting the iron and the stove, not remembering the way to a friends house, all very frustrating. She was 55, in the prime of her life, enjoying all aspects of growing older, grandchildren, time away from work, travelling. Steadily she lost ground to this disease, soon she was no longer able to shop, her bridge group asked that she no longer come, her friends no longer called to suggest a game of golf. She was terrified, dementia was in her family, two members of her immediate family had developed this disease and it had taken their lives. Was this her fate? Routine visits to the doctor did not produce a diagnosis, despite family writing letters to point out the changes in her daily life. Only the intervention of a friend produced a referral to a specialist in Geriatric Psychology who confirmed her worst fears.
I have watched this once vibrant, self assured woman, my wife of 44 years, slowly deteriorate as her dementia progresses. I strive each and every day to ensure that she experiences those things that she loves, music, children, a walk in the park, an evening drive along the ocean. She loves to hear the waves, enjoys the graceful flight of the sea birds, giggles as she sees a toddler throwing rocks into the sea. Music is a large part of her life, it is the essence of her soul. I play the organ for her every day, I hold her hand as she falls asleep each evening quietly tapping a beat to music that only she can hear. As I fall asleep, I silently pray that tomorrow will be the day they announce a cure!
As a footnote, I would urge anyone, who shows early signs of cognitive impairment, seek medical help. Early intervention with the drugs currently available will in most cases delay the onset and assist with compliance as the disease progresses.
My mother has been suffering with Lewy Body Dementia for the past 6 years. When initially diagnosed, her cognition fluctuated between lucidity and confusion. She signed a "DNR" form at her long-term care facility, and we thought she was somewhat in control of her destiny. She has since declined to the point where she is unable to communicate, trapped in an immobile body. Skin breakdown means she may lose toes. We are losing this dear soul slowly, in spirit, and now in body, and there is very little we can do, but stand by and watch her suffer. This journey will be travelled by many families as baby boomers age and are able to "stay alive" longer and longer. Should I be diagnosed, I hope I'm able to choose assisted suicide that is legal, and compassionate.
My husband and I, after watching two family members decline into total confusion and then essentially starve to death in a nursing home despite the staff's best efforts, will travel abroad to partake of a legal assisted suicide if either of us is diagnosed with a degerative mental disorder.
Neither of us can stand the thought of becoming confused and afraid like our relatives were and neither want to burden the other with watching a severaly compromised spouse decline into an empty shell of themselves.
My mother probably started displaying signs of dementia around 10 years ago, but we didn't pick up on it. She's now 88 yrs old. Just thought she was getting "old", as so many people think of the elderly and we weren't prepared to deal with it.
It seems like there's a lot of help out there,but when it boils down to it there isn't really. Answers you get seem very vague and not proactive. I think she realized something was going on, but was too proud to discuss it and we danced around the issue and tried to respect her.
Finally we had to force the situation, but still without her being formally told. We just told her she was getting her vitamins. In the past 2 years, she has broken her back and each hip. Her judgment skills were terrible.
To care for her safely at home was now out of the question. We finally had her admitted to a long term care facility. It's probably the best one around in our area, but there's still room for improvement. More care aids are definitely needed.
I bring my dog in for my mom, but she doesn't really recognize him. I mainly bring him in for the other residents. He loves it and so do they. Their faces light up whenever they see a dog. So, if you have a well behaved dog, bring them into a care facility. The residents and workers really like it. It's a a little thing that makes a difference.
I lost my mother to Alzheimer's Disease 5 years ago. In 1 year we watched her waste away to a little, old lady of 90 lbs. In the end she could no longer walk, talk, feed herself, etc.
My family continued to visit her until the very end. People would often ask me why I kept going to see her when she had no idea of who I was. All I could say was, "She's my mom."
For of you who are looking after a mom, dad, grandma, grandpa, wife, husband, etc. with dementia, I salute you. It is not an easy task you are undertaking, in fact, could be hardest you will ever do. Just know that this person is still that person whom you loved and have many good memories of.
Although the disease is changing them, they are still that person who loved you, and if not for the disease, would still be loving you.
My mother has alzheimer's. We were told to take her off Aricept as she is in the last stage. We were terribly afraid she would quickly decline. We also took her off Risperidpol. She is now better and she loves to sing You Are My Sunshine!!
I can't remember exactly when it was that my father first told me that my mother seemed to be having trouble with her memory. It must have been at least ten years ago. She would have been about 68. I guess he had been noticing lapses for at least a few years before he spoke up. I remember replying with comfortable platitudes about how we were all getting older. "Some days I'd forget my head if it wasn't screwed on," I'd say.
I feel guilty and sad now that my dad had to struggle with that alone for as long as he did. I was so used to him being the leader, the strong one who had every situation well in hand - it took me too long to realize that he was at on the edge of his coping capacity.
My mom and dad had always disagreed on at least some of the details of family stories, and Mom had always had a sense of time that was uniquely her own. It was hard to distinguish her "normal" from the what we eventually realized was Alzheimer's.
My dad confided to me one day that mom had forgotten the word for "bathroom" that week.
"What do you mean?" I asked, skeptically.
"She couldn't think of the word, and in the end called it the room with the toilet in it."
That stopped me in my tracks. It was hard to imagine . Dad went on to tell me that Mom had gotten lost out driving around town a few times - had actually called him from a convenience store on one of her familiar routes, to ask him how to get home. I felt something knot in my stomach. That was for me the beginning.
Dad was reaching out for help, but I wasn't sure what to do. It took a year of procrastinating on my Mother's part, and many irrationally cancelled appointments with her doctor, before dad finally managed to get her to an assessment appointment, to receive the conclusive result: Mom was suffering from memory loss.
My sister and I lived in a different city from our parents, and we kept in touch with regular phone calls. I remember calling the evening of the appointment, and dad said they had just got in from the doctor's office. He said mom was upset, and thought she would like to talk to me. She got on the phone, and I tried to keep the tone light, asking her how she was. My mother - who had been there with love and empathy through 40 years of scraped knees, colds, birthdays, job woes and love life highs and lows - told me that the doctor had advised her this evening that she was losing her memory... and then her voice caught, and she began to cry.
I felt my heart twist and then snap. I tried to reassure her that it would be ok, that the pills the doctor had given her would help, and that we all loved her and would allways be with her.
My dad was diagnosed with cancer a few months later. It was then, as dad began a rapid decline in his physical strength, that we realized how much he had been compensating for my mother's worsening condition over the past few years.
She could not even make a sandwich for herself, much less help around the house, and yet she was adamant that there was no reason she should stop driving, and there was no reason for them to move closer into town. My sister began researching Alzheimer's and cancer, and worked out strategies, lists of available resources, and estimated timelines for my parents' care. I don't know how she did it.
As dad's treatment options disappeared over the following few months, we finally convinced my mother to just look at a few retirement homes for the two of them together, stressing that dad needed nursing beyond the home care he was currently getting.
Dad wasted away from the point of his diagnosis, at a startling pace, but he held on. He wanted to be there with mom in the new retirement residence, to ease her fears, and to see her settled.
On the moving day, after a morning of frantic boxing and loading, my sister and I came back to the house, exhausted and frazzled, from delivering the last load of furniture and effects to our parents' new two-room suite at the residence. Mom met us smiling on the porch as we drove the truck into the driveway. We asked her if she had her suitcase ready to come with us to the new place.
"What..." her smile clouded and she looked startled, "is it happening today?" We had been reminding all morning.
It looked a little like home once we got their stuff arranged - their love seat and coffee table, some of their paintings and pictures, some of their nicknacks and various accoutrements. Dad sat fragilely in the love seat and surveyed the space, and seemed pleased.
Mom had a melt down a few hours later when we explained - as we prepared to go down for dinner the first time -that we had not been able to bring the car. She accused us of tricking her, and we all joined in, in a panic, trying to convince her that it was for the best, and cajoling her to come with us to dinner. But mom was accusing and crying, and saying she didn't want any dinner, and we'd lied to her, and we didn't care about her - and dad was shouting with his ebbing strength that he was just trying to have one happy last time with the family together, but he couldn't fight anymore, he didnt' have the strength - and then he did something I'd only seen him do only once before in my life: my father cried. It was unbearable. He had given us all so much. He had been so strong. My mother stopped shouting, the sobs turned to sniffles, and she looked at him in surprise.
"Oh well..." she said, uncertainly. There was a pause and she looked at my father, searching. "I guess we could have some dinner then." and she dabbed her eyes with a kleenex. We eventually got to the dining room.
My father slipped into a coma five days after that, and he died in his sleep with all of us at his bedside a day later. My mother had a rough few months trying to absorb his loss, and adjusting to her new surroundings. After three months, she was befriended by a true gentleman living there, and they have been constant companions since. He has been a miracle for her, from whatever the source.
Over the last five years, They have come up for Christmas for a few days each year, and for a few days in the summer. The rest of the year, we visit them once a month for a weekend. I would like to see her more, but I can't afford the trips. She is still our Mom. She is thrilled when we call, and she loves when we visit.
It has become harder and harder for her to process conversation, and she is often quite confused even about simple routines, but she can still read the newspaper somewhat, and she still loves her children and her friend at the residence, and she thrives on our love. We have been lucky so far.
We don't look forward to the day, when more changes in her accommodation will be necessary. I dread it, but we'll cross that bridge when we come to it. That's all you can do.
Her companion said the other day something like, " You know, she may not be clear on what you're saying, but she still understands emotions, and the love of her family and friends, and she thrives on that."
I bring both a personal and professional perspective to this discussion. As a educator in an undergraduate nursing program, many students seem unwilling or unable to work with elderly clients, particularly those living with dementia/Alzheimer's disease.
It is increasingly obvious to me/my colleagues that we need to work differently with students to shift attitudes about this population or the nursing shortage in this area will only get worse.
On a personal note, my mother has been living with the experience of this debilitating health issue for some years. Fortunately, my father made some smart financial decisions before his death, such that monies were set aside for my mother's welfare and care as the costs outside the parameters of the publicly-funded system are woefully inadequate.
Legislative reforms are also very slow in coming. I urge Canadians to lobby publicly elected officials to advocate for this vulnerable population and their families.
I am distressed, but unsurprised, by the recent report on Dementia, a scourge of humanity.
I've also noted that the increasing instances of this disease in the population is mirrored by the growing number of cellular phones, media broadcasting signals, microwave and various appliances in our environments.
Radio signals (including television and all similar waves)and electromagnetism from electrical devices as well as overhead wires, bombard us all continuously. Every hour of every day.
If TV, radio and telephone signals can be picked up inside a structure, this indicates that they do indeed pass through solid walls -
which must also suggest that they pass through a human, animal or plant body.
Radio waves are used in microwave ovens to cook food.
Could this mean that we are inadvertently "cooking" ourselves, as well?
This could account for the destruction of brain cells, and too, the cancer pandemic we are experiencing today.
I find it incredulous that this has not been seriously addressed by scientific and medical professions, in a public forum.
But, of course, if such a claim was proven to be correct, public outcry would overwhelm.
Imagine what it would do to our current lifestyles and our addictions to our "toys", not to mention the financial breakdown of consumerism.
A conundrum, at best.
... Perhaps the "kook" in the tinfoil helmet is the sanest of us all....
I have a brother with firt stages of dimentia. He is couch surfing within the family right now, causes huge disturances & stress amungst us. Where & how can I place him somewhere safe? If anyone can give me some solutions..please contact me. We will end up throwing him out on his own, but we are pretty sure how that will end up.