Alzheimer’s: A Family, or a Federal, Issue?
April 27, 2009 by Kathy McManus
First, there are the Alzheimer’s symptoms--forgetfulness, confusion, inability to recognize loved ones, debilitation, and a fog that never lifts.
Then there are the caregivers’ symptoms--fatigue, insomnia, back pain, headaches, and a nagging question that never fades: if you’re responsible for a family member with Alzheimer’s, how much of your own life are you responsible for sacrificing in the process?
Last year, an estimated 10 million Americans—mostly family members--provided a staggering 8.5 billion hours of unpaid care to loved ones with Alzheimer’s Disease, the sixth leading cause of death in the U.S. As patients get older, the burden grows for caregivers. A recent survey showed that many Alzheimer’s caregivers want more support from within their families and beyond. But they’re reluctant to ask for it.
“They tend to say, ‘This is my parent or relative, and this is my responsibility,’” said one gerontologist. “Caregivers tend to believe they are bothering others.”
One of the most frightening Alzheimer’s issues is wandering. 60% of Alzheimer’s patients wander away from their homes one or more times during their illnesses. But fewer than four out of 100 are able to return home without help.
“We live in a bolt-locked house,” said a woman who takes care of her stricken mother. “We have boards across the stairs. We have hung bells on the doorknobs.”
Bracelets and clothing tags using radio signals or GPS technology can be worn by Alzheimer patients, making it easier in some circumstances for police and rescuers to track and find them. But still there is no peace of mind. "I can’t help flinching,” a reporter wrote of the devices. “If a person with Alzheimer’s recoils from the idea of a tag, do you impose it on them?”
There are 5.3 million Americans with Alzheimer’s. While deaths from heart disease, stroke, breast and prostate cancer declined from 2000 to 2006, Alzheimer's deaths rose 47 percent.
"Alzheimer’s is a family disease,” said former U.S. Supreme Court Justice Sandra Day O’Connor, whose husband has Alzheimer’s and no longer recognizes her. “It may directly attack only one member of a family, but every family member feels the effects. Every family member loses something.”
Tell us what you think: If you’ve been responsible for the care of someone with Alzheimer’s, what have you sacrificed in the process? Should dealing with such an insidious disease continue to be almost the sole responsibility of family members?
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- about Alzheimer's, senior citizens
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243 Comments
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April 28, 2009 by Georgette Parry
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May 16, 2009 by John Hale
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September 16, 2009 by MARIE MARTEL
May 19, 2010 by mary levandoski
Bless you! You are an angel from heaven. Thank God there are people like us who take on the burden and feel responsible for our sick parent. In every family there is one person who holds the family all together, takes charge, does the things that each one of us should do, but don't. I'm proud and glad to be that person in my family. I can't imagine it being any other way. Always be the better person, always do what is right. I totally believe this and live by this. I wish you peace.
January 18, 2010 by darla styger
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June 29, 2010 by sandi valentine
I TAKE CARE OF MY MOM. I HAVE RELATIVES THAT DO NOT WANT TO BOTHER. A GOOD PART OF MY LIFE IS ON HOLD. WHICH TO ME IS UNFAIR. I CAME FROM FLORIDA, QUIT MY JOB THERE. GOT A JOB IN WISC. QUIT THAT JOB. I GET NO HELP FROM THE GOV. THIS IS HARD. YES, IF THE COULD ONLY VOLUNTEER, IT SURE COULD HELP.
August 8, 2010 by Susan Fish
There is no class in the world that can change a selfish, self centered person and make them into caregivers. I understand where you come from. I have a brother who comes by to help with the yard work and has helped me out. I have a biological sister who, when asked by my brother to stop by and see her father sometime before he dies, lash out at him and myself for bothering her. I wish you well and pray that caregivers like us are able to find the time to care for ourselves, too. You are a wonderful person for taking care of a family member. Sue
January 20, 2010 by darla styger
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April 27, 2010 by Shirley
My husband of 57 years has had Alzheimers for the past 5 years but is now beginning to get violent in the evening to the point I Have had to make him take a tranqualizer, if I can get it into him. We live in a wooded area ,and he has tried twice to go into the woods, I had to call my son to come he lives two miles away to help me get him to the house. I want to keep him at home as long as possible because in the morning he has no idea what he did the night before.. Do you have any suggestions? He is a veteran. Thank you
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May 3, 2010 by Beverly M Briggs
It is time to make a have a meeting with the family to decide what would be the safe decision for the care of your love one. You can speak to a social worker at a VA hospital in your area and discuss 24 hr home care or purhaps he is can be admitted to a VA community living center. It is quite different from a nursing home. Do you have a Visitng Nurse Service in your community ( call them ) Reach out
May 13, 2010 by may chafin
i have a husband who ha aliziemers for the last ten years i am the only person who takes care of him his daughter will call or come to see him we have been married for 30yrs, he getting worst now and my family want me to put him somewhere which 2hours away . in the va unit . i am now getting some aides to help bath him twice a week . and change his b hospital bed. if anyone know where i can get finincal help too keep him at home please let me know thank you
June 29, 2010 by SANDI VALENTINE
I HAVE WORKED WITH ALZHEIMERS ALMOST ALL MY LIFE, NOW I AM TAKING CARE OF MY MOTHER WHO HAS IT. TO ME, WHEN THE VIOLENT STARTS, IT IS TIME FOR A HOME OF LONG TERM. YOU WILL GET BURNT OUT FAST.
August 14, 2010 by Bobbie
Bless you for caring for your husband with Alzehimer's Disease. I too care for my 87 year old mother in law who also has this terrible sickness. We have to keep all our exit doors dead bolted. Mom tries to escape all day every day. She cries alot, doesn't know who we are and it saddens us all to see her decline as the wonderful Mother, Mawmaw, Aunt etc that she was for so long. We are also now having to use medication to try and keep her from becoming uncontrollably upset. Being that you live by the woods, it would really be a bad thing if your husband got out and became lost in them. I hope whatever you and your son decide to do in order to keep your husband safe works for your family. Take care.
September 16, 2010 by Dorothy Burke
I take care of my 81 year old husband. He is also a veteran. I'm wondering if the V.A. has any help available for the veteran and/or the caregiver. Because I have to spend all my time at home it is more expensive. I have to pay people to shop, cook, and etc. I will appreciate any information that would be helpful to me.
Dorothy Burke
August 21, 2010 by maria povrzenic
hi there I am a PSW and care for a lady with alzheimers. i am supposed to wash her and she just refuses to do anything for me. how do i go about it; how do i talk to her? she just will not co-operate with anyone. any suggestions will be very much appreciated
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April 29, 2009 by Pattie Morgan
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April 21, 2010 by melaina mckissick
Yes,I have to agree that the loved one's should have some kind of helping hand in it. How ever me and my little sister and 3 of our cousins were the only ones that really took care of my 76 yr old grandmother and it was so hard to try and get her own kids to help out with her.She had been hospitalized 2 then hospice came in towards the end that helped out alot for us.How ever my own mother would come home from work and all she would do is say negitive things to us and then go to bed would barely help us out and my grandma's other 3 kids couldn't be bothered.Now please explain to us how this is possiable love our mother just wished she would have helped out more than she did. thanks Melaina McKissick,Miranda Wright,and cousins
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April 29, 2009 by robert d. moore
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May 4, 2009 by celeste
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May 1, 2009 by Martha A. McNeal
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September 16, 2009 by MARIE MARTEL
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May 27, 2010 by Laurie
I have been taking care of my mom who is only 63 and has dementia and it has been awful to see how she's lost her life. She is 24 hour care and my brother is a useless piece of work.... I am here if you need to talk... You have to take time for yourself I am learning or you can lose control.. Thank god for my friends and family...Hope you have a good day and stay strong. Thanks, Laurie
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June 29, 2010 by Keith edmund
Me and my family moved in with my mom 2 years ago. We have two boys 11 and a 17 month old daughter we have recently had to get someone to stay at night for her. she does not know why my daughter will not sit in her lap any more. She is starting to get to the point now that she does not no us at times.her anger is takeing over so what do you do drug her so she sleeps all the time or in a daze or do you just deal with it.
February 28, 2011 by anne
You are a good person and your brother is just selfish and will not change. I have been taking care of my parents for ten years and the 3 siblings will not do a thing and do not care because they know they are going to get the house and bank accounts anyway so why bother!! In the meantime I cant even go out for a night - my poor mom was blind and nobody even offered to make a meal or do a laundry - just because I do not pay rent living here - they think I should do it all - it would be easier to move and rent my own place - but I cant I love my dad so much - I will be praying for you and God Bless Anne
May 2, 2009 by Sandy DeWitt
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August 1, 2010 by denise
both my parents are ailing Mom has Alzheimers and he's a diabetic.
they both want to stop eating and end it all
It'snot pleasant for anyone involved
any suggestions?
none of the other siblings want to give up what they are involved in and help out.
help1
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May 4, 2009 by celeste
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May 4, 2009 by Jenny Rivera
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November 18, 2009 by robbyne
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November 18, 2009 by robbyne
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September 22, 2010 by CHRIS
IF YOUR LOVED ONE IS UNABLE TO SWALLOW, IT IS MOST PROBABLE THEY ARE IN END STAGE. THE ONLY THING THAT ISN'T END STAGE IS KNOWING YOU. YOU ARE AN ANGEL AND LUCKY THAT YOUR LOVED ONE REMEMBERS YOU. YOU WILL KEEP ALL THESE BEAUTIFUL MEMORIES WITH YOU ALWAYS.
December 2, 2009 by Kathy Hermansdorfer
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June 29, 2010 by SANDI VALETINE
THERE ARE MEDS FOR THICK SULIVA. ASK YOUR DR. ABOUT THAT.
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May 9, 2009 by Irene Hunter
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November 28, 2009 by Lynda Starrett
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May 9, 2009 by charles guerrero
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May 9, 2009 by THOMAS MOSS
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May 11, 2009 by Anonymous Please
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April 29, 2010 by Gigi
For the last two years I have noticed changes in my mom - at first we thought it was due to the Heart Surgery she just went through - she is 84. She was still living on her own but I visited her every day and made sure she had food and took her meds. My husband and I decided to take two days off to celebrate his birthday and I asked friends to stop by to make sure mom was ok. We came back and found her hallucinating and barely walking. I took her to her doctor and she was checked into the hospital - they diagnosed her with dementia.. what a shock - told me I would not be able to take her home.
I had her in a nursing home and now have found a great retirement facility for her - its 5 minutes from my home - but here is the problem - when Mom is clear she wants to move back to her own home... (she seems almost normal at times), so far I have not told her she would be staying there. I am an only child and would have no help in taking care of her 24/7 (and its very expensive). This is the best place for her - yet the guild overwhelms me at times.
Any suggestions on how to deal with the guild?
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June 2, 2010 by Paula Hatfield
You are doing what's best in a very difficult situation. I am an ony child as well, and my Dad does have a wife with him. He's in Early stages, in his 70's. We'll do what we can until, it isn't enough. Since, medically your mom wasn't safe to come home, she is now in a safe place. Use the wasted energy of guilt for love. You love her enough to do what's best. None of us are getting out of here alive and let's face life isn't fair, but there's lots of joy in between. Try to focus on the joy/memories of it. Bless you all.
May 15, 2009 by Diana Nash
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September 16, 2009 by MARIE MARTEL
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August 29, 2010 by Jo
YES it IS HEREDITARY.... I'm the youngest of seven... When my mom started doing dumb stuff , like trying to fry eggs w/o cracking them open, turning on the oven to bake an empty pan... etc, etc,... i THOUGHT she was doing it to get attention... cuz my DAD was rarely in the house, he was out back in the garden or with the chickens, etc.. When my Dad passed, i knew Mom couldnt take care of herself and the other SIX kids didn't have time for., I had her come live with us...At that time I wasn't aware of the A word... cuz back then they called it "old age" and dementia" So I waited till my hubby got home from his day job and since I was a hairdresser, I worked from 5 to 11 every day.. I so hoped it wouldn't find me, but it did :-( and thankfully there are DRUGS for same now :-) A few months later my sisters got that version of todays Alzheimers.. I now live in a senior communtiy,and I know of SEVERAL folks here who have it... I think what bothers me most is .. I gave up a LOT of things I wanted to do,so the kids could have fun and NOT grow up like I did...I have a daughter who refuses to visit becuz I say and do "dumb" stuff I will do the hairy carry thing as I refuse to go to a nursing home,, besides, we couldn't afford it..
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December 10, 2010 by Cathy
I know how you feel. I am so forgetful, this morning I lost my car keys. People say that I confuse them when I; 'it is hard to solve problems. I cant seem to get things straight in my head. I think it is from all the stress over the years. What do you think?
Cathy
February 6, 2011 by Joanne
YES, YES, and YES.. it IS hereditary... I am the last of 7 kids, 5 girls , 2 boys.. and I sew hoped this disease wou ldn't find me,, but it DID :-( First was my MOM, then 5 sisters... I had 2 brothers, but they had HEART problems.. Thank goodness and the drug industry for the NEW and COSTLY drugs now available... I live now in an all SENIOR community and I'd lay odds that sixty persent of the folks here have this..... THe drugs help, but now enuf.. I'm so glad for the internet as a way of leaving home w/o leaving home.. My kids all know I have it,, as do my Doctor...who , bless her heart, recognized it about 5 years ago.. I take the drugs,,think about WHAT i'm gonna say and to whom, .. I REFUSE to go into a NURSING HOME.. I'lll do the Harry Carry thing first..
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