Alzheimer’s: Family Disease
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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Office manager
I like the about comments in our business of care giving there is a high degree of family fatigue and burn out for the family members, we are here to help and support the families in any way. I speak to families that do not know what to do next. By showing and providing the care that is needed we have kept many people in their home with their loved ones. I hope that we can continue to support and help these families; I like this responsibility project and if we can be part of it welcome the chance.
Georgette Parry | 7 months, 1 week ago
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Responsibility. . . and Love
I used to work swing shift at a nursing home where a lot of the residents either had Alzheimer’s, were senile, or developed these conditions during the year or so I worked that job. The process of watching these conditions develop was heart breaking.
As 1 Corinthians 13:5 says, “. . . love is not self-seeking. . .” (New International Version). When it comes down to a family member, there is a responsibility that must be balanced with the patient’s needs and the caregiver’s abilities. The family should be the first line of care; however, the entire family (spouse and/or children) should be involved to make sure the entire burden doesn’t fall on one person. If the patient’s needs are beyond the care the family can give, professional care should be sought.
Pattie Morgan | 7 months, 1 week ago
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spouse
If the primary caregiver isn’t a family member, in my case, me, then who?
robert d. moore | 7 months, 1 week ago
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spouse
I think a spouse is the closest family member you can have.
celeste | 7 months ago
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caregiver
I take care of my mom who has Alzheimer’s. This is a very tiresome job that has no end. I thank God that he has given me what I need to do this task.It takes a lot of sacrifice, you just learn to live with it. I think of all she did for me. You must take a break from time to time, trust God and laugh a lot. Laughter is a good medicine. Thanks.
Martha A. McNeal | 7 months ago
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Laugh or cry
Ms. McNeal and others who care for elderly parents: God bless you every day! My own dear mother has Alzheimer’s and has lived with me for six years. I thank God for letting me care for her.
I no longer leave her with other people overnight; she wants me near her just as I wanted her over 60 years ago. I did not want a baby sitter and neither does she. My brother comes by my house every day after working so I can have a break to take a walk, a drive, or to do a little shopping without her.
As you say, we laugh a lot — I’ve learned you either laugh or cry; sometimes both.
I wait for the day this dreadful disease will be curable — it’s very difficult for me; but it’s even harder for her because she realizes what is happening to her.
Sandy DeWitt | 7 months ago
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sad disease
I have worked for years with the elderly who have some form of dementia, including alzheimer’s. I have seen joy, and much sadness from both the victims of this disease and their families-you must laugh, or cry-both, really-to be able to deal with this. There should be support out there for the ones who sacrifice so much to take good care of their family members who have this disease.
May God bless every person(and their families) who get this disease, its something nobody should have to live through.
celeste | 7 months ago
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Need help
We are three sisters dealing with our mother’s Alzheimer. So far we have been able to work with the symptoms but one. She is permanently salivating and spitting in a cup. The saliva is very thick and she gets nauseous. The doctor think that it may be the effect of one of the drugs she takes. We have tried lots of things and nothing works. Her life and ours will be easier if we can stop that symptom. Any suggestions?
Jenny Rivera | 7 months ago
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Caring for elderly family members
I am the only girl and know i will have to care for my parents one day. But I already know with my parents that the sick is not my calling. I would pay the money to hire someone to move in my house and provide round the hour care.
Irene Hunter | 6 months, 4 weeks ago
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It is what it is
After watching my mother battle cancer for 5 years, it was the hope that made it bearable. Alzheimer’s is worse because there is no hope for my dad who seems to lose who he was a little more everyday.I stopped working 5 months ago. It became so nerve racking to see the strong minded man who raised me so confused. Coming home, all I could think of never knowing what or where he would be.Laughing is a good thing, although I’m not sure what we are laughing at. Be strong because it is what it is.
charles guerrero | 6 months, 4 weeks ago
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