"...quality of life, attitude, resilience, flexibility and acceptance of what life hands a person lies the answer."
These are great qualities, however, ask caregivers who have devoted a decade of caring. Caregivers that have not had a vacation or break, no family help or 8 hours sleep in a decade how much their life has changed. I was a rock of strength for 10 years. I did all I could to take care of a home, cut grass, fix plumbing, prepare wonderful meals and then...MY body shut down and said, "no more." Doctors and psychologists were adamant about putting my loved one in a personal care/nursing home before I ended up dead. I did not see, or accept, that quality of life had changed and spiraled downward. Didn't see myself marching to my own grave. I was too busy worrying about another to worry about myself. It took basic strangers guiding me because they cared. Now I am alone, still worry about the care my husband is receiving in a nursing home. I visit him daily. Sometimes I see a bruise on his arm or leg and wonder if he is being abused. Of course the nurses and aides tell me "no." He must have hit himself! Beyond exhaustion I accept their answer.
Over a decade of my life has been in a vacuum. I now reach out and realize many of my friends have died, moved away or have new spouses and families. I don't know what a Smart phone or iPhone is, never touched a laptop commuter. I sit in a vacuum not knowing where to go and to frightened of transition. The world is not as I remembered it.
The caregiver is far worse off. For you see, they are the ones left in an unforgotten corner. Like the Velveteen Rabbit caregivers get old and wear out. As the years go by, they are not pretty any longer. The glow and interest that once was has taken on a 'hardened' look. No more softness and no more being loved.
After 55 years of marriage my husband doesn't recognize me. He asks on occasion if I knew his wife. I reply with a broken heart, "yes, I know her." Then, quietly he asks, "if she lives around here, will you ask her to visit me sometime..."

I think we often forget how scary it is for the person with dementia to be so confused and not be able to trust their own judgement.

i think the patient suffers the pain of constant confusion and loss of control but the carer ( s ) often lives in a state of extreme exasperation . our minds are geared to reject malarkey and it can make you ill trying to constantly analyze jibberish . your brain simply rebels at a point .

Very interesting article. Alzheimers Disease is horrible. It's horrible on those that have it and on those who are caregivers. I can only imagine how frightening it must be for the pt to go through this disease. But, I would have to say in the long run I think it's harder on the family caregiver. They pay a heavy toll in all aspects of their life. A toll that may never be recovered.
I think the worst thing about Alzheimers Disease is the slowness of it. Most of the time when the person gets the Alzheimers/dementia diagnoses family have already noted a significant change in the person. For most you are looking at years of caregiving in the future for that person. In some ways, I guess the memory loss eventually can be considered a blessing for the pt, making the suffering of the indignities of this disease more tolerable. But, for the caregiver there is no such break. This disease goes on and on as we watch our loved ones slowly die. Most people can handle a family crisis if they see a short term end in sight, for example a cancer pt whose been told they only have six months to live. They can pull it together and care for that pt. With Alzheimers/dementia there is no short term end in sight. It's the length of this disease process and the stress it causes that wears away caregivers to the point that their own physical and mental health suffers. I hate this disease!!!

This was a very good general discussion on how people respond to Alzheimers but the illness is so complex no one can really compare notes. The progression for my mother started two years ago when she was 91 and still driving. She is not 93 and is in an assisted living facility. She can recognize her children but cannot remember anything we try and tell her and she constantly wants to go home even though we tell her she is as home. She cannot even remember how to dial a phone. She is refusing to go to the dinning room to eat and will not walk for and get her exercise. She will not conform to rules and regulations and we still have to spend a lot of time with her making sure she gets what she needs. The in between assisted living and a nursing home. She is not physically sick enough for the nursing home but too sick for just assisted living. She will not take her shower and dress as she should. She refuses to go to the dinning room an d eat. We have to bring her food from home. She will not go out walking and when she had her phone, she would call 911. So we had to take it away. She constantly unplugs her refrigerator and the food has to be thrown out. We just don't know how to help her anymore.

I also wanted to ask if anyone really knows the difference between Alzheimer's and Dementia? I know that Alzheimer's is a form of Dementia but can anyone tell me the difference between the two? I cannot be sure what mother has but think it is Alzheimer's? I would love to hear from some one who knows the major difference in the two illnesses. Her doctor say she has dementia but I think it is worse than just dementia. I believe it is Alzheimer's.? I would appreciate any comments on the two dreaded illnesses.

A couple of years back,my father was also a victim of alzheimer's. I would suggest , you have to face the bold truth and gather up all the courage to go through instances in life Give maximum love and care to the patient. If you are finding it difficult to manage, then hire professional alzheimer home care services who can give the utmost care. If you are in Toronto,you can hire up C- Care Health services as I have personally experienced their alzheimer home care services for my father.

I took care of my grandmother over 3 years with her having dementia.it really messed my head up.none of my family would help with her.they always promised to come get her and give me a brake .ive never went threw anything like it.they don't send u to school to learn how to deal with it.it was killing me to keep her alive.i would have died for her though.shes all ive ever had.she is in a nursing home now.i got locked up because of neglect...I was doing the best I could or thought I was.im not really even sure.it was in the news paper that I took her phone and wouldn't let her use it.she said I stayed gone and left her two months at a time by herself.it hurts bad.she is a victim,because I got charged.havent got to see her in a year.she was my grandmother adopted me when I was around 5.ill probally never see her again before she dies.it kills me inside.something somehow should be done,but I don't know what.she is in Calhoun falls s.c. iwas locked up in Abbeville s.c.they should drop my charges and let me see her.she is 83 now she thinks I just don't want to see her and that I put her there.the news should put this story out.dora r cudd is her name.my name is lee cudd.

Caregivers for those suffering Altzheimer's and Dementia are worse off. Altzheimer's/Dementia caregiving, perhaps more than other types of caregiving, tremendously burdens the physical, psychological, social, and financial world of caregivers.
Caregivers have many unmet needs. Healthcare provider need to be educated on this subject so that they are able recognize caregiver stress and identify resources for the caregiver to alleviate or share the burden. However, due to the financial burden of caregiving for an Altzheimer's parent and legal limitations of family members that do not have POA etc., resources are often beyond reach.

How can someone still love the person with Alzheimer's since they are NOT that person any more - the person they were is gone and there is nothing to love - but perhaps a shell or memory?

This is a wonderful piece, despite the pain inherent in it. It is evocative, descriptive--and speaks so well to the experience of literally millions of caregivers in this situation. Thank you for your honesty, and for sharing your eperience with us.