A friend reminded me that you have to ask for specific help or they will continue to let you do it all. Lots of times the single person or one without children ends up being the caregiver by default.

This past holiday just reminded me of my brothers' absence in everything. They just disappear - well, they are pretty much always out of the picture, but to not even call her or think about having the holiday together. Honestly, i sometimes just think of myself as the only child. I cannot imagine leaving my mom in the lurch and I guess they assume I will take care of things and go about their lives. I pity them, actually. That they don't have the moral sense to do the right thing. If my dad were alive he'd kick their butts to next Sunday. How could we all grow up in the same house and behave so differently? I don't want them to take over, but once in a while it would be nice if they could help. even a little bit once in a while would be great. to know it's not all up to me. I do appreciate this time with my mom because we didn't always get along. I don't have any children, just a dog, so i have time to help her out. BUT that doesn't mean that i want to do everything all the time. One brother lives 5 minutes away from the AL place my mom is in, and hasn't seen or spoken to her since she moved in. Did i mention that he lived rent-free with her for over 20 years as an adult? okay, it does no good to get angry. i just shrug and move on.

Bobcare, I also get angry with my siblings for not allocating enough time to our father, so I have started asking for very specific things from them. Only the daily caregiver truly understands the situation/needs. On the other hand, you will have the satisfaction of knowing you did everything you could for your folks and you will develop a special kind of compassion. I do believe that what goes around comes around. Hang in there. Perhaps hire a third party for a few hours a week to help spell you and/or your mother. Or ask a family friend for help. I hired a family friend. Talk with you pastor; he/she might be able to draw on your church congregation for help. Our's stepped in with meals when I didn't even realize my folks were struggling. My sister-in-law has been more helpful than my brother.

I agree with you about not feeling embarrassed. Have you noticed at all about the people around you as well? If the people you've known and liked along the way hear that you have this disease, they will only reach out more. And anyone else you've know, at least have heard of the effects of Alzheimers, and will also feel bad for you. They may develop more respect as well.

Bobcare - thank you for clarifying your situation. My heart goes out to your mom, I know my mother (94) suffered a broken heart after my sister, who promised to care for her the rest of her life, systematically abandoned her last year. Also, I'm glad to know you will be able to bring in additional help to assist you with your parents' needs. In the past 2 years I spent a small fortune caring for my mom and my monied sisters have not contributed one dime. These things are hard to fathom. -My best to you and your family.

To Bobcare. I see this a lot and have lived it too. I have one brother that lives in Maine and my parents in West Virginia. My brother never lifted a finger, not even a phone call to one of us siblings to even inquire if there was something he could do. I also lived in West Virginia, but two hours and $12 worth of tolls away, but when my dad died I was 8 days, 9 nights there, three days home then repeat. When my Mother got so bad and had to go to hospital then hospice house I was there 24/7. She stay 26 days in hospice house and I left only once to attend a wake/funeral of my nephew that died. I was gone for 18 hours...4.5 of which were driving. I had 5 boys and a husband to take care of too! And two siblings that lived with a very short walking distance from my parents...only one really helped...I feel your pain...and it's real! I don't understand why children from the same parents don't feel the obligation...whether they live next door or across the country. My parents took great care of all 4 of us children...but only two gave back. I didn't say any of this to get a pat on my back...I would not change anything! I had the great privilege of holding my Mothers hand and stroking one of her cheeks as she drew in and exhaled her last time. No one can ever take that precious time away from me. I know it's hard! Please be patient and remember that your parents gave you life and no doubt a good home. I'll pray for you and your parent(s) and situation. Cherish any time you have with them...you will never get a second of it back! Good luck!

BB1 care. I read comments here and feel similar reactions. My mom gets followed around the house by dad with alzlhymers and he is repeating himself.self centered and demanding. I understand he has a disease process going on and try to redirect his thougts without critizism. My sibling who lives close by, spends 6 hours a month here . Takes them out to lunch. Im live in caregiver. I feel its not enough to time to understand the needs they have. She thinks I live there and im odligated for most everything. Ok however sis was always here all her life and now when folks need her the most she is pulling away from folks. Mom really feels the emmotional distance but cannot communicate. Shes embarrested to share her grief about this. I can only do so much. Nobody wants to support any extra care but only me. Now i will get some more care because of necessity. Sibling is useless wealthy + has a wall up for protection! thanks

To Bobcare, I would like to see you separate your parents in some way, to save your mother's life. If you see that your father's abusiveness is hurting her, please do something to help her. Take care of her feelings. Feed your father separately, etc, and keep him away from her. Do everything you can to not allow him to be abusive to her.

Hey David,
I think you are right on. Any letting go of shame is a blessing. It is a "should" sickness in the USA. We feel embarassed "for them" because we are afraid for us.

I took care of my mother for eleven years. She passed from dementia 3 years ago. I got increasingly clear (writing about it...) that it was my stuff that usually got in the way of allowing her a new path with the least resistance and most joy. ...maybe it is about watching (and bearing witness to) different lights going on.

My husband passed away in October, but I could not be embarrassed about the manifestation of his disease...he would still laugh and cry and be happy to see friends,and that was enough for me. He had the courage to face the world, so why shouldn't I?

My Mother had a diagnosis of Parkinson's and dementia and later Alzheimer's. Sometimes she would "see" things. Her dr. Told us to be truthful with her...to acknowledge that we believed that she really believed she was "seeing" whatever, but that we could not. No humiliation. She was singing a lullaby and had her arms in such a way as to think she had a baby in her arms. I told her the song was lovely. She looked at me and said I thought I had one of my babies in my arms. I said which one and she said YOU, that's powerful. I would never try to take that feeling and emotion from her. She passed on Christmas Day 2010, but she's always in my heart and her ALZ memories too.

My 87-year-old mother has Alzheimer's and has suffered a very severe decline over the past year. She knows she is confused and forgetful, and it bothers her. Just yesterday she told me that she is ashamed. I asked what she had to be ashamed about and she told me that a mother should take care of her children, not the other way around. My heart broke for her. I tried to reassure her that it is the natural order of things for the parent to first take care of the child and then for the child to take care of the parent. It seemed to calm her somewhat, but she still cries when I do anything for her. In my opinion, there is nothing to be ashamed of -- we will all decline in some way or another with advancing age. It is the natural order of things.

My mother was a hospice volunteer and dreaded the ALZ diagnosis when she received it. She was always meticulous about her appearance so when she began having trouble dressing we tried to help her. One morning she came to breakfast with all of her clothes on backwards and put us all in our places with this reply, "Ah, who cares?" We handled every day after that a lot more relieved.

Facinating! I am going to ask my doctor to check out all of the tests mentioned to see if I have the beginning stages of Alzheimer's desease and try to find a facility in my area that specializes in it for further testing. I feel an urgency to make specific plans for my care now while I am still totally responsibile for myself. These articles are so informative! I don't want to be a burden to my only child, a daughter. She is stressing out now over her father's (my ex) mental decline & works out at 5:00 AM every morning before going to work. I have always been so independant so this is really scary to me. I have been trying to learn a song, "sunny", for over 3 years now to sing for my friends in a foreign country with a band for a huge party for their kids and it has been so difficult. Now I understand why. "It is what it is" but now I feel compelled to the necessity of totally checking it out and not put it on the back burner. As Teddy Roosevelt said, "There is nothing to fear but fear itself"! No more guessing and fear to deal with once I find out that either I have it or I don't! Ha, ha.....at the moment, this kind of thinking on my part is brilliant!!!!

I was very pleased with Dr. Ofri's perspective. I am the caregiver for my 90 year old mom. She is in the 5th to 6th stage and I haven't noticed any embarrassment at this stage. She will apologize for spills she may occasionally cause, but she doesn't make a big deal about it. Its just a done deal.

My husband, an engineer, knew he had Lewy Body Dementia. Having a diagnosis was a kind of relief because it at least explained these very disconcerting things that were happening to him. He was very open in explaining that he had LBD to others. Was he embarrassed? I don't think so. He was frustrated. He was sometimes angry. Early on he told me that it wasn't fair all of his brothers got to die relatively peacefully of heart attacks but he took care of his heart and now had to live through this terrible and terrifying disease. He really hoped he would die of heart disease before he had to face the end of life with dementia.

He hated his limitations. But embarrassed? I don't think so. He had bowled in the 220 range at one time. He took great pleasure when he bowled 100 after his dementia diagnosis. He was not too embarrassed to join the senior league and took great comfort in the encouragement of his fellow bowlers. He joined a golf league for persons with handicaps. He was frustrated that some days he didn't have the strength to finish 9 holes, but as far as I could see he was not embarrassed.

It did not seem to bother him when others had to help him dress, bathe, and use the toilet.

I think that his attitude that dying would be better than this existence lessened considerably as the dementia progressed. We did everything we could to maximize quality of life. It wasn't the life he had envisioned, but it was not a life without pleasure or good feelings.

I really like this article, and it probably explains one aspect of the "worse than death" thinking. I don't think that embarrassment is always the relevant factor, though.

I take care of my folks in their 90s mom dialysis dad alz/dementia. My mom is so harassed by dad who doesnt seem to realize her condition and care just for himself. It is slowly killing her with the disrespect and boundless feelings. My sibling has deligated all the care to me because I live in my folks home no rent. However it would at this point be difficult for me to move out as my folks can handle assisted living and love their home. It is very isolating for a sibling to get off the hook . Sibling donot have any patience for my dads scarry disease. So I feel so much for others seeing their loved ones at this stage of life. Thanks for letting me get my 2cents in . GOD BLESS

What a beautiful response. I actually felt relief when I read your heartfelt words. I am caring for my mom with dementia and my sister with down's syndrome. I have often heard those comments from co-workers and friends how they would end their own life rather than suffer with dementia/ALZ. They have no clue -how horrible colon cancer that has spread to brain is. How bad parkinson's is at end stage. How awful was it when the young lady in Georgia lost all her limbs to flesh eating bacteria? We are put on this earth as humans , fragile humans . No promises for perfection or everlasting beauty. We start out as helpless little beings and sometimes end that way but we have one another. I am proud to have my mom and sister in my care. They need lots of assistance and we have lots of help. I take them to church , to dinner, to family gatherings etc. Momma has no clue but she feels love and kindness and that's all that matters.

I watched my father, a decorated war veteran who worked his entire adult life, helped to raise 4 kids, bought and sold businesses and property, slowly decline into almost complete incoherence from age 80 to 82. When he finally died from the complications brought on by Alzheimers (in his last 10 days, he was reduced to a nearly vegetative state as the result of a fall that broke his back), I felt relief for him and knowing him for more than 50 years, I could hear him say "..Thank God that's over." It was certainly in an indignity for him to be completely confused by everything and fully dependent on others, just like a child. For having this dreaded disease, he might have felt embarrassment or shame if he was lucid enough to know what was happening to him, but never from any of his family.

This is a wonderful article. I have enjoyed your other articles as well. My mother has dementia and I think she did feel embarrassed when she became incontinent--she was aware that she was and it bothered her. She also feels embarrassed when she is naked in front of the caregivers, but I don't think this is due to dementia. I have noticed other people who are more outgoing that don't suffer embarrassment at all during bathing, etc. I think it depends on the person, their own sense of dignity and pride and possibly their Catholic upbringing-hah. I am not sure where that outside embarrassment from other comes from, but it is a bit selfish. I feel like mom experiences things that I can't understand and she seems to have extraordinary sensory powers that I do not have. For example, she seems to know when a person is going to enter her room ( she is in a facility) before they enter--things like that. She lets problems roll off her more easily than I do. She communicates on a deeper level with people as well. So how do we really know how someone feels through all this. At any rate, we should continue learning about it. I think to classify everything in a medical sense is wrong, calling it a disease is wrong. This is really a western cultural phenomenon--to label it a disease.

This is very interesting to me. I have wondered why for the last four years or so my mother NEVER apologizes. NEVER. No matter what happens, no matter how grave the error, no matter the consequences (and they have been severe), no matter the danger and risk, no matter how much inconvenience, extra work and time are generated for others (me!), my mother NEVER apologizes.

It is defense, defense, defense. According to her, "it is not a problem." Everything to her is just a big "Oh, well..."

This gives the impression of someone who is absolutely selfish and inconsiderate of others. I have really been astonished by my mother.This article makes me begin to believe that it is just another symptom of the disease. An explanation is a great consolation.

This past weekend, I took my mom who is in the early/moderate stages of ALZ to an event with many of her past coworkers and children she taught over the last 35 years. I have been nervous about it for weeks because of this - protecting her dignity. I almost declined taking her but stopped myself and said "she will enjoy it. I don't care about the pitying glances or 'thank God that's not me' looks - I care about my mom." Of course, if she showed anxiety we would make a graceful exit, but that's all I cared about. Of course, if her dignity was in jeopardy, we'd leave. Yes, a few people send glances my way when she repeated herself once or twice, but overall, I think she enjoyed herself and it was worth it. It's not about me or anybody else out there, it's about her. It's like putting on a new pair of compassion glasses - some people get it, some people don't. It made me realize that from now on when I interact with somebody with a disability, I look them straight in the eye and turn a blind eye to their disability. it's easy to do with someone you love, harder with people you don't know. But then you see their soul and it can help strengthen yours. I'm also realizing that what I want to fulfill my life may terrify my mom and I need to work mostly within her comfort zone - a little challenge isn't a bad thing. And I believe there is life after this, so not letting the indignities and challenges kill your spirit. A day ago my brother emails me that mom completely forgot her Thanksgiving visit. i don't believe she did. Her spirit remembers, as does mine, and that matters a lot.

Dr. Hilfiker seems to have captured the core if the shame issue: It is PROJECTED shame. We in the caregiving role believe we would be ashamed if we were thinking, speaking, behaving like the person with dementia. We may also be struggling with the enormity of our emotional responses to the patient's circumstances--responses that are powerful, but seem wrong. "How can I be angry at my wife for something over which she has no control? Yet, I am frustrated that she cannot remember the data I just stated for the seventh time." Culturally, we are leaping to quickly to identifying things as "worse than death." My Alzheimer's afflicted wife cannot do much of what she once did, but she is still a living human being into whom love is invested.

Everyone's Alzheimer's journey is different. For some people -- like my father, who is in stage 6 --, there are rages, including physical aggression, bowel incontinence, extreme agitation, sleeplessness. He no longer feels embarrassment, though he did at earlier stages. Now, he has lost too much higher brain function to conceive of or care about how he appears to others. Up until recently, he has been sensitive to feeling condescended to or patronized. But he also has bouts of extreme paranoia, so it's hard to separate those concerns. He cannot comprehend his surroundings most of the time, but he is surrounded by love and he still has "good days" in which he is fairly content. Alzheimer's is now being recognized as a terminal disease and the late stages represent an extremely arduous journey, especially for the family. The patient gradually becomes less and less concerned with those outside himself or herself. Embarrassment requires a fairly sophisticated concept of the "other," in particular, the ability to imagine how you appear in the eyes of other people. Not a concern for the late-stage Alzheimer's patient. It's not embarrassment that makes Alzheimer's a "fate worse than death." It's the length of time of the suffering for all, as the late stages last the longest.

This is a very heartfelt comment....I wanted to click on helpful but for whatever reason, do not find the place click...Good for you, Doctor Hilfiker

I think one of the most poignant examples of this concept is Glenn Campbell's last song, "I'm not going to miss you." Glenn suffers from alzheimers and sings about the fact that he won't be missing his wife....for the obvious reason. This is so complicated because those of us who have had love ones diagnosed with dementia and/or alzheimers, interject our own feelings about the situation without really trying to understand exactly what the individual is feeling. Thank you for your honest and very vulnerable article.