We told my mother she had Alzheimer's. At the beginning she got a book and did a lot of research. Now that she is in later stages, when she gets frustrated and says that she is losing her mind we remind her that she has Alzheimer's. She is fairly accepting of that. She does have some aversion to the word dementia though. She always gets upset when she hears that. I think she thinks it means demented and has a negative connotation. We never use dementia only Alzheimer's.
Why tell them. There is nothing that can be done. And the doctor probably already has told them, if they are able to understand. You'll probably just get them agitated, and if that far probably are unable to legally sign any paper. Let it go.
In my case, my husband has Lewy Body Dementia. He is 76. He has worried for years that he may develop the disease since his Mom and aunts had the disease at the time of their death. As it turns out, this is not the same dementia he knew about and worried about. I have not told him, all proper "papers" have been in order because I don't think he'll handle it well (whatever that is). I pray that as the time passes he'll move further WITHOUT pain!!!
Being a caregiver for those with dementias I avoid using the terms "Alzheimer's or dementia" & instead refer to it as a fuzzy memory or memory issues when talking with my clients.
Yes, the person who has been diagnosed with Alzheimer's should be told. The person should be told in a way that he or she can understand--and it might take a social worker, care coordinator or advanced practitioner nurse to do it. This is especially important if the person is well enough to put his or her own affairs in order (will, living will, power of attorney) and discuss what he or she wants done. The person might want to visit memory care facilities, continuing care retirement facilities and independent living/assisted living with memory care facilities and decide which one(s) he or she would like to live in and make financial arrangements. A person might want to create his or her own care plan. A person might want to complete 'bucket list' items (trips, visits to family, etc) while he or she is able. A person might want to sign a DNR order. A person might want to distribute family heirlooms to relatives. A person might want to make his or her own funeral arrangements (for example, selecting music to be played, select readings and help the pastor plan the sermon). In my church, when you join, you are asked to list your favorite hymns and your favorite verses. My minister told me that he asks these questions innocently. He said that most people don't realize that he's asking questions relevant for planning a funeral. He's known for his weddings and funerals.
In the past, caregivers have answered the question, "Should I tell...?" with a resounding No. People who were dying were not told that they were dying. Children with serious illnesses and disabilities were not told about their health problems. Caregivers made decisions and didn't involve those that they were caring for in the decision. This proved to be a huge mistake. People were subjected to treatments that they might not have wanted. When it came to the medical treatment of the very young and the frail old, they were treated more like pets and not like people.
I know what can happen when people don't share important information with the seriously ill. My father was dying, but hadn't entered hospice yet. My mother and brother snuck off to the funeral home and the cemetery to make funeral arrangements for my father while he was asleep. I was tasked with keeping an eye on him. He woke up and asked me directly if they were making his funeral arrangements. I told him the truth. I told him that I was sure that, when the time came, that there would be a nice, simple service, officiated by his pastor friend, with family and friends. I told him that they had selected a very pretty cemetery near where he had worked for his final resting place. I got into trouble with my mother and brother, because I had truthfully answered my father's questions. They wanted me to lie--something I would not do.
My Moma and I found out in August 2002 that she had Alzheimer's and I thought ok, we can handle this. The month she passed which was Dec. of 2009, she had 5 siblings to pass away from complications of Alzheimer's in 12 to 18 months before her. The family just didn't know what to expect next. It was so very hard on everybody. Now my oldest Aunt has Alzheimer's and she just turned 95. She and Moma were very close. They played Scrabble all the time. To answer the question: YES!!! Anyone that has Alzheimer's, Dementia, Cancer, any kind of disease that might have anything to do with ending your life, you have a right to know. You need to have time to get things in order if you haven't done so already. You'll also find out those that really love you and those that don't. You will find out so many things in the beginning before you start forgetting. I found out this past April that I have mild Dementia and already a few of the people that I have told are pulling away from me. I don't understand why!!! I'm no different! I haven't changed except I do have problems remembering words and I don't drive anymore because I get lost easily. And what hurts so bad---all the way to my core---is one of those people is my beautiful daughter. I have to admit that we were pulling apart before we found out about my dementia, but I think it's because it started when she quit going to Church and started changing. I'm not going to be around cussing for anyone. God is #1 in my life and always will be. So yes, we should know that we have Alzheimer's or Dementia disease so that we can prepare ourselves. God Bless each and every one of you.
I agree with those that said it depends whether or not they have ( or still have) the ability to understand what this means. I, also, would take into account what their reaction would be if they knew. My mom died of Alz. and we never told her that she had it. It would have crushed her and we couldn't see any benefit in telling her.... Blessings to you and your family...it's such a hard road to travel. Lindaz.
I think it depends on the person. I'll give what happened to me and my mother as an example. I knew my mother was having memory problems when she moved to my home 4 years ago. But she would not take any tests, said her doctor back home said she was fine. She has always taken extreme pride in her intelligence so to admit that her brain might be dying was not something she could accept.
Occasionally she would recognize that she had memory issues, and would be sad because how could someone that is as intelligent as she was possibly have brain problems? I tried to tell her that she still had her high IQ, she just had some parts of her brain that were not physically well, and that there was no correlation between intelligence and dementia. That appeased her for a while.
I finally got her to sign all the necessary paperwork and add me to bank accounts, etc, not because she felt she could not handle them (but she was having troubles at that point), but because her older sister was in a nursing home back home with no one to be able to be her advocate because she had not assigned those duties to anyone, and her husband basically abandoned her when they had to put her in memory care. So I told mom that she didn't want to end up like her sister, and it was important to get that paperwork done so that I could legally speak for her if necessary. It still took me a lot of talking to get her to agree to it.
Then she had a fall while I was at work that required 7 stitches in her head. I took her to a neurologist under the pretext that we needed to make sure she was okay after the head injury. When the doctor told her she had mild cognitive impairment, mom got mad, and would not go back in six months because she didn't like the diagnosis.
Now mom is in a memory care assisted living facility, and to this day will not admit that she has a problem and I don't tell her. I learned my lesson. When she is in the hospital I take the staff in the hall and explain that she has dementia, and that she will need constant supervision. I do this so that mom won't be upset, I said something in front of her last time she was in the hospital and she asked me why would I embarrass her like that, and was very upset.
This is not a direct answer, rather my experience. Thought I'd share. My husband has dementia, not Alzheimer's. I know several Alzheimer's patients at the respite care center I take him to who know they have Alzheimer's. I'm amazed at how different each patient is. Some discuss it matter-of-factly, others tell you as soon as they meet you, others cry in private. Everyone is so very different. Some patients with dimentia/Alzheimer's have anosognosia. This means that the part of the brain that allows the patient to recognize that they are ill or have something wrong is damaged. My husband thinks he's just fine and has for the entire seven years of his increasing dementia. He's 60 and walks with a walker and extremely slowly (like a man in their 90's). Someone told him he walks slowly and he asked, "I don't walk slow, do I?" I know of another man in the middle stages of Alzheimer's with what I think is anosognosia, as he thinks he's fine as well. His wife and I agree that it's good for the patient, but it makes it hard to discuss the future or do any future planning, like asking about funeral plans. It makes it that much harder for the caregiver. I try to play along, but sometimes I can't take it and have to leave the "conversation". Some days I can't take too much of him being the expert on every subject and he's so very confused and doesn't get anything correct and doesn't have any idea what he's talking about! Best wishes with what you decide to do.
Off Topic-I take low dose nonprescription Lithium to protect my Brain. I'm almost 57, and having a few "Senior Moments." Researchers found that those with Bipolar Disease (which isn't ME) who were on the antipsychotics had a 33% risk of Alzheimer's (compared to 16% in healthy people.) But-THIS will blow your mind...the ones on Lithium (and they typically take 1200mg/day) had a FIVE percent risk. Now, I will allow that there could be an entirely different mechanism for Dementia in those people. But, low dose Lithium has been tried for those with Mild Cognitive Impairment, and the results are encouraging. Curry dissolved in coconut oil and medical marijuana are worthwhile, too.
You may ask yourself "Why is Lithium-cheap, and the original treatment for Bipolar Disease, not being used more often?" Well, there are medico-legal CYA problems for us physicians. If the Lithium level gets too high, it IS Lethal. This can occur from Suicidal overdoses, or diminished kidney function. But, in the end, the antipsychotics are much worse. They cause movement disorders, and even Parkinson's Disease, they simply are less dangerous in an overdose situation.
My opinion is yes they should be told. My mom was told but she is in denial and in her own world and everybody else has a problem except her. She also has paranoid schitzoaffective disorder. And dementia. She also keeps thinking she is being released from the nursing home any day now. T is makes her happy. I don't want to tell her she's not being released and take that happiness away plus make her angry. I don't know if that's right either. She's been in and out for years but this time supposed to be permenant I guess that's why she thinks it's temporary Delusions and hallucinations give her false information
Babydoll62, Yes, I agree, people should be told. Back in the day, my father's doctor told me he could tell my father did not want to know he had rapid oat cell Ca of the lung, so the doctor was not going to tell him. After removing one lung, my Dad lived one year Do you think he knew by then? Another person, married to my mom, died with the same cancer within 3 months because he refused blood transfusions.
The time spent helping my Dad that last year was important to me. He was living with his wife, and there was no actual caregiving going on, but he would call me to take him to tree surgery jobs he would supervise, important to him. That is where I came to understand the subtle difference between dying of Ca, vs. Living with Ca. It is a matter of the heart when one has a terminal illness diagnosed.
People are waiting to meet you and encourage you here.
In the past, caregivers have answered the question, "Should I tell...?" with a resounding No. People who were dying were not told that they were dying. Children with serious illnesses and disabilities were not told about their health problems. Caregivers made decisions and didn't involve those that they were caring for in the decision. This proved to be a huge mistake. People were subjected to treatments that they might not have wanted. When it came to the medical treatment of the very young and the frail old, they were treated more like pets and not like people.
I know what can happen when people don't share important information with the seriously ill. My father was dying, but hadn't entered hospice yet. My mother and brother snuck off to the funeral home and the cemetery to make funeral arrangements for my father while he was asleep. I was tasked with keeping an eye on him. He woke up and asked me directly if they were making his funeral arrangements. I told him the truth. I told him that I was sure that, when the time came, that there would be a nice, simple service, officiated by his pastor friend, with family and friends. I told him that they had selected a very pretty cemetery near where he had worked for his final resting place. I got into trouble with my mother and brother, because I had truthfully answered my father's questions. They wanted me to lie--something I would not do.
Occasionally she would recognize that she had memory issues, and would be sad because how could someone that is as intelligent as she was possibly have brain problems? I tried to tell her that she still had her high IQ, she just had some parts of her brain that were not physically well, and that there was no correlation between intelligence and dementia. That appeased her for a while.
I finally got her to sign all the necessary paperwork and add me to bank accounts, etc, not because she felt she could not handle them (but she was having troubles at that point), but because her older sister was in a nursing home back home with no one to be able to be her advocate because she had not assigned those duties to anyone, and her husband basically abandoned her when they had to put her in memory care. So I told mom that she didn't want to end up like her sister, and it was important to get that paperwork done so that I could legally speak for her if necessary. It still took me a lot of talking to get her to agree to it.
Then she had a fall while I was at work that required 7 stitches in her head. I took her to a neurologist under the pretext that we needed to make sure she was okay after the head injury. When the doctor told her she had mild cognitive impairment, mom got mad, and would not go back in six months because she didn't like the diagnosis.
Now mom is in a memory care assisted living facility, and to this day will not admit that she has a problem and I don't tell her. I learned my lesson. When she is in the hospital I take the staff in the hall and explain that she has dementia, and that she will need constant supervision. I do this so that mom won't be upset, I said something in front of her last time she was in the hospital and she asked me why would I embarrass her like that, and was very upset.
Good luck.
You may ask yourself "Why is Lithium-cheap, and the original treatment for Bipolar Disease, not being used more often?" Well, there are medico-legal CYA problems for us physicians. If the Lithium level gets too high, it IS Lethal. This can occur from Suicidal overdoses, or diminished kidney function. But, in the end, the antipsychotics are much worse. They cause movement disorders, and even Parkinson's Disease, they simply are less dangerous in
an overdose situation.
Yes, I agree, people should be told.
Back in the day, my father's doctor told me he could tell my father did not want to know he had rapid oat cell Ca of the lung, so the doctor was not going to tell him. After removing one lung, my Dad lived one year
Do you think he knew by then?
Another person, married to my mom, died with the same cancer within 3 months because he refused blood transfusions.
The time spent helping my Dad that last year was important to me. He was living with his wife, and there was no actual caregiving going on, but he would call me to take him to tree surgery jobs he would supervise, important to him.
That is where I came to understand the subtle difference between dying of Ca, vs.
Living with Ca. It is a matter of the heart when one has a terminal illness diagnosed.
People are waiting to meet you and encourage you here.