May 30, 2012

Lilliane Asks a Question and is Seeking Advice

What is the best way to deal with this?

Alzheimer's Reading Room

Reader Lilliane asks.

Question: More than once, he has been impatient and challenging to friends ... in public ... like snarling at someone or being really unreasonable.

I haven't told anyone about the AD as it would feel like a betrayal, and I feel certain he would be horrified if I did say anything.

One good friend, whose mother had AD, recognized it for what it was but others just think he's getting really ornery. His speech at times is also questionable. This is becoming awkward.

What is the best way to deal with this? Thanks in advance.

Please use the comments box below this article to add your insight and advice.

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Original content Bob DeMarco, the Alzheimer's Reading Room

33 comments :

  1. Lilliane, I am so much about coming out of the shadows with AD. My mother is also horrified to think anyone might notice she struggling, and she is quite advanced with the disease. To not tell others is, to me, to throw a shroud of shame over the disease. I don't tell others in her presence, but certainly everyone can see she is not her old self - and once I openly discuss it - others feel much more comfortable discussing their own situations and fears about their own family members. If my mother were ill with some other disease, I would not hide it; I don't believe in hiding AD. Bob has been so instrumental in helping so many of us treat this as any other daily challenge. So, I am matter of fact when I discuss mom's behavior with others - and I find they appreciate knowing and also appreciate the lesson they have learned from me: there is no shame in this disease - and so it belongs out of the closet. You will be helping others as Bob has helped me and I hope I am helping others. Attitude is everything!

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    1. I agree, Christie. Our former pastor, a well-loved man who was very intelligent and very kind, developed Alzheimer's and some on the staff did not think we should tell anyone. I thought it was foolish because everyone could see that he was having a hard time. If it had been heart disease or cancer, the parishioners would all have been storming heaven for him. I think they would also have done so if told he had AD. New members had no idea of the great pastor he had been and wondered why he was still around. It was so unfair to him. I didn't know then what I do now, so I think I also failed him for not being more honest with the parishioners.

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    2. Shirley, your heart disease or cancer comment really resonated with me. I used to work with families to put tracking bracelets on clients with wandering. I had families that didn't want the neighbors or anyone to know. It had never dawned on me prior that AD seems to carry similar to mental illness in hiding it like a bad family secret and I don't have enough first handle knowledge to entirely understand why.

      I also assumed some of it was generational? My grandparents are WWII generation and tended to be very much of the mind that family matters were kept private.

      I feel for Lilliane though. The person suffering with AD often has a fair amount of shame and embarrassment and I want to protect the integrity as well. But at the same time you want them safe and getting help.

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    3. Lilliane. You really don't have any choice. Most people have some experience with AD; even if it is at a distance. If you don't tell them, they don't have any idea what to do or how to react and they will just drift away or disappear quickly. I assume that the "he" you refer to is your husband or your father. You are going to need help in dealing with him. In our community, we have a Center for Healthy Aging, which is associated with the Univ. of Texas Medical School in Houston. After diagnosis by a geriatric physician, the patient is assigned a trained social worker (case worker) and a geriatric psychiatrist, as a team. Believe me, I consult with them quite frequently, as my daughter and I try to cope with my wife's rapidly and radically changing moods and delusions. In addition to the army of help you can get through the Alzheimer's Reading Room, you need to locate the resources for help to caregivers in your community. Call the local Alzheimer's Association or the National Alzheimer's Association "hotline."

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    4. Billy Harrison5/31/2012 4:39 PM

      I snnounced this to our church right in the beginning and don't hesitate to tell others of my husband's disease. He has been very active in our community and others need to know reason for changes. I know that these people may be helpful to me in the future.

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  2. Consider this: by not telling others, you are depriving THEM of the opportunity to be caring, loving, understanding, compassionate and helpful to you and your husband. Now aren't they worth that opportunity?

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    1. I completely agree with Carole. I am an RN and we live in tiny mountain town. I told community members that know my dad about it before we even hit the moderate stage. We are rapidly progressing the last 6 months. I figure that the more people that know, the more help they would offer if he seemed to be having problems. We let him drive alone here in town because everyone knows him and if he gets confused he makes a beeline for my office at the hospital. He used to stop and visit along the way and some of my coworkers call him dad, but now it's like he has blinders on and goes straight to my office ignoring eveything and everyone on the way.

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    2. Disclose the informsion of dementia a loving way. Any other fails.

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  3. Keeping things a secret only makes the situation worse.

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  4. I honestly do not get this "keeping quiet" theory. Sorry, I am not being sarcastic, but what is the point.

    How is dishonesty, and hiding a disease from others being helpful.

    For none thing, we are not talking about an issue that this person "chose" to be. He/she has a DISEASE that is not fault of anyone, it just is there. How are you demeaning that person by telling it like it is.

    At least if others new that he had the disease they could more readily understand why he is the way he is. And by the way, he probably is the way he is because he is frustrated and scared and maybe even lonely because they usually feel so "out of the loop" and there is nothing they can do about it.

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  5. If you don't want to use the "AD" term for some reason, it is also possible to explain he has been having some "medical issues" as of late and leave it at that. Most anyone should be able to relate to having medical problems

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  6. When I first started this with my mom, I kept some small business cards handy that I would hand to whoever my mom was talking to that said 'Please be patient with me, I have Alzheimers'. I never gave the card to someone when my mom could see, but slipping a business card into someone's hand gave them the knowledge they needed, and my mom the feeling of others not knowing. You can even have some 'instructions for communication' printed on the back of the card. Once mom asked what that was I handed them and I said it was my business card. She accepted it just fine. Maybe it can be a 'friends' business card, or a 'service persons' (hvac, electrical, etc.) that you're handing out. I used it in retail outlets, restaurants, etc. The Alzheimer Association suggested it and it worked beautifully.

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  7. Liliane, I admire your commitment to protect your loved one. Having said this, I completely agree with Carole Larkin.... and I believe you're putting yourself under enormous stress by pretending the 800 pound gorilla isn't in the room when others enter your space. One thing AD caregivers don't need more of is stress. You'll be healthier and happier and you'll be a more effective caregiver in the long run by de-stressing yourself in this moment as much as possible. Be real. You'll be teaching others how to do it, if and when they have to care for an AD patient. Just my two cents. Love and blessings to you.

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  8. I will tell you my experience and hope you can learn from it. My husband has had Alzheimer’s from some 10 years now. At first I would finish his sentences and cover up or make excuses any way I could to "help" him. Trust me Lillian; it is no help but an elephant in the room. It puts the burden on you to cover for any of his outburst and awkward behavior and that is stress we all do not need as we travel this journey. One day after the 5th confirmation that my husband had Alzheimer’s I sat down and wrote a blanket email to everyone that was family and close friends. I told them in a short sweet way that he had Alzheimer’s and we had been struggling with the diagnosis but it had been confirmed too many times to ignore it any longer. It was a relief for me, the pressure had been taken off me and the very idea that I would tell anyone would torment him if he were in his right mind because he wanted to control everything when he was “normal” (whatever normal is – other than a setting on a dryer) but we have to put the past in the past and deal with what is before us.

    Today I have the support of those I work with, my kids, grandkids and close friends. Without being able to be honest about how hard it is sometimes and to laugh and cry or share the struggles it would be nearly impossible to make the journey.

    I say let the whole world know and do not be afraid or embarrassed. God did not make a mistake and he certainly didn’t start with your husband or mine. Keep smiling, it helps a lot!

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  9. Hello, when my son was a youngster I told him to first tell the truth, not wait until all other efforts to disguise it had failed. I do not know the nature of your relationship with your spouse, but now seems like the right time to sit down with him, perhaps several times, perhaps as a family, and tell the truth to each other, even if they don't want to hear it or hide from it by believing it is not true. Once you have been honest with each other it is easier to be honest with others.

    My best wishes to you both on this difficult journey....Richard

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  10. There is nothing I can add to the comments already made. I'm in my third year of caring for my husband. He too occasionally has outbursts but ALL our friends and family know and truly it is easier that they do, on both of us. He now cheerfully tells everyone he has AD and it really does take the elephant out of the room.

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  11. I had two parents with dementia/Alzheimer's, now only my mom. Once I began talking with their neighbors, they helped me better understand what was happening. My mom could describe some of what was happening with my dad, but not what was happening to her. She knew her memory was getting worse, but she could not see how her judgment was affected. Those around us see and know, and many have compassion, having experienced similar situations with loved ones. Dementia is caused by physical changes in the brain that we are just beginning to understand and are not anyone's fault. Watch the Charlie Rose series on the brain, especially segments focused on dementia and Alzheimer's. As you begin to see the science behind it, while there is not yet a cure, you begin to educate yourself against an irrational stigma that must be erased. I am not a fear-based person, but when I began trying to help my parents as their lives fell apart, I was overwhelmed, under-educated, hardworking and silently fear-based. I tried to fix things instead of accept. The more I learned, and still learn, the more clearly I see fear as an obstacle to acceptance and better care. The path was not easy. Bob's ARR has been a great help. Christie is right, "Attitude is everything!" There should be no shame. Shame prevents us from understanding the reality of the disease and the best, most compassionate, enlightened ways to address it. One note: the medical profession is behind. Some hospitals, doctors and nurses are informed, but most are not up-to-speed. Don't expect every professional to know more than you about what is best for your husband. Dementia/Alzheimer's was not diagnosed nor taught in medical schools till the 80s. Professionals are catching up and momentum is increasing, but they still have a long way to go. As you begin talking with others, you will find much help, as other posters atest. He is understandably agitated because the disease has changed his brain. He knows this. When dealing with my mom and my dad, I had to first understand how they felt. Bob calls this "entering the Alzheimer's world." It is the first step to learning how to support him. The other side of this - take good care of yourself. Take time to exercise, do things you love, because he needs you to be as healthy as you can be. You need that as a gift to yourself too. Suzanne, California

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  12. Susan in Dallas5/30/2012 6:07 PM

    I have heard this many times and think it fits this situation, "The truth will set you free".

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  13. I too, for several years chose not to explain DH , whenever anyone would ask how he was. I'd say"Fine". As things became more noticable, I'd say "OK". Now I've had no problems saying it like it is, altho now he has much problems walking & is in w/c some of the time, which makes it more noticable. Some will ask me (not in his presence) if he will know who they are. I just say " I think so. His main problem is remembering how to do things & walking". We live in a community of 10,000 so his delema has traveled though our friends & aquaintances . You are right, alot of people think of it as a mental health problem, I'm not ashamed & I wear my purple Alz. bracelet to bring awareness of this horrible DISEASE.

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  14. Sometimes it is much harder to keep it all inside. Once others knew about my dad and it wasn't hidden anymore, you will feel like a ton of books just left your back. Love and prayers

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  15. When my husband was diagnosed with AD we immediately informed family and friends - thus they understood the changes and were able to adjust. I also carry a card (I bought a box of Business Card sheets and printed a pretty picture on one side and the other side I printed this: Thank you for your patience and kindness - my husband has Alzheimer's Disease. When he is talking to strangers and not making much sense I discreetly hand them one of the cards. They always say Thank you and continue to listen to my husband. He feels accepted and the stranger has an opportunity to do a good deed. I find that women are more accepting of his behavior. I agree with others - you must acccept this Disease and be open about it - just think you are teaching others about this disease.

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  16. Everybody here help everybody if it was't for this I think i would be help less Thanks everybody. Love AZ

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  17. My mother was diagnosed with Mild Cognitive Impairment so we new ahead of time what could follow. In our case it was the opposite, my mother could keep up so well in front of other people, using the traditional social conversation that everybody will say how well she was doing for her age. That happened even with the doctors. She will be so charming and lead the conversation that they will tell me: "I don´t see any problem with her". (In this case I was trying to get her medicines because her doctor was out of town) Of course, I didn´t want to make my mother look sick, so I only insisted with the doctors. At the beginning only close family can tell the difference between just aging and Alzheimer because every patient is so different. That is why it is so important that close family help with early diagnose and treatment.

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    1. Maria - In our case it was the same. I knew long before the doctors did that Mom had Alz. Her family physician who did home visits and should have seen from the condition of the house that something was seriously wrong, just blew it off. I felt quite alone with my concerns, and especially so since other family members were also in denial. And my poor dad who was very ill and under her care suffered from neglect, while mom was defiant and belligerent about her ability to care for him... I think that is why it is so important that not only the public be better informed, but that family physicians are better educated about geriatric care. We also had a social agency come in and do an assessment and they told us there was nothing they could do. They failed us, too...

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  18. Much better to tell people, saves any embarrassment and makes it easier for you. The majority of people are happy to help and are usually to know there is a reason for the way he/she is behaving. If people react badly to your telling them then that is their problem, not yours. No doubt there will be a few like that.

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  19. Lilliane,
    The "best" way to deal with this is to do what your heart tells you is most suitable, kind, and compassionate for the situation in which you find yourself with your loved one. Many skilled caregivers and people with Alzheimer's Disease or another form of dementia have generously shared wonderful advice, suggestions, personal experiences, and tips for your consideration. My guess is that you will process all of it and will customize the "just right" response for your circumstances. It is said that hindsight is 20/20. I know now that when my husband exhibited impatience and orneriness with me and others before we had a definitive diagnosis of early onset dementia, he was just plain scared and frightened and the behaviors were symptoms of anxiety. The "gift" in these awkward moments was that he was doing his level best to communicate and continue to interact with his family, friends, and colleagues. What helped us the most was for me to let him know that I loved him, to talk through anticipated situations, and to listen more to him and to talk less myself. I wish you well. Kathy

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  20. Lilliane,
    I have some of the business cards, I used one when Dad had to take his car to the body shop. His church family is aware of it. On occasions when we are out, I try to pull people aside when he is talking to someone else and whisper to them to be patient with him as he has alzheimer's. I find everyone is understanding and a lot of people will share their experiences with the disease. The only problem I encounter is my brother who seems to still be in denial and I can't do anything about that. So, I just take care of Dad and continue on. This is a journey and Dad and I are making memories together as we travel. I keep a journal, using a 13 month school planner. I note things on dates when there is a problem, appointment or when I order his meds.. it helps me keep up with changes he is having. I agree you will find a lot of helpful information here and use what works for you. I, too, wish you well.. Lynn

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  21. Tell folks! I have whispered to others as mentioned to be patient explaining Mom's behavior. I like the business card idea!

    We live in small community - so a lot of the businesses, utility companies know now to call me if a problem arises! Before they realize what was going on mom was ordering stuff and calling all over the place for problems that didn't exist.

    You may just want to send a short note/letter out to people - if you have time to put it together explaining.

    Not telling people cuts out a support network that you will need along the way.

    Praying.

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  22. By not telling anyone about your loved one having alzheimer is a disservice to them. My mother has Alzheimer's and steadfastly insisted from the beginning that IF she has Alzheimer's it is only in the beginning stages. My stepfather decided to go along with that story. So, when my stepfather passed away I became the caregiver and many were angry with me for placing my mom in a memory care unit because according to them she was only in the beginning stages. What they didn't see was what happened behind closed doors because all her troubles were hidden by my stepfather. I tried without success to get them to contact The Alzheimer's association but to no avail. My mother would get very angry saying she was not "nuts", even though I explained that this was a disease like any other. It is so easier for all involved for them to be honest with friends and family. You will need that support and without it the caregiver will be just another casualty of this disease.

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  23. Hello Lilliane, I have to agree with most of the comments here that keeping family and friends in the dark about the diagnosis is not the way to deal with this. Alzheimer's is nothing to be ashamed of, this disease effects a lot of people, the stigma I beleive is changing for the better, people are getting a better idea of what the disease is and what it does to us. Letting those closet to you know can be of great help as well. The media attention of recent years has been of great service to those of us who are Caregivers, by focusing attention to just how many people this disease affects, the public is learning more and more.

    As far as behavior issues goes, here is a link to some information on how to deal with that. http://www.alzra.org/behavior-issues/

    Hope this helps.

    Joe Lucido
    Director
    Alzheimer's Research Association
    www.alzra.org

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  24. I've been living with early Alzheimer's disease for seven years since diagnosis. My wife and I didn't delay telling all our (adult) children and soon thereafter telling all our friends. As an advocate, I've been quite public with it. I can't think of any downside from letting my family and friends know about it, and everyone has been very supportive. All the best to you and your husband as you confront the challenges of Alzheimer's.

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  25. Keeping it a secret only makes it more difficult for everyone, by telling people they will hopefully be more understanding to the situation and you make get some help. Just don't tell them in front of him. The Alzheimer's association here in Mass have business cards available that tell why your companion is behaving in such a manner. Most important our thoughts and prayers are with you as you go through this difficult journey.

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  26. In our case the person with MCI/early AD was a physician. As soon as AD was diagnosed she retired immediately. Symptoms were extreme fatigue, inefficiency, inability to multitask and auditory memory problems. Nevertheless, we live in constant fear that going public with the diagnosis will bring meritless malpractice cases hoping to hit a jackpot.

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