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bonesgal4821 Asked April 2013

How do I deal with people who seem to be in denial that mom has Alzheimer's?

My father passed away on November 2,2012 while my mom was in rehab for hip injury. I am her cargiver now, in my own home. She was diagnosed with Alzheimers in March of this year. It is in the moderate stage. How do I deal with people who seem to be in denial that she has Alzheimers? People offer me their own diagnosis, "she is just grieving for your dad and it will go away" or "she just needs to exercise more and it will go away", I do not want to be rude, but want to tell them that I feel like her Neurologist knows a little more than they do about Alzheimers.

EXPERT Carol Bradley Bursack, CDSGF Apr 2013
I'd just try to let it go without arguing. First of all, people are often at a loss to know what to say, so they try to say something to brush off the problem. "I'm sorry" would be more appropriate, but not everyone can do that.

The other problem with Alzheimer's and other types of dementia is that people subconsciously think that "if it happened to her it could happen to me." It's almost like they think it's contagious. So they say something quick and easy and pretend it will go away.

Your good friends should know better. If a good friend is giving you this kind of answer, have a talk with him or her and say, "No, it won't go away. She has a disease that will only get worse, and I'll need people to talk with."

I'd suggest that you continue to take part in this forum. People here know how you feel because they have first hand experience. Also, if you go to www.alz.org, the National Alzheimer's Association can help you a great deal. If your community has an Alzheimer's organization, that's also a great place to seek support. Group meetings with people who really understand can help more than you'd imagine.
Take care of yourself,
Carol

virtualhorizon Apr 2013
Many people continue to be in denial when Alzheimer's is diagnosed. Years ago, in the late 90s, my grandmother showed all the symptoms of AD and was subsequently diagnosed. Some members of the family refused to admit that she was afflicted until after her death. This was the case even though she got to the point where she didn't recognize her own family, called family members by the wrong name, had hallucinations and lost most of her memories. I have an aunt (daughter of the grandmother mentioned) who was diagnosed with AD about a decade ago and has been in a nursing home for quite a while. She doesn't recognize anyone at all, but is flourishing physically. Suddenly some of the family is saying she doesn't have AD, just hardening of the arteries! Where the heck does that come from? My Dad was diagnosed about four years ago. He himself can admit that he has AD, yet others can't. Until people ARE able to admit they see the disease in their relatives, and know it for what it is, society will not be able to tackle the disease and find a way to cure it.

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IsntEasy Apr 2013
People with dementia of any kind often have amazing abilities to 'perform' as long as the topics of conversation stay light. I'm always stunned by how many adult children are completely unaware that their parent is suffering from dementia. The early stages are easy to miss if your parent puts up a good front. I don't mean to suggest intent to deceive on their part. I think they do it reflexively, especially in front of their children whom they've always been in charge of protecting. Sadly, the facade will crack eventually and, as one poster stated, "it will get obvious soon enough."

anonymous155170 Apr 2013
I had a similar situation because I thought my mom had dementia, my sisters thought I was nuts in taking mom to the neurologist to have her checked for that. My oldest sister was with me when the neurologist gave the diagnosis, so they all knew I was telling the truth. My sisters felt like they were blind-sided because they were not prepared for it. The reason is because they made a physical decision to ignore signs of problems and they were not living with her everyday.

I still have one sister that ignores what is going on with mom, she calls, but she has no empathy towards the situation at all.

What I did was ignore what they said and did what I believed it right, that is what I will continue to do.

I am not trying to be arrogant or mean, but I have the medical POA, I have lived with my mom or she has lived with me for the past 2 years. I pay her bills and support her past what he social security is. So while they are my sisters and family, they really do not get to have a vote or a say. So if they don't believe me, I just ignore them or have nothing to do with them.

Believe me I have had some interesting battles with different family members. I avoid those that are not good for my health or my mom's. For example, my mom has a younger sister who keeps telling everyone that my mom should be in a nursing home. We are going to be near her home in May, so I am going to take my mom for a short visit and I mean a short visit. We are not staying for more than a night because it is not good for mom's health or mine. My mom doesn't want to go and we have had an agreement for a long time. So I don't want to hear her tell me what I should do. If my aunt wants to be put in a nursing home that is her choice, but my mom is not going.

So say thank you to them and move on. Sometimes it is better for ones health to not let others get you down. It will be up to them to deal with when they figure out it is real.

hadenough Apr 2013
Let them spend more than 5 minutes alone with them. Better yet go to a restaurant with multiple choices. Even better give them the keys to your car when they offer to "drive" because they are still "very good drivers." I have been through this when my Mother was quite good at what we call "showtiming." I would hear from the family that she is "fine", she needs to eat, she is grieving ect ect ect.... So much denial about dementia. In the last 6 months it has changed drastically (she is now 90) and the family has shut up. Now they are just afraid that she might end up in their homes if I get burned out. Welcome to the world of caregiving. There are many hurdles and also gifts. Hugs to you....

jeannegibbs Apr 2013
bonesgal4821, this is just your first sample of inappropriate and downright crazy things people will say to you as you care for your mother. I think that Carol has the right idea. Help your family and close friends understand. You don't owe the rest of the world an education. If you happen to be in the mood, have time, and you think the person is receptive you can matter-of-factly give them information, but you certainly can just smile and change the subject.

Keep in mind that most people mean well, and remember back before you learned about Alzheimer's up close and personal. Mostly people say dumb things out of ignorance, not malice.

hel0408 Apr 2013
My mom was in the moderate stages of Alzheimer's before she passed away a few years ago. I was a long distance caregiver and her sister lived by her. My aunt was in denial and still is to this day. I am now going through the same thing with my mother-in-law and my husband's siblings are in denial (Thankfully,??, I was an only child and had no one to quarrel with). I am watching my husband and siblings come to odds with each other because one won't admit what's going on. It is frustrating to watch and I have a difficult time keeping my mouth shut! It is a debilitating disease for the whole family, especially when one is doing fine physically, as my mother-in-law is. I agree that you should be firm with your close friends and let them know what is going on and you will at some point need them to talk to. My husband and siblings will be sitting down soon to talk about Mom and it will be a reality check for some. I would try to find a support group in your area if other people in your life won't be supportive. Hang in there - the more people you have to speak with, the easier the days can be.

ohreally51 Apr 2013
I have TWO NURSE SISTERS who don't see it! One is a Hospice nurse (did I mention that she also smokes like a smokestack, is overweight and drinks too much too, occasionally taking some painkillers with that???). I seem to be the only person in the family able to actually call a spade a spade and I am a) dismissed because I'm NOT a medical professional and b) the messenger who they seem to like to shoot. The person in question is my mother; don't think in her case that it actually is AD but there is some definite mental stuff that is getting a lot worse. My dad is so in denial that even though he can say she is 'hard to live with' and 'I think maybe she has Alzheimers (I think that is more appealing to him that bipolar or narcissistic) when I take the opening then and there (or have, because I have given up) to encourage him to get her to a doctor, he then will dismiss his own concerns, saying 'if she gets worse, then I will take her". Believe me, she couldn't GET any meaner or erratic.
IF I were in your shoes, I would just do what I have to do and try to develop a thick skin. You really can't 'convince' people who want to second guess you or have already decided that you are off base. If you just can't take being unable to convince them, I would offer up the responsibility to them. See who the takers are.

anonymous179890 Mar 2014
I don't think outsiders are able to see it because someone with dementia can "showtime" and pull it together for a visitor. When you tell that visitor that the person has dementia and is losing it they look at you like you're lying and making it up. According to the NH, as dementia progresses they lose the ability to "Show time".

alwayslearning Apr 2013
It'll get obvious soon enough!!

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