Wednesday, October 20, 2010 Becky, Community Member, asks

Q: I take care of my 85 year old mom and my elderly, mentally handicapped sister. I need help with the following.

My Mom makes everything very difficult, because even though she knows her mind is 'aging' and so on, she will INSIST that she be listened to (again and again) when I tell her I already know something.

She might have said it 5 minutes ago, or many, many times in the past, but she thinks she never told me.

This takes away my ability/time to even brush my own teeth or feed myself or have ANY of my own thoughts. I am constantly taking care of their needs, which wouldn't be so bad, but she hinders THAT with her anxiety and by insisting that I listen to the same stuff ALL the time.

That doesn't even begin to cover the problem, but here's what I don't 'get.' She can display GOOD cognition and understanding and orientation at the doctor's office.

My brother and ALL the people who have spent regular time with her (as opposed to 'focused on medical issues' visit to the doctor) are of the same opinion as to how bad her memory is, because we all have the same problems communicating with her.

She just doesn't process, track, or configure to where we can stay on the same page with her about most things. Her mind goes all over the place, and she thinks it's all of us who have a problem.

The best way I can describe it is to compare it to a computer whose processes are corrupted by missing files, incorrect paths, and so on. The thing still WORKS and tries hard, but it doesn't work RIGHT any more.

  • How do I explain to her doctor what is going on?
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Answers (5)
AFA Social Services, Health Guide
10/25/10 12:24pm

Dear Becky,

 

From your description, it sounds like your mother may have a cognitive impairment. Explaining this to her doctor can be as simple as describing what you are noticing on a day to day basis. To help give as concise a picture as possible, it may be helpful to write down your observations so that when you speak with the physician you could refer to specific instances. Specific examples as opposed to generalities can help the doctor obtain a better understanding of your mother's behavior outside of the doctor's office.

 

Your mother's representation of "good cognition" when she is at her doctor's office is a common occurrence among older adults. Often, older adults will present as "fine" to a physician or other professional because of the fear of being diagnosed with a terminal illness. Therefore, speaking with your mother's physician about your concern is a step in the right direction. A proper diagnose of her condition-whether it is Alzheimer's disease or not-is critical.

 

In addition, if your mother is, in fact, dealing with a cognitive impairment like Alzheimer's disease, it is important for you to realize that her actions are not intentional. Alzheimer's disease impairs a person's ability to accurately perceive a situation and behave accordingly. As you mentioned, it is having a toll on your well-being. You may want to consider joining a support group or arranging for some type of home care service, which can give you the break you need and allow you to focus on yourself for some part of the day. This care is often refer to as respite care and is beneficial to many caregivers like yourself.  

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NC, Community Member
10/22/10 3:05pm

Hi Becky,

 

This seems to be a complicated problem. The elder in early stage of dementia always denies that she has dementia. A few people admit they have dementia and plan for the future, but most elders deny and hate to lose independence.

 

It seems to be dementia as she repeats things a lot. It is also common for her to say it is your problem. They only see it as your problem, not theirs.

Depending on the family doctors, some doctors are understanding but some may not. Try to call the doctor without your Mom and see what the doctor says. If he is on her side, then you may need to find someone else to prove it. One way to diagnose it is through the psychiatrist or neurologist. In the office, they can give her 3 hours verbal test and determine if she has dementia. If it goes further, a scan can be ordered to see if she has vascular dementia.

You need to talk to the doctor behind her back. The trick is not to do it with her knowing. It looks naughty, but it is the only way out in order to help her.

A good doctor should know that this could be dementia. The key is the diagnosis.
It is common that families have a hard time with the dementia elders. We had a bad time in 2004-2006 when my father-in-law had early or mid-stage AD. We argued and fought for small things... Now he has moderate late AD (Alzheimers Disease) and is in a residential care home. It took us a lot of hard times to get over it. We were lucky that the specialist diagnosed him in late 2006.

 

Get the in-home care for help. Since you got another relative to care for, you need to find outsiders to help out on a part-time basis.

 

Good luck,

Nina

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NC, Community Member
10/25/10 1:03pm

Becky,

 

I want to add something about the part that your Mom acted normal at the doctor's office. It is actually similar to my father-in-law's situation. He used to be a physician in his home country so he was/is more opinionated and refused to accept the diagnosis in 2006. He thinks he would know but he was just a doctor in the ER. Usually the specialist knows more about dementia in details.

 

My FIL acts very different in front of family and the professional caregivers. If it is not a hospital and no one pisses him off by inserting all kinds of tubes in his body, he is in general very polite to the caregivers. He is actually more demanding with the family asking for impossible things to be done for him such as working for him. But he can no longer work due to his loss of working ability in writing and reading and etc. We sometimes call it 2 faces. I think it is like kids who go to school in the first day: the kids want the family and cry for the Moms, but they have to follow the rules given by the teachers. It is like they treat the family and outsiders very differently. One reason is the face - the ego. They hate to lose faces in front of outsiders unless someone is very close to him like a very close friend. Strangely, although my FIL lost all the cognitive abilities, he still wants to keep a respectable face in the doctors' offices. I think whatever concerns himself he will forget last.

I think it is natural your Mom fends for herself like that in the doctor's office. So the doctor's attitude toward the family is important.

 

Regards,
Nina

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Dorian Martin, Health Guide
10/25/10 4:58pm

Hi, Becky,

 

I agree with the previous suggestion that your mom has at least some cognitive impairment. I would guess that the area of her brain that handles short-term memory has been damaged. Therefore, she really does believe she is telling you something for the first time.

 

Also, based on what I saw with my mom, your mother may muster her mental capacity for a special event (such as a doctor's appointment). During that appointment she may respond normally, but may have a letdown the next day. I saw my mom do this repeatedly to the point where visitors thought she really didn't have Alzheimer's and thought she should not be in a locked facility. However, by the next day, she mentally was worn out by this amount of effort.

 

If you see yourself remaining in this caregiving role, I'd encourage you to invest in two resources - "The 36-Hour Day" by Nancy Mace and Peter Rabins as well as a training video produced by the Pines of Sarasota, which provides excellent examples of what's going on in a loved one's mind and how to handle situations like you are describing. I wrote about this video in a recent sharepost. And of course, you're welcome to keep asking questions at this website.

 

Take care and keep us posted!

 

Dorian

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Carol Bradley Bursack, Health Guide
10/26/10 10:41am

It's not at all unusual for elders to "act normal" for the short time they are in a doctor's office. It frustrates the heck out of caregivers. Many can do the same for seldom-seen family members.

 

This will take more of your time yet, but it could be worth it. Start to track her comments. Write the subject, time, frequency, etc. down for the doctor. Have your siblings do the same. Get anyone who knows her well to document her behavior, and then try the doctor once more. If you get no where, bring the documentation to another doctor.

 

Carol

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By Becky, Community Member— Last Modified: 10/26/11, First Published: 10/20/10