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Annahank Asked April 2018

My mom was diagnosed with Alzheimer’s about a year ago. She has refused to go back to the doctor. Is there anything I can do?

My dad claims she’s still taking the first medication given. She is getting worse by the day but he won’t force her to go back to the Dr and we’re not allowed to talk about the diagnosis in front of her because she gets very mad. I guess my question is, is there anything I can do? My dad has told me to basically mind my own business when my sister and I offer suggestions. He’s suffering but just will not do anything about the situation.

polarbear Apr 2018
Annahank - I am sorry for your difficult situation.

Just to give you another point of view, if I, myself, was diagnosed with Alzheimer's, and I know what the future will be like: years and years of suffering and decline and loss of independence and dignity (being bedridden, having someone clean my behind and spoon feed me, being locked up in some horrible nursing home, forgetting who is who, etc.,) I would not take any medication, because I want the end to come soon. I don't want to suffer or make my children suffer.

I am not suggesting that your mother intentionally stops taking med for the reasons I stated for myself. It could be that she is in denial. I just wanted to tell you what I would do for myself and I don't think it's a bad way to handle it.

jeannegibbs Apr 2018
As you probably know, there are no medications or treatments to cure dementia. Each of the drugs developed so far is intended to reduce some of the symptoms. None of them extend life. Taking them or not will not impact how long you live with the disease. If they work for a particular patient (and they often do not) the patient should be somewhat better in some ways.

Often drugs that weren't developed to treat dementia are used to manage symptoms. For example, an antidepressant might be prescribed for a dementia patient who is depressed. It is the same drug that huge numbers of other people take. It is not specific to people with dementia.

The benefit of your mother going back to a doctor is that there may be some treatments that would make her feel better -- less anxious, for example. There is nothing to be done to cure the dementia or extend or shorten her life span.

My husband fell down again and again. His nuero doc said it sounded like he was having narcoleptic-type episodes. He treated him with that drug (had to persuade the insurance company) and the falling stopped! Miracle!

What can you do? Nothing. This is up to your mother and dad. Denial is a perfectly legitimate coping mechanism. Don't take that away without giving something in its place.

If Mom develops a new symptom that Dad is worried about you could suggest she a doctor for that symptom -- NOT for dementia. If she agrees to go, get a note to the doctor ahead of time that she has dementia but is in denial.

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Ahmijoy Apr 2018
Karsten is right. We’ve said before that about all you can do, unfortunately, is wait until there is a crisis. It’s not easy, but the more you push, the more they will push back. If they don’t want to face facts, you can’t force them.

Karsten Apr 2018
Tough I know. My father has alzheimers and doesn't know enough to refuse his meds but my mom has severe anxiety and will not take her anxiety meds, making life miserable for her and the rest of us. Not much you can do.

RayLinStephens Apr 2018
Sometimes all you can do is pray.

My mother had symptoms of medicine reaction and over medication. I made an appointment for the doctor to go over the meds and see what might need changing. The night before the appointment, she called me to tell me not to bother as she had cancelled the appointment. I wasn't surprised and told her so. If she expected me to beg, she was sadly mistaken. I do believe in 'free choice' - sadly, her decision was to stop everything and tell no one. Not the best solution as 6 months later she went critical and nothing could be done. But it was her choice to make.

BTW, my dad never told us how bad she was getting - we learned a few things after the fact. But he too had extreme health issues so I didn't blame him. Besides, just like your father, he was trying to not rock the boat with Mom. I assisted him with living for another 7-1/2 years.

madzeena Apr 2018
This is difficult for sure. My mom was also a reluctant participant in her care and my dad enabled it. And then my sister was in denial. So uphill battle in every regard. Eventually after educating myself - this website extremely helpful, Teepa Snow, Mayo Clinic Alzheimer's newsletter, books, local Alzheimer's Org meetings - the time came to step in when my dad died unexpectedly. It took a couple of months to get a handle on how much my dad had covered up my mom's decline but I convinced her that we were now a team and would work together to make sure she was taken care of. So I'd say learn as much as you can about your mom's condition and be a detached but observant daughter until you have to step in. That time will come. And best to be as prepared as possible.

coppertino Apr 2018
Let her be...and pursue the life she would have wanted you to live!

mlface Apr 2018
I like that statement, we are a team. When my hubby was w Dr. Who told us he had alz. Simple verbal test, I never confronted him w his alz but told him if he doesn't remember something just ask me. That phrase of being a team could give them the security they always need to know


you are w them. She may not be at that stage yet but will be. Our only reason for doc once a year is to sign LTC requirments. Could be for UTI, depression or falling, etc. Just do fun things w her now before you can't & don't bring up the bad. Always dwell on the fun times together as it could help dad too. Go to support group & spill your gut out. All there understand. You could pay for a counselor if group sharing hurts. Men may need that more. We have several men in support who started out in denial but few times w group came to realization. It is not the same husband/wife vs daughter/mom feelings. That's ok but that's why dad & you may not be on same page. Read all you can Alz Reading Room, Understanding the Dementia Experience, Teepa Snow. So many helps out there. Most of all remember there are 2 worlds. Your world you can chg things but in mom's world things cannot be chgd so accept it & move on w love & security she needs.

Isthisrealyreal Apr 2018
Love them the best you can and accept that your mom is stricken with a progressive disease that she will eventually die from. I am sure that both of your parents know and understand this, so let them make their own choices as long as they can, there will come a time when that will no longer be possible. It is a hard, heartbreaking journey, this dementia, you will be tried and tested, confused and frustrated like you never thought possible, so for now, do all you can to create happy times, you will need them in the future. One of the hardest things I've had to deal with on this journey, is my dad chose to disconnect from family as his very young wife was an abuser, so for 20 years no one knew him, then he gets very sick and her and her 2 kids he raised are gone and we are left with this complete stranger to care for. On the hard days, I wish so much that I had happy times to revisit. So that is why I recommend loving them right where they are and make happy times now.

May God give you strength and courage to walk this journey.

Hugs 2 u and your sister for caring enough to want to help your parents.

tperri123 Apr 2018
You didn't say why she needs to go back to the doctor. If the only reason you feel she should go back to the doctor is because of her memory loss, then there is nothing the doctor can do. Your Mom will get progressively worse as time goes by and she will have no resistance if she needs to go back to her MD for another medical reason and your Dad will comply if she has a medical need. Right now, your Dad doesn't want to upset her and he knows there is nothing he can do or the doctor can do. As long as she is taking her meds then I don't believe there is anything to worry about.

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