Mom refuses help - What can we do?

Lisa007

I am new to this group. My mother likely has dementia, but will not go for tests, see doctors for a proper diagnosis. She resists taking any new medicine, claiming that her children and doctors are trying to kill her, or she doesn't need medicine. She realizes that something is wrong with her brain, but she just asks if she will get better and doesn't realize or accept that she may have a disease.

Her symptoms are depression, anxiety, OCD, paranoia, confusion, cognitive decline, stress and anger. She has always been introverted, but now will not go out anywhere, and only allows her 3 children to help/visit her. She lives at home by herself. She expects her 3 children to be with her 24/7, and does not want help from a hired caretaker. She has recently lost 20 pounds likely because she is not eating enough, even though my brother and sister bring her food several times per week, enough for the entire week. She also does not manage her medications well, sometimes deciding she doesn't need to take medicines, sometimes forgetting to take them. She can not follow TV, does not like radio, has difficulty with email and phone.

We are struggling to understand how to help our mother. How can we get her diagnosed when she refuses to go for tests and refuses to go to medical appointments? Even if diagnosed, how do we convince her to take medicines to help her symptoms? How do we convince her to allow paid caregivers in to help her with meal prep, medicine mgmt, and housekeeping tasks?

NikiD

Dear Lisa:

I am also new, but I was going through something similar with my husband last year, and everyone recommended we move him to an assisted living facility. You've probably had that advice already. It just isn't possible for you to care for someone with Alzheimer's remotely. They need to take their medicines regularly. And, even if you were there giving her the medicine regularly to reduce the anxiety and confusion, etc., her condition will deteriorate and there will be times she just will not cooperate with anyone. She will need to be monitored and her medicine increased from time to time to cope with increasing symptoms.

I hope you can find somewhere she can move to soon. When I packed up and moved our things out my husband refused to come with me. I had to go back for him later in the day. He still distrusts me at times, and wants to 'go home' although I have been living with him in a well-appointed assisted living community for 4 months now.

It's a terrible disease. Best wishes on your journey, and hopefully these forums will be a comfort to you.

Niki

Phoenix1966

Welcome and sorry you have to be here.

Your mother probably has anosognosia. It is not denial. People who have this do not have the neurological ability to perceive they have any deficits or problems. 

You will want to read this short “handbook”, which should help you understand a little more about what your mother is going through:

https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

Most of us have to resort to fiblets to get our LOs to doctor’s appointments, etc. Tell her there is a new insurance/Medicare/Medicaid rule that requires her to have a physical or she will lose her coverage. Write up a note of the issues you are concerned about and slip it to the nurse/doctor before the appointment. While it does sound like she has dementia, there are some conditions that can mimic the symptoms, so it is best to rule them out via a check-up. 

Does anyone in your family hold a legal and/or medical POA? You’ll want to see a CELA if not. Certified Elder Law Attorneys are very valuable in getting the documentation set up as well as helping to protect assets if your LO will need to apply for Medicaid. 

Ideally, one of you(if possible) should spend a few days and nights with your Mom to see how she navigates her ADLs. You said family brings her food but she’s losing weight. It’s likely she’s just letting the food go bad. My grandmother would not allow any outside help that wasn’t family, either, and that never changed. She would tolerate someone for 30 minutes or so and then order them out. Eventually, when her care became too great for my mother and me, I placed her in a MC facility. She was probably at stage 6e by that point, double-incontinent and had trouble swallowing most foods. 

To say that dementia, which is a terminal illness, is tough is an understatement. And sometimes it feels like a battle. Your mom is lucky to have you looking out for her. Come back often when you need help or just a place to vent. 

Ed1937

The fact that she realizes there is a problem can work in your favor. There are many conditions that can mimic symptoms of dementia, and some are treatable. If she has a treatable condition, when successfully treated, the symptoms should not get worse, and may be completely eliminated. But the treatment needs to be started ASAP. So maybe knowing this, she might be more open to seeing a doctor for testing. Here's a link for you. https://www.agingcare.com/articles/reversible-conditions-that-can-be-mistaken-for-dementia-476370.htm  

MiKelly66

My mom is very independent minded, and in denial about her condition. I hate to say it but the one thing that helped her concede to accepting help was guilt. I told her it’s ok if SHE thinks she didn’t need the help, but that I needed the help. So when she asks why the aides come to the house, I tell her I need them there to help me so I  won’t have to constantly worry about her. I agree with the others that suggest minor fibs to get her back to a doctor. She doesn’t have to and probably won’t ever acknowledge that she has dementia, but maybe just a visit for insurance purposes or some other general exam. Baby steps!

Good luck.

Ed1937

Lisa, I just watched a video on the subject of helping your LO when they refuse help. I think it's worth watching, but it's not an instant fix. 24 Ways to Help Your Loved-one Accept Your Help 

GwendolynD

Hi Lisa,

I don't have any advice.  I'm in a similar spot as you so I'll be watching replies to find out how to navigate the situation.  I appreciate you posting this question.

My Mom was diagnosed with probable Lewy Body Dementia, and after a brain MRI and recent loss of ability to read/tell time/operate anything (even a toaster or tv remote), her neurologist suspects primary progressive aphasia too.  She has another memory clinic assessment appointment next week and I am trying to figure out how to get her to agree to go to it.  She's been telling me all week she doesn't want to bother with any more appointments.  

I'm sorry we are both here having to figure this out.  This forum is the best help I have found for caregiver support. 

msmithserious

I have only been a member for 30 minutes. Does "fibbing" cause problems. Doesn't stuff like that confirm the paranoia. People are plotting and scheming behind your back.

I know this is tough, and I am trying to help deal with a person that uncooperative. Maybe this is the best way.