Need guidance Mom with Alzheimers

abishop0817

Hi, hoping someone can give me some guidance. My mom that is 77 was diagnosed after the blood test, MRI and spinal test that she has Alzheimer’s. Her neurologist told us she is in the early stages of the disease so she can get Leqembi injections every two weeks. She is supposed to get her 12th injection tomorrow and almost everytime it is time to take her it is a fight. Tonight she refused to go tomorrow and told me that her doctor called her and told her she doesn’t have to get treatment anymore. She really believes that it happened in her mind. The other issue with her is that she is on thyroid medicine and if she doesn’t take it correctly her mental state is not good. Also, for the last month she has had a UTI. She just finished her antibiotic today but I still do not believe she is much better. My question is, how can I help her accept her diagnosis as she is constantly pushing back about getting her injections. Also, does anyone know if it is possible for home health to come to her house and give her the injections at home. I think if she was home and someone came to her it would be better for
her. Sorry for all the questions, I just don’t know what to do. Part of me wants to just not make her go get treatment because it is a constant fight for me and my sister with her. Then I think my mom would push me to get help if she were in her right mind and something was wrong with me. Any help is much appreciated!

H1235

I know this may seem wrong, but could you tell her the shot is for something else (thyroid maybe). Is she living alone? It might be time to think about your plan b. If you can get her in for the appointment I would bring these concerns to the doctor (maybe a note, your mom would probably get upset if she were to hear the conversation)and get an opinion on living alone. Good luck

SusanB-dil

Hi abishop - welcome to 'here', but sorry for the reason.

We don't discuss 'this' disease with our LO. Most have anosognosia. This is not denial, but rather, the firm belief that nothing is wrong. Their view of the world is as-is. Discussing otherwise will not only be futile, but will lead to arguments and frustration - for both of you. I agree with H1235 - either tell her it is for something else, or tell her that she must see the doctor for insurance purposes, and that it is time for maybe thyroid or vaccination meds.

Check with her doctor's office and they might be able to check if a nurse could come do this through her insurance.

Rule #1 - Do not argue with a PWD. Rule #1 - Must take care of yourself. Rule #2 - see rule #1, both of them!

editing to add: who holds the DPOA and HIPAA access? very important… Good you also have your sister to help and is on the same page. That's a blessing. And your mom is blessed to have you looking out for her.

housefinch

I’d take a long, hard look with her neurologist at the true risk: benefit ratio for Leqembi specifically in women. This resistance to going to the injection is going to worsen with time, and I’d be thinking already if it’s worth it. You can’t convince her it’s important using reason and logic because unfortunately she cannot operate that way due to dementia.

harshedbuzz

@abishop0817

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

A couple of thoughts.

A UTI, or any infection, can really make an older person go off the rails even without dementia. It's important to make sure a culture was done to confirm the best antibiotic and to make sure the entire course of medication was taken. Given the non-compliance with her thyroid meds, I would have a concern about following the abx schedule. You might even want a follow-up urine test to be sure the infection has cleared.

Regarding the thyroid medication. Is she taking levothyroxine? Severe hypothyroidism can impact thinking and mood. If she's skipping it, perhaps she needs to have in-person medication supervision. If she is taking it but not heeding the empty stomach guidance, it's worth it to discuss with her doctor.

It's likely she has anosognosia not denial. This is a condition in which a person with dementia is unable to recognize their own impairment. You are not going to be able to convince her otherwise. This feels like gaslighting to her and will only serve to make her more suspicious and agitated. You'll have to create work arounds to keep her safe.

Specific to the Leqembi, this is not a hill upon which to die IMO. Testing shows that older people, women and people of color tend not to respond as well to the infusion medications which— at best seem to preserve early stages for an average of about 8 months in those who do respond well. Given the real risks, time, inconvenience and expense of this medication, I wouldn't encourage my mom to take it. We've already discussed it as part of her Advanced Directive.

https://www.axios.com/2023/07/11/leqembi-azheimers-drug-women-men-efficacy

HB