Next steps

lisavalera36

Hello,
I am new to this group. My mother was recently diagnosed with Alzheimers. In the past month her condition has rapidly worsened. I have asked her neurologist about support and what steps to take next and she referred me to this website. Does anyone know what the next steps should be if my mom has become so paranoid she refuses to leave her house?
I live about an hour and a half away and have a husband and two children, so I am unable to be my mom's full time care giver. Any advice would be appreciated.
Thank you!

H1235

Welcome. I’m glad the neurologist referred you here, but what a shame they don’t offer more help. One of the most important things is durable power of attorney, will and legal matters. If she is hesitant (many with dementia are), suggest this is just something she should do now that she is getting older. In my experience the bar is set pretty low by the lawyer for them to sign, but I still wouldn’t put this off. Many with dementia suffer from anosognosia. This is an inability to recognize their symptoms or limitations. It’s much more difficult and even dangerous than it might sound. My mom thought she could mow her lawn and power wash lawn furniture (she needs a cane). If she is alone in her home, she will not be safe there for long. Assisted living facilities can have a waiting list to get in. If a facility is part of your plan for the future, I would start looking now and get her on a waiting list. If you are/will be her DPOA I would plan to move her to an Al near you. Dementia care is extremely expensive. If you think she may need Medicaid, you might want to bring this up with a lawyer as well. These decisions are not easy. I’m sorry, but including her in the decisions will probably not go well (anosognosia). Some people use the excuse that the move to Al is temporary while something in the home is repaired. It’s ok to lie. It’s called a therapeutic fib and if it makes anything easier for your mom it’s worth it in my opinion. My brother insisted we be honest with mom and she was so incredibly angry. How are her finances being handled? Poor financial decisions and a mismanagement of money early on are pretty common. People with dementia have been known to lose their life savings with poor choices. Many with dementia are not cooperative. Once you have to DPOA you need to start taking over and making important decisions, even if she doesn’t like it. We have a saying here, never try to reason with a person with dementia. It will only lead to an argument and you will always lose the argument. Just do what needs to be done. It’s hard to go against your parent and Lying to them seems so incredibly wrong. It’s hard. I would learn all you can about dementia. I will attach a bunch of links. Ask any specific questions you may have, browse the site or just vent. I’m so sorry you need to be here.

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

https://iona.org/therapeutic-fibs-ok/

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

pamu

Agree with H1235. I’d like to add, If you haven’t already, have your mom see a geriatric psychiatrist. They can prescribe and manage appropriate medications to help her symptoms and behaviors. If your mom tries to refuse tell her it’s a Medicare requirement for seniors (unless she’s especially savvy and would call to check). My mom’s neurologist and PCP were of no help at all despite my repeated requests for medication. My mother has Paranoid Personality Disorder along with dementia so I understand. Mom was diagnosed with Alzheimer’s 9 years ago but her geri psych doctor now says they think she has mixed dementia. My mom was hospitalized back in September due to a major wandering episode and from there was sent to a lock down MC facility. Things moved quickly because she was already on Medicaid. Prior to that she did a short stint at AL but due to paranoia, delusions and wandering she couldn’t stay there because she needed more supervision. Like you, I have a husband, two active kids and work FT. Come to the forum for support and information. This site is my therapy.