Dementia and family dynamics

JPMKAN

Hello all! I recently found my way to the message boards and was glad to read the experiences of others. My dad was diagnosed with dementia in 2020. He is in his late 70's and I am 38 - It doesn't seem young in the grand scheme of things but I was not expecting to deal with this until later in my life. My mom passed away several years ago and she was the glue for our family. 

My brother is my dad's day to day care taker as he does not work and was living with him prior to diagnosis. My relationship with my brother has suffered (he has mental health and addiction issues) and my dad is concerned about protecting my brother. My brother has pushed me away when I offer to help with taking Dad to appointments or organizing his bills. I struggle to know my place beyond taking my dad out on weekends and staying over one night every other weekend. My brother refuses to communicate with me except to occasionally berate me for things as simple as turning a calendar to a new month. I am so worried that we're not giving my dad the quality of life he deserves. 

I guess my concerns could be many different posts! In trying to think of ways that I can help, Does anyone have tips for convincing their loved ones to let you help with laundry and clothing organizing when it appears that they are struggling with it? My dad has mentioned that his closet stresses him out (he keeps many of his clothes on top of his bureau now) and I would love to be able to help him.

Thanks for reading! Sending love to all those in the same boat.

harshedbuzz

JPMKAN-

As the adult child of a PWD and someone who has a family full of people with mental illness and addiction issues, my thought is that you need transparency in all things to keep your dad safe. It would be beyond tragic for your brother to make a bad decision with dad's assets (costing him access to Medicaid as a safety net) or take advantage of him (financial abuse of the elderly). Your brother's behavior rings alarm bells all over the place for me. 

In your shoes, I would meet with a CELA and take steps to gain emergency and then permanent guardianship of your dad so that you can prevent that from happening. Despite dad's connection with your brother and desire to protect him, your brother's history should preclude him from access to your dad's finances or medications. 

HB

M1

Agree with harshedbuzz 100%.  welcome to the forum.  Sounds like that living arrangement was originally set up to take care of your brother, not the other way around, and should not necessarily continue by default. Thinking long-term, where would your brother live if dad goes to assisted living (which he might like now, frankly) or memory care? Your brother probably has a huge vested interest in maintaining the status quo. You are likely the one who needs to have financial and medical power of attorney.  You can find certified elder law attorneys at nelf.org. good luck, this is likely to be complicated, and I'm sorry.

towhee

Welcome to the forum- You are in a difficult situation. Does anyone have a durable power of attorney or health care power of attorney or a hipaa release? Have you been able to talk to his doctor?

Regarding the closet- Many of our loved ones start to have trouble making decisions about clothing. Some have had sucess emptying the closet and leaving only enough changes for a week. However, you have be careful as making any change in the physical environment can be very upsetting for the PWD and can lead to lasting behavior that makes you want to tear your hair out. If you do this start with just one or two clothing items and pay attention to their reaction. Some have let their LO know what they are doing, others do it without letting their LO know. Also, your brother might be upset if he can't even take you changing the calendar.

I agree with harshedbuzz, see a certified elder law attorney.

harshedbuzz

JPMKAN-

Circling back to your post, I totally agree with M1 that the symbiotic relationship between dad and brother likely originated as protection/care for the brother. 

In moving forward on taking charge of this situation, you need to also consider how invested in your brother's welfare you want to or should be.

You need to be especially mindful of dad's finances. If your brother were to convince dad to pay him a salary for caretaking or buy him a car or convince him to put the house in brother's name, this would disqualify him for Medicaid. Medicaid is the safety net for custodial care when dad's needs become too much for one individual. If your brother were to "take his inheritance in advance" or some such financial shenanigans, your dad could be left destitute and unable to qualify for assistance. Then what? 

There's another poster here- Saya_G who has a mom with dementia and a sister who has one of these symbiotic relationships with their mom. The sister likely has some mental health issues and has been recently diagnosed with pseudodementia. The situation has become very difficult for Saya_G to manage because doing right by mom is upsetting to her sister who has become dependent on mom (actually Saya and her DH) for a roof over her head and also a purpose in her life when she has not been successful in any other aspect of it. Sister defines herself as caretaker to mom even though she does an abysmal job and complains bitterly about it.

HB