Early dementia in my mother living with us affecting me, my husband and son

rutgerjen

Hi everyone, I am struggling to say the least. It is thought my mom has dementia, specifically behavioral variant FTD. It has been a whirlwind because she moved in with us and we didn't know she had this and figured it out along the way. She has annoying behaviors and even though my son and husband know it, they get annoyed and upset and I can see how much it affects them. I am a very patient person and they are not and it affects me every day. I don't know what I should do and I worry if I move her into AL that she will deteriorate. She can do most things right now and she is driving :-/. She has no awareness of it and it is very sad. She was my best friend in the past but I haven't had a normal conversation with her about life in probably 10 years. I don't want to ruin the only family I have created. When I see my husband or son get annoyed it really affects me and I cry. I have talked to both of them numerous times but not sure what else to do. I am really struggling here.

M1

Welcome to the forum. I am sorry you find yourself in this position. The driving is a big red flag. Has she had a professional driving assessment to know that she is safe to do so? If not, she and you could be risking everything you have, financially and otherwise.

The other thing to think about as you think about living alternatives is to be realistic about what level of support she needs. Many here will say that by the time you are talking about assisted living, that ship has likely already sailed and you may need to be more realistically thinking about memory care. That's an important conversation to have with the administrators as you look at facilities. Also, depending on your/her finances, an important early step is to be sure you've consulted with a certified elder law attorney about powers of attorney, living wills, and Medicaid planning, if she might need it for long-term care.

There are a number of folks here who are dealing with BV FTD, so hopefully they will respond too. It's a tough diagnosis and I'm sorry. But you are absolutely right that you should protect your chosen family, especially your son. Their lives--and yours--matter just as much.

terei

This is a progressive disease. She will deteriorate regardless if you have her live in a facility or stay at your home. If she stays with you,

your family will negatively impacted more and more. Many LOs do very well at MC (I agree AL is probably not feasible) where she can have a staff trying to meet her needs instead of family members who are not trained or equipped emotionally to be with a PWD 24/7. It is enough to oversee her care from the outside IMO

mommyandme (m&m)

I’m sorry you find yourself in this place. Your mom is going to deteriorate regardless of where she is, unfortunately. It sounds to me that your relationships with your husband and son will definitely deteriorate if she stays. Does your husband suggest placing your mom? By the way, I’m not a firm “place your mom” caregiver. Yet, it sounds like a no brainer in your situation. No offense and I don’t mean to sound harsh. Something’s going to give and sure don’t want it to be your life. Your mom will likely adjust and may be better off. I’m really sorry for this heartache for you. Keep coming back and sharing.

harshedbuzz

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

My first thought, is do you have a DPOA to act on behalf of your mom? If not, you need to make that happen asap or start the process of obtaining guardianship of her.

What do you mean by "it is thought my mom has dementia, specifically behavioral variant FTD." Has she had a complete workup by a neurologist or memory center team? Are they aware of her alcohol use? I feel like this is really important given her young age and her ability to obtain wine without you knowing.

My dad had mixed dementia--Alzheimer's and Wernicke-Korsakoff's caused by a Thiamine deficiency related to alcohol use disorder. Dad rarely drank until later in life after my sister died; for women the threshold for "too much" is lower than it is for men. My parents were living away and my mom ignored my pleas to have him evaluated which meant this treatable condition wasn't identified until he'd lost a lot of cognition. Dad did respond well to IV treatment for a time but was unable to understand and comply with the need to remain abstinent. He would have had better function for a longer time before his Alzheimer's worsened. FWIW, he had a lot of behavioral features and at times I wondered if the was some FTD-bv in the mix as well. He was a challenging individual.

The other piece is the driving. Does she have a diagnosis of cognitive impairment or dementia in her medical records? Would her insurance carrier cover her in an accident should this happen? She could be sued for everything she has in an accident. If you are POA, and you are allowing her to drive, you could also be held legally accountable as well to say nothing of the guilt you'd feel if she injured or killed someone. You've already admitted you won't let her drive your kid, why would you let her drive around other people's kids?

FTD is a very challenging diagnosis and one that takes a village. It doesn't sound as though you have that village in your aunts, husband and son. You and your little family have to come first. The obligation you have to them-- your son especially-- is greater than the one you have to your mom. It's OK to delegate her hands-on care and just be a daughter. You don't get a do-over with these years with your boy and it sounds like doing so would risk your marriage as well.

I agree with the others who suggest placement in a MCF. I won't sugar-coat this, but sometimes MCFs discriminate against PWD who aren't just pleasantly befuddled. My dad was rejected by my mom's first choice MCF based on his WKS diagnosis because of its reputation for "behaviors" and earlier onset of incontinence. My first-choice place did offer him space in their community. They have a local reputation for being able to manage challenging behaviors with validation and redirection and have a geripsych who visits weekly. They did share with me that they limit their admission of PWD who have FTD-bv to one resident/hall at a time because of their higher need for supervision.

I am sorry this is so hard and that the options are so limited.

HB