Looking for Resources as Well as Other to Talk To

TimothyJHester

I am son who has always been a 'momma's boy'. For the last three years I've witnessed my mother going through Dementia. My sister is her primary caregiver in another state. I've visited to assist with my mother's care as well as cared for her briefly under my own roof.  Not only is her suffering breaking my heart, but it has also caused significant rifts between me and my siblings. My mom and my sister used to be my main support system. Dementia started taking my mom and it started to feel like every foundation I had started eroding away. Every time I get the opportunity to travel and spend time with my mom, it seems like there is just a little less of her there each time. I can see little glimpses of the mom I remember in random behaviors or the rarest smile. There are still tiny glimpses left in her eyes, but most of the time it's like its someone else with my mom's face. The difficulty isn't entirely in just a personality change. The heart wrenching aspect of it is that the delusions and hallucinations that plague her are all alarmingly negative in nature. She is constantly tortured by conspiracies and delusions of suffering. I've had practically nowhere to turn where someone else may understand.

M1

Welcome to the forum Tim.  This is good place both for resources and understanding.  Sorry that you are losing both your mother as you knew her, and your support system.  If you give a bit more information about the sibling dynamics, I'm sure that there are others who can chime in.  In your position as not the primary caregiver and living at a distance, I would imagine it's hard to figure out how to help/how to contribute.  It may be painful if your mother forgets you because she doesn't see you frequently, but this happens (it even happens to those who are primary caregivers).

Negative delusions and hallucinations are extremely common.   there are medications that can help--but again, as not the primary caregiver, it may be hard to bring this up or inquire about it in a tactful way.

One thing for all families--are legal issues taken care of?  for instance, does your sister who is the primary caregiver have power of attorney?  Conflicts about finances among siblings are also common.  

TimothyJHester

Thank you for message. My sister, who is the primary caregiver, thankfully had the foresight to have POA paperwork signed when my mom first started showing subtle symptoms but was not officially diagnosed. The divisions between siblings are rather complicated in our situation. I am the middle son of three children. There is an eldest daughter and the youngest of us, and the current primary caregiver. Our eldest sibling was in denial for a long time and let her pre-existing ill will toward our other sister cloud her judgement during the long process of trying to get our mother diagnosed. The strain of infighting only deepened divides and did nothing to aid our mother. Thankfully, we eventually got my mother diagnosed and the eldest sibling finally came around to recognizing that there is a problem, but there is a lot of damage left to our previous relationships. While normally I've been on the same page as the youngest and primary caregiver there are instances where I've felt she hasn't taken my input into account as much as I feel she should. At the end of the day the one afflicted is our mom. We are each her children. I just want what is best for my mom. It just saddens me that her illness has been so divisive vice unifying.

As for the financial concerns. It's not a source of contention with my siblings beyond how we are going to pay for a memory care scenario. Quite frankly with the figures we have discussed it will put an immense strain on us as things now stand. My sister has maintained my mom's care under her own roof for now, but we don't know how long that will remain tenable.