Long Distance Dilema

JewelQueen

I posted the following earlier in the week in a different discussion; the person who replied suggested this would be a more appropriate discussion topic as he/she was the only reply to the original post. I hope someone maybe has suggestions or has had a similar experience and let me know how they navigated the challenge.

A little (moderately long) background: My mother is in a memory care facility in Washington state. My sister holds ALL of my mother's powers of attorney. My sister and I have been estranged for more than 15 years. For several years after diagnosis, my mother lived with my sister in her home (as did my step-father). My last visit to my mother was in March 2019 (I live in Texas). My sister did not tell me when my mother and step-father were moved to a facility (my step-father had Parkinson's with dementia). For three months I had no idea where they were; I finally begged my step-sister to tell me, which she did. This was in 2023. My sister has publically refused to update me on my mother's condition or care (NOTE: I am willing to tell the story / reason for the estrangement if that is important).

Up until about 2 1/2 months ago my mother always seemed to know who I was when I called; however, that no longer seems to be the case. I do not know what to do with this development. Do I continue to call on a schedule? The facility cannot, or will not, give me information on my mother's condition, presumably for a couple of reasons: my sister holds the POAs and my sister has told them not to do so.

If anyone has ever had this or a similar situation, I would greatly appreciate words of advice for navigating this challenge. NOTE: the estrangement with my sister is not related to drugs, alcohol, or violence.

Thank you in advance for your advice.

harshedbuzz

I'm sorry. This is a tough one.

The facility wouldn't communicate with you because of HIPAA even if your sister was OK with it. Even when HIPAA is signed, a facility is going to want to communicate through a single family member as a rule.

Your mom forgetting who you are is pretty common in later stage dementia. She may "know" you as a daughter but think you're much younger than you are. FWIW, this happened to a dear friend of mine who was her mom's sole caregiver in her own home— it's part of the disease.

HB

ARIL

This is very hard, and yes, the lack of recognition is a common part of the advancing disease, whether or not you are long distance. What do you see as your main goals in this situation?

If you want to know how your mom is doing, is it possible to get your sister to agree to let you (or some selected third party) get a report on a regular basis? If you want contact with your mom, can you enlist the help of someone on site to sit with her and help you have a phone or video call? Can you send her a card/letter/note with pictures of yourself (maybe as a child and more recently) and ask someone on site to help her read it?

I read your other posts and saw that you cannot travel. I am sorry about the complexities here, which seem to be many and difficult.

JewelQueen

Thank you for the comments. For some clarification…my mother HAD a private nurse up until the end of January. This woman (I will call her Sally - not her actual name) would text me pictures of my mother on outings, let me know how Mother was doing, and always kept pictures of me, my family, and extended family posted for Mother to see. She is the one I always communicated with. She is apparently no longer employed for Mother. I understand HIPAA, having worked in staff education for two area hospitals for nearly 20 years. I do not ask questions when I call the facility regarding Mother's health or any details on her care. Because of circumstances, my biggest fear of all is that I will not be told when my mother dies and I will only find out on my "next" call after that occurs.

I will simply have to keep sending cards/letters, calling her, and try to let that be enough. It will never be enough, but I cannot change it.

Again, thank you so much for your comments.