Mom rapidly declining cognitively

Sara Rose · August 23

All of this seems to have started in May when my Dad had a catastrophic brain bleed and now is in a group home/hospice. I am trying to manage my Mom's life from 2,000 miles away though I am making my third trip out there since May in 2 weeks. I have hired a caregiver ( we are on the third one) to help my Mom around the house and drive her where she needs to go. I also went to her bank and got all the paperwork notarized to be on their bank account to see what's happening on line and to pay bills. My Mom's short term and long term memory are declining. She didn't remember when my birthday was or my Dad's birthday who she has been with for 69 years. She calls multiple times a day, usually she is very upset about something ( and also confused). I thought when this first happened that she could move in with my spouse and I when my Dad passes but honestly I think she is beyond what I can cope with. I feel very guilty about that and I also feel very overwhelmed every day. I have started seeing a therapist. She really needs someone with her everyday but will only agree to three times a week at this point. My brother is going to tell her this week that she must have daily help to stay safe and in her home. I feel heartbroken, like my heart is torn in half. I don't want to do anything against her will but I want her to be safe. Feedback welcome

blacksparky · August 23

Unfortunately it looks like you and your brother are at the point where you just need to stand firm and make the decisions that’s best for her. Talk to an elder law attorney regarding getting a POA if you can. We all feel guilty from time to time but need to make decisions that keep our loved ones safe. Not sure of your financial situation but maybe assisted living facility might work. Welcome to the group.

ARIL · August 23

I am sorry you are facing this situation. It is very hard. It’s good that you and your brother are in general agreement, though; some people on this forum have enormous stress and additional complications from sibling conflict.

I am mostly writing in solidarity, and because much of what you say feels familiar. I dealt with long-distance caregiving for several years, including the travel and the constant effort to manage by phone. We had four different part-time in-home caregivers; that was a stop-gap but much better than life without them. My father is now living in my community—although in a care facility, not with me. Some relatives—who are never here—are critical of that choice, but they are wrong. My dad needs a level of care I could not possibly provide even if I quit my job. Things are more or less stable for now.

You will want to get all the legal matters sorted if they are not already: my first step was DPOA. An elder law attorney is best—although to be honest, my father was in a rural area where that specialty was not available, so I worked with a generalist attorney at that stage. I saw a specialist when I moved my dad to a new state; the original DPOA is still all I have—and it has worked fine—but I did feel the need to have his will vetted in the new state. (It was fine too.)

Take a breath, and recognize that this situation will evolve. Top priorities now are your dad’s care (which seems sorted) and your mother’s safety (which does not). This is all hard, and you and your brother will do the best you can at each point. Your best is plenty good enough; your parents are fortunate you are so committed to them. I empathize. You are walking a hard road. But people here do understand.

l7pla1w2 · August 23

First of all, welcome to the discussion group and sorry you need to be here. And sorry that you're dealing with the gradual loss of both parents at the same time.

Since this was your first post, I'll trot out some of the things people usually suggest as part of your education.

See an eldercare attorney, if possible, to make sure you have the necessary legal framework to care for your Mom.
Read "The 36-Hour Day", which will help you to know what to expect down the road.
If you go to Home > Groups on this website, you'll find two groups that are relevant. One is New Caregiver Help. The other is Caring for a parent.
Make use of the Alzheimer's 24/7 hotline: 800-272-3900.

You are fortunate that you and your brother are both concerned for your Mom and generally agree on how to care for her. You didn't say how far away your brother lives from you or your parents.

Everybody here recognizes the symptoms of your Mom's progressive dementia. In my opinion, managing her care by part-time aides long distance will become untenable. She will reach a stage where it is not safe for her to be in the house alone. She may well resist in-home help and say she's fine by herself. She isn't. If it isn't impaired now, her judgment will become impaired in the future.

I'll let others chime in with first steps. Always know that this discussion group is a fabulous resource of warm, empathetic, non-judgmental, knowledgeable people who can help you and provide a safe space to vent.

CindyBum · August 23

From my perspective, the hardest part of this whole damn journey is acceptance of the reality before you. I still struggle with it 6 years in. It's hardest, because it forces all of us to have to make heartbreakingly difficult decisions about things we've never wanted to have to decide. I never wanted my DW in assisted living, for instance, but I'm trying so hard to prepare for that eventuality.

It's so hard to get up and over the bad feelings most of us have about going into assisted living or memory care, but the reality is for someone with dementia….they will be safer and better cared for there. You and your brother will get peace of mind you weren't expected in making that decision.

This is your journey and I may be speaking out of turn, but doing it with caregivers, even for me right her with my DW, will not be feasible at some point. Best of luck to you.

SDianeL · August 23

Welcome. So sorry about your parents. You won't be going against your Mom's wishes when you make decisions because she no longer has the capacity to reason. As I learn from this group, "you can't reason with someone whose reasoner is broken." She also has anosognosia which is the term when someone with dementia does not realize they have the condition. It is a lack of self-awareness of their illness and its effects, and it differs from simple denial, as the person genuinely lacks insight into their condition. So you and your brother must step up and make the difficult decisions on her behalf to keep her safe and well cared for. As others have already posted, she requires 24/7 care. Managing that care from out of state is difficult if not impossible. I would immediately look for a memory care facility near you or near your brother so you can monitor her care and visit often. The difference between an assisted living facility and memory care facility is that the memory care facility is locked so she can't leave and wander and they provide the 24/7 care she needs vs just checking in on her periodically. Some assisted living facilities will allow her to "age in place" so that is a question you would want to ask. Please don't delay. Come here often for info and support. This group helped me more than anything. We all understand what you are going through. You are not alone. 💜

psg712 · August 24

Have you had an opportunity to go spend a week or two with your mom in her home? I mean 24/7 without outside help. That was super enlightening for me, and i had good friends who were local to mom and kept me informed. But nothing was as eye opening as watching her in person as she struggled to handle daily life tasks safely.

At some point she will need 24/7 supervision. The question is where? In your home or your brother's? Or in a facility? If you decide for a facility, please bring her close to your home. The move is difficult but overseeing her care in a facility out of state is nearly impossible. You may not be able to keep her happy, but you can do a lot to keep her safe.

Quilting brings calm · August 25

You’ve gotten good advice here

It’s likely that your mom has had issues for a while now but that your Dad was ‘scaffolding’ her. That means he was taking care of things and supporting her well enough that people didn’t notice her decline. It’s common and posters here have mentioned their surprise when they realize it in their own family.

Being long distance when your dad was scaffolding her also hid her decline. I can tell you that my mom/step-dad lived several states away and it was a shock to me when I started getting calls asking us to make emergency trips there because mom was having ‘troubles’ dealing with life.

Mom rapidly declining cognitively

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