How long is it safe to leave someone with Stage 6 Moderately Severe Dementia alone?

spacedcities

Hi all, new to the forum, been supporting my mother diagnosed 5 years ago with Alzheimer's. Most of my support has been to help my father, the sole caregiver, take some breaks and figure out next steps, and to increase the contentedness my mother has and decrease her anxiety. I spent half of the last two years off and on visiting with them in Houston, but I live in New Orleans due to having a disability (DDD and sciatica), because I have access to Medicaid.

My mother's condition has progressed to the stage called Moderately Severe Dementia, I believe 6c on the FAST scale, she developed a yeast infection in part due to refusing to bathe independently, has had some occasional urinary incontinence, and her mobility is suffering as well. They have stairs at home.

I believe she shouldn't be left alone at this point. However, my father is in denial that it is unsafe to leave her alone for many hours, several times a week while he takes time for himself (that part is understandable to a degree) playing sports. When I called him out on this neglect, he became angry/hurt and refused to talk to me, and a month and a half later, has not changed his routine in any significant way.

What I am looking for here is people's experiences with LO's at that stage, or experience dealing with intransigent parents across state lines, or any resources that can prove that it is actually unsafe at this stage for them to be left alone for that long. If he won't listen to me, perhaps he might listen to something more official.

Thank you all, and my heart goes out to all of you for what you're going through.

-Alse C

ARIL

I am sorry for these very difficult challenges.

A person at that stage does not need to be left alone. Do you have DPOA for either or both of your parents? Are there HIPAA releases at the doctor? If not, your ability to act is limited, but not entirely absent. You could express your concerns to her PCP; even if there is no HIPAA waiver allowing them to give information to you, you can give information to them. You can also call their Area Agency on Aging to request information about local resources. You can call the Alzheimer’s Association’s 24/7 hotline for advice:
https://www.alz.org/help-support/resources/helpline

Would your father accept some in-home assistance? That could be a first step.

Yes, I have dealt with parental challenges across state lines. I know the depth of the worry. Thinking of you.

PS This area of the forum gets less traffic than the Caring for a Parent area. Posts there routinely get lots of responses even in the first day.

harshedbuzz

@spacedcities

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

I have had similar issues with my parents— both long distance when they were splitting their time between MD and FL and even once I moved them closer to me. In many respects, my mother, who was the caregiver, was more of a challenge for me than my dad who was a particularly nasty PWD.

It's pretty clear this is negligent given her disease progression; if a neighbor or family member were to report this to APS, your dad might lose control of the situation and find your mom assigned a court ordered professional guardian.

It might be useful to understand why your dad is doing this in order to appeal to him to make a better choice. With my mom, it was a combination of things that led to her leaving dad alone long after that was safe. Firstly, she had some pretty significant denial that he was as impaired as he was. He had a lot of cognitive reserve and was very verbal which played into her thinking his reasoning and executive function were better than they were. The other thing was that bringing in aides to be there for an emergency was not easy for her. Dad was unpleasant as his baseline; there would be hell to pay if he thought she was bringing in a "babysitter" for him. Cost was a factor as well; 7 years ago, an agency aide cost over $30/hour which meant 5-hours to have a salon visit and a little shopping was a quick $150. Agencies here have a 3-hour minimum assignment and a 15 hr./week minimum which added up quickly.

The straw that broke the camel's back for me was when mom had their HVAC replaced. She wanted me there to answer questions if the installers had any; she feared dad might go rogue so I stayed. During the install, they had to do a little soldering and they warned us that the smoke detectors would likely go off. When they did, dad sat for a long 30 seconds and asked me what the noise was. I said "smoke detector" thinking he'd recall the warning from 2 minutes prior (dumb, I know). He sat for another 30 seconds and then stood up, his phone sliding off his lap, and toddled off to find my mom to tell her. At no time did he take any of the steps a cognitively intact person would.

This freaked me out. In a real fire, dad would have died. I didn't have to worry about wandering or attempting to cook with him, but he wasn't safe at home. I told mom this practice was over and that should it happen again, I would obtain guardianship and place him in a MCF with the funds coming out of their joint accounts. She never did it again and decided that placement was a more cost-effective option for her than buying short breaks.

HB

harshedbuzz

I forgot to add, I used the "Ability Equivalents" from the Tam Cummings DBAT stages to drive home the point dad wasn't safe.

Stage 6 has an age/ability comparison to a 2-4 year old; you wouldn't leave a child that age home alone under any circumstances.

HB

https://www.tamcummings.com/tools/