My sister has dementia/ Alzheimer’s I am her guardian

Midlorich

I’ve been her guardian for 20 years, and recently, she has developed dementia/ Alzheimer’s and has become increasingly agitated. On top of this, she is special needs development mentally disabled, an IQ of 57.
I work a few hours a day, and need resources to help me with day to day activities.
Is there a system, that I can install on my front door so she can’t go into the neighborhood to take a walk? I’m afraid she will get lost? My back doors lead to the backyard, which is locked and she can’t leave. I changed the lock system on the front door, to make it easier for local emergency services to be able to get into the house in an emergency. I put a Knox Box on the house.

M1

welcome to the forum. Is she by herself during the day while you work? Hope not, as that doesn't sound like a safe situation.

If she is a special needs adult, is she eligible for state services through the Department of Intellectual and Developmental Disabilities? I know there are usually long wait lists, but she may be eligible for day programs or even housing.

Some developmental disabilities (Downs syndrome for instance) carry a very high risk of early dementia. There used to be a poster from Arizona (screen name was cobalt) who posted about her son, but you are in a small minority probably among the posters here. However, there are at least two regular posters who have special needs kids on the autism spectrum.

Your sister is lucky to have you in her corner.

MN Chickadee

Do you live in an area where there are adult day programs? Many areas would have them, both through agencies that serve people with developmental disabilities and some in senior care settings for dementia. These programs tend to be relatively affordable and they entertain your PWD for a few hours during the day so you can work or have respite. I would add locks up high, many PWD don't see them or know how to operate them and alarms so you know if she leaves. There are also tech devices you could investigate, such as Angel Sense where you would get an alert if she left boundaries you designated around the property, or GPS tracking devices like "Tile" that are small enough to put on a shoe or pocket so you could always see her location on your smart phone. These only works if she wears the pendant or device though. Usually these are very short term fixes, because the PWD can find trouble in other ways around the house at that stage. The kitchen, bath, cabinets, tools, medicine cabinet etc can all be safety hazards even if they stay in the house. It sounds like you probably need to find some care for her while you work. You could also call your local agency on aging, most counties have them. They can help find resources in your area. Also the free Alz Asooc hotline to find area resources at 1-800-272-3900. If her agitation is getting out of hand speak with her doctor, there are medications that may help.

housefinch

I don’t know how every state works, but your sister should qualify for some benefits because of her IQ. You might call your local county ARC branch and ask if they have someone who can walk you through the process. An adult with that level IQ typically wouldn’t have the executive functioning capacity to live alone safely without dementia, I don’t think. Many communities have adult day programs for developmentally disabled adults. I don’t know what happens when someone gets dementia, but dementia is very common for example in adults over a certain age with Down Syndrome. I wish I knew resources better, but she should qualify for support, I would think. (I’m a pediatrician and have a daughter with autism and intellectual disability who is still a child).

harshedbuzz

@Midlorich

Hi and welcome.

It doesn't sound like she is safe at home alone anymore. One thing to consider is that the cognitive changes associated with MCI and dementia result in the loss of points on an IQ scale. At MCI, that loss is already 8-10 points and it will continue to grow. She's going to need a higher level of supervision than she did previously.

I agree with the others that a day program is likely the answer here if you can find one. I am an ASD parent and participate in an online local support group and know that many parents of adults with ASD/IDD are struggling to actually get into the programs for which their children have been qualified because of post-COVID staffing issues. It's a nightmare. My group is state specific, so it wouldn't be useful for you unless you happen to be in PA. You might reach out to your county ARC for help. Most people I know in your position have been assigned a services coordinator who can help come up with a plan-- do you currently have one?

There was a sister @Pam14 here when I first came who was caregiver for her dear sister with Alzheimer's and DS. She mentioned Facebook groups that offer support for families living with both. I don't know if that's your situation or if the groups would be welcoming if it's not.

You've already taken some robust measures to keep her safe, but she is going to need human supervision to be safe. This is a bitter pill for all of us at some point and sadly something you will likely face sooner rather than later. In addition to the Know Box, you and your sister should wear medical alert type IDs. Her in case she does somehow elope and you in case you turn up in a hospital unconscious alerting first responders about your sister.

My mom swore my dad was OK alone for a few hours. I let this slide until the day she asked me to stay at the house while her new HVAC was being installed. She didn't trust dad not to interfere with the techs-- he was hyper focused on converting the small utility closet into a Jack'n'Jill suite for when the grandkids come (they were in their 20s and 30s at the time) and wanted the unit elsewhere. During the install the smoke detector went off from welding a line. The tech yelled down to explain this, so I knew what was going on. After about 30 seconds, dad asked me what the dreadful noise was. I explained it. Another 30 seconds went by and he slowly stood up and told me he had to go tell my mother. In an actual fire, he would have perished. At the time, dad was very verbal, continent, ambulatory and yet he didn't know the fire safety basics my kid learned in preschool.

HB