My 20yo son w/ dementia wanders. I'm a busy mom/caretaker. Could I get experienced advice?

[ramp1234]

I care for my son who was diagnosed before I took him in, he is currently 20. I'm his mom and caretaker, single with no insurance. Currently starting classes to be able to help him and people like him and I've done some learning on my own. I would like advice or opinions from more experienced CTs.

My son wanders. He started a couple years ago, raringly. I would correct the behavior by bringing him home (usually it was him going in the yard/trying to go outside without me) and giving something to do. He stopped for a while, but it's started again and now it's to the point where he'll sneak off while I am sleeping or distracted. He walks down the sidewalk and through the neighborhood. Often will wander around yards or get into porches and sit in open garages or sit on swings. There's a specific neighbor he has been to, he lays or naps in their gazebo or tries going in their house to eat food.

I try paying attention closely but I am a single mom with a lot of work under short time periods plus cooking specific meals due to his food sensitivities and going to the bathroom/showering a lot due to my own incon and menstrual issues. At least once a day I will find him in the yard or walking down the street. I have to physically prompt ( I grab his arm and guide him somewhere else, or hold lightly and coax him until he follows me to the car or lets me walk him to the TV or to his computer or to eat). I stay up a bit anyway though eventually I do need sleep and he is on sleeping meds but sometimes wakes up at night. I lock our hallway door at night.

He does it even if I correct or explain. I will not restrain him if there are other options. I have tried talking to him but he won't keep conversations especially serious ones.He also has aspergers and is from an abusive situation. He refuses to talk to my mother who is a retired counselor about this and will not listen to anyone. I have put locks on the door, and he knows how to undo chain locks and switch locks. Today he created a distraction by waiting until I walked away and pouring his drink near my work computer and phone (which he knows I'm going to panic about and clean up asap), and then walked into our yard. I correct his behavior and give distraction, and he does have time outside, but it has no affect. He has gotten lost and will break down crying and people yell and make it worse. When I find him, he sometimes does not get in the car unless I physically prompt him or baby him. I told the neighbors about his condition and asked for some support, and they either ignore or they yell and scare him; two neighbors feed him (enforce this and endanger him) or harass him by jokingly calling out "come here".

[Sour Lemon]

This isn't really a "nursing" issue. As nurses, we do deal with confused and wandering patients, but in a more controlled environment.

Are you involved with social services in any way? Maybe your son needs to be placed somewhere more appropriate for his level of functioning/understanding.

In any case, it sounds like a tough situation. I do hope you're able to find some solution.

[Nunya, BSN]

I agree you need to get social services involved. I really don't know the best way to do that

[JKL33]

You need to seek evaluations through which proper medical/psych/legal advice can be rendered. If he does not have relationships with appropriate providers then seek these out right away (primary care provider, community mental health providers, social services).

We actually are not able to offer the kind of advice that you need; that would not be safe or appropriate. But it does sound like a tough situation and I wish you well in getting help ASAP.

[Nunya, BSN]

I do agree with Sour Lemon that he may need to be placed somewhere that can monitor/assist him more than you can. That's a hard decision I know, but it might be the safest thing, especially as he's refusing assistance. And while we technically can't "advise" you what to do, it sounds like you're at wit's end and I think it's appropriate that you go to fellow health care professionals to ask for help. That's why we all became nurses and CNAs in the first place, right?

[NRSKarenRN, BSN, RN]

Thanks for sharing your concerns.

1. Have you discussed your concerns with his medical provider-- often they are aware of resources in your community.

2. Because he is disabled prior to age 21, he is eligible for Medicare and possibly Medicaid (depending on your state's income limits). That should help with medical care and some income for him.

3. Check your states Home and Community Based Services:

Quote

Home and Community Based Services are also known as Waiver Funded Services or Waiver Programs. The name waiver comes from the fact that the federal government "waives" medical assistance rules for institutional care in order for Pennsylvania to use the funds for HCBS. HCBS provides for supports and services beyond those covered by the Medical Assistance (also referred to as Medicaid) program that enable a person to remain in a community setting rather than being admitted to a Long Term Care Facility. Currently the Department of Human Services administers 12 HCBS programs. Each HCBS program has its own eligibility requirements and services.

Due to his Dementia/ADD he should be eligible for the Adult Community Autism Program (ACAP) which can provide a personal care assistant for several hours/day. He can be appointed a case manger to help you decide how to deal with his behaviors and community resources available.

See Pennsylvania's list of available Home and Community Based Programs and their associated eligibility requirements:

http://www.dhs.pa.gov/citizens/healthcaremedicalassistance/homeandcommunitybasedservices/index.htm

HUGS to you.

[allnurses Admin Team]

Hello @ramp1234

You have received some good feedback.

As stated by JKL33, however, per the Terms of Service of the site you need to seek the proper medical/psych/legal advice from your sons' healthcare providers.

We wish you and your son well.