Psychosis from dementia and in-home care. Any advice?

Your mom needs a constant. She cannot handle change. When my Daddy was in a home and I would go visit, my visits would set off his anxiety. I needed to see him more than he needed to see me. So I had to limit my visits to twice a week. After my visits he would wander around and he was not a small man He was 6'2" and the caregivers were not that tall. To make a long story short I finally got him home but he was bed ridden by then however, I knew that was coming. I spent his final five days by his side and I would not trade it for a gazillion dollars. But my point is... taking her to her house is just not good for her. Keep her in a constant and that will keep her anxiety down.

Your Mom says she does not *want* a 'facility'.. (who ever does..) 😔 But her actions of needing a trusted person (ideally you) at all/most times indicate she *needs* a place she feels secure in.

Trying her home first seems reasonable as a plan A.
Plan B being memory care.

Lakegirl1: Perhaps your mother DOES indeed require residence in a managed care facility irregardless of what she said.

One thing to remember is that with any cognitive illnesses such as you you have described with your mother, the patient thrives on routine and stability. Hence I suggest that it may help to decide on one place or the other and, enlist whatever help you need to create and maintain a schedule, routine and, a set of familiar caregivers to help you. Nothing will be perfect, and as with any cognitive decline or other illesses changes will be inevitable but , the more stable and routine the environment the safer the patient will feel and, the better for you. Best regards

Be careful, very careful of in home care. You will need a caregiver agreement and set mom up as an employer. All taxes and other withholdings must be paid. If not done correctly, then you have mom at risk of being ineligible for Medicaid. Without a contract and legal pay arrangements any money to caregiver will be considered a gift.

Look into care homes, they are often cheaper than large memory care facilities, better staff resident ratio, more home like.

I agree mom is at the stage that she should never be alone. You need to find a safe, feasible and legal solution, for her and yourself.

Providing live in care can be much more expensive and demanding than a good facility. And be careful, assisted living, at least in our place, does not provide much individual time with the person. You know her well and can anticipate many problems which may make her appear higher functioning than she actually is. Take yourself out of the equation when considering her functioning objectively. We all assume we can be there forever to care for a person. That isn't necessarily the case. How will they do without you? What will they need? It is a sad but necessary question to consider. I think it is most worrisome with cognitively challenged patients. Make arrangements for them in which you are a plus, not an absolute necessity.

Good Morning,

Has your mother been checked by a Geriatric Neuro-Psy doctor for Lewy Body Dementia?

Also I am a firm believer in "exercise" for everyone. My mother has an UpWalker Lite. It takes the edge off.

My mother, too, is too high functioning for Memory Care/Nursing Home and I am glad about that since it would break my heart and all the places are overworked, short-staffed and underpaid.

Mother attends a 4-hour per week morning respite session. I enrolled her in Speech and Physical Therapy. There is a fee for the facility, breakfast and lunch included an RN on duty at all times. The therapies are a co-pay through insurance. The ratio of care is 5:1. The staff are outstanding.

I have to be honest I think if my mother attended more than once a week she would back slide and start acting like the other attendees. It's sad because most of the people there have dementia and they had accomplished lives before the diagnosis.

I don't want my mother to start acting like one flew over the coo-coo's nest. So for our situation the (4) hours I can get the oil changed on the car, banking, etc. with peace of mind and mother is supervised.

My mother too had hallucinations, etc. She has Lewy Body and with the right medication she is able to walk around but could never live alone--can't do any of the tasks of daily living.

If you can find a "Geriatrician" neuro psy that may help and ask your local Church people to help out. When you go for a walk put a life line button on your Mom and also I highly recommend through your tv/phone/internet provider you can get a camera and a sensor on the door so should your mother leave a text will be sent to you with a photo.

Costs only $20 per month, well worth it.

You could start your mother with one morning a week. My mother is out of gas in the afternoon so the morning works for us. At the beginning it was like dropping off a little kid at school the first day but now she knows the routine.

I drive to and from because the bus they provide picks up others and my mother may have to use the bathroom. So I take her.

Good walking shoes, elastic waist pull on pants (Lands End) on sale all help.

I take Mom for a "tune-up" every (6) months at the Geriatrician...you have to keep on top of everything.

You are in my prayers!

I’m concerned that you estimate her at mental age 5 to 8 years old but think it’s okay to leave her alone. Since it wouldn’t be wise to leave a 5 to 8 year old alone, I don’t believe your mom should be left alone at any time. You should talk to her neuropsychologist about this. If you proceed to live-in care at her home, please understand that memory care provides a team of professionals to care for her, and that’s what it takes for someone with her issues. Care at her home will be managed by you and it would be hard to provide the level of care she’d get in a memory care facility. Plus you’d have to maintain her home. Live-in care at home sounds ideal but it’s actually awful for the one who manages it. I’ve done it multiple times. It wasn’t worth it.

Unless you want to be tied down to 24/7 care for your mother inside of your home, and be a slave to that, then you have no other choice but to place your mother in Memory Care AL. While I've never heard of an elder who said "Oh please DO send me to Memory Care AL, I'd love to go!", there are situations in life that oftentimes leave us with little to no choice. My mother lived in regular AL for 4 years until her mobility and dementia issues combined made her no longer able to stay in AL, and she had to transfer into their Memory Care building which housed 23 residents. She had moderate dementia at the time, and could be considered 'high functioning', yet some people have a vision of an elder needing to be drooling and incoherent to be 'ready' for Memory Care. That's not the case at all. You say your mother has the mental age of 5-8 year old, so that situation, in and of itself, is grounds for her being in Memory Care. There are elders in varying degrees of dementia who reside in MC, and the staff makes sure to socialize them according to ability. They won't put a very advanced dementia resident together at a table with a highly functioning resident, in other words. They try to group residents according to degree of disease. My mother did very well in Memory Care, and even made a few friends, inasmuch as a dementia patient can 'make friends' with another person. She ate meals with Carolyn every day, and the two of them schmoozed it up together, along with a couple of other women. When Carolyn died a few months before my mother did, mom didn't even realize she was gone; her dementia had advanced to THAT point by then.

So all that to say this: I and my mother had a good experience with the small private Memory Care AL she was in. It was 3 miles away and I and DH were able to visit her frequently, take her some Italian meals from her fave restaurant, or homemade meals I'd cooked from home, bring her gifts and new clothes with matching costume jewelry, snacks, etc. Her doctors came directly into the MC which made life MUCH easier, and that included blood tests, traveling dentists, ex-ray techs, the whole nine yards. All her meds were ordered for her by the PA and delivered directly to the MC; there are a TON of resources at MC that people don't take into account; it's like one-stop-shopping for the elder, with 24/7 caregivers and nurses on site. I firmly believe my mother's life was extended to 95 precisely BECAUSE she had that level of care and medical attention focused on her at the MC.

See what the doc has to say, but no matter how many meds she's on, none of them do much of anything but keep the patient calm as the disease worsens and progresses constantly. There comes a time when in home care becomes quite unmanageable for most people.

Best of luck, whatever you decide to do.

My mom was 78 when her dementia/anxiety/fear made it too hard for her to live at home, or with me.

She was absolutely too afraid and convinced of various bizarre scenarios to even have been able to handle Assisted Living.

Mom was one of the higher functioning residents at her MC when she moved in.

It is such a sad situation, no matter where our moms end up living. It’s worth grieving. You matter too, and caregiving has to work for everyone, as our friends here say.