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Am I in denial about my mom's needs/living situation?
Posted: Monday, January 20, 2020 1:03 PM
Joined: 11/2/2019
Posts: 46

My mom is just crossing over into the mid stages. A few months ago we tried to move her to independent living and it was a disaster. She couldn't learn the building and was constantly lost and confused. We decided to move her back home and bring in a caregiver 3x a week to cook food, give meds, and do light housekeeping. At the time that was all she needed and things seem to be ok still, but I worry that I'm not seeing red flags because I can't be over at her house very often. Once a week I drive her to church and I'll usually circle back and do a walk through to check for any red flags. So far nothing, other than once I saw she had tried to microwave styrofoam. 

Her hygiene seems ok, I make sure she eats daily, she hasn't gotten hurt. But some of her symptoms are getting worse. Her written communication is not very good. She had her first delusion that I've been aware of a few weeks ago. 

I guess my question is...should we keep as we are since it seems to be working ok and is what she wants? What should I be looking for in terms of signs it's time to go to AL? She doesn't even think she needs the caregiver and given her last experience in independent living she'd fight tooth and nail not to move again, so I want to make sure it's the right choice when that time comes. Any insight is appreciated!

Rescue mom
Posted: Monday, January 20, 2020 2:31 PM
Joined: 10/12/2018
Posts: 1595

If she got lost in independent living, and is having delusions, and has tried to microwave styrofoam, you are right. She should not have been in independent living, she was already beyond that. If she’s having delusions, and unable to operate microwaves, and getting lost, she is an accident waiting to happen. And she will not know what to do when it does.

IMHO she sounds ready for a big move. They rarely agree, or want to, there are lots of “tricks” and fiblets people here have used to get them there. The boards have lots of threads about how people have gotten their unwilling LOs into MC or AL (which usually does not work well for people who are not self-directed, or who need to be told when to take meds). But from what you’re saying, she needs to be there. You are not going to be able to talk her into it, (unless she’s one in a million); logic doesn’t mean anything now.

Are you watching her finances? They are also vulnerable to scammers, or unable to pay bills, or spending thousands online, etc., at this point. If you have a caregiver in 3x a week, the caregiver may well be taking care of many issues you will not see in a short visit.

Posted: Monday, January 20, 2020 3:36 PM
Joined: 6/12/2016
Posts: 1099

I don't think you are in denial about her condition. If you were to spend 48 hours straight with her, you'd be able to better understand the problems she is dealing with. Is it possible for you to spend that amount of time with her!

Rescue Mom was spot on with her reply. 

Posted: Monday, January 20, 2020 3:36 PM
Joined: 2/3/2018
Posts: 854

I agree with Rescue, Mrs, it's time to start planning for full-time care. If there are resources available to keep her in her home that's great! My sister and I split care and also have a 4-day a week live-in to keep Mom in her home.

But, if not, I recommend you two start looking for places that she can feel comfortable with, and if you decide on assisted living first, try and choose a place that she will eventually be able to move to their memory care when the time comes to avoid another big upheaval.

You and your mom may have another week before she gets confused and lost in her own neighborhood, or another 6 months, but it is on the horizon if left to her own devices, so start planning the next step as soon as you can.

Good luck!

Posted: Tuesday, January 21, 2020 4:27 AM
Joined: 3/6/2017
Posts: 2315

I agree with the others.

It's critical to spend a couple of 24 hour cycles to get a sense of how she functions through the day, evenings and overnights. A dear friend's mom had early stage dementia; DF's mom lived independently a few blocks away and spent every afternoon/evening with her. Planning for the future, DF decided to sell both their homes and build one with in-law quarters for mom. She moved mom in with her to stage mom's house and was gobsmacked by her mom's behavior in the late evenings and overnights. My friend wasn't in denial- she just didn't know how impaired her mom was given that she had strong tendency to go into hostess mode. I had a similar experience when I visited my parents in Florida when my mom was in the hospital- dad seemed distant and self absorbed early in the day but was confused and delusional by dinnertime.

The situation as you describe it is not going to work for long and you may not get a warning before she lets a stranger in the house, starts a fire, overdoses on medication because she forgot she already took it, gives her credit card information to a scammer over the phone or wanders away. There was a story locally a few years ago about a pair of daughters who were caring for their mom in "early stages" at her home. Daughter 1 was an RN who worked 11-7; she got to mom's in the am and oversaw showers, dressing, morning meds and prepared breakfast and lunch for later. Daughter 2 was a teacher who was able to collect mom by 3pm and bring her home for dinner and a visit before returning mom home and helping her get ready for bed around 9pm. They split weekends- one did church and brunch out, the other did shopping, hair dresser and lunch out. Things worked really well until they didn't. Mom got up one night and decided to shower again. For some reason, she went outside clad only in a towel in the dead of winter. A dogwalker found her body covered in a dusting of snow the next morning.
King Boo
Posted: Tuesday, January 21, 2020 7:35 AM
Joined: 1/9/2012
Posts: 3326

This time at home is a brief breather whilst you keep your fingers crossed that nothing goes wrong while you work very, very hard to figure out if you can have someone with her all day, or find a Memory Care that is appropriate.

Not only is she not able to live in IL, it is likely that your typical AL is too low a level of care as well.  People that get confused in hallways when in AL typically move to MC - unless it is a high acuity AL where their primary residents are dementia early - early mid stage.

You are spending your energy 'hoping' that a lower level of care works, and it won't without exposing Mom to significant risk, or at least ostracization by fellow higher functioning residents.   Key point - staff that work at AL are used to providing supportive services, but NOT safety measures and monitering for cognitively impaired dementia patients.

It's like putting a cancer patient on a cardiac wing and hoping things turn out, when staff do not have the specialty skill set to help that disorder.

This is a breather space only.  Lots of work to do.  Interview and find reliable staff for daytime hours, or send her to adult day care or find an appropriate Memory Care or very high acuity AL with MC and nursing home attached.

Don't torment yourself with the old 'what she wants' argument.  Care needs must drive the decision making.  She doesn't want to go to the hospital, or the doctor, etc doesn't mean she doesn't have to go.

Rescue mom
Posted: Tuesday, January 21, 2020 8:47 AM
Joined: 10/12/2018
Posts: 1595

Pretty soon—actually I think now, but that’s just IMO—you are going to have to have more help in home, for longer hours. Delusions can be very dangerous for her and others. At-home help means finding people, and dealing with no-shows, honesty, etc. Plus super-expensive. Unless you have lots of family nearby who do it.

Re: AL and MC. This is probably over-simplified, but maybe the general idea will help: 

AL works best when the person knows they need help, and will ask and/or accept help that May be provided, usually when arranged by someone else in advance. But in general, it’s support that usually depends on the person knowing they need help.

MC is for people who don’t know, or can’t remember, that they need to do necessary basic functions, like take meds, bathe, get to the dining area, go to activities, etc. These clients cannot remember they need to do these things.

For example, a person who knows they need a shower, but needs help to physically do it, that’s more like most ALs. A person who does not remember (or want) to bathe (or take meds, etc) and does not know to ask for help, that’s MC.