When/How do you decide that visits do more harm than good?

John2.0.1

First it was the telephone. I've quit calling my mom as much as I used to because I think that it's more frustration than it's worth. She can't hold a conversation on the phone. I ask if she enjoyed her visit the day before from my son and daughter and she doesn't remember. I think it made her sad. And she can't answer simple questions or tell me anything that makes sense. More frustration.

Today my other son and I visited. She was just full of delusions.

Staff is stealing her candy. Mom it's in this drawer were you keep it. They must have stolen it and put it back just to trick me. I let it go.

They are late getting ready for Christmas. It's almost here. Mom, it's the end of June. Christmas isn't for months. When did they change the calendar. The calendar hasn't been changed. I think you've just lost track of the months. But my calendar over there says it's December. (There is no calendar in her room. She takes it off the wall and throws it out. 5 times. I've quit giving her new calendars)

Last night the people were holding me down on the floor and I called the firemen to get the people to let me go. Never happened. I let it go.

There are bugs all over my room. (there are no bugs). OK mom I'll ask them to vacuum them up. I didn't.

For the last week she's been sleeping in a different building. She only got back today. I let it go.

She wants a microwave to cook soup. Microwaves are not allowed in MC. She had one in the Assisted Living side but could never remember to press 100 Start and make it go. I told her that if she wants a snack warmed up she can ask the aids. She didn't like that.

She wants a pot to cook her soup in. But mom, you don't have a stove. If you want something cooked the aids will do it for you. She didn't like that.

They just put in that new road outside my window. It's been there for years. I said that's cool. But I think she could tell I didn't believe her.

As much as I try not to challenge her delusions I think she can tell when I don't believe her and she can tell that she's really losing it and it makes her sad.

Her lunch is at 12pm. She likes to get down there early. At 11:30, after an hour visit, I suggested that my son and I should go and I can take her down to the dining area. She changed her mind 3 times whether she wanted to go to the dining area or not after we got there. I finally left her in her room letting her know that when lunch time comes the aids will come get her. She wanted to know if I would be cooking the lunch. No mom. The cooks cook the lunch. I am not allowed to stay for lunch.

I just wonder if it's better for me to not try to visit once a week. She never remembers I visited anyway. And it seems she is always more sad when I leave than when I arrive.

Emily 123

Hi John,

Don't get discouraged...you should visit her, and there's a way to do it that will make it less stressful for you both, but you'll need to further understand how she's seeing things now, as it's not just her memory that's affected.  You will find great advice in this forum.

These helped me a lot as I adjusted to my 'new' and changing mom.:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Good advice here about the why & how of communicating with the person with dementia (the Teepa Snow series is excellent: 

 https://www.youtube.com/watch?v=ilickabmjww

https://www.youtube.com/watch?v=8OubTWj995Q

The series:

https://www.youtube.com/embed/videoseries?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

Best wishes,

Klgm326

Same, same, and same. It’s so hard not to “correct,” but at this point, it’s the “being there. She knows who I am and that’s enough. Trying to just listen and nodding my head. 

It’s hard! Many hugs!! 

Quilting brings calm

John 

You are going on vacation in a few weeks.  I suggest you keep your current visitation schedule until then.  When you come back, have a discussion with the staff.  See how she did while you were gone,  possibly reduce your visitation schedule then.  I know my aunt only went once a month at the end of my uncles’  stay because seeing her upset him.  He pictured his wife as she was when they were young, he didn’t recognize her as elderly. My cousin may have visited more. 

John2.0.1

Thanks I'll check the links.

I'm not actually planning to vacation until the end of August mainly because my wife is still in Canada since March 20 dealing with her own mom. I HOPE she can get her mom settled by mid August. The Covid lockdown in Ontario has been a nightmare trying to get stuff figured out for her mom.

Her Mom has different issues. But she's 93 and the biggest barrier is that she's nearly deaf and my wife can't get places to use a tablet with Voice to Text so that her mom can read what's being communicated. She can sort of lip read but with masks, that's impossible. So she just nods as if she understood but clearly did not.

I'll keep up my weekly visits to my mom on the weekend.

Jo C.

Hello John, please do t not give up your visitis with your mother. If weekly is too much; perhaps doing every other week for awhile?   This is the way you keep contact with her to determine how she is doing and also to assess how much the facility is meeting her needs and what might be sliding sideways that needs to be addressed before there is a crisis.  It is also about love and caring for another when they cannot meet OUR needs. She msut now depend on those in her family.  Dementia is not a disease with manners; you are her advocate and her primary caring protector .    It would  be good for your knowledge base to learn how to communicate and how SHE is seeing things that make it all seem so screwy.  She cannot help any of this, it is secondary to the damage within her brain.  If you look for jfkoc's Thread on this Forum re Teepa Snow, I have given the link re a complete teaching series of Teepa at no cost.  It would really give you a much better understanding of what is happening and how to understand communications better.

One of the things that can cause behavioral issues, is that of our Loved One (LO) having a "silent" urinary tract infection.  These UTIs are called "silent" because there is most often no complaints of pain or burning, but there will be  significant change in behaviors and/or cognition and/or function.  Best to have that ruled out.

Also, if your mother is being delusional, and it does sound as though your mother is delusion driven, and especially if those delusions are unpleasant for her, it would be best to rule out that UTI and for her to have an appt. with her dementia specialist if it is not a UTI causing the issues.  There are indeed medications that can quell delusions.  This is not an item for a primary care MD so much as it would be for a dementia specialist.  You do not want an error in prescribing less than appropriately.

It seems you are lookng for more out of those visits than your mother is capable of giving; it is not her fault.  From experience I know how frustrating it can be and how sad it can be.  Visits do not have to be lengthy; one can bring in a small treat, etc. to light up a few moments for the LO.  Asking her if she wants to go somewhere in the building is a question doomed to failure.   Please watch Teepa Snow and read about how to commuicate with someone with dementia, it will go a long way in evening things out.  If she is upset, rather than address her words; instead, address the FEELINGS behind the words and validate her feelings. "I am so sorry that happened, it must have felt terrible and been upsetting., I will try and help to not have that happen again."   Validate whatever feelings and then refocus her onto something else.  You get the idea.

Best not to challenge her or to argue with her, or to point out how wrong she is; she cannot process that.  She is no longer able to operate within our reality; we must enter hers.  If she wants a microwave or a ot, simply say, "I can understand why you want that; I will check into it tomorrow and see about getting that for you. "  Then refocus onto another topic or another dyamic. She will not remember that you said you would get that for her. It is okay to use fiblets; it is not a failure to do that; it is a kindness.  The "new" road; well, they sure built tha road fast, . . . . or; hey Mom, let's get some tea nd cookies . . . . or refocus her onto something else . . . "

This period will pass in time as her dementia progresses. It can indeed be tiring, and it may be that you need to take a couple of weeks "off," give yourself permission to do that before you change back again. And remember, that those patients who have routine visitors; staff is much more careful with and overall more attentive to matters.

Take good  care of you and know you are an exellcent advocate for your mother,

J.

John2.0.1

Weekly on the weekend is fine. It's what I can do within her schedule and mine. I work 9-5 and really can't skip out any more during the day on top of her telehealth appointments and other appointments that I have to take my 3 kids to. I skip out more than I already should during the work day. I'd visit in the evenings after he's had her dinner but dinner is at 5pm and she's already sundowning. She frequently goes to bed by 6:30pm. With her schedule, visits need to be from 10-11am or 1-3pm.

She has had 4 UTI tests in the last 3 months, 3 of the 4 were not just quick tests but cultures. I'm sure she'll have more but this is not a UTI thing. She's just declining.

I don't think that I'm looking for more out of the visits than I can expect. My main concern is that she seems to always get more depressed after a visit. I don't want visits to be depressing. Perhaps the links will help me to make the visits not make her depressed.

I know that I need to be in touch with her general state and visits are really the only way. The MC unit says she's doing wonderful but I can't completely trust that.

ladyzetta

Dear John,

Please continue your weekly visits. We never really know if our LOs know we are there or not, but I prefer to think our visits mean something to them. Maybe take her a container of warm soup for her to enjoy while you are there, and a extra one for her to keep in her room for later.

My DH was in MC and sometimes he thought I was one of the staff. I never stayed too long and I always took him for a walk in his wheelchair. If it was nice outside we went out and walked and if not I pushed him up and down the halls in the AL section. I usually brought him cookies or candy to eat during the walk. I also took our little dog and he loved to see her and so did everyone else. 

Like Jo said it is good to be there so you can see the care that your Mom is getting. And if she needs anything. 

My DH passed away a few years ago and I not only miss him I also miss all my new friends at MC. To me it became a family. 

Hugs Zetta   

John2.0.1

A few days ago my mom asked me to bring her some canned soups for snacks. (She never eats snacks) At the time she agreed that she would ask staff to warm it up for her because she doesn't have a stove or microwave. She appeared to fully understand - ask staff to warm it up for you. Yes . OK She's in MC.

I should never have remembered to bring her some cans of soup. She's all mean and nasty that she doesn't have a microwave. (She had one in AL but NEVER used it because she couldn't remember how) and she doesn't have a stove top (way too dangerous!). She did in AL but never used it because at the time she realized she'd only burn herself. And she could never get a hot bowl of soup from the kitchenettte to her place to eat without spilling it. Parksinson's

So she's all pissed off at me that she has some cans of soup but needs to ask staff to warm it for her.

Beating myself up for ever bringing her that soup. I need to make it disappear.

 Other things she frequently asks me to bring that I always "forget".

1: a stool to stand on in the bathroom (she can't stand)

2: Iron and Ironing board (she'd really hurt herself and they are banned)

3: Scissors (not allowed)

4: Other things that she's hurt herself on and are banned.

dayn2nite2

Is there some reason she’s in her room so much?  Your posts make it seem like that’s the case.  Does no one share rooms in her MC?  Is she not attending any activities other than meals?

Marta

John. Can you redefine the purpose of your visit?  It should not be to have a rational conversation with your mother. You are there to monitor her care. If you can learn to speak dementia and deflect all the delusions, you would be a lot less frustrated.

Emily 123

Sounds like you're on the right track with the 'forgetting'. 

Good luck with Operation Soup Removal. 

John2.0.1

She is actually out of her room most of the time doing activities. I was there today to do a telehealth appointment with her and her doctor, being her health care proxy and DPOA. As I was leaving, she asked about the soup.

There are a few double apartments, separate bedrooms, shared kitchenette, but there are bumps on the floor between carpeted bedroom and hardwood kitchen and another bump into the hall. The bumps are very very hard for her to get her wheelchair over. It wouldn't be good. Her room has no bumps at all.  In any case, she is with others in the common areas most of the time. 

John2.0.1

Sort of an aside, but she was in a different facility until march 2020 when we moved her from 90 minutes away to 10 minutes away. I've toured a lot of places and I find it amazing how few really consider design for someone in a wheelchair. Bumps to get over, sinks that are too high to reach from in a wheelchair, hooks too high. Doors to bedrooms that are not wheelchair friendly. Because when she is out she then has to turn around and pull while backing up.

Because she couldn't reach the doorknob to her room after exiting, my mom was closing the door by putting her fingers in the hinge side of the door to close it, risking breaking her fingers, until I got the place to put a handle on the opposite side from the doorknob that she could use to pull the door shut from outside.

Of the 6 places near enough to me, this was the best design but still serious flaws.