Inappropriate In Public Stage

Unbreak4ble

It hadn’t occurred to me before, but now I’m wanting to go out less. My wife has started clutching at her clothes and exposing her middle. She approaches strangers and tries to talk to them. She tries to get into other people’s cars or fights with her reflection in their windows. Wanders off in stores; she’s good at it and I think does it on purpose. It’s not the embarrassment that bothers me, people are generally understanding.

But besides that, she doesn’t want to be anywhere. Not even at home, but at least there she can act out any way she wants. What does she want to do at home? Pour dish soap in her shoes, take things apart, hide objects around the house, take clothes off hangars, take food out of the fridge, flood the bathroom, break the mini blinds... I’m sure y’all could add to the list.

I guess her most comfortable place to be is the passenger seat in our car, but gas is expensive.

Daycares are out of the question as are friend’s and family’s homes. She’s past that stage.

We used to go to high school games or events and walk around, but that lasts minutes before she gets anxious. She takes interest in nothing.

Any insights?

M1

Breaks my heart to hear it, I wish I could offer more. Surreal I'm sure. You are brave to keep trying and I do not envy you. Sad to say, but memory care was the first thing that came to my mind. That is a reflection of my own situation more than anything I guess. Is she on any medications to keep her calm or to curb the combativeness?

Iris L.

She is not doing these things on purpose, her brain connections are disrupting. Medications may help. Outside trips should be limited.

Unbreak4ble

The Namzaric that she’s been taking for years are too hard for her to swallow. I quit trying months ago, but it didn’t seem to accelerate the decline. I never understood what they were good for anyway.

She takes a real low dose of Risperdone. I guess that was because of the hallucinations and anxiety. But really, she’s rather low key for the most part. She’s been resisting my care more. I used to be able to act like I was in distress and that would get her cooperate, but that doesn’t work anymore.

I guess it’s just another stage to adapt to. They’re getting harder to predict, like her not wanting to get in the car, so she acts like she can’t figure out which foot to raise first. Or she won’t scooch over. So we just stay home.

I’ll try a home care nurse first. I fall asleep on the couch during some of her shenanigans. I’ve slowly removed most of our possessions. It’s surprising how much materialism is unnecessary.

Another Day

Unbreak4ble - Copied this from drugs.com Namzaric:

To make swallowing easier, you may open the capsule and sprinkle the medicine into a spoonful of applesauce. Swallow right away without chewing. Do not save the mixture for later use.

I reread what all her behaviors are.....sounds frightening actually. She's not doing these things on purpose though or just to be annoying to you. She has no clue what she's doing or that she's behaving oddly. That was the hardest thing for me to come to grips with with my DH. You definitely need to have a discussion with her doctor. Make a detailed list of all of your concerns before you go.

Have you begun researching memory care facilities?

Are you able to calm her with peaceful music. This is one I use all of the time and it works.

I also am very particular with our diet, have noticed differences with or without certain foods. I keep caffeine and sugar to a minimum, junk food is rarely in our home, but I can get mileage out of having ice cream cones available in certain situations.

Another thing that comes to mind is do you recognize anything that triggers her behaviors? With my DH I have to be careful what he is influenced by such as television programs, who he talks with on the phone, what he's listening to on the computer...like podcasts. His agitation levels go through the roof when one person in particular calls. Unfortunately this person is a relative. I admit though that I've just missed picking up the phone more than once when I see that name on Caller ID.

What if you took her for a walk? It would be just the two of you. Exercise, fresh air and sunshine would do you both good. DH wants to be outside playing in the dirt. He's got a little vegetable garden of sorts (bags and containers) going and he loves watering the new plantings in the yard.

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Battlebuddy

I feel for you very much because this is a hard stage to be in. I remember it well . We would go to Target and my husband would stop people because he thought he knew them. He would put all manner of things in the cart. We would walk on the local paths around a lake and my DH would also stop people who were trying to exercise.

I could never figure out how to fix it . We began to go to drive throughs for our “ outings” What finally changed things is DH lost his ability to get in and out of the car. I’m sorry to have to say this but your wife is not pretending. She is loosing the ability to understand the sequences to get in and out of a vehicle.

My advice is to try and enjoy your trips out because once she looses the car ability you will be house bound

Unbreak4ble

I remember why I stopped interacting on this site. When I don’t have people that can relate to me, time just goes by without me having to think. When I think, I figure things out. When I figure things out I get cynical and then sad.

We used to go on walks. Now we just pace together very short distances. She can’t talk to her sisters on the phone because she figured out a while ago that she doesn’t make any sense. Now the phone is a trigger.

What I see now is that her boredom level has increased as she loses interest in everything. I would have needed a base of people who loved her; maybe not like I do, but enough to sacrifice just moments of their lives during the week.

What I’m sad about is that I tried to stave this off years ago. The dementia community is so spread out that it can’t produce solutions to problems.

So years ago I tried the church. I have a firm belief in God, but I’ve lost faith in the church. I tried talking to the pastor here in our small town and educate him about what it’s like to care for my wife. I told him that people literally need to be trained. But then I realized that people need to be willing. That was my insurmountable obstacle. I’ve never been able to conquer cliques. I’ve never had power or authority in a church, so my observations have never been considered.

I think people expect everyone to be self sufficient, so I try to be.

What makes me sad also, is that We could have contributed back into their lives as well.

I could get deeper into this, but not on a public site. It’s too personal.

Battlebuddy

That was a very insightful post. And all very true. Sometimes we are better off plodding along without thinking too much or seeing too far down the road.

I think you are seeing that you need help keeping wife “ entertained” . It’s a tough one and the day can be so long with someone who is not interested in much.

I thought what you said about the church . I’ve given this a lot of thought. There is no ministry that exists for people with Dementia . And there would need to be some training on how to interact . And so many people with Dementia would be in different stages presenting in differing ways.

Still I think about starting a caregivers ministry once I’m done caregiving. It would require going back into the “ valley” once you had made it out. Hard. I think how that ministry would work. But it always involves me showing up at a caregivers house with a basket. In my musings/ fantasy the basket contains : 23 Psalm print, chocolate, baby wipes ( one can never have enough) and at least 2 or 3 grub hub gift cards for delivered food. Just sitting , talking and praying with them. Letting them know someone cares how the care giving was going.

I hope I have enough left in me to do at least that someday

Unbreak4ble

Thank you Battlebuddy!

Not to the exclusion of the other posts, but I especially appreciated yours.

Yes, the biggest struggle now is keeping my wife engaged. I can’t even consider memory care because they wouldn’t pay attention to her every minute. Couldn’t pay them enough.

Along with that, I have accepted my isolation... until the past couple of weeks. One reason is because I play cards when my wife is asleep and lately it just doesn’t bring me any satisfaction any more.

I see the need for an advocate, which goes along with your vision.

I’m thinking about starting a sub-group of people who enjoy creativity. People who would take your ideas and brainstorm with you. There is no risk, you could always bow out; but hopefully it could be something that could create some connections with people who enjoy thinking outside the box.

Not limiting it to dementia, but interests that would encourage personal morale. For instance I enjoy writing, photography and photoshopping.

I don’t know if I’m rational anymore. I miss conversation. Nobody likes to email or text with me and it’s the only form of communication I have. Which is probably why I like to write.

Why a private group? I posted a poem on the old site which got a hundred views but no comments. Or reasons why they didn’t like it. Public space is scary for me.

Battlebuddy? Could you respond if you see this?

Battlebuddy

I don’t personally chat with others outside of this public group but I know others do. I think that a subgroup where people could post creative things( writing , photography , poems etc. ) could be interesting. I would like to see it stay public but that’s me.

Unbreak4ble

I appreciate your opinion. I get discouraged too easily. It was a thought.

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Unbreak4ble

i appreciate it Victoria, but the kind of care I’m talking about is being there for her every minute. Besides, she wouldn’t be able to manage the bus trip on field trips.!She can’t learn how to paint abstract, fold clothes or play in the dirt, much less take interest in a museum. I struggle to get her to notice dogs. And back in the day, the only thing that could get her to stop talking was seeing a dog in a neighboring car.

What she needs is somebody to pay attention when she wants to cry and can’t make tears, looks around the room and can’t figure anything out or picks something up and wants to put it in her mouth.

I’ve kept her from freaking out without significant medication for six years, I couldn’t throw that all away. I know they medicate in those places. I’ve seen it all; rehab centers , retirement homes, assisted living, even state run mental facilities.

If there were one time that she walked aimlessly down a hallway wringing her hands and asking to go home, without comfort, and I could have done something, I wouldn’t be able to live with myself. And I’ve seen that.

I’m not too proud to say it could never happen; but there would be reasons I don’t know about yet.

M1

Unbreakable, do you have a backup plan for your wife if something happened to you? Just a thought. You are obviously very devoted, but it sounds like your own health may be at risk. One other thought--you said she's on a low dose of Risperdal, have you discussed with her doc whether she could tolerate an increase and whether it would help with her anxiety? There's a pretty wide dosing margin. It might help both of you. I understand that you don't want her overmedicated or medicated just for the caregivers' benefit, but if it would relieve her anxiety that is driving the behaviors, it might improve her quality of life too. It sounds like the current situation is stressful for both of you.

Iris L.

You might think about getting her a stuffed or anamatronic/robotic dog, since she likes dogs. Many PWDs have these.

Unbreak4ble

M1, I’ve thought long and hard about it. And for many years.

Should I become incapacitated, we have two very capable sons that would step up. They don’t have the commitment that I do, which is fine. They didn’t take the vows, I did. If they chose an institution, both my wife and I would be fine with that. She also wouldn’t want to burden our children, no matter how it affected us. Those are pre-dementia decisions we’ve made. At least before the dementia overtook her like it is now.

Iris, that sounds really interesting. As it is, she’s broken or taken apart most everything that I haven’t given away. She’s even started taking pictures and things off the wall. I leave things like stuffed animals, pillows and knick knacks that don’t break for her to move around. A lot of times they wind up in cabinets or drawers. I’m going to look that up. I’ve seen robotic monkeys, but they looked annoying.

harshedbuzz

Unbreak4le-

My one aunt was very similar to the way you describe this stage for quite some time.

Some strategies that helped-

She had a couple of onesie outfits which made it impossible for her to expose herself while grabbing at her clothes. They zip up the back and can be useful for those dabbling in nudism or compelled to strip off incontinence wear. Buck and Buck is one company that sells these outfits.

Back-Zip Jumpsuits - Jumpsuits - Women's Clothing Adaptive Clothing for Seniors, Disabled & Elderly Care (buckandbuck.com)

It sounds like your life would be easier if you baby-proofed it. My cousin put magnetic locks on the cabinets in the kitchen to keep mom from messing in them. They were easy to install and opened with a small magnetic key. On the hall closet, used bifold door locks.

My cousin put locks on all the interior doors (except the powder room which she had stripped bare) to keep her mom from trashing rooms when bored. A friend's mom was able to keep her mom out of certain rooms by laying a small black doormat at the entrance to the room. Because of deficits in visual processing, her mom interpreted the black space as a hole and stayed away. If you wife is misidentifying people in car windows, this might work for her.

Have you tried playing music for her. Many PWD respond well to music from their teens as a way to settle. The suggestion of the robotic dog/cat Iris made is an excellent thing to try. My dad's MCF had them. Whenever we visited my mom would play with one; they're weirdly compelling. They're interactive and respond to the person playing with them. My friend with the doormats borrowed one form our local library that was such a hit that she bought mom one of her own. Her mom had been quite the disciplinarian with the real cats which avoided her so this was a great solution.

Lifelike Robotic Pets for Seniors - Joy for All – Ageless Innovation LLC

HB

Iris L.

Caregivers have to stop thinking about how they would react in a situation. The PWD's brain is damaged, and they think a different way. I used to think it was disrespectful to give an older woman a baby doll to carry around, but many PWDs seem to be comforted by carrying around a baby doll, and loving it as if it were a real baby. I learned this from reading threads. The same for the robotic dogs and cats. If it is calming, but eventually breaks, get another one. Some PWDs need something to do with their hands. BTW, look into a "fidget blanket"--they can be made or bought online. All these methods, medications, cabinet locks, and robotic pets can be attempted. You don't know what will work until you try. Nothing is definite.

Iris

Unbreak4ble

Man, just as I was about to stop checking this site I’m getting some really good ideas.

The more things I get rid of, the more exploring she does to find new things to play with. I really like the idea of magnetic locks. That way she wouldn’t see or understand how they open. She would just be unable to open them. She’s already fine with being locked out of the bathroom. (She flooded it 2 1/2 times.)

I had been thinking that dolls would be patronizing, now I’m not so sure. She is totally fine with diapers and I never thought I’d be able to get away with that. Of course the downside is that she doesn’t give me cues anymore, she just goes.

But yes, music has always been a life saver. We have YouTube on our TV and phone. She used to sing amazingly well. In high school she was Dorothy in The Wizard of Oz. She won a drama scholarship that she didn’t take advantage of but she still performed publicly a lot. She had perfect intonation, but she was raised Church of Christ so she lacked the best of rhythm. She would get thumped if she swayed in church because it was too much like dancing. At a different church (that used musical instruments) the music director thought he scored a jackpot when he heard her. He didn’t know how long I worked with her with the accompaniment tapes that she used. Spoiler alert: she would practice for months before a performance. My Dad was in the symphony and a choir director so I was able to coach her. Needless to say the music director was quite dumbfounded.