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How to deal with our frustrations
ebs0303
Posted: Tuesday, November 5, 2019 8:44 AM
Joined: 11/5/2019
Posts: 2


Hi, I'm new to this board but not to dementia. My mother has dementia but we didn't realize how bad it was until my father passed away earlier this year. I'd say she is moderate. He was her primary caretaker, but he had his own medical issues, and retrospectively it was clear he was in over his head. Now that my wife and I (we're local) have assumed care for my mother, we moved her in to an assisted living facility that is convenient for us and her friends to see her. She is relatively content there but has expressed that she hopes to have her own apartment someday. But we've had a hard time dealing with very frustrating things she does, and I need some advice/guidance. I know its the dementia, but as I'm sure everyone knows, that doesn't necessarily make it any less frustrating.

Some examples - 

When we go out to a restaurant or other public area, my mother refuses to sit on the toilet when she goes to the bathroom, instead squatting, out of a hygeine concern. She also has poor posture and some balance issues secondary to a fall down the steps a few years ago. We've noticed multiple times that she will come out of the bathroom with either the front or back of her pants wet, clearly urine dribbled down her leg since her actual degree of squatting capability is minimal, and she refuses to sit. We've asked her to sit several times, explaining that she was urinating on her pants or down her leg, which likely outweighs her perceived hygeine concerns about the toilet seats. She barely acknowledges the wetness and has basically told us she is not going to sit on a public toilet. It's futile to have this conversation with her and we don't know how to approach the issue.

At her insistence (and because we thought it would be a good way to be able to get in touch with her), we got her a Jitterbug cell phone. We instructed her to charge it every night and take it with her whenever she leaves her room. In the last 5 months, I have never been able to reach her on this cell phone. She has friends who would like to take her to lunch occasionally, and sometimes this is spur of the moment if they are running errands nearby, but she is virtually unreachable and always forgets to take the cell phone with her. We've tried to coach her on this, but it doesnt help. Shes paying $30/mo for this but insists on keeping it even though she really doesnt get any use out of it. 

She's also incapable of checking caller ID or voicemail on her phone. We've been trying to keep up with her messages remotely and then relay to her who called when we speak to her (just about every day). When we ask when she spoke with Person X last, she says she has but can't tell us when and it seems obvious that she probably did not speak to them recently.... My parents (and mom) have had very good friends and several of the local ones have really been making a great effort to see her and talk to her regularly, but we're worried this will start to fade away at some point simply because its difficult to reach my mom, and its unclear to us how often she actually calls people back on her own. Its clear now to me that my dad was engineering her social calendar when he was alive, but we have 3 kids including a couple of teenagers and thats less feasible for us to stay on top of.  I've considered using a virtual assistant to maybe connect her with her friends - anyone try that before?

Anyway, I know this is all from the dementia, but still very frustrating to deal with and I would love to hear how other people have dealt with similar issues.

Thanks!


terei
Posted: Tuesday, November 5, 2019 8:54 AM
Joined: 5/16/2017
Posts: 446


Get rid of the cellphone + get a landline for her.  She is past being able to cognitively use + keep track of a phone
ebs0303
Posted: Tuesday, November 5, 2019 9:06 AM
Joined: 11/5/2019
Posts: 2


terei wrote:
Get rid of the cellphone + get a landline for her.  She is past being able to cognitively use + keep track of a phone
 
 

She has a landline for use in her room - usually takes her 1-3 tries til she picks it up, and most people try her on the landline.

 
Cell is supposed to be for when she leaves the room. 

SunnyBeBe
Posted: Tuesday, November 5, 2019 10:46 AM
Joined: 10/9/2014
Posts: 749


When hygiene is at risk and the PWD is not able to understand, then, there has to be oversight and assurance that proper care is given.  PWD often are not able to understand wearing wet pants is unhealthy, would ruin furniture car, etc.  So, they must have things managed for them.  It may be that public restrooms are not doable for her any longer. 

I'd stick with one landland phone and no messages.  She's shown she isn't cable of retrieving messages  any longer.  Living moment to moment is good and all that she may be able to handle.  Have family and friends send notes and cards. 


zauberflote
Posted: Tuesday, November 5, 2019 5:53 PM
Joined: 10/24/2018
Posts: 475


If she's out of the room lots of the time, but certain "in the room" times are predictable, perhaps the friends could call at those times. Perhaps they'd like to give you advance notice of their plans? They can make these lunches work at this point. When she takes a few tries to pick up the phone, what happens next? My mother's progression with phone use happened slowly but started with fumbling the receiver. About 2-3 years later, now, she only knows a phone reliably if it is put to her ear. 

Bathroom-- would she accept your wife going into the family bathroom with her, because wife "has to go too"? I think there are portable, re-usable seat covers for the cleanliness part. Or, carry sanitizing or alcohol swabs, and make a thing out of sanitizing the seat. Men don't always have the same problems that are endemic in ladies' rooms. Too many squatters with bad aim, who don't clean up after themselves <rolls eyes>


Unforgiven
Posted: Tuesday, November 5, 2019 7:24 PM
Joined: 1/28/2013
Posts: 2607


There's always the old trick of laying down two strips of toilet paper on the seat if you can get her to do it.  But if she persists, don't take her out to lunch.  I would hate to be the next prrson to use that stall after a hoverer.

First rule, though, is get used to them being unreasonable and don't expect them to vhange.  They won't.


RanchersWife
Posted: Tuesday, November 5, 2019 7:54 PM
Joined: 3/14/2018
Posts: 182


Sadly, the word you need here is acceptance.  Let go of the frustration. It's not easy but there is peace that comes in stages or steps.  When that step comes it's a relief. 

You don't have to ignore the urine covered clothes but you have to accept that that will continue to happen if you take her out. 


Suziesb
Posted: Tuesday, November 5, 2019 8:36 PM
Joined: 5/22/2018
Posts: 231


ebs,

I remember when our mom was in that moderate phase of her Alzheimer's before she lived with first my sister and now with me, it was similar to the challenges you are facing with her phone. She never did figure out how to use even the simplest phones (which is the jitterbug), so never was able to retrieve vm either. I agree with telling friends and family to send cards and letters. My mom still enjoys receiving mail from others to open.

As far as the bathroom problem, take her right before you leave the house and avoid the restaurant bathroom for a time if you can. You know that phrase "This too shall pass" ? It will. I like to think of my mom as a toddler sometimes. :/

Honestly if you can, try avoid the whole restaurant bathroom scene if you can. Can you eat out at places that won't be a long wait time? Take her before you leave the house and then as soon as you get home? 


harshedbuzz
Posted: Wednesday, November 6, 2019 4:55 AM
Joined: 3/6/2017
Posts: 1787


ebs0303 wrote:

When we go out to a restaurant or other public area, my mother refuses to sit on the toilet when she goes to the bathroom, instead squatting, out of a hygeine concern. She also has poor posture and some balance issues secondary to a fall down the steps a few years ago. We've noticed multiple times that she will come out of the bathroom with either the front or back of her pants wet, clearly urine dribbled down her leg since her actual degree of squatting capability is minimal, and she refuses to sit. We've asked her to sit several times, explaining that she was urinating on her pants or down her leg, which likely outweighs her perceived hygeine concerns about the toilet seats. She barely acknowledges the wetness and has basically told us she is not going to sit on a public toilet. It's futile to have this conversation with her and we don't know how to approach the issue.

She needs help in the bathroom; if she can't use it properly, she is likely fouling it for other patrons. Either you or your wife need to accompany her to the restroom to make sure she is sitting, flushing, disposing of paper properly and washing her hands after. I look for places that have a "family" restroom that's big enough for a second person of any gender to assist. You could try to get past this refusal to sit by bringing along a disinfection wipe or paper seat covers for her use. I know families that used Depends on outings away from AL or the SNF for their LO but your mom probably isn't there yet. If you can't get past this, perhaps it's best that she doesn't go on outings long enough to require a bathroom break. 

 

At her insistence (and because we thought it would be a good way to be able to get in touch with her), we got her a Jitterbug cell phone. We instructed her to charge it every night and take it with her whenever she leaves her room. In the last 5 months, I have never been able to reach her on this cell phone. She has friends who would like to take her to lunch occasionally, and sometimes this is spur of the moment if they are running errands nearby, but she is virtually unreachable and always forgets to take the cell phone with her. We've tried to coach her on this, but it doesnt help. Shes paying $30/mo for this but insists on keeping it even though she really doesnt get any use out of it. 

The Jitterbug needs to be disappeared. She's losing her ability to work devices which will become nothing but a source of frustration for her and others. Perhaps the friends could be instructed to call the landline to make arrangements. Do they have the same bathroom problems you and your wife are having? 

 

She's also incapable of checking caller ID or voicemail on her phone. We've been trying to keep up with her messages remotely and then relay to her who called when we speak to her (just about every day). When we ask when she spoke with Person X last, she says she has but can't tell us when and it seems obvious that she probably did not speak to them recently.... My parents (and mom) have had very good friends and several of the local ones have really been making a great effort to see her and talk to her regularly, but we're worried this will start to fade away at some point simply because its difficult to reach my mom, and its unclear to us how often she actually calls people back on her own. 

IME, the friends will start to distance themselves as she becomes more impaired and confused and less able to participate in reciprocal conversations. Watching friends decline cognitively is very difficult for peers.


Its clear now to me that my dad was engineering her social calendar when he was alive, but we have 3 kids including a couple of teenagers and thats less feasible for us to stay on top of.  I've considered using a virtual assistant to maybe connect her with her friends - anyone try that before?

I have not found electronic devices a substitute for hands-on attention for either of my parents- not dad with dementia and not my 80 year old mom who is cognitive OK but not tech savvy. 

What I did find was that as dad's dementia progressed, my parents' social network became smaller. They split the year between the beach and a 55+ community in Florida. The last couple of years, my mother was still pretty engaged with dad becoming something of a tag-a-long. When I cleaned out their houses for sale, not a single friend/neighbor asked after dad but they all sent mom their good wishes and invitations to come visit. 

 

Anyway, I know this is all from the dementia, but still very frustrating to deal with and I would love to hear how other people have dealt with similar issues.

I think for me, the hardest lesson in all of this is that some things are just not fixable however much effort you put into it. 



 
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