What a hell-a-la-boo
My story has been shared over the past 2.5 years, so I will pick up from where I left off.
Mom is recovering nicely from her Ablation. I thank God for that. I am thankful also that her UTI and URI are both in the past. Sadly, what is also in the past, is her memory of events that led to her hospitalization 2 weeks ago, today. Her memory and cognition are both worse, due in part to her infections and anesthesia.
To spare our furniture and car seats from her newly developed urinary urgency and incontinence, I got some seat protectors/pads.
When they came yesterday, I laid them on the seats of our 3 cars, where she normally sits. I also placed one each on her spot on the recliner and at the dining table. I then went in her room and told her that I ordered them, they came, and where they were placed. I told her when she sees them not to make a fuss about them, just sit on them and act like nothing is happening. I told her they were to protect the seats and to spare her any embarrassment in case she cannot get up in time. She nodded her head that she understood and she asked no questions.
An hour or so after, she comes out of her room, sees the pads in the house and grabs them up and goes in her room with them. Yet another hour passes before I realize they are missing. I ask her where they are. She says she moved them. I asked her where they are. She says she does not know. I told her again that they were put there by me and reminded her of my reason. She says, "I have never peed on myself." I told her that she actually has, four times now. She exclaims, "Lord have mercy, when have I ever peed myself, huh?" I told her I will have her sil talk with her. As our living arrangement has become a Mommy and Daddy tag team, my nerves and patience were shot. It was daddy's turn to deal with our 84 year old child.
Hubby had a lovely talk with her wherein she tells him that I don't like her and she doesn't trust me. "Okay! Thank you, mom!" I moved Heaven and Earth and reduced my own quality and quantity of life to spare her from being moved to a facility and she does not trust me! Cool!
Needless to say, she tells my husband that she came out her room and saw these pads in her seats and I never even talked to her about it first. She says I am treating her like a child. Hubby had to tell her that she has in fact wet herself and there is no shame in it; but we cannot afford to replace the furniture. We are trying to be minimize our risks. She cried and cried. He begged her to work with us because none of us want her to go into a facility and we know she does not want to, either. He asked her if she did not want us to lay the pads down, could she routinely wear the pull-ups he bought her. She said she would wear the pull-ups.
Well, today, I cannot find the remaining 17 pull-ups. After searching and searching, I find she has hidden them in the back of a drawer and went around and once again picked up the pads. My hubby has concocted a plan. Everything for mom is now about her emotions. She only cares about how things/people make HER feel. His plan, he hopes, will have a lasting, emotional impact.
His plan is also a bluff. As a scare tactic he plans to take her to "tour" a memory care facility. He hopes she will see what he is trying to save her from. I will not be involved in the tour as she respects and regards him and her adult grandchild more than she respects and regards me. I fear the plan maybe traumatic to her diseased brain and come across more as abuse than "Tough love." What say ye?
Comments
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A facility is not a punishment. It is a place where skilled people have designed an environment in which people with dementia can be both safe and comfortable. It is a place where caregivers get days off and have help with tasks that require two people. It sounds like you are wanting your mom to be grateful for you caring for her, but she no longer has that capacity. You and she might both be happier with her in a facility where she can receive care and you can visit as her daughter who does not have to worry about the furniture or about the fact that you're exhausted caring for someone who does not care any more.
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I would be afraid she forgets the tour just like she forgot you told her about the pads. Even if she remembers his tactics still require her to reason through things. If I don’t wear depends and use the pads I may need to go to a facility. That’s a lot for her brain to work through. I doubt she will be able to do that. I also agree with sandwichone123. If the hope is to scare her a bit, what happens if you decide you can’t do it any more and she has to go to a facility? She probably won’t remember, but the negative feeling may remain. Yes, a home environment has people who love her caring for her, but it also has the couch you don’t want ruined, the stove she thinks she can still bake a cake in, the keepsake on display in the living room you don’t want thrown in the trash for who knows what reason and the cleaning product in the bathroom she might think is mouth wash (maybe not today, but possibly at some point). She doesn’t want you involved in her private hygiene decisions. What happens when it gets to the point that you need to help her put on the depends or even wipe? It honestly sounds like that might be where things are headed. I think in her mind she sees you as a daughter not a caregiver and she is fighting you. In a facility she may just give in to the caregivers. Even if she doesn’t, the caregiver is not going to get emotional, be filled with anxiety, and extremely stressed about the situation. They have seen it before. Please don’t take this as an insult. You have every right to be stressed! No one should have to go through this. I hope you can find a solution.
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What a stressful situation! I know your DH is doing his best to help, but I have to agree that she is beyond the capacity to reason like that. And also that moving to a facility is done to address the needs of someone with progressive dementia, not as a consequence of behavior choices. She didn't choose to have dementia, and she can't control her behavior in order to avoid an undesirable outcome.
I know that you really, really do not want to place her in any facility. I'm not saying the time is now, or that it will ever be time, but I'm truly concerned about your well-being. Her needs will only increase. She will at some point need 24/7 hands on care (someone awake and vigilant at all hours), which is terribly difficult to do with only two people in the household. And at this point she is really resistant to you being involved in her personal care. I HATE dementia and the way it warps relationships and sometimes makes PWD accept care from strangers more easily than from their own kin! But it's the sad reality.
Side note: if you someday do consider facility care, it's probably best not to involve her in tours or discussions about it. She can't retain the information. She can't reason through it. It stinks, but you are right about having an 84-year-old child. Normally you wouldn't have your child choose the preschool she will attend. Those decisions are beyond her scope of experience.
Prayers and love for you as you navigate this rocky road.
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@sandwichone123, thank you very much for responding and sharing your pov.
I fear you may have misunderstood my comment. In NO WAY do I think a facility is punishment. I see great value in having a loved one live in a facility. Throughout my nursing career, I have never worked in a SNF/nursing home/memory care unit, but I hold in high regards the staff who do. They are under paid and overworked.
As stated earlier, the plan is my husband's. He hates to see how our enviable mother-daughter relationship has been unraveling ever since her cognitive decline was given an official name.
Yes, he is hoping in some way that the tour will make mom appreciate what I am sacrificing for her on a daily basis. No drama here, but I am literally putting her life and wellbeing above my own and I have zero regret.
When mom saw her MRI of the brain, the image stuck with her and made a lasting impact. If she was suffering from anosognosia prior, the image cured her of it. Hubby simply hopes that seeing the inside of a facility will cause her to have a similarly impactful reaction.
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@H1235, your insight is both thoughtfully expressed and thought provoking. Thank you for sharing.
You are correct! She may very well forget the tour shortly thereafter. Also, quite on point is the negative emotions the tour may create, which would be more memorable to her than the tour itself. That is why I posed the situation to the group.
I know hubby's intentions are good. Before posting my comment here, I did tell him that I fear the "scare tactic" may cause lasting trauma, on par with psychological abuse.
As far as her accepting me as both her caregiver and daughter, I do not think she has a problem with it. Since moving in 5 weeks ago, she accepted my help getting in the shower, twice. Two weeks ago, after she wet herself, she had no complaints about me giving her a shower.
Thank you for reminding me not to take her comment as an insult. I have always been a sensitive person who is easily hurt by other people's words. Dementia/Alzheimers now forces me to take a crash course in letting the words and actions of others, roll off my back. I must remind myself daily to "D.A.R.E." Do not argue, react, or engage.😢
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@psg712, thank you for your empathy, thoughtful response, and most of all, promised prayers.
If there is one disease I hate with perfect hatred, it is Alzheimers. I am convinced it is from the pit of hell.
You said: "I have to agree that she is beyond the capacity to reason like that."
Until I read the same comment by @H1235, I honestly never saw how the "scare tactic" could be ineffective due to her diseased brain's failure to understand cause and effect. I most certainly will tell my DH to cancel his plan.
Every family member (5) and friends (7) that are aware of her diagnosis, and our new living arrangement, are highly concerned about my wellbeing. I agree wholeheartedly that we can not give 4 year olds a vote as to which preschool they will attend.
I am going to be 100% transparent and vulnerable by sharing a bit of my journey..
As a lifelong patient, mom has ALWAYS been by my bedside. As my health waxed and waned, mom filled her days off caring for my dad.
Before mom ever got a diagnosis, she often expressed her greatest fear. She feared after caring for her little family, she would have no one left to care for her when her time came.
My immediate family members who welcomed me at my birth, have died. Her "sick daughter" is all mom has left. If/when she gets placed in a facility, I will not be able to be a part of it. After watching her bury her husband of 50 years, my father, then burying her firstborn, my sole sibling; right or wrong, I will honestly feel like an abject failure if I can not return the favor and care for her, now that her time has come.💔😭
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I have cared for my mother at home for over a decade. She is in the advanced stage now. I always tried my best to make any necessary changes for her without disruption for her. As her skills diminished over the years, minor changes were made to compensate.
For chair and sofa protectors, perhaps buy washable ones that are close to the same fabric color as the chairs and sofas. I did that and tried to make them blend in. I did not have any conversation with my mother when things like this needed to be done. She did not notice or care that the protectors were there. She wore whatever pull ups were needed to be worn. When it was time, I would accompany her to the bathroom to help in any areas she could not manage on her own any more.
It was best for us to have routines and adjust as needed along the way. The repetition and familiarity helped.
I do not think having large discussions, trying to reason or planning scare tactics, will do you, your husband or your mother any good in the long run. She, unfortunately, can no longer understand and do certain things for herself. None of what she is doing is on purpose. As you know, she will lose more and more abilities.
This is an extremely frustrating disease and none of it is easy. There are so many challenges ahead for you. I wish I were back dealing with the stage you are now dealing with. There are many times now that things happen that create a lot work for me and are totally frustrating. I always try to remember however difficult it is for me in the moment dealing with this, it is far worse for my mother.
I wish you the very best and hope you are able to find a way to move forward to meet the many challenges ahead in a way that is less upsetting to you all.
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@JulietteBee
I am sorry this has all gone sideways for you.
A couple of points to consider:
Rule number one of Dementia Fight Club is Never try to reason with a person who has a broken reasoner.
You are a proactive and pragmatic individual with the problem-solving skills of a well-trained nurse. I expect that your DM was once very like that as well; alas, that iteration of mom is gone. You can't to reason peer-to-peer about anything with your mom.
Emotional intelligence persists well into the latest stages of the disease. Mom's empathy, memory and executive function may have left the building but her ability to deeply feel the sting of your words is very much there. The mention of incontinence seems to be especially triggering for her and yet you keep bringing it up. Imagine having anosognosia; your reality is that you are this independent and proper lady who has never done such a thing and yet your daughter keeps insisting you have. How insulting that must feel.
Strategies like seat covers work best when the PWD isn't singled out. As others have suggested, the best practice is to pick something close to the same color. And then cover all the chairs. When my friend did this, she said it was to protect the furniture from the cats' shedding. She even referred to them as pet-covers. No pets? It's because you "don't want DH to get them dirty snacking". For the car, it could be "they're more comfortable" or you're "protecting resale value".
Because some PWD will retain information that has a strong emotional component, you may need to back off and revisit this to have any chance of success. It's funny, dad recalled being told by his neurologist that he wasn't allowed to drive well into the late stage. Cars were 50% of his personality. The man couldn't recall what he had for breakfast or whether his favorite child was dead or alive, but he could remember, and perseverate on, not be allowed to drive.
Please don't use the MCF as a kind of punishment. At the end of the day, you and your mom have no control over the circumstances that could result in the implementation of that as Plan B. Besides, many MCFs offer excellent care in a dementia-informed setting with failure-free activities.
This is all so hard. Basically, you are running a one-bed facility out of your home with an untrained skeleton crew. You might consider if you and your mom might be better served if she joined a MC community and you could just go back into the role of daughter. Mom and I both found our relationships with dad improved once we were no longer the enforcers.
Good luck with all this.
HB3 -
Wow! Thank you for sharing insight from your 10+ years of at-home caregiving.
The pads I bought are washable. Thank you for suggesting finding pads that blend in with the sofa. Unfortunately, those I got are white and my leather sofa is brown.
A friend suggested I buy a throw to cover the entire sectional so that no one will know there is a pad under my mom's seat. I will now go try to find a large throw to help disguise her pads.
Everyone tells me there is worse to come. I believe them, yet I am terrified. The good thing is that I will have hired aides to help when it does.
I was caught completely off guard with all of this. Mom moved in 5 weeks ago. I anticpated my household members being self reliant for her first 6 months here. Those plans are now tossed aside as a more advanced mommy moved in with me, than the one I was supervising in an ILF as recently as Memorial Day.💔
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@harshedbuzz, the latter part of your 5th paragraph cuts deeply. Sadly, I never thought that she may have seen it that way and now I have no way of knowing if she believed that was my intention.😭
Mom was a Telemetry charge nurse throughout her nursing career and you are correct. I continue to reason with the intelligent nurse that I believe is still in there. Alas, I am forced to gain understanding and steady footing as it pertains to caring for my 24/7 charge who is cognitively impaired. This is incredibly hard.
Part of me recognizes it is her disease that is causing me all this angst, another part have viewed her actions as that of a mischievous child who knows better.
As I said in my response to fesk, I will be shopping for furniture throws later tonight. That is a great idea.
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Thank you for sharing that. You have my greatest respect for your devotion to your mom. May God grant you strength to stay the course with this difficult journey.
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Oh, I am sorry about all this. You have been given excellent advice already, and I am only chiming in to say I agree with others about not trying to reason and not thinking of an MCF as scary.
There are two chairs in my dad’s MC room. After spending an entire evening cleaning one upholstered cushion by hand (bleah), I bought washable seat covers for both chairs—actually, six covers so they can be exchanged easily. I sit on the covers myself, and I don’t refer to them. I also don’t talk about incontinence. Sometimes I do need to say, “You know, I think you may be uncomfortable. Let me see if we can get some help.” (Occasionally in MC I have done the helping myself, but not usually.)
The idea of an MC tour being a “scare tactic” is hard to hear, and I am particularly worried about the obstacle that this can create for you and your husband in your own thinking. Imagine that the day comes when your mom will need facility care. (That seems likely, in fact.) If you and your husband have created this idea in your own minds that this is failure and an MC is a house of horrors, then an event that is very difficult for virtually everybody will be imagined as abandonment (by you, not just by her).
There is another way to think about facility placement: as another form of care, creating conditions for your mom to live as well as possible, with as much dignity as can be managed. I promise: even if your mom is in a facility, you will be very involved in her care and advocacy.
I know how hard this all is. You will get through it. And we are with you.
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Thank you, @psg712! 🫂
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@ARIL, thank you for chiming in, even if only to add consensus.
I now see how using it to "scare" her could have long lasting, detrimental effects, not only on her, but on us as well.
Hubby was already told to scrub his plan. I have also invited him to read all the responses given so that together, we can formulate a better plan. So far, I know the plan includes buying throw covers for the chairs so mom does not feel like she is being singled out. She will not have to know that under her throw is a waterproof pad.
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Large clear 'yard waste' plastic bags are excellent to wrap around the upholstery filling prior to putting into the covers (cut off any excess). You may want to poke holes into the under side of the plastic or leave a side unsealed to let air escape. You may also want to put something between the bottom of the cushions and the chair or sofa frame—I used washable chucks.
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Thank you, @Emily 123, for adding to the discussion. I can definitely use your suggestion for the upholstered sofa sleeper in the den. Unfortunately, the other couch is a leather sectional and we have a standalone leather recliner.
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@JulietteBee
We've probably all been there. I know I have. It was especially hard when my parents moved back to the area and his mental status wasn't something I was really used to.
I think sometimes it's harder to wrap one's mind around incapacity when the person in question brings considerable cognitive reserve into the disease and remains verbally fluent. I know it was with my dad who was quite bright and conversational.
Rereading The Dementia Experience was helpful as a reminder that even if the upsetting behavior was intentional in the moment, dementia was still driving the bus.HB
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@harshedbuzz, thank you for sharing that you can identify with my situation.
You are perfectly correct. The amount of cognitive reserve and fluency she has retained often causes me to view her actions as intentional. I am alarmed at the thought that in order for her to become a more compliant pwd, she has to lose those attributes of her former self. 😢
Btw, thank you for that pdf. I will be reading it for sure.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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