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She always has an excuse: "Not now", "I don't feel good" or "why are you being nasty (telling me what to do)".
How can I not keep trying to get her to get well? The dementia part is livable right now. But the physical health thing is troublesome. Trying to get her to eat, drink her protein drink, etc. is a constant battle.
Her medications... I'm not even going to get into that.
The incontinence... The Mississippi runneth thru!

Bless your heart. You remind me of my dad who lovingly cared for my mother, as he was fully vested in his marriage vows of "in sickness and health."

He also didn't want to put any additional strain on me as I still had one child at home and lived more than an hour away, so my weekly visits probably didn't help as much as would have been useful, but at least I was someone he could talk to. He once told me, "My world has gotten so small," and my heart broke for him. I took them on short road trips while we still could.

Unfortunately, Dad was diagnosed with cancer and died six weeks after, leaving my poor demented mother lost, confused, and devastated. We had my dad's memorial service two weeks later, and three days after that I had to move her to a nursing home -- so much change for someone so unable to handle it.

My dad would never have even considered putting my mother in a nursing home while he still breathed, but he told me he knew she would have to move once he died. What neither of us realized was that it would have been much better had my mother been moved into memory care and settled before Dad got sick. He would have been able to see her every day and love on her as always without the daily battles about showering, eating, and yes, the "why are you so nasty" accusations. (They were devoted to one another and never talked to each other that way before dementia.)

I realize my dad had cancer, and I doubt stress brings it on, but deep in my heart I think he died because of caregiving and the stress that went along with it. He came from a terrible, broken family with multiple divorces, abuse, and abandonment, so he did everything he could to make a happy home for my mother and our family. He succeeded beyond his wildest dreams, but on this one thing I wish he'd been willing to compromise. Mom would have had better care, and Dad would have had so much less agony had she been in a safe place. He willingly carried the weight of their world on his shoulders, and it killed him.

Please keep that in mind. Be the loving husband you are to your wife, but know that hands-on caregiving may not be the best way to care for her -- or for you. I realize you're a package deal -- that much is clear -- but think about what might happen to her if you were to go first. My dad had no health issues whatsoever and no symptoms except a "stitch" in his ribs, and that turned out to be liver cancer. He was gone in the blink of an eye, and after 66 years my mom was suddenly alone. She was never the same -- none of us were -- but we did our best as you're doing.

I just hope you can get some insight from our family's story, as we went down the same path you're on.
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southiebella Nov 18, 2022
What a sweet tribute to your dad. He must have been a lovely man.
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pjbaratta- please make it easy on yourself and your wife. Go with the flow. If she doesn't want to eat or drink, that's fine. She will when she gets really hungry and thirsty.

My mother who had Alzheimer's went through almost 2 years of not eating any solid food. She only drank nutritional shakes, 6-8 bottles a day. Then later on, she was eating everything, even attempted to eat non-food stuff.

When it came to taking meds, I was fighting to get her to take them, then I discovered she was hiding the pills everywhere in her room, or pocketed them in her mouth to later spit out, or palmed them and pretended to put the pills in her mouth. Then I realized she hadn't taken pills regularly for weeks even months, and she was still OK. Missing or skipping pills here and there didn't really hurt her. So, I relaxed a little. Toward the end when she had trouble swallowing pills, I crushed them and put them in her shake.

As for your wife's incontinence, is she using diapers and pads as well as underpads to protect the bed/couch/car seat? When my mom soiled her pants with #2, I just tossed the pants. I also used the squirt bottles (postpartum bottles) with long tip to wash her. That made the job easier for me. You can find those bottles on Amazon.

My point is to stop battling your wife. Relax and go with the flow. Save your sanity and your blood pressure.
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I have gotten applesauce, yogurt, fruit cups, etc., for her to use to take pills. She’s getting better at taking them if I just leave to pills out and leave a fruit cup(or?) next to them. And I’d be happy if she drank 1 nutritional shake a day without hassle.

I have tried to make her exercises fun by doing them with her. But I end up doing them by myself. Which is good for me…
She uses diapers and pads as well as underpads to protect the bed/couch/car seat. I am adamant about that! And I do just toss out the clothes if she soils herself.

I like the idea of 2 weeks of respite care. But I will more than likely not do it. I would have to get over feeling guilty. I am hiring someone for 1 day a week (to start) to come and let me get a good 7-8 hrs of “My time”, where I don’t have to feel guilty if I leave to do something.
She finally wears the “Guardian” 911 device and is pretty good about having her cell phone near her. I wanted to get her the iPhone watch. But it would be complicated for her to use.

I know dementia won’t get better. But I feel that if she could get better physically, she would be easier to care for. At times she seems well, physically. The mental process fluctuates. And yes, sometimes it feels like I’m dealing with a toddler.

I want to thank ALL of YOU for your input and suggestions. I know that the time is coming when she will need more care at home or a home. It is very hard to let go of the person she was. And yes, I am most likely seen by her as a “nag”.
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We had this challenge w my dad trying to get mom w dementia to do all the stuff she’s supposed to do. Eventually one of the physical therapists alerted social services of potential elderly abuse, by dad of mom. Talk about nightmare scenario! This exacerbated by her wandering to neighbors in nightgown claiming abuse. All debunked, but this was a key reason for getting professional care in home (after 4 wks hospital & rehab).

He was in constant tears, my dad my rock in the storm. so upset & feeling so helpless & guilty. Honestly had no idea what to do, he wants to do right, but as he says himself - he’s an engineer not a caretaker.

i had a heart to heart w dad that he is no longer to police mom, that’s not his role now. He can intervene by talking to (brilliant) caretakers. They take care. He is the husband, not her policeman nor her nurse.
This has brought us so much peace past 6 mo on this path .
no idea what next glitch will be, but we’ll figure it out!
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bundleofjoy Nov 18, 2022
“i had a heart to heart w dad that he is no longer to police mom, that’s not his role now. He can intervene by talking to (brilliant) caretakers. They take care. He is the husband, not her policeman nor her nurse.”

great advice!
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You can see the reasons behind eating, drinking, activity, medication, toileting (whatever is next to do) but maybe she no longer can.

Things to keep in mind.
- Dementia is progressive
- choose your battles
- let some things go

It can be hard to shift focus..

From being task focused to what really matters.

What is something you both can still enjoy together?

Watching a commedy film? Listening to favorite music? Taking a drive? Sitting in the garden?

What can you do today that will add a little joy?
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Pjbaratta, we fight this battle daily. I am afraid there is no magic answer to your woes. I can share that my mother has many of these same issues you are facing and how we have approached them. I am not sure if they are appropriate in your situation, these are just our current approaches. I don't think there is space for all the things we have tried...

My mother's motto is "I don't care." This is so frustrating because we put a lot of time and effort into her care while trying to enable her to live as full of a life as possible. She has suffered from depression her whole life, and it rears its ugly head on a constant basis. The only thing we have found to combat the "I don't care" is to simply and honestly state that if she doesn't care, we won't care about letting her age in place. We have a minimum amount of responsibility she must exercise in order to live at home with us as her caretakers. She must eat a healthy diet (that we prepare and have ready for her when she should eat), take all her meds on time (she likes to pick through the pills and take only what is bothering her that day... seriously?), do her daily exercises (PT, hand exercises, handwriting, and chair yoga), drink her daily allotment of water (if she is successful she gets a piece of fun size candy with dinner), and take care of her dog (feed, water, etc.). To say this is the minimum is not a threat. We have been very honest and upfront about the fact that if she is unable to provide this minimal amount of participation we will put her in assisted living or a nursing home. We are cognizant that we can not do everything for her, we are not healthcare professionals, we are not her maid and butler, and if she can not help herself we will place her somewhere with a staff that is capable of ensuring she receives the quality of care she requires. It's tough love, but this is how I was raised and I am honoring the honesty with which I was raised. It's not a fight, it is an honest conversation. We have this same conversation at least once a month. The choice is hers, do the right things to take care of yourself with our help or we will find someone who can help you. It is her choice and there are more good days than bad so we will take it. :)

The biggest help we have found with her manageable dementia at this point has been a set schedule and daily routine. I cannot emphasize this enough. We use an Alexa to help her stay on track throughout the day. Alexa will tell her good morning, it's time to eat breakfast and take your medicine. Later Alexa will announce that it is time to do hand exercises. Alexa continues to politely micro-manage mom throughout the day. We follow up a few minutes after each of Alexa's messages to be sure things are moving along. Alexa sets the expectation and we provide the follow-through. On rough days she is madder at Alexa than she is with us so we take it as a win. LOL

We battled the incontinence for close to a year. Once we made her responsible for taking her diaper pail contents to the trash can she got serious about working on the incontinence. We remind her to go to the bathroom as soon as she gets up in the morning and when she has her meals and snacks throughout the day (scheduled about 2 hours apart). It has helped a lot, combined with the Kegel exercises the doctor gave her to do. Her nurses and doctors all said it's basically a crap shoot as to whether or not she will ever be continent again. We have had more good days than bad as of late and she has even asked for some new big girl panties.

Just know you are not alone. You will find what works. You may have to go through a hundred things to find something that works (at least for a little while). I wish you patience and luck. Stay positive.
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bundleofjoy Nov 18, 2022
dear caring4kin,

you are amazing, loving, and super organized. amazing.
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Pick your battles.

I was forever trying to get my mom to follow the physical therapy protocols, not to sit at the breakfast bar because it was bad for her back, to shower, on and on…

I became a nag.

I wished I had let it go because it never changed anything. That’s my regrets..
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Dementia has made my mother her own worst enemy. Example: She was hospitalized and kept running off on them when the told her to stay put and leave her IV, etc., alone. Once the IV, etc, was out, they encouraged her to walk more to keep up her strength so she never walked again. She showed them!

“I don’t want to, you can’t make me!” about everything.

Anyone who tells her to do something - anything - is met with defiance and suspicion.

We had to place my mother in care (a great, small home) about about a year ago, as she needed 24/7 supervision. We have children and a business. She has lost her concept of time and doesn’t know if she’s been there 10 years or 10 minutes. She doesn’t recognize us (actually argues that we’re nobody to her) and tells people she’s never set foot in her daughter’s (my) house, nor seen me in years, despite living with us 15+ years. That has eased a lot of my stress and guilt for placing her.

Anyway, my message buried in all this blah blah blah, is that I wonder if dementia’s lovely partners paranoia and suspicion cause them to be so defiant, as their broken brains question our motives. Might be a calming med to help with her internal turmoil.
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Your wife is not going to get well, so there's not much you can do to force this situation on her, unfortunately. You cant reason with dementia, so stop trying. Same goes for being her nurse.....hire someone to come into your home to assume that role, or think about placing her in Memory Care Assisted Living now. You're admittedly burned out, so being a full time caregiver is no longer working. Let someone else assume these responsibilities and You go back to being the loving husband who goes to visit her every day (or whatever) and brings her a treat or a gift or just a hug and a kiss. Dementia often reaches that point, and you have to override what she "wants" with what's best for BOTH of you. There are 2 lives that matter here, not just one.

Let go of being the person who tells her what to do and when to do it, and look into Memory Care now where 3 meals a day will be served to her daily, period. Along with her meds, showers, and everything else she needs including doctor visits on site.

Good luck to you
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Reply to lealonnie1
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I’m so sorry you are going through this. You have to pick your battles. Keep her clean and as emotionally happy as her brain will allow, and whatever food you are able to get into her has to be enough. When my dad won’t eat we make him a very high calorie milkshake with peanut butter, 2 bananas, coconut cream, and full fat milk. He will usually drink most of that. As for medication, we slip his anti anxiety medication into whatever we can (mashed potatoes, ice cream, hot cereal) and as for the rest we don’t worry about it so much if he refuses to take it. He is supposed to take blood pressure meds and a baby aspirin but if he won’t take them I am not going to die on that hill. He has Alzheimer’s. It’s only going to get worse. My philosophy with any progressive terminal disease is “treat for comfort, not for cure or longevity” as there is none. Quality over quantity. If he should die of a heart attack or a major stroke before Alzheimer’s forces him into memory care where he could live like that for years, all the better for him. He would want it that way.
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