How do I keep from losing it? I try to get my wife to do what the doctors, nurses, and therapists tell her to do.

Try to figure out when are her more cooperative times. Use those times of day for medications, bathing, snacks... whatever task(s) she most disagrees with. Also try bribes, offer something she enjoys AFTER she completes______ (whatever task she is not willing to do). As for incontinence, get the most absorbent disposable briefs for her. Some are very pretty. You'll feel ok about throwing them away after they get soiled. Offer/Remind her to use the restroom every 2-3 hours while she is awake.

Some days she will be more cooperative; cherish those days. Some days she may be more argumentative. If she has mostly disagreeable days, talk with her doctor about anti-anxiety medication to help her calm down a bit and be more biddable.

Pjbaratta: Dear man, no rationale exists as it pertains to your DW (Dear Wife - these are some of the acronyms that we use here on the Aging Care forum) as she unfortunately suffers from dementia. For her care, you may want to consider hiring some assistance as you and she go through this extremely challenging time or you may consider managed care facility placement, i.e. memory care.

What a fine man you are.

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.

Please make an appointment with an Elder Law Attorney for a referral to a good memory care center and learn how to finance her care. Make sure you solidify your plans for yourself. You can contact her doctor about placing her in a nursing home until they can dam the Mississippi and get a dietician to work with her, she must be malnourished by now. You can also make an appointment with a Geriatric Psychiatrist who can evaluate her, educate you and medicate where necessary.

What would you like to do with your days when you are freed from the nightmare you find yourself in?

P.S. A Gastroenterologist can help end her gut problems.

Part and parcel of dementia is the ability to make proper decisions regarding bathing, taking meds, eating and so on.

So, the truth is the dementia is not livable for her, she is not capable of taking care of herself and you are attempting to fill the gap and reassuring yourself that you can make her well, unfortunately, you cannot.

What you are stating is very common in a husband wanting to fix his wife, in this case it cannot be done.

As for guilt, that is a self imposed excuse to not face the reality of the situation, she needs more help that you can give her.

It very well may be time to place her in AL, she will have people who are clinically trained on call 24/7. You can then spend some quality time with her, not battling a disease that has no cure, no hope for recovery.

I am sorry that you are having to deal with this.

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.

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.

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!

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.

Sounds like my mom! For me, always excuses and complaints. So annoying. BUT with other people? She's a star pupil! Try to be her husband and coordinate her care but get her into PT, for example, so the therapist can be the task master but not you.

Hire an aid to work with her to do the things she is fighting you on. Back off on your asking her to do all the things she SHOULD be doing. Or take her to adult day care. You need some time for YOU.

Meds - how many does she take? Why is she fighting you? Does she have trouble swallowing? Or just doesn't want to listen to you? My mom used to complain more about taking pills so I cut out some supplements. Less complaining. Is there anything of hers that can be cut? Or mixed in applesauce or something like that?

Incontinence - I feel your pain on this one too! Is she wearing pullups? Is she having accidents through whatever she's wearing? Or accidents when using the toilet - like my mom will pee on her pants cuz she starts peeing before she sits down cuz she can't control it. Anyways a pullup with an incontinence pad in it works well. Is she on a toileting schedule? If not, might want to add that to the new aids (that you're going to line up) responsibilities.

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”.

My Dh is only 70, still actively working and golfs 3-4 time a week. Trying to ease into retirement, but struggling with losing his identity when he does.

Mentally, he's brilliant.

He is Type II Diabetic and does not follow the low carb diet. That's how I cook and he eats that and bags of candy.

He is 80% deaf and refuses to wear his $6000 hearing aides. I talk so loudly that I am scarring my vocal cords. He says I mumble. The whole world mumbles.

His forgets everything--but that isn't new. Refuses to make lists for when he runs errands b/c only dummies need lists. (I must be the biggest dummy).

He's had a liver transplant, a stroke, a heart valve repair, a rock climbing incident that could easily have killed him. He's had a horrific motorcycle accident (again, should have been killed) AND 2 major heart attacks.

Does he listen to or care about what ANYONE says? Does he eat appropriately and get enough exercise? Wear those dang h/a's.

Absolutely not b/c all this stuff makes him feel 'old'.

He doesn't have dementia. He has a dinosaur mentality.

I tell you, it's been a ride with this guy. I can't imagine how much worse it might be if he develops 'true dementia'.

At least I have 5 kids who 'get it' and frequently ask how I can stand to live with him. If I pre-decease him the kids will immediately put him into a LTC home. They won't look after him.

PJ, let me first tell you I am pretty much a "control freak" verging on OCD and my bro, who I helped care for was one before me. My attempts to get him to do the balance exercises that so helped him in rehab? Net gain ZERO or minus 1 for me.
I would tell you that you already know the trajectory here is down. What little you gain in getting your wife healthier will be lost two-fold by the struggle for control. Your wife is losing EVERYTHING, including her mind and all that makes her who she is. On some level she knows this, and she knows she ranks lesser in the minds of many because of it.
My advice would be to work on your own issues of a need for control. Those of us who are "into" control know (yes we KNOW) our value to the world. Who else will balance that checkbook to the nickel? But we need to let people we care for have choices. We need to let them make their own decisions where they are able. "What would you like to wear today". "Oh, yes, that's your best color". "Would you like to take a walk with me now, or shall we go after The View?" "would you like hamburgers or tacos for dinner?" "Let's make milkshakes, shall we". Include her in decisions.
And babs is so right about picking the battles, the mountaintops on which you will be willing to do or die.
My best out to you as you do for/and WITH you wife, some of the work even our better angels would shrink from. My heart goes out to you.
Do excuse me if two answers from me show up, one not finished. I lost myself in searching the spelling of a word, so one is pretty unfinished.

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..

Have you tried to make her exercises fun by doing them with her? Can you make up a game where she will be doing them that isn't in a regimented way? It definitely will require patience and ingenuity. Worked for my mom to do them.with her.

Meds? If pharmacist says ok, mix with applesauce, ice cream, pudding or something else.she would enjoy.

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.

PJ, it’s a very hard decision for both of you to think of your wife moving permanently into a care facility, even though you know you are approaching burnout and that her health is deteriorating. This is what respite is for – for the carer, not for your wife.

It might be worth considering 2 weeks of respite care, rather than a once-for-all plan. You could have a short holiday. Even if you stay at home, you might be able to relax better. You and your wife might find that she responds well to the ‘orders’ and routine of staff, better than she does to your ‘constant battle’ over so many things. A change might be useful for both of you, to do things differently. See if your doctor can suggest / support it, and make it for your own health, not her ‘failings’.

If you decide to try this, I’d suggest that you don’t visit, and that you arrange for your wife to get a card a day from you. This might work well with the short holiday option. Worth considering?

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?

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

You and the health professionals have to realize ur wife suffers from Dementia. She can no longer be reasoned with. She no longer has that ability. Short-term memory gone. Empathy gone. You will run yourself crazy trying to make her do what everyone thinks she can do. A lot of healthcare workers, doctors included, don't really know what dealing with Dementia is like. Its like dealing with a toddler.

My Mom was easy so tricks didn't have to be done to make her do what was best for her.

You will get some good suggestions here.

NO ONE will ever EVER answer the question “Do you want to go to a lovely residence where you will be safe and comfortable and well cared for?”, by saying-

“SURE I DO”!

If you believe that she NEEDS residential care for her safety and well being, YOU will need to make that decision FOR HER.

Meanwhile, you have courageously and compassionately done everything you could to help her, while putting your own needs second to hers.

You are exhausted and discouraged, and feeling as though all you have been doing has gotten harder and harder, and you are right about that.

If she has dementia, she is understanding less and less about what you are doing, and expecting her to do, and this will continue to become harder and harder as her brain becomes more and more damaged.

There are at this time no cures that will help her understand more than she is now, so the decisions about her care will need to be considered as well as the decisions that you need to make FOR YOURSELF.

Have you made an appointment FOR YOURSELF with her medical provider(s)?That may be a good place to start. There may be things that they’ll be able to suggest that they haven’t realized you NEED to hear. Go by yourself to discuss what you need to know.

After you!’ve had that conference, think of some questions you’d like answered, and come back to ask them.

There are several men here who are their wives’ caregivers, and it will also help you to know that you’re not alone in this struggle.

For now, try to arrange for some time out for yourself. That’s important.

Good luck as you learn more.