I have thought about what my breaking point would be. I think no 1 would be volatile behavior. Also high on the list would be incontinence, although many of you on here have dealt with it at home. I just don't think I'm physically able. No 3would be inability to sleep nights, and I know many of you go through this now. Personally I don't know if I could get through many night without sleep. I think I have it bad now and the truth is my DH hasn't gotten to the point of doing any of the three things I mentioned. I have been caregiver now for seven years and know the worse is yet to come. I try to tell myself how much I can take, but really have o idea!

The breaking point is probably different for all of us. My DH was totally incontinent, did not talk at all, could not dress himself. The two things he could do was walk and feed himself. Two plus years after placement he still retains those two abilities. He has no other health problems. He was never volatile nor a wanderer. After three years I reached my breaking point. In a one week period he burned out two microwaves, flooded the house twice, would not get out of bathtub no matter how hard me and my aching back tried to pull him out and dealing with all the incontinence. All of this happened while I was in the house. When I took him to the grocery store I had to spend twice as long putting things back on the shelves ( things that we had never bought) than I did shopping. Fortunately my adult son and daughter agreed it was time. I have great admiration for all the ladies and gents here that keep their loved ones at home. I still feel some guilt but when I remember how it was I think I made the right decision even though I am headed toward the poor house. I could just not be a 24/7 caregiver any more.

Well, my breaking point keeps moving, so I can't really say what it is. I thought it would be when he became incontinent but he's just now becoming bowel incontinent and we're managing. KY Caregiver, my husband is a handful and has been physically violent, a wanderer and went 3 years without sleeping more than 3 hours a night. He's in good physical health - his only illness is his dementia and he's very physically strong. I also know that few facilities will take him based on his history so keeping him home is the best bet.

The lesson I learned was if your LO is physically aggressive, your options for placement will be limited so it's best to get them stabilized on meds and place them before they have any more incidents.

My lines in the sand keep moving, also. We got through the 2 or 3 years of violent behavior. We finally got the meds right to keep the aggression to a minimum.

The incontinence we have also learned to deal with and its no big problem.

My number 3 was if he couldn't walk even with the help of a walker. That got tricky when transferring from a chair to the wheelchair. We got lots of practice getting him up off the floor.

Now he has Hospice come for an hour in the AM to do the bed bath. The rest of the day I deal with changing diapers and waterproof pads when they need it. I feed him like a baby and give him drinks through a straw.

Now I guess my line is when I hurt my back rolling him and can't do it any more. He is very healthy and could last a long time.

MaryinPa. I am surprised you can get hospice if your DH is so healthy that is how my DH is, no problems except the alzheimers. Divvi, I agree it is a personal decision, we will each have to face. I'm just curious on other people's thoughts that ere in my position. I know our own health, wealth, and stamina will play a big part. I'm not sure what ll do or when ill do it. It's something in the back of my mind all the time though, and I know even then it isn't over, just a different worry, or worries.

Ky caregiver, I didn't think he would be admitted to hospice when I called them. The group I am using spoke at my AZ support group and one thing the speaker said most people wait too long. They based it on losing 15 lbs in 6 months. At that time he could walk short distances with a walker and could feed himself if I cut everything into small pieces. That was all he could do for himself. He couldn't dress or use the bathroom by himself. After his 10 day respite he can't do anything but chew and swallow. He eats everything I put in his mouth but seldom even opens his eyes. The hospice nurse says they do that to conserve energy. All his vital signs are fine.

We can't do more than we can do. We know when we've reached that point, and then it's time to stop. Hugs and wishing you the very best.

I live in an area where help is fairly inexpensive, so my thought at this point is that I can keep him home so long as he doesn't regularly need help at night (so I only need to hire help during the day).

oh blue how awful and hugs right back to you. Oh dear this is so tough.

My line in the sand...when he could not walk without falling..and not just that. He was getting up to pee every half hour through the night, even though he did not have to. Then falling many of those times, sometimes slipping in his own urine. Only a full time live in caretaker would have kept me from placing him. NOT a family member or friend, as he was at the point of needing a professional.

So so hard. I encourage any of you in this position, to read our "sticky" on spouses in placement. Just read what Wolf has started, and gone through in that challenge, and how far he has come, and many of us.

Pavane55 I hear you loud and clear. I love the memory of who my DH was, but hate the person the disease has turned him into. So many caregivers here have managed above and beyond what I think I could be capable of and I have such admiration for each and every one. I've always said there were three deal breakers for me - violent behaviour, wandering and incontinence and so far
none has happened, although I know that could change at any time. We have a chance to put him in a clinical trial for a new moderate-stage med, but it involves so many visits, examinations
and tests that I'm not sure any benefit would be worth it. The clinical trial I would really be interested in is for a medication they considered might be a cure - but I know that is just a pipe
dream at this stage.

Vickie, good luck with Medicaid. I hope all goes smoothly and that you are able to place your husband.

Never got to the point where I let him go. Thank God. I just wanted him here with me and I had made that promise to him at the onset. Went through the poop and the pee and the aggression and the falls (until I adjusted his meds). Anything good was him and anything bad was the disease. And he always would say "I love you". Toward the end it was hard to understand, but I knew. It was all worth it and I wouldn't do anything differently.

What about what your spouse wanted for you? Think about your spouses wishes. My DH told me and my son numerous times, that he didn't want me to take care of him when he got bad. He didn't want me to be the person to wipe his butt. Of course, when he got bad, he didn't know it know he was bad and it all was difficult. All the way to his death, I had to keep reminding myself what my DH had said he wanted back when he knew what he was talking about. He absolutely didn't want two victims of Alzheimers. One victim was way more than enough.

Hikergirl

Just came home from 2 days in town, settling Dado in, and had strong thoughts about this thread. How very painful, how soul wrenching it is to have to place our spouse. HAVE TO is the key. Some HAVE TO because they are so physically and emotionally worn down they are at the end of sanity. Some HAVE TO because in their hearts, they know it is the right thing.

And I am so thankful to myself, to the help that I received, and to God that loves me, to show me that I HAD TO do this. Since Dado has been only 4 days in his new place, he has declined so badly I cannot even believe it.

Falling and defecating and anxiety that can be controlled, to a point, and the caregiver that can do this is wonderful. But...in our case, and I know in many, his falling and symptoms are extreme, there is no going back or getting better in any way, and it is not to be helped.

It would have been a danger to both of us to have tried to keep him at home, and yes, I struggled with that thought this past week in transition. Yet, taking him to town, having him stuck in the car and full of urine and poo, and now, I cannot even transfer him from the wheelchair to his bed, which can be lowered. I already dropped him once and the nurses told me to not to try to move him again. My back and legs are so sore.

So for all of you that are struggling with guilt, please do what is right, for BOTH of you. Hikergirl* I found your thoughts to be right on.

For what it is worth, I support each and everyone of you that are considering placement. IT IS NOT OUR FAULTS THEY GOT SICK. And everyone is different. Most of us love our mates as much as the next person.

Our breaking point: Total exhaustion on our part (daughter and I).

dave

I am not comfortable leaving grandkids alone with my LO. He'll say something that will hurt their feelings. Can't have that.
It would be other things that help me decide on Placement. Safety, my health, his healthy, his social needs and such.
And, of course, the risk of burning down the house because we use wood for heat... But it is a heart wrenching decision...
Oh yah, burning the house down would probably have us pass the breaking point (...humor).

My husband was a gentle, kind man. Had he become a fall risk to the extent that he fell a lot, could not get up out of his chair without the risk of a fall, that would have been the time I would have had to face placement. I was actually becoming very concerned about this issue just before he died in August. It will be 3 months on Veteran's Day.

Swore for years I'd never reach the breaking point, well I was wrong. Some weeks ago my wife was dx with inoperable bowel cancer to go along with her late stage
AD. Hospice was recommended (more on them later)
Shortly after Hospice took over, not as a result of any particular change in behavior DW was placed on the standard Hospice Protocol of medication, in addition to Namenda, Aricept, Ambien and Lorazepam added to her regimen was Morphine, (she's not in any pain, Haldol PRn, and Seroquel and her Ambien was replaced with Resotoril. (Keep in mind no behavior changes prompted this IT's their protocol. The second night on this protocol she awoke at 4:30 in the AM to go to the bathroom. By the time I realized she had left the bed she had urinated on our floor which becomea like ice when wet. Long story short, I took a hard fall, was incapable of caring for her for a day or two and she was transported to a local In patient Hospice unit to have her meds regulated.
When I saw her that first day in her room I did not recognize the Zombie who had 24 hrs ago I had known and loved nor did she know me. and 48 hrs prior had been out to dinner with another couple for pizza finger food she could handle.
A conversation with the Hospice MD indicated the Seroquel would take a while to kick in (true). Why did she need Seroquel????
She was giving DW wife MS for pain relief, but when I asked where my wife experienced pain, and where it noted on the chart the MD was unable to respond.

I posed the possibility that my wife was now combative had lost all ability to judge special relations and had spent two days refusing to get into a bed sleeping at brief intervals only sitting ram rod straight in chair (confirmed by the minders notes) may be the result of a paradoxical reaction to Haldol ( these are classic symptoms) She admitted I was correct. Why is she on Haldol??? Again no answer.
I demanded that my DW be tapered off all the new med, returned to her old regiment and discharged. This took three days. I had round the clock nurses aide in place ready to go.
My wife was discharged in very much the same fashion I saw her day one in the hospital. Eyes never open, Lacking any recognition, unwilling to sleep, frequent disrobing incessant pacing. The Hospice nurse visiting our home too one look and said we've got to get her med regulated and had her transported to a different hospital hospice inpatient wing. It was a replay of round one.. Hospice MD's uses the same set on drugs that precipitated this Zombie like behavoir and that's it. If they don't work sorry. They believe if the keep repeating the mistakes over and over at some point the outcome will change.
Bottom line... Tomorrow transport from hospital to a skilled nursing facility, new MDs... wife's cancer not an issue,her AD is the only problems she suffers from and that includes, every behavior in the book from sleep disorders, to lack of cognition, to aphasia, disrobing, falling and on and on. The only facility willing to accept her is has a locked down Alzheimer's unit. Survival both he's and mine was the breaking point.
Hospice may be good the last weeks of life, but if you not breathing your final breath beware.
Back to writing her name in her clothing and prepping for placement tomorrow.

MARTY so sorry to hear of your DW's declining of late. I hope you can get things back to her norm where possible. on the note of hospice and meds, on a very different note, my hospice dr always asks me if I want to add or give a new med or stay status quo before ordering one.we discuss what the med would do and what it would accomplish, and I basically decide what my DH is given or not. hes been on hospice a while. they have only suggested if breathing or pain is an issue then yes morphine or a sub of sorts maybe is recommended but never given without discussing this first with me. I would expect it to the same even when he is in for respite they have written comfirmation of what meds he can take and not. and if there is something to be added to call me first. I guess what it comes down to is telling them how your spouse responds to any meds and if you are in agreement they be given something new or not. at any rate I have never ever had any issues of the dr forcing a med on my DH without discussing first if I agree. they work for us, so If you are not in agreement don't hesitate to force your voice. if it were me I would take them off it all and start from scratch and readd one at a time and see reactions. sometimes less Is more and they don't tolerate these potent meds well at all. we know it takes time to find the right ones thru hits and misses.
good luck, divvi

Marty, I am so sorry to hear about your wife's decline. I would like to make one small suggestion. It might be time to get her off the Alz meds. Nothing sudden, but I've heard many others say that in the late stages these meds aren't helping and might be causing problems. I am writing this only in the hope it might help with any of her current symptoms. Of course any med removal should be gradual, one at a time, and under medical supervision.

Marty
So sorry to here your dw is having to go thru this. I do hope with your help she can get back most of what they have taken from her. Do hope you have recovered.
Bonnie

Marty, my prayers are with you both. I am sorry that both of you re suffering through this. You are a great husband.

Mimi*,

I saw your post that today will be three months. How are you doing today? I just want you to know you are in my thoughts and prayers

blue,

Hugs to you too! You have been going through a very challenging time, to say the least. I think that recently we have been on different topics at different times. I will always be grateful to you for the kindness you showed me here when I was having a tough time a few weeks ago. You have the sweetest heart.

Marty,

Many of the meds you posted about sound familiar to me. Last year when my husband went from hospital to rehab to alf it seemed like the meds were often changed. (He was only on hospice at the alf.) Even though he had been on Ambien ER for quite some time, I remember that it was substituted with Restoril too. The reason given me was that Restoril helped extend sleep more than the Ambien. I am not really convinced considering he was on the ER and I didn't catch that Sue's Ambien was ER or not. He was also discontinued from Aricept pretty quickly. There was some discussion of Seroquel vs Respiradol and that was the one ultimately used. Another med was added and I think it was trazodone (?) Controlling his agitation was the top priority.

I once heard that most doctors and institutions are only familiar with a very small percentage of the meds out there and it seemed to be the case. I hope things are settling down for you and your DW. It is beyond stress.

marty, Hospice is supposed to help, not hurt. That certainly didn't happen in your case. No wonder you've had it with that bunch. maybe things will settle down now and they can get her on the right meds. Thinking of you and hoping tomorrow is much better.

Happy to read the plus side. Good thing you came prepared. Sending hugs.