I want to escape from a burden I'm tired of.

I did. She understood. The way she phrased it was that he forces me to keep being in an adversarial role toward him. She acknowleged that the care he gets from me is better than what he would receive were he placed in a facility. She said she believes he would rather stay home with me, but she knows he also wants to just do only what he feels like doing and be left alone. She said she knows that, if I aquiesced to his demands, he would sit in filth and develop disgusting sores. I know that he gets regularly showered and given other necessary personal care, only because I bully him into it. Maybe I don't have a right to do that. I treat him like a child that I've adopted, but he's not my child. His family offered to arrange for me to be his legal guardian. I declined.

Despite the bullying, there are sizable hunks of every day that he spends in what looks like a very contented state of mind. By and large, I would say that he is happier mentally and more comfortable physically - by a long shot - than most of the folks languishing in nursing homes, especially the kind that the non-wealthy go into. The evening is our happy time together. Supper is my high point of the day, when I have my nightly glass of wine. He loves television in the evening, eating desert and having coffee, watching an old movie or a nature show together with me. He crawls into a clean, cozy bed at night looking, for all the world, like a man having a very blessed end of life existance . . . and always wants a kiss before he closes his eyes. Last year, at the nursing home, I would see urine stains on the sheets of his bed there. Of course, I'ld remedy that. But the place revulsed me. He says he never, ever wants to go back there. Neither do I.

I think I will do nothing now. Maybe watch something on TV, like a film from the Internet. What seems, now, like a choice between intolerable alternatives won't eventually seem that. Crises have a way of blowing over. They resolve one way, or another. And life goes on . . . sometimes in a different direction. Maybe something will happen that I can't now anticipate that will carry me in the direction I need to go. I guess that's always the fond, sustaining hope of those who live wretched lives.

Rose, do you ever just quietly say, "dont talk to me like that?" He sounds a LOT like my mother, and it wasnt until VERY late in her life that i DID venture to say things like that. It just wasnt done! Her way or the highway. It would have started an argument. So i can understand if you dont say anything.

But maybe you can put a bug in his ear. He doesnt have to be nice, but he better stop being mean, if he wants things to stay the same. Myself, i could not deal with my mother - she only wanted to win every fight. If he is even nice sometimes, boy he is waaaay ahead of her.

I take it that you've had another time with him where he wasn't the most pleasant? It shows in your expressed feelings about yourself. Yet, the guilt over the nursing home quality or lack there of plays on your heart just as much as his times of being incorrigible?
Is a nursing home the next step after a rehab? Once he goes to a rehab is there still time to decide on a next step?
In an ideal world, home hospice time is a time for pleasant expressions towards one another.
I personally feel that your value in this world is greater than you realize and though there's great devotion to him, to your lengthy history, he pulls on some toxic chain. He does devalue you. And I hope that you can find it in you to detach from how awful it makes you feel about your place in this world.

I personally would say....I'm going on vacation until the MD's say it's ok for you to leave the rehab facility. That gives you a longer break. It also gives you time to really think about your situation without taking any definitive stand right now. Since the MD's suggest the rehab facility & he can't go home without you there to care for him....that sort of defines his choice.

I don't have the make-up/personality to care for people like you do. He is lucky to have had you caring for him this long. Honestly dementia & Alzheimer's is the most difficult to care for because they can get so mean....that is what my maternal grandmother was like with Alzheimer's.

Your your wise thinking.....burn out is horrible. Had it happen at work & I never did recover but other issues hit at the same time.

You've done your time. He needs more care than ONE PERSON CAN GIVE. You did a great job, he is just going to become more abusive and bullying.

Time for you. You can visit him in rehab/nursing home. I can tell you my mother was on Medicaid in a nursing home and it was quite lovely and she received better care than I was capable of giving her. After a couple of years, I was drained and I just wanted to be the daughter again. If he languishes, it'll be his own choice to.

Rehab probably wouldn't last much beyond 2 weeks, if that. The social worker said that he might get, at most, 21 days. It all depends on his capacity to be rehabilitated, which is very, very limited, given his age, frailty and the extent to which he has already deteriorated. After is last big illness, he was given 10 days. It's just to get him back being able to stand up and go from his wheelchair to his bed . . . maybe walk a few yards with his walker. A physical therapist makes the determination, within the guidelines of Medicare.

After rehab, he either comes back into my care, or he goes into a nursing home.

Yesterday, I didn't go to the hospital at all. In the late afternoon, I received a call from him. (Someone had to help him make it.) He was very contrite and remorseful. I was surprised that he even remembered. Today I stopped in late in the day, and he was very nice. Semmed to be cooperating very well with staff. He told me he loved me. This man can be so endearingly sweet . . . so convincingly affectionate. No wonder I have mood swings. Sometimes I feel so enfolded in love. Then that alternates with me feeling utterly spurned.

Next is rehab for him, which buys me more time to consider what I'm willing to do, going forward. I need to, somehow, not have my state of mind be utterly at the mercy of his behavior of the moment.

I was just thinking about you! You know how they tell parents to give little kids choices? "The red shirt or the blue shirt today?" Give him a choice - a nursing home near you, where you will visit him every day, or near his kids. I know, i'm mean.

He may really love you. Some people are just difficult. And of course things are tough for him with all the medical conditions he is dealing with. He is lucky you love him. He needs more care than one person can provide. Remember how hard it was to deal with him alone. Unaluna is right--he needs to go into a nursing home. You can keep visiting him and if he gets abusive then you will be able to leave. Reread all your posts -- you are already in bad shape because this has been more than you can handle. Please put yourself first, you may have many good years in front of you to enjoy.

Actually, I don't have to provide all his care alone. He is in the Medicaid Waiver program. So, thanks to that, Medicaid pays for an agency to send a home attendant 28 hours per week. Plus he gets the VA Pension for Aid and Assistance. That will pay for about 15 hours per week additional home health aid. So I can get about 40 hours per week of help. That still leaves over 100 hours per week that he is in my care. It is manageable. I don't mind doing it, if he is reasonably nice to me. I even enjoy doing it a lot of the time. I like having dinner with him in the evening. I like watching movies with him. I like being with him. I can even tolerate the occasional peevish outburst. It's just when those outbursts sound really mean/rejecting and start happening too often that I get emotionally overwhelmed. When it's a tone of voice that conveys, "Rose, I'm sick to death of you." and I'm hearing it multiple times per day, or day after day after day . . . and there's a lack of affection to balance it off, then I feel so criticised that I just want to get away from him. I can only take so much scorn before I can demoralized and depressed. I expect him to get irritated now and then . . . even often. But I won't be a target of really ugly disrespect sucker-punching me everytime I turn around. And this business of harshly berating me in front of people becomes intolerable. Were he sweet-natured most of the time, the work wouldn't bother me at all.

Visiting him in a nursing home can feel worse than being with him at home. I don't like being in nursing homes. I live in a poor state. The facilities here can be quite grim.

I like to believe that he really does love me, and much of the time I trust that he does. That trust starts to crumble, when he keeps jumping ugly at me too much. I get depressed and feel bad about myself. Then I want to just get away.

I'm going to hope that, by objecting as strongly as I have, his consciousness will be raised enough for him to see that I'm a person too.

So we will see.

You've been dealing with this for such a long time. I feel for you. Sending support and hugs.

End of life care is a tough job. You need someone to take care of you too or occassional activities to get away in order to cope. Sounds like you are taking it one day at a time but when you get suicidal--it means you need to get away from him for a while......

The problem is that dementia only gets worse as time goes & so do the MEAN outbursts because they continually lose the ability to control that especially when they have the tendency in the first place.

Your tolerance is like a glass of water that is now so close to being full you don't know when that one more drop will cause it to overflow & then you are the one that ends up broken with all your good intentions. Sometimes it's hard to see that breaking point because it is masked by the good times. As the bad times outweigh the good, that breaking poing gets closer & closer & a fine line begins to be walked.

Please take care of yourself.

If its like with my mom, I had to just tell her that being at home was no longer an option after the horrible trauma that happened there. She really had no comprehension of how bad it got even when the police showed up...but when it was clear that going home was no longer an option she resolved to go to the good quality nursing home I found for her close to my home where she was safe.

Only you will know your own overload point where you can no longer take his behavior.....also you said that even with outside help he wouldn't let them help him & required you to do the WORK yourself. What good is outside help if he won't use it & just saves it all for you to do anyway? Insisting on that break is important for you.

My friend was caring for her MIL the last several decaids of her life (she lived till 99). My friend is wonderful at care giving & is a medical PA on top of it.....but there came a time that caring for her MIL was taking a toll on the relationship & that was when she finally ended up putting her in a nursing home. There are quality ones around & from my own personal experience visiting a friend weekly now who is in a nursing home, the odors at times are not good but most of the time that is not the way it is. There is a problem when they smell bad ALL THE TIME....definitely not one I could pick if it's like that on several visits.

Don't disreguard your own burnout in this situation. You can eat dinner & watch movies together just in a different location.

Are you fearing his reaction & pushing you out of his life (rejection) completely & all that may be involved with that if you don't continue caring for him? You can always say that the MD says that he requires more constant care than you are now able to provide, putting it on the MD & not yourself for the decision. Your own well being is most important & spending just quality time with him would be more meaningful to both of you leaving you with much nicer memories of your last period of time with him.

I ended up resenting my mom after she died for what she caused me to go through with her selfish demand to stay in her home. It took me years after her death to resolve that anger toward her.

I'm not really worried that, if he went to a n. home, he'ld reject and push me out of his life. What keeps me unstable is that I really like being with him when we are getting along. So I bounce between feeling deeply content in my role to feeling upset and taken advantage of, depending on his behavior of the moment. And this is an old, old story of what has gone on between us since we met years ago.

I can relate to the situation of the lady caring for a 99 year old above. No one would have expected my s.o. to be around for as long as he has been. He's not 99, but he's up there. Back in his drinking days, anyone would have thought that he was curtailing his longevity. He has gone to death's door repeatedly, but, as someone knowing us has said, "He gets good care."

When he's being loving and nice to be with, I dread losing him. That's what keeps me clinging to him all these years that I have. Before I met him, I had had no trouble ending relationships that proved unsatisfactory. I'ld had more than a few of those. He has always felt to me like a soul mate, someone I was destined to be with. We are very close and always have been.

A lot of my problem, I believe, isn't the disappointing behavior he displays, but my own tendency to react so strongly to everything. This is a general problem I have in life. Someone is nice to me, and I'm on cloud nine. Someone says a cross word to me, and I don't want to live. It's immature and a ridiculous way to be. My state of mind seems always to depend on the nature and tenor of the last conversation I've had with anyone. This sounds like something that I've heard of people in AA working on - their serenity. I guess I kind of have the personality of an alcoholic, even without the very excessive drinking. I just react to everything, instead of maintaining some semblance of staying balanced. My mother, who was wise, summed it up by saying "Rose is always either upset, or getting over being upset. It's the story of her life. She needs to grow up." There's a lot of truth to that.

Also, my life revolves too much around this one relationship. I need to pursue and nurture other connections.

I still think you are being very hard on yourself - you are dealing with a tough situation many people would struggle with.

I think Eskie makes a wonderful point, you can still spend that time with him when he is in a care facility. A wife of a man who went into a care facility once told me she had struggled with the decision but realised she had made the right choice when she was no longer exhausted from caring from him - she found she could enjoy simple time with him, playing games together at the care facility which she was too tired to do before. She is still a care giver, just on her terms, and the stress has been lifted from her.

I understand that the choice of facilities may be poor where you are but running yourself into the ground is not an option. Everyone has their limit and it sounds like yours is giving signs it's up.

you might find you have better QUALITY TIME with him in a care facility where he will no longer have your caring to strike out at. Your time you spend together may actually be more caring than "care giving" & really much more enjoyable & positive.

It's tough when our happiness comes from others rather than from within ourselves.

He has improved even more than I thought was likely to happen, in terms of rebounding from his infections. It now seems that he was a lot sicker for a lot longer than I or his PCP realized. Some of his irritability was coming from that.

I think I do need to calm down when I feel hurt by him. Instead of me getting hostile, in response to his disrespectful outbursts, I might try and stay calm and say, "I think I deserve better treatment than that." One of us needs to remain "the adult in the room." Of late, that hasn't been me. We're like a pair of toddlers left without supervision.

As far as me being hard on myself, that's been said to me before IRL. I tend to think that, if my life feels too distressing, then there must be something wrong with my approach to life . . . something I can change. I used to believe that my self-esteem didn't depend on approval from others. But I said above that my mood does go up and down in response to the approval and disapproval I get from others. Maybe I've underestimated the effect on me of a steady diet of negative regard from someone close and important to me. I guess it's human to need and want validation.

I'm sleepy now.

Yes, it is a human need to want validation but my T that was also my DBT group leader worked to teach us that when that validation doesn't come from others we need to know how to SELF-VALIDATE

https://www.psychologytoday.com/blog...elf-validation

He's in a rehab facility now and on the mend.

I've actually enjoyed being home by myself these past few days. I started to fix my hair and wear make up again, which i hadn't done in months. it"s been a nice break, once i stopped spending all day at the hospital. thank you all for encouragement to look after me a bit more.

Hi Rose...I'm starting to notice my Dad starting dementia at 74. His mother and sister died from this.

SO..I do know what you are going thru (as far as the loss of the original person)...I stopped visiting my Grandmother in the nursing home because she was so "MEAN" to me. I was NOT however her primary caregiver so your burden is so much greater than mine was.

I don't regret stopping visiting her because I know she really didn't know what she was saying or doing most of the time...only had sort periods of clarity...If she had maintained the clarity..I like you would have probably forced myself to go.

Your story interest me..because i have alot of compassion for you (as a perfect stranger)and also because I am reading and thinking ...

OK...when I do become the primary caregiver for my father and I feel the things that this woman is feeling...I will know that my thoughts are NOT evil...but NORMAL...and I am not alone.

A big hallmark of dementia is this mean behavior....I'm sure you have been told that...but it is REALLY hard to believe it is the DEMENTIA that is doing all these horrible things...when you are looking at the person...it just feels like they mean it .

I like you have the "runaway" child thing...and also think my maturity got cut off somewhere along the way...And reading your post...realizing I may be faced with these decisions one day...I'm thinking.....I would abandon ship and go much LESS than I was...I would have to refuse taking him home...cause its just not possible and it is above my pay scale to take care of an dementia person.

I think that of course they don't want to be put in a home...but are they really aware they are in a home? My Grandmother was aware sometimes and called the Nurses *****es...and told us untrue stories about them (or where they true?) When it got that complicated for me...I stopped going.

My Dad couldn't stop going for his own personal reasons..being he is religious and it was his "mother". And I ended up hating dementia (but it was really my Grandmother) I hated...for leaving us..and for beating up my father so badly every weekend....I had never seen my Dad cry before that.

I think you know it is at the point for you to step back...its just very hard.
You have done YOUR BEST....and your best IS good enough....

You will be in my thoughts...and as I come on PC...I will hope to remember to see how you are doing.

Thank you, Misssy, for your sharing your reflections on having someone close to you decline with worsening dementia. I hope your father is able to have a good deal more time of reasonable independence. He sounds like a caring man.

It is brave of you to talk candidly about your feelings regarding your dad and his mother. To a large extent it renains a mystery to us all as to what exactly goes through the mibd of someone with advanced dementia. You are raising very difficult to answer questions that, I think, we do need to discuss, as a society and in the contexts of our families. When I worked as a nurse, there was one evening when I stood over the bed of a man with very extrene dementia and I asked myself the following question: "Is what I see lying in this bed still even a human being?" I then felt guilty for even having that thought - which I considered to be, at some level, a sinful idea to even entertain. We shy away from asking these questions, but I think they do arise in our minds and those doubts affect how we treat people and allow them to be treated. You are being very honest about what as gone through your mind dealing with dementia in your own family. I think that's where we have to start, in discussing what we need to think about. More and more of us eventually deal with this, as people are surviving longer and longer into old age.

It is a very challenging illness, and while no case is ever alike changed behaviour is a very common symptom. I encourage all of you caring for someone with dementia to seek out support as much as you can both for caring for the person and caring for yourself. As someone mentioned earlier you put on your own life jacket before you help others.

There is no shame in struggling and asking for help.

Would it be ok if I discussed this with you in pm? Sometimes we tend to misinterpret each other n it's easier to handle that in pm then in open forum. I really do wish to help. I just also don't want to cause any unintentional pain. I will leave it up to you.

No matter what you decide, please know my prayers are with you.

*hugs*

There is also no shame in admitting this is more than I can handle any more & there is a need for more help than I am able to give at some point in time.

My grandfather tried to hide my grandmothers alzheimers as long as possible. Knowing her behavior with that & how she was beating up my grandpa with her cane even with a worn out hip replacement, my mom was wise to not even entertain the thought of caring for her & realized she was way beyond care outside a care faciluty & my grandpa was better ofc in a place where he had some independence but still had care availsble at a push of a button.

Knowing our own limitations is part of mindfulness & wisdom & as a friend of mine who was caring for her MIL realized, sometimes the relationship actually suffers when we are their caregiver & improves when we are able to just spend the quality time with them....the enjoyment of being together returns.

He's in rehab still, so I have a bit longer before returning to how things were. Middle of next week is when rehab finishes. I've kind of enjoyed the break. We had a spat yesterday when I visited him. Well, it was just me getting frustrated that he stays in a wheelchair, when he should walk sometimes. I also see how he doesn't let staff at rehab help hiim when he should. He seems so stubborn, at times.