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I suffer from some pretty severe mental illnesses as well as having a debilitating autoimmune disease. I was barely making it through a day at the beginning of this and it's worse now, even though we have home aids that come. My heart is really struggling right now, I try to keep in mind his dementia, but running out of the room to cry by myself isn't working like I thought it would. I'm scared for both of us. I don't know what to do.

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He needs memory care, and perhaps you need assisted living if staying in the house on your own isn't feasible.
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This is a very difficult situation. I think you are in way over your head and totally burnt out. You can not provide good care under those circumstances, no matter how much you love him and want to take care of him.

More help at home may be a good thing but I just don't know if it's enough. Assisted living might be a better option, even though it may not seem that way at some levels.

You both need to be better taken care of.

Good luck.
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This situation isn’t healthy or sustainable for either of you. Please find a new plan, husband in memory care or in home care for you to get away.
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I am sorry that you have struggled with this situation for so long. It takes real strength to ‘let go’ of what isn’t working. Sometimes, we assume that by holding on we are strong. No, holding on doesn’t require any ‘real’ strength. We may be holding on, due to fear of the unknown.

You are going to have to push yourself out of your comfort zone. Seek the help of a therapist or others who have done this to give you guidance

I feel your pain and I wish you peace as you navigate your way through this difficult time in your life. As stated by many, many posters, “You do NOT have to do the ‘hands on’ care yourself!” Please research facilities nearby to place your loved one. You will feel the weight of the world lifting off of your shoulders!
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I was discussing your question with my mother's hospice nurse today, and she told me to post this poem she keeps on her phone to share with families --

ALZHEIMER'S POEM

Do not ask me to remember
Do not try to make me understand.
Let me rest and know you're with me.
Kiss my cheek and hold my hand.

I'm confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you to be with me at all cost.

Do not lost your patience with me.
Do not scold or curse my cry.
I can't help the way I'm acting,
Can't be different though I try.

Just remember that I need you,
That the best of me is gone.
Please don't fail to stand beside me,
Love me 'til my life is done.
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NeedHelpWithMom Jul 2021
Nice poem.
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I think also that the tension and stress have built up to the point that reactions are automatic, and neither of you are able to step back, assess the situation and respond more appropriately and rationally.

And that's definitely not a criticism; I've been there myself, and had to learn how to force myself not to respond until I could do so rationally.   I've read of various suggestions, including counting to 10, or 20, or as high as you need to go before you're calm.   Rechanneling your anger into something more positive, such as beautiful flowers, or a stunning sunrise or sunset, and just focusing on that helps redirect thoughts as well.
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I truly get the frustration. Sadly it is time to find a different place for him to live..memory care or assisted living homes can be a better solution. Locally it cost no more to have my mom live there than to hire in home help. She is happier and we are happier. You can visit when you feel up to it and leave when the frustration begins. Your husband will adjust to the move. It is important for you to know that Elder abuse includes verbal temper tantrums. He deserves better and so do you. You do not mention family but getting a friend or family member to help you find an assisted living near you asap appears like a good idea. God Bless.
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What a horrible situation. First of all, no matter who it is or why, I would NEVER, EVER TOLERATE SOMEONE SCREAMING AT ME AND ABUSING ME - NEVER! No matter how you react, it is doing terrible harm to you. You are either lashing back (which can escalate) or you are holding it in and you will one day lose it completely. No one ever has the right to yell and scream. If every attempt including medication and all tried and true methods fail, then why are you staying close to that person. You do NOT deserve that no matter why. If someone's behavior is having a very negative impact on you, do NOT put up with it. I think that is when separation must take place and they must be placed, especially since you already have problems. You don't need to add more to them.
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Riley2166 Jul 2021
Is it possible to hire a caretaker to relieve you? If so, consider that. If there is no other help, I don't think you should have him near you.
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While it is normal to lose your temper occasionally, if you are losing your temper over and over, you must be completely overwhelmed.

It is exhausting to be that stressed out about everything. During the height of my caregiving days, my heart would beat so fast. It was a horrible feeling when my heart would race.

When daily activity is the same, day in and day out, it becomes such a grind. Our nerves become so frayed that just about anything will set them off. Is this how you feel? This happens when a person is experiencing extreme stress.

You are going to have to find some relief, some form of respite. I hope your situation will improve soon. Human beings cannot be expected to function like a machine does.

Keep us updated on your situation. We care.
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With your problems and his dementia I do not know how you manage.
Is there a slight possibility that Assisted Living would be an option for the both of you? You would be together and you would both have the help you need to care for each other. And as he declines a move to Memory Care would not be such a problem as most places that have Assisted Living also have Memory Care so you would both be in the same building.
Your other option would be to not have him return home.
Do you have a therapist that you talk to? Is this something that you would discuss?
Also if he is screaming at you would he ever get to the point where he might become violent? If so you have to protect yourself. (and do not say, oh he would never do that....with dementia you never know what a person can or will do. some forms of dementia can make a person more prone to violent behavior)
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The Alzheimer’s Poem moved me to answer this as I have the same problem with my wife of 61 years. I have internalized the idea that patients are meanest to the ones they love the most and cherish the good moments when I can. It is now my goal in life to outlive her, but will place her in MC when she no longer recognizes me permanently. Luckily, I have excellent doctors who know our situation. My primary Doctor pointed out the effect on my blood pressure, my depression and sometimes desperation. He upped my medication and prescribed Xanax 3 times a day, but suggested taking it only when anticipating or experiencing the desparation we all feel sometimes. I use maybe 5 a week, and the results have been excellent. I still might get angry once in awhile, but easily hide it from her so things don’t escalate. Please don’t forget that you are the most important person in his life and you must take care of yourself. If what I suggest is not possible, then I agree with others that he go to MC where he will get the expert care that you want him to have. Best Wishes!
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It sounds like you both need a little more help, a little more often than what you already have arranged. If you are living in your own home, is there a way to get more help from family, friends, members of your faith community, or paid help so you can get out a bit every day? If keeping up with the home with home aids is getting to be too much, it might be time to move into something a little simpler, smaller and less expensive so you can afford more help. Lastly, consider if your husband's and your needs have reached a point where either or both of you could benefit from round the clock caregivers in a residential facility.

I would also suggest talking to your regular mental health care provider about the symptoms you are experiencing. You might need a slight adjustment of your medications as well or in addition to a increase in outside caregivers.
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Your first answer (from MJ1929) says “He needs memory care, and perhaps you need assisted living ...”. You may not be the best person to make those choices, at least not right now. Could you access a social worker who could help you to think through the options? If nothing else, it could help to reassure you about what you decide to do.
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Hey, Just an FYI The same thing happened to me when I was taking care of my mother and sometimes when I take care of my father-in-law it also happens and there is an actual diagnosis for what you’re going through it’s called caregiver burnout. If it all possible see if there are any programs available to give you some respite care time sometimes there are churches or others that will provide a caregiver so you can have a break and it’s very important that you take breaks every once in a while because it literally drains The life out of you. While you’re taking care of your husband don’t forget to take care of you! Shonie
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Look up Teepa Snow on your phone or computer. Her organization has people that can listen to you and help you with ideas. You may also want to watch a few of her videos to help you understand his dementia better.

You didn’t share much about your personal situation in the question details, but it sounds like you’re responding in a perfectly normal way. Dementia patients can be extremely difficult to care for. You are so emotionally bonded with him as his wife, and your sadness and frustration is part of the grieving process. I found myself in shouting matches with my dad more times than I can count, and I wasn’t his spouse. Everyone is suggesting AL, but you may NOT want that yet. It’s important to look at your options with a team of people that understand dementia and aren’t as emotionally close to the patient.

There is an event on Teepa’s website called “Ask Teepa Anything.” Follow the directions to share your question and they may put you on the session. It won’t cost you anything, and a team of about 4 experts plus Teepa will spend time with you to explore your situation and help you with ideas. Its a zoom, public in that others can watch and listen, but you can opt to not share your husbands name and they talk to you about all of that beforehand. You can also pay a very reasonable fee to meet privately online with a Teepa Snow representative or even Teepa herself. Family members and caregivers supporting you can be part of the zoom too. I did both with them for my dad, and learned so much, and felt very much more supported and helped than I ever did with a therapist. The difference is they TRULY understand dementia and how difficult caring for these patients can be, and how it affects YOU.
Hang in there! This whole thing is a process, sometimes all you can do is take it one day or even minute at a time.
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I totally understand. I keep trying to remind myself of something a Physical Therapist told me when my mother was telling everyone I was trying to steal her husband. That freaked me out a lot. But she said "This is not my mother, but I will take care of this person until she gets back" I do get very frustrated at both of them (she & her husband) both with a bit of dementia. So I take a minute and take a couple of deep breaths and remember the above and pray for strength when I have time. I don't know if this will help but take it and make it your own. Just remember to take a few seconds and take a deep breath and remember, try not to argue or contradict it is useless. Make it like a game where you are playing something like charades and you have to guess what they are going for. I don't know, I guess I just want you to know there are people out here that uderstnad.
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Dementia can get worse, and you have to plan for that possibility. Will you be capable of handling things if he needs more and more assistance over time? Could you lift him into a wheel chair? Get connected with a social worker and senior caregiving groups so that you learn more about your options and what to expect when someone has dementia. Ask for help. Also get some grief counseling for yourself. You are shouldering a large burden of having to care both for yourself and your husband. Dementia is very difficult for the person who has it and for the caregiver, when you see your loved one change and loose their capabilities. When you are caring for someone with advanced dementia you have to accept them as they are, and they may have good and bad times. Don't try to teach them anything or have expectations that they can follow instructions. They are not in control of their minds. My mother with advanced dementia forgot how to walk (she kept falling) and now has to use a wheel chair. Think about assisted living. Some senior facilities can accommodate a range from independent living to regular AL and memory care, and some can also accommodate skilled nursing.
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Could you call the NAMI office nearest you and ask for help? I think you need quite a bit of support here.
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Sounds like you've probably done a lot for your husband and given him love. It's such a hard situation to be in. I know there are elder care navigators or social workers who specialize in this area who might be able to help, Maybe looking online into what Medicare offers would bring some help.

Don't beat yourself up too much for what has come before. You probably just need some help. I've been there and having compassionate, knowledgeable people help me out a little was a great comfort.

Take care.
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Take some you time.I got to the point
I would wake up dreading the day that
I know is coming.I would feel so guilty
For that..
6 years have passed she is now in a
Home dew to a broke pelvis and I
Feel so lost.
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Sounds like you need a decent break to step away and have a bit of time to yourself, even if just for a few hours. It will give you some perspective.I have a neighbor that pops around when I call her for a mental health break. If that's not possible, I do something needing physical exertion like pulling weeds or washing the floors. A local church has a walking labyrinth that really works. Distracts my brain from anger mode. I was smashing ugly plates outside but ran out of them. I also treat myself at the end of the day to something lovely like ripe strawberries and cream, gourmet chocolate or ice cream. You are carrying a very heavy load.
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Dear Mojojojo,

my husband and I are both disabled. We just found an apartment close to the heart transplant hospital which will be (praying) doing his (on list) transplant.
I can understand, somewhat, how you feel.

A few months ago, I had to make that very difficult decision, assisted living for mom.

it doesn’t make you a bad person to say, “it’s time I take care of me and I need help”. No one, other than those who’ve experienced the mental anguish and physical pain we go through daily, really understand. It takes toll on your physical and mental health.

I contacted local assisted living facilities nearby. I found a really nice place that takes moms insurance. You can definitely ask your social worker, Dept of social security, or call the adult establishments directly for assistance.

Anyway, now, we have to move in a few weeks and leaving it up to mom if she wants to relocate to a place nearer to where we move. This can certainly cause additional confusion, moving mom to a new place. But, Right now she chose to remain there. The five minute drive would be soon a four hour one and lots of phone calls.

i should’ve made the decision at least two years ago when I knew mom was changing. She could’ve gotten to know the people and the establishment better. She’s struggles one minute, cries the next, gets angry and hangs up on me, then happy the next. I’m still living on a rollercoaster, but at least I’m not worrying if she’s going to walk out in the middle of night, get lost, fall, or anything else that will hurt her. I know she’ll be fed, have a bed, get her medications, Etc. And that, is called peace of mind. It’s certainly not perfect, but it is saving all of our lives and a bit of my sanity.

in my opinion, I never thought I’d have to place my own mother in assisted living, but she socializes, loves her bingo, eventually….will be doing more activities when they finally allow entertainment & more activities to take place there.

Im glad moms there because now, I can do things I couldn’t when she was home. I can go to a store, take a nice ride, do things I have to or simply because, I want to. I visit mom and take her out a few times a week, for now, until move.

i love mom very very much, and tell her all day long to remind her. It doesn’t make us bad people. It’s NOT an easy decision, but when time is right, it has to be done. We’re not abandoning them, like many people do (very sadly).

I understand. I hope you can find some peace knowing others do understand and are here to listen and try to help with their knowledge and/or experiences. You’ll do what’s right for both of you. Pray a lot and ask for help making the right decision. You both will be okay.

God bless the two of you.
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Thank you so much for posting the Alzheimer's Poem.

I can relate to feeling angry and frustrated. My mother has dementia. I am frustrated daily; incessant phone calls, calls in the middle of the night; repeated instructions (which I have to remind myself she is incapable of following; thus the repeated phone calls).

Dementia is very difficult to deal with. Not just for me, but for my mother as well. She tells me, daily how depressed and miserable she is. She is sad, bored, lonely, and "feels useless." She knows her brain is broken. In addition to her cognitive decline, she suffers from multiple health and behavioral health conditions. She is tired of being sick. She also tells me how grateful she is that I am her daughter and caring for her.

I will follow the advice of other posters to take a breath and count before responding. I will also tape the Alzheimer's Poem near my phone.
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Know that you are not alone. Most of us have been at the breaking point at least once. I considered myself fairly stable but during my caregiving time I did things that were not like myself. Road rage, yelling at strangers, yelling at staff, fighting with my mom and dad who were being cared for. It was horrible, but friends would talk to me and tell me I needed to take time for myself because they could see the changes in me.
I reduced the time I spent caregiving (the staff at the AL facility were good) I joined a support group. I had to "disconnect in love" or I was going to make myself sick.
Hang in there and make the necessary adjustments in your life that will help YOU.
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Spend an hour or so of quality time with your husband and let the caretakers do the rest. You are on overload. If you feel the caretakers aren't great, look for better ones who you are happy with. Accept respite from friends and family, and you MUST find time to get out and socialize at least once a week. Take a walk in nature. Therapy is a given, especially if you're suffering from mental illness.
It's very hard to nurture yourself because it feels "selfish" - but it is the best thing you can do for yourself and your husband.
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Don't feel bad. We all lose our temper. It's the hardest job of all! Try to remember to take a deep breath. Get regular professional counseling to process emotions. My therapist does facetime with me once a week which helps me immensely. You mentioned you have your own existing health issues. You may not be able to care for your husband for long, as it is taxing even for a healthy person. Be realistic. Even when you have aids, YOU are still the primary caregiver, responsible for managing everything from grocery shopping to doctor appointments, prescriptions, etc. And when they call in sick, it's YOU who picks up the slack. You are really never "off duty." If your husband gets a cold or hurts himself, you now become a nurse. And what about when you get sick? You don't have the luxury to stay in bed. We would all like to keep them home as long as we can, but with dementia, it is extremely difficult. Consider a facility. Good luck to you.
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You might need to have your meds adjusted.

Tryan to get more help and center it around the times if day that is worse for you.
Pray
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Consider this - he's scared, and angry because he knows something's different, mental and physical, doesn't know what's wrong, but he knows it's something. So he lashes out at the one constant in his world gone sideways - YOU. He doesn't realize how he's hurting you but in his confused mind, he's confident that out of everyone, you will understand how terrified he is. And when he sees he's upset you, more anger kicks in - not at you, angry with himself - and the cycle starts over again. Why don't you give both of you a much-needed break away from each other - take time for just you, leave the house, go anywhere, but leave the house. Do NOT feel guilt - you're not deserting him, at this point, you're surviving him and you. He will be okay with the caregiver. So, next time he goes on a rant, instead of having a tear-jerker, simply grab what you need, and leave the house - even for 10-15 minutes to start with. Your situation is hard, but sugar, you got this!!
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You describe yourself as having "pretty severe mental illness". Do you think any person who fits such a description should be anyone's caregiver? You also state that you're suffering from debilitating physical illness as well.
I'm not saying any of this with any disrespect or insult intended towards you personally. You're not fit to be your husband's caregiver and for his sake as well as your own, you should not be trying to keep him at home.
Your situation is heart-breaking and of course you want to do right by your husband and take care of him. Think about it though.
There are outside caregivers coming in. Yet you're running out of the room crying. You say that the crying isn't working like you thought it would. What did you think it would do? It's not going to help your situation.
It doesn't make you bad or a failure if you cannot take care of your husband. It makes you someone who cannot for a number of reasons be a caregiver. That doesn't mean you don't love the person. It doesn't mean that they aren't a priority to you. Your husband needs to be in a care facility or you need a live-in caregiver to move into your home.
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In-home Hospice helped us. We are in Texas. Not only does my wife have a nurse twice each week and a CNA for showers 2-3 times per week, but we have a chaplain and a social worker 1-2 times per month who check on us.

It sounds like you could use some extra help and counsel to come to your house. Or possibly even considering that it may be time to move into a full time care facility. I’m sure that it may depend on your financial status as to whether it is paid by Medicare, insurance or personal pay, but there are professionals who can help guide you in the best way to go. It is a scary decision, but I had friends who walked that way before and gave me good advice. They didn’t offer it, but I had to call older friends to ask how they maneuvered these things. People that I trusted from church, etc.

When it comes to your husband getting angry or upset with you, an old friend told me to leave the room and change my shirt. Come back in with a different tone in my voice. With her dementia, my wife sees me in a different way and forgets the previous conflict.

Good luck. Remember the man that you loved and married. Keep an open mind to learn the next steps. This is what I try to tell myself. As difficult as it all is, you are doing the best that you can. Be willing to find some help. God bless you both.
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