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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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Dear, God's grace and mercy is abundant. Do not feel shame. You were created by God and he does not make mistakes. You are perfect as you are. All humans become frustrated and overwhelmed at times, such as the times that you described. I also have autoimmune disease and I know your pain. As for your husband, relax. I have cognitive decline and short term memory loss now and I believe that your husband likely forgets any frustration that you may display. This is God's mercy. Don't regret being human. Humanity is God's greatest gift. I now hum a melody to myself when such negative thoughts enter my mind. I occasionally have to use earplugs to hear the melody and I promise you that it works 100% of the time. Prayers your way 🙏 ❤. Tell yourself, "breathe. Beauty, peace, grace and above all, LOVE".
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I am writing to you because I know how you feel. I will tell you how I came to find great relief in an adorable little bed sport which evolved due to profound need. I now call it "paper towel ball". I had been caring for my husband for many years who had severe fecal incontinence. Only those who have been through this can understand the frustrations involved in wanting to run away from these situations.

One afternoon I lost my temper completely. I was about to get hysterical when I saw a roll of paper towels near the bed. I quickly tore many off the roll. I crumpled two paper towels at a time to form one little harmless ball and began to throw these at my husband! It completely relieved my stress because I had something to throw at him that did not hurt him when it touched his body.

Much to my surprise, he took the balls I was throwing at him and threw them back at me. Not with a mean feeling, but he was so surprised by the balls, he was delighting in throwing them back at me. It was so much fun and it looked like snowballs in the air. We both started laughing so hard... it was like some sort of miracle of joy in the middle of all my stress.

I have been meaning to write an article about this for a magazine since I have not seen anything like it anywhere among all the reading I've done to relieve stress. Where are the joyful methods to help the near burned out caregivers?

From that point on I asked him permission to play paper towel ball whenever I got stressed out to the max. He said yes. I gave him his own roll of paper towels, a big basket and told him to make his own. I did the same thing. From then on when it got really tough with me I threw those balls. It worked every time like a charm. It's sort of like a pillow fight, but with only the very light balls flying through the air over the bed. They get lighter in weight as they fly through the air since they unravel slightly. In any event, I can only say I share this little experience in the hope it will help another wonderful caregiver in some way.

Honestly, I think this paper towel ball therapy would be great for healthy husbands and wives when they feel like an argument is getting out of control. I think it would work under most circumstances without harm, since as mentioned above when you throw the paper balls in the air they lose a lot of their fling power but do make it to the cared for loved one.

Prayer and patience are the key here, and living one day at a time.
My husband passed away in January (Covid) -- but because of these little flurries of paper towel balls I have some joyful memories of really stressful situations.
Just wanted to share the above if it will help at all as an interim solution.

I guess you could call this little game Paper Towel "Power Ball" :) It gives you the power to overcome a lot of stress which comes along with being a faithful caregiver.
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MargaretMcKen Jul 2021
Just love it! Thanks for sharing that trick!
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Imho, it is IMPERATIVE that you seek respite through any means possible, e.g. Visiting Angels, a church, et al, else you fall even more ill and are good to no one. Please take care of you because if you don't take care of YOU, you cannot take care of anyone else.
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Holleylawfirm Aug 2021
True. My #1 rule for nurses.
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I am so sorry for your situation. Have you spoken with your doctor about giving you a perscription to relax you? Something that is not addictive and won't harm your own health and mental issues. I take one 60mg of Duloxetine once a day. It makes my day and relationship with my spouse go so much better.

Please check with your doctor if you haven't aleady. A caregiver's life IS stressful. Besst wishes!
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Keep up the faith, it will all be over one way or another after while. I have been dealing with my Aunt since 2012 when she had her stroke. Now that I have caregivers and she has come into money everyone from the back allies have started to come around and so call help. They have manipulated here to there way of thinking and so no regard for anything I have done. Do not be upset with your self, for we are only human. GOD has given us the ability to cope no matter what the situation is. In time you will get what you should be getting. I look at this way I will either go first or last. Either way my reward will be coming. No weapon formed by man will ever prosper. As long as you have done the best that you can and have yet to run out the house screaming you are holding your own and will be rewarded in the end. I know it sounds everyday quotes but listen to them and you will be able to find some peace in your life. Life was never supposed to be easy but keep your faith and hang on to GOD's hand. You will be rewarded.
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My (our) heart(s) go out to you. We know this is not easy and it is painful, hard, challenging - and there is no respite.
* What I feel you need is more self-care.
- FIND A THERAPIST
* Take time outs to re-set / shift your mind's focus.
- Do something you enjoy, from 5 minutes to 5 hours, depending on circumstances.
* Do find care / help / support - you have although it is enough? and what are you doing when they are there?
* Understand that you are grieving; you are losing the man you married and this is grieving in 'slow motion' - it is heartbreaking.
* Do you have friends you can talk to - support you emotionally?
* Are there organizations close (enough) by that you can call for referrals for support groups or to get a list of people needing support / groups?
* Allow yourself to 'fall apart' which means to me: 'releasing' blocked / locked up energy (grief) that needs to come out.
* Your heart is grieving and exhausted. What do you feel you need and what can you do? Make a list? let us know.
* EAT HEALTHY and exercise, meditate. I tell myself to do these everyday and perhaps around 70% I do. Do what you can. The key is INTENTION, AWARENESS, self-kindness, and re-programing yourself to do what you want and need. Even 10 minutes of quiet meditation helps me. In fact, I'll do it now.

Gena / Touch Matters
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Reading these thoughts has been a helpful exercise. I've been looking at care facilities, struggling through "sticker shock" with their add-ons, etc., trying to reconcile whether we're really ready for that step (there is no long-term care insurance). My 84-year-old husband has more than moderate non-Alzheimer's dementia, in addition to what I call a "commanding" personality, and all too often his most objectionable traits are on full display. He is overweight and barely ambulatory, and in the past month or so has had several falls -- none of them damaging. I'm 76 and although I've had a very recent type 2 diabetes diagnosis, I have taken pretty good care of myself with exercise, proper nutrition, ME-time, etc.; but needless to say, his ever-advancing "neediness" is taking its toll and I definitely feel the stress. So I shall continue to wrestle with my own situation, bearing in mind the thoughts and experiences of all of you.
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Hi Mojojojo,
I write from the perspective of the patient. My most recent Neuropsych Exam says I've moved on to Moderate-Severe Dementia. My DW and I have spent a lot of time and money planning out how we would deal with my Care Plan, and a Financial Plan. We've done this in conjunction with a very TRUSTED Financial Planning Specialist, and Estate Planning and Eldercare Lawyers.
Reach out to your Trusted friends from Church and ask if any of them know a Financial Planning Specialist, and Estate Planning and Eldercare Lawyers. All of my advisors have been people we know from our Church. We are now moving on to the last part of the Legal work that needs to be done because of circumstances that have changed, that could not have been thought of before.
Prayers will be going up for you. God Bless you both.
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Your frustration and anger are understandable and are shared by care takers with or without medical and emotional issues of their own.
A Care Taking Support Group might be a helpful outlet for you as well as online forums like this one where you can vent and share your distress and maybe get some helpful tips!
Having someone to "talk to," even online or by email, can go a long way in helping you through this journey.
I often credit a sympathetic sister-in-law for "listening" to my rants and wailings while I was taking care of my husband as totally having Saved My Bacon on the Care Taking Trip.
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I feel the same way. I resent this horrible disease and his attitude. I want to scream I get so frustrated. My children (adult) see this and blame me. We have a care giver that comes in 3 days a week. The insurance won’t pay for more. So the rest of the week it’s the family and I.
your hubby may scream and yell. Mine sits and waits to be waited on and acts like a child. It’s very frustrating. Try to take time for yourself. Not minutes or hours but days. I love cribbage so I find a tournament as near as I can. I stay for at least two maybe three days. It does help me. It also forces the children to spend more time with their father and learn more why I get frustrated.
I hope this helps you. It took me a while to actually accept this time for myself. I hope you try it.
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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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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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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 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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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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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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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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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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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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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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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'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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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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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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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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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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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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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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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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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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