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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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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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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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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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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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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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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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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 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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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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