What do I do when I feel alone in caregiving?

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I am at home with a husband who had brain surgery (two aneurysms) and he has improved from not know who I was to remembering people again. I am happy that he can shower, shave, walk, get dressed alone and know his preferences. However, I feel alone when he won't answer me, or look at me when I am trying to get a response to my questions. My questions have to deal with dinner, does he want a hair cut, taking medicine, and the like. I feel ignored, alone in this and it is frustrating! When I ask him if he realizes he is ignoring me, he says I don't know, or shrugs his shoulders. Maybe I am sounding controling, but I am not used to this situation and maybe I have "cabin fever". I don't know. He used to be a "know it all" and now, he doesn't know. Please help.

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Topaz,

What you say is so true. What's the saying, familiarity breeds contempt!!! As caregivers, we know that firsthand. It seems that one of the reasons they take out their frustrations on us is, one, we are the closest to them and they feel secure in knowing that we will be there for them no matter what. But there does come a point when you need at least a break or you will break yourself, because we all have feelings. But to even encourage yourself, like you said, smile and say, I love you, helps as well. Have a good day. MLC
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Hi Fancicoffee,

It's been a long time. I actually had put this message board on the back burner because so much has been going on for me but when an email came a couple of days ago notifiying me of a response, I looked into it and am glad I did. Thank you for your encouragement b/c I know things are not easy for you as well.

Yes, hurtful words can definitely go to the very core of who you are. I experienced that many times from my aunt who never said an unkind word to me in my life. It was shocking and distressing and difficult to deal with at first but as I became more knowledgeable about dementia and how it affects the brain and was finally able to reach out and talk with others instead of keeping it all to myself, I learned it is part of the disease and it changes people's personalities. The best answer is to know that it is not really the person that you have always loved doing this b/c if they knew they were saying such things they would be as hurt as you are, but it is part of the dementia that is not totally understood. I am just thankful that I finally found an assisted living faciilty for her that is acceptable. They take wonderful care of her and love her so I know she is in good hands. If this place had not become available, we both probably would have ended up either in the hopt or a mental ward or something. I was losing my mind, although I continually prayed and the Lord did answer, as He always does.

So just know that through pray and faith, you are not alone, and I know you know that because you have shared it at previous times. Have a blessed day. MLC
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Hi Sharon,

I wrote a little something to you the other day but apparently it didn't get posted. It's been a long time since looking at these message boards but they are so helpful. It's a place to vent but it's also a place to share your heartaches with others who are going through similar situations. It's just wonderful to know you are not alone. So if you want to expand a little bit as to what your situation is there will be someone to give you encouragement.

When I first looked into this message board I had been a full-time caregiver for my aunt for going on 3 years, 24/7, and it got to the point where I thought I was losing my mind. She is now in an assisted living facility, which makes it much better for both of us, although she doesn't quite understand why she can't come home but we just go a day at a time. I still see her frequently. Good luck, though, and feel free to share. You never know what resources might be available to help. MLC
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Don't let what he says get to you. As caregivers we are the ones who get the anger that our love ones have. We there. We become the punching bag. My mother who is 92 now still has moments when she may say things to me. I choose to smile and say I love you. Love yourself. Your beautyful own it! Say it! We have to find ways to just smile thru it all. We are caregivers and we rule!
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I had my husband tell me something bad this morning but I didn't let it get to me. I hate it when an ill feeling sadness comes over me because of another's words they said to me. This is so important: don't dwell on it, don't think about it because the more you think about it the more the hurt stays with you and the hurt continues. You don't want that. Please force yourself to go forward and think about the upcoming days work. Please continue to be on this board and tell more of your story. I am sure there are more people who can give you uplifting input!
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I am 55 years old in Dec. I will be 56. My husband says I look bad. I am a nurse and work very hard on the job and at home. He hurt me so very bad by his harsh words. What do I do.
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We have moved, and I love it out here. We live in Texas and I am going back to work now. He is going to Jan Werner and it is great! It is nice to go back to work and see my buddies! So far, my husband is improving and doing very good! I had looked over these boards and just don't see much activity. I know that I hadn't gotten any responses in along time. I, personally, love communities and forums because if you don't get out, or can't, this is a way to still be able to talk to others who are going through the same thing. Caregiving. How are you doing, MLC? And Steph, how are you? I really miss hearing from you guys.
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I forget who said they had to retire to be a caregiver early, but I started another post because I became fearfully aware of my finances and our financial situation. I hope you look it over, because if I have to eat cheaper, which some of us already are doing, or make adjustments to do this, it is worth even consideration! Please check it out. I am dreadfully afraid of investing because I am really afraid of stocks and the market is totally foreign to me. But, education on this subject will enable us financially! If money makes you sit up and take notice and want to do whatever it takes to survive, then this will make you do the same thing!
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Steph,
I know that I needed help with relatives, and I would hint around that I wasn't getting any help and that it was really difficult. I just can not just come out and say can you come up and help out. However, I did, once ask if they could come up and sit with him just any time would be great. I just have a hard time asking for help. I guess I might feel that I am imposing on them, even if they do live out of state and some just live in another town. But, I did press onward and do what I could with what I had and things are looking better. I did check into medicaid, medicare, and Jan Werner. It is sounding really promising for Jan Werner. It is an adult day care center in Texas. They will watch him, feed him, give him medicine, furnish him VitaLife, and just really great to know they exist! We will hear from them this week. I sure hope they accept him. I learned with medicaid, I would have to pay for the 1st 30 days and then they would help. And I just couldn't afford that! Anyway, thanks alot for your help. I will hang in there.
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Hello MLC,
I live in Texas, I now realize I didn't answer that part of your question. It is so nice to have these boards! We have moved. We are in the country and the neighbors are quiet and nice so far. I did go to an organization to see if they could help me, Jan Werner, and we are going to hear this week. If they accept him, I can go back to work! I was afraid I was going to have to retire and just did not accept that thought. I have learned that I must not accept just any thought that enters my head. I told myself that I wasn't going to go there, that there was still something out there for us and prayed for it. It sounds like 36 hours is a good book. And you are enjoying reading it. You also sound very compassionate in the way that you are willing to retire and care for her. You are so sweet and loving! Stay in there and I will stay in touch.
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