What is Caregivers
A voluntary caregiver is the modern terminology for an unpaid spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and ass...
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Just need to vent
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Some of you know me and some don't. I have been around here for a while. I have wrote a journal this morning that I thought I would post here for others to read and understand what I am going through and what a lot of us go through.......
I write this journal not for pity or for sympathy from people. I just need to vent on my thoughts right now. As many know my hubby has early onset dementia. I have coped with it pretty good up until this past week. We had finally got him on meds that I thought was helping him. But this past week he has gotten irritated and angry again. I had a real slap in the face last night when he became upset and he started calling me a ‘cunt’. I have no idea what or why he was angry but I got the brunt of it. I usually have let things roll off my shoulders, but for some reason last night hit a part of me that was not expecting it. Maybe because he has never said that word to me before. I know he was not meaning it, it is just the disease talking, but it really, REALLY, hurt. I love this man deeply and we have been married 27 years almost 28 soon and he has never before called me that word. Sure we have had our arguments over the years, but never was that word used. Name calling just did not happen. He has been very irritable lately and angry about something, something that is stuck in his mind, that I will probably never know why or what. I hate this disease, I hate what it does to our loved ones. I thought I was prepared for things to come. I watched my father go through this with Alzheimer’s, I seen the force of it, I just thought I was ready for things to come, But I guess not. I have seen so much already with Randy and tried to show as much love and strength and to keep a positive attitude, but when that word came out of nowhere, it shocked me. I know it was just a word and words should not hurt you, but that one did. This past week or last few weeks have taken its toll on me. My MS has really flared up. I am drained and I have over done my self. But, I have to just keep going. I got to. I dont have time to take a break or break down. My body is telling me I have done to much and the stress has taken its toll. I have extreme pain and balance problems with other symptoms, but no time to let them take full control. I ask myself all the time why me and I ask God the same question. I know he has not given me more then I can handle, but right now I feel that he has. I tried this past month to move the family back to Illinois, but when it came down to it was told by his family that they didn’t want us there. They don’t want the bother. How dare them!!! All I wanted was a little support sometime, but that would invade their time….stuck-up snobs!!!!!!! All I want is to have my family back the way it was, both of us disease free, happy and loving again. So, I sit here wondering what else is to come and of course it is taking a toll on me. I have been up since 4 am thinking and crying. Thinking of the past and all of our memories, our happy memories, our lives in general and what the future will hold. All I would like is to have support, to let me have a moment to myself, or someone to sit and have a cup of coffee or tea with, someone to go to the store with, or someone to take Randy for a ride or walk for me, anything. All I have up here is my youngest son (which is my rock and which it is taking a toll on also) and his community of friends. I have no friends of my own up here and I have been here for almost 6 years. I have just not been able to get out and get any. I am stuck here 24/7 dealing with our lives and for the most part never complaining, until times like this. I just need another adult human being to be around sometimes to keep me sane and to be a friend. Like I said in the beginning, I am not looking for pity or sympathy, I just need to vent right now. Thanks for reading and listening to me, and pray for us. Sue Posted on 05/26/08, 10:05 am |
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Venting is OK. This is a safe place to do it.
If you haven't called the Alzheimer's Association hotline (24/7) do it. They will talk you down when you are upset and give you good advice too. I wish I had done it sooner. 
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I do feel for you i guess every woman feels thats the worst name you can be called but it is not your loving husband it is the monster of the disease.I told my kids years ago if i get it to please have the decency to get someone to help me in killing myself although i'm totally against suicide.But i would rather die of cancer and know who my loved ones are than in a world where i can no longer tell someone whats hurting or whats bothering you.Call your local hospital ask for hospice care if they come to your house then medicare pays for everything.Nurses come everyday and give you time for you.They are awesome please check into it asap. and remember your husband didn't say that love kalei
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you need respite....not sure where you live but and sure the hotline ImAStar gave you can lead you in the right direction. oh, and shame on you and your husbands family, i know the feeling, after mother had her stroke, i went from having 5 siblings to an only child, odd how that happens, eh?
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It's horrible that your husband called you that, but again your husband has ceased to exist and another crazy person is in his place.
My situation is different, in that my husband had a stroke, but has dementia and obsesses. I would almost rather be called nasty names than to have him call me 500 times a day-get me chap stick, get me my back scratcher, I need athlete foot cream, I need a shower, I need a pillow under my head. The list goes on. He wakes me up at night over stupid things. But he really obsesses compulsively on one thing and asks for it over and over and over. First it was hemeroid suppositories, then it was watching the "Godfather" over and over all day, then he could only eat hot dogs. Now it's white wine. Although he did not drink alcohol before his stroke, he could now drink a gallon a day if I let him. When I say "no", he doesn't get mean, but will persist, so no one can get any sleep or peace. Last night had I just had to get away for a little bit until his sleeping meds took effect, so I went for a walk and ended up twisting and spraining my ankle. Although I'm hobbling around and it's really painful, the demands don't stop. I'm venting here too. But I feel I can't go on living this way. My husband died a year ago when he had the stroke, leaving us in a very tenuous financial situation. I have to do whatever it takes to build a new life for myself. Take care. My thoughts and prayers are with you. Christy
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The real problem with caregiving for dementia, and a lot of other diseases, is that there is no moment in time when you can take it for granted that you will be left alone.
There is no peace. You always have to have one ear open just in case the person you are caring for does something weird. Even if that person almost never does anything dangerous or anything that could break something, every once in a while there is an incident. And you always have to be on the lookout for it. Always being on alert is exhausting. And that is true even if you aren't dealing with someone who is calling out for you at all times of the day and night. I really feel for those of you who are dealing with that in addition to the constantly being alert for problems that might occur.
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Do call the Alzheimer Association; you have nothing to lose, do you.
I've been in your shoes and worse, my husband one day screemed at me and said "I want that woman out of my life" after I've been patiently taking care of him for over 11 years! It hurt but I knew it was the disease talking. Your wrote: " ... I ask myself all the time why me and I ask God the same question. I know he has not given me more then I can handle, but right now I feel that he has..." YOU MUST NOT think that way, it will destroy you. This is a Christina catch phrase with the hidden meaning, shut up and put up. That will destroy you. What you are going through IS more than you can bare and, as the other posters wrote, you need help. Please, help. Claire
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