Been caring for disabled mother in my home 4yrs - would like support group.

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I am 38 and been caring for my bedridden mother for almost five years. I am an only child and moved her in after my father's passing. My marriage didn't survive and it seems like it is getting harder every day. I love her and don't know why I feel such strain lately. None of my close friends have dealt with this issue. What little family I have doesn't offer assistance. A visit here and there, but nothing to speak of besides that nothing much else. I have been needing some support system of people who understand where I am at currently, possible future issues to come. I hope I can find someone who knows how I feel. I have aides who come so that I can work during the day. But it has become to the point where I feel I cant continue. I have no kids, which makes me feel it shouldnt bother me to care for my mother. I feel like my life is stuck in a mode that I didn't choose, and have given up all hope for a life I want to live, but can not. I know this may sound selfish but I hope to find one person who understands something to give me hope, I know her being with me is what she needs but I am starting to feel angry bitter and guilty. She has gotten more needy of my attention this last year since my divorce. She used to want me to do things and said she wasn't going to move in unless I continued my life. But that just hasn't happened. She is gotten worse, and I feel like I need to have a life too, I have given up many things and now I don't know if I can continue to be the "good daughter" sometimes I think she would be better in a nursing home, but I know I would miss her and feel even more guilty as I promised my dying father I would take care of her. And what point do I get to live again? I am stuck? Will I never have a life that I choose and not what was given to me? Please any advice would be so appreciated. Thanks you

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Onlychild - I don't think I can say more than to echo what so many others have said, especially what onlee1 said above. I am so sorry that your marriage fell apart because of this, but you still need to have a life. You are still young enough to marry again if you choose, to have a family, a social life, travel, whatever you want. If your mother had a terminal diagnosis it would be one thing. But it sounds like she could go on for many years in this condition and then what about your life? What about all the opportunities and experiences you've given up that may never come again?

You are a good daughter, and you will still be a good daughter if you place your mother in a facility and make a life for yourself in your spare time. Don't be afraid to be alone for a while - other things will come into your life when there is room for them. Your mother may not see that you need your own life but that's no reason for you to not see it. You need your own life, a life beyond working a job and coming home to caregiving for your mother.

Another thought about empathy, which has traced through so many posts on this thread. Many/most of our parents have said that they don't want to be a burden and want us to have our own lives. Some of them have actually meant it, but perhaps without understanding what that would mean - that they would have to manage with less help or other caregivers, maybe paid ones. In many cases, elderly people seem to simply lose empathy for the adult children who give up their own lives to take care of them. They start to excuse and rationalize the situation - "Well, I took care of you when you were little" or "Well, what else can I do? I need the help now."

It doesn't matter if they lose empathy for us or if they never had any to begin with. (The opinions of uninvolved family members who lack empathy don't matter either.) We can't afford to lose empathy for ourselves, or get so immersed in their problems that we take on their perspective, because their perspective has narrowed to include no interests but their own. We can't wait for our parents' blessing to go on and live our own lives. We need to give ourselves our blessings and then get on with it.
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Hi....I read your post and couldn't believe how similar we are, it could of been me writing your post. I too am sole caregiver for my mother who is 66, I am 44. I am the only girl in our family and so when Mom took a stroke 3 years ago it fell upon me to 'sort' things out. My Father passed away in 2001 and I also promised him if anything was to happen to Mom I would take care of her. When my mom had her stroke she was in Hospital for 3 months, I found mom a care home literally 5 minute walk from where I live, I continued to work full time (support worker for adults with learning difficulties) and see Mom every day. My brothers, especially the youngest, started to make me feel guilty that mom was in a carehome, so after talking with my partner we decided to move mom into our home, I had many adaptions made, gave up our main living room and turned it into 'moms room'..My mom has very little speech and movement, so conversations are almost impossible, its basically a guessing game until I work out what it is mom is saying (this can be very frustrating after 20 mins) for both of us. I do everything for my mom, cook, wash, shop, haircare, clothes shopping, medical appointments...You get the idea. My partner works full time (support worker) and I still work part time, this was to allow me some hold in the real world! but its not, its constant 24/7 care, even in my job. My partner helps when I am working other than that I do everything, even when I am poorly myself. I dont blame my partner, that was the 'deal' I would care for mom. I feel guilty when I moan cos I too have no children and think, why is it so bad for me, my stomach sometimes knots when my mom shouts 'yehhhhhh' cos she wants me for something. Before moms stroke I worked full time and did very little with my 'spare' time so I feel if mom was to go into nursing again would I feel guilty for being at home with nothing to do (so's to speak). My relationship is suffering, Mom knows I am struggling but she no longer feels empathy for people, think the stroke took that away from her. I just dont know what to do anymore? This is the first time I have reached out...and even this makes me feel guilty :(
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I am not personally caring for an elder at home, but trying to help from miles away. This is a great site for you to find - so many people are in your situation and will have great advice and practical suggestions. You seem so young to have given up your life and is it necessary to do so? If your mom was in a great home that would provide for her physical and medical needs and you were able to have a life too, why would that be wrong? You would still make sure she was cared for and be her advociate, you would have a team of people instead of just you 24/7 - that is probably better for her. You would still be her loving daughter - seeing her, spending time with her, helping her. Read the stories of people here, prayerfully consider options and the best of luck to you.
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Another call you should make is to the local Agencyon Aging, usually within the Council of Governments. They are an absolute wealth of good information!
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Tigger, there are elder law attorneys that specialize in Medicaid planning and know the system to get through the VA quicker. But I would start by calling the VA yourself and ask for assistance. Benefits are supposed to be expanding, which sometimes causes problems because nobody is quite sure how toi!plment the new rules yet. Good luck.
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Thanks gladimhere. It is very hard and actually we just talked a little bit about it. He said he would move out but not sure where he would go. Which just adds the guilt on to me even more. But we are going to try and do something. I also found in my research that they do things for vets. Things I've never been told before. And both my father and I are Vets. So hopefully we can get some help.
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Tigger, you did fine. It is a very difficult sitation under any circumstances, but at your age much more so. Yes, you are a good daughter to care for your Dad, but what woukd he want you to do? I think most parents woyld never want their children providing the type of care that we do. They woukd want us to live our lives. Yes, a assisted living facility ot nursing home are necessary when there is not enough cooperation from other familly members. We are getting close to that point here, don't know how much longer it will be.

Take care of yourself and come back often, read and post what you want when you are ready.
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I am not good at writing on things like this. However, I can say it but I can't seem to follow through with it myself. Take care of yourself!!! Do what you need to do for yourself. I am 33 years old and have 5 siblings and no kids. I have been taking care of my dad for 5 years now. My siblings barely help. Most of the time it is only when my dad or I practically beg them for it. There are 14 grandkids and they don't really help either. The last couple years have gotten horrible for me. As of right now he only has heart problems, overweight, diabetes, chronic back and hip pain, a torn muscle in his left arm, and is legally blind. LOL I say only but that is because I think (and we are going to talk to his doctor next Tuesday) that he might have the early signs of Parkinson's disease and he seems to be forgetting a lot lately. Which his father had Alztimer's. I have been told by many people that I need to find a support group to go to. That is actually how I came to be on here. In my effort's to find one I came across your story and it hit home for me so much I am actually crying. I have to drive my dad most places. He does take a bus sometimes but then I worry about him. I have to load and unload his walker, pay his bills, help him around the house, clean up after him, change his bed, do his laundry, help him into my vehicle. It GETS VERY HARD!!! And yet I have people (different family members) telling me that I can't put him into a home. Which just makes it worse because these same people either don't help at all or hardly help. And many people tell me what a GOOD DAUGHTER I am but some days I get grumpy with my dad for no reason and then I feel bad. Sorry I strayed. It felt good to release some of my stress though. But I do understand where you are coming from because I have not been able to have a life, boyfriend, many friends or anything since I was 28.
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I am 38 as well and attempting to take care of my 67 year old Father who appears to have early-onset dementia. I was warned by people very close to me that being a caregiver is not the life I should choose. They too were caregivers and they felt they gave up their own lives for the role. Morally however I am bound. I refuse at this point to give up my own life. When Dad's needs get higher, I am going to try and offset the additional time with aides. When and if that fails I may consider placement as the more I learn the more I see the caregiver is thrown under the rug. I don't' see us chained to them. We may need to re-work our belief structure. We may also need to re-work us.
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I to am taking care of my mother and am also an only child being that my brother and sister died at young ages, i am 56. My husband has been wonderful but see that i am tired and suffer from hypoglycemia. Mother is having a very difficult time with the the disease PD and see the disease progresses. So i have decided to join a few support groups for caregivers and attend some meetings as my mother can walk and do somethings for herself. The more knowledge I learn about Parkinsons the better I can make sure my husband and i can handle and when enough is enough for our health and marriage. Become very vigilant about your health and future, try a Parkinson group to learn the stages and what stage you cannot handle. Your are a strong and loving daughter for your mother and she knows it and she will be taken care of because you will do what is best for the both of you. Take care.
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