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I have been my mother's caregiver for the past year. In this time, I have changed. I look awful, don't sleep, have lost contact with friends and family. I have a worry/ guilty feeling all the time. The good news is that I have a wonderful husband, very good back up help for her during the day when I am at work, and people who I can talk to. Is there something wrong with me? Why isn't that enough? When I do get a chance to get away, all I do is worry. When I am with her, she accuses me of being conrtolling and demanding. We fight all the time because she alwys feels like I am ordering her around. She cannot take her medication on her own, never knows the days, looses her money and bills, has let herself go. She never gets out, watches TV all day. She is critical of others and is not willing to do anything to help herself. She is 77 years old and in ok physical health but I am concerned because she gets NO exercise what so ever, eats primarily junk food and does nothing for her mind. She watches talk shows and reality TV all day and all night. I worry about this constantly because I fear she will only get worse if she doesn't do anything to help herself. I am obsessed with trying to come up with ways to get her to want to help herself. I am convinced that she is very depressed and that she needs to see a psychiatrist. She is currently on Cymbalta for depression and Arcipt for her memory issues, She has been diagnosed by a neurologist as having beginning stage dementia. Is it too late? Is there anything at all I can do to get her to cooperate? Will I ever feel happy or peaceful again????

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My 87 year old mother has been living with my wife & me since December 2011. My mother-in-law has been with us for the last 5 weeks. So we are newbies to this whole caregiver role. Both of our mothers have various medical issues including daily diarrhea, dementia, heart problems, diabetes, mobility problems, hearing, eyesight, etc. Both have different dietary needs & restrictions. Our home now looks like an assisted living facility. Trays of meds, B/P machines, diabetes test strips, etc. now cover our kitchen snack bar. We have taken up throw rugs, removed coffee tables, etc. because both of our “girls” use walkers.

Will there be a time that I can relax? As so many others have expressed on this site, respite care time is absolutely a must. In the last 4 months we have been able to guilt relatives into giving us a respite day just twice. On both of those days my wife & I had guilt feelings before we got to the end of the driveway as we left our house. Once we got away from the house we had to remind ourselves that this was our time to relax, to unwind. It was sort of like the feeling we got years ago the first time we left our little baby girl with a baby sitter while we went out to supper.

I think parents never totally get over worrying about their children. As caregivers we never get over worrying about our loved ones. I fully well expect guilt feelings even after my mother passes away. I'm sure I will wonder if there was anything I could have done to make her last years more comfortable. Initially I had those same feelings when my dad passed away, but I came to realize that because of the sacrifices I made in his last years I will never feel the regret that some of my siblings have now.

Do I enjoy cleaning the bathroom toilet, floor, walls, etc. after an episode of diarrhea goes terribly bad? Of course not, but I also know that there will be a time that I wish it needed to be done again. I know that there will be a time that I wish I could see the child-like smile that I get to see every morning when I wake my mother to tell her that breakfast is ready. There will be a time that I will miss the bad as well as the good times.

There will also be a time that I will be happy .... happy in the knowledge that my wife & I did everything we could to help our parents through this difficult phase of their lives.

I have faith that God has a special blessing for caregivers.
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My advice to you is that you need to accept Mom as she is instead of trying to change her. That dementia causes subtle changes that you may attribute to her lack of cooperation. I see that in my Dad; it's like they can't really help themselves. But it comes out as plain contrariness. Perhaps it would help to redefine your role in Mom's life. I find the biggest challenge is to allow them to function independently as much as possible but still know the right time & approach to "taking over" certain areas. Being a caregiver takes tremendous mind control; sometimes I'm successful and sometimes I'm not. However, I strongly urge you to learn the art of what I might call "mini-vacations." Have a store of little things that are relaxing to you. Make sure you snatch a few minutes several times a day to indulge in those things while reminding yourself this is relaxing time. I don't know how you feel about the Bible, but the Lord has a great philosophy for us in the book of Philippians 4:8:
"...whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things."
This is a difficult journey, but it is surely possible to make it and be glad that we did all we could for our parents! Let go of your guilt; don't expect too much from yourself.
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I was my mother's primary caregiver. She had Alzheimer's and for a year I lived with her for a year before I moved her out of state and into an assisted living facility closer to my home in CT. I feel your frustration and while there is no magic solution, I would start with one very significant suggestion and that it to come up with a plan for yourself which consists of baby steps towards accepting a new and different relationship with your mother. If she is at early stages of dementia, she is drifting in and out of a world that she understands which accounts for her behavior. She doesn't know how to cooperate with you because the world that she knew is drifting away from her and she's scared. As crazy as it sounds, you both need to figure out a way to 'embrace' the new rules as dementia moves in. It's tough - I know. I lived it. Highly recommend reading my book: Alzheimer's: A Mother Daughter Journey. It's a photojournalistic book available through Amazon. Celia Pomerantz
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Caregivers share something with parents: a part of their brains seem to always be with the adult or child they love. I think that type of anxiety is part any person who truly loves. That being said, anxiety is wearing and can make us ill. This site has made it possible for me unload a part of that anxiety at times. Exercising is vital and having some new interests and personal indulgences help. Please stay in touch with us. A lot of us are up in the middle of the night. :)
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I am sorry to say the answer is NO. I cared for my mother for many years before she passed away in January. I would do it all over again if I could have her back, but I felt all the things you are feeling. Worried, guilty, very tired, emotionally trained. I loved her very much, but she could be trying. Anywhere I went, I had to let her know because if she didn't hear from me every morning, she would call my children, my friends, anyone she could think of looking for me. When she found me, she would tell me how worried she was and make me feel so bad. My advice to you is to do what you can do and not feel guilty for what you cannot control. How she feels, what she does or doesn't do is not your fault. I send you hugs and will keep you in my prayers.
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In addition to what cpomerantz posted - try to keep in mind that you are doing everything you possibly can - this is unchartered territory. My mother had to try different medications for depression until finally one worked. It is a process of elimination. Depression can be caused by so many things; but with my mother it proved to be a chemical imbalance as once the correct meds were established; she was so much better. Try to find some peace in knowing all you are doing for her; as for happiness - that still eludes me. Hugs and take care.
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Thank you Dandradawn. I am sorry about your mom. I cant even imagine what my heart will feel like when that day comes. I don't even remember what my life was like before all this...
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Debi306, I totally agree. If I could just shut it all off at night... I was taking ambien for a while, but started worrying about addiction and being too out of it to cope with anything if it actually did happen! Sometimes I will drink a few glasses of wine, but I have the same concerns and dont really get a good sleep. Taking an over the counter sleep aid helps. I try to eat right and exercise too, but you know how that goes... never enough time. I am sorry that you are all alone in this. My husband travels occasionally and I feel very alone and anxious when he's away. I can't imagine how you do it. Please know you can write any time. I am awake most nights!
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I have to talk to a therapist because between my husband and raising 2 kids i am emotionally exhausted and empty. I have trouble empathizing. I miss the need to empathize with someone but no one empathizes with my need. There is also the factor of adding 2 extreme dysfunctional families into the matter. I limit my responses and I make an effort not to answer the phone because they want to nose in what I am doing for my husband but are all to far away to be "there" for me. I had a caregiver helping me before I became my husband's caregiver. I am also his rep for his monthly checks and the kids supplemental checks. I make a small check to do the work I do. I have to go thru the legal mumbo jumbo every 3 to 6 months and once a yr. I do get burned out and i do feel lost; its like i am stranded in the middle of nowhere and i can't figure my directions. I have alot that goes on but I manage it. I also journal when I have the time which I havent in like 3 wks and then the notes I take at the doc appts. So yes with my husband epilepsy might be some dementia but its not that noticeable yet and when he has this surgery to remove a infectious fluid sac from his lung...I do not know how much care he will need after. I am just under 40 yrs of age and my husband will be 46 soon. MY children are 7 n 5...I do not know how well they continue to see this. Pretty soon the children and I will be having family therapy sessions to help them cope with this stuff and for us to learn to communicate and express awareness better. My prayers go out to you to those that do a job no one wants and knows that god is blessing you all just like he is of me. Peace N God Bless.
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I just want to make a comment. I am the caregiver of my 92 yr old mother. Her wish is to never go I to a hospital no matter what. She has been living with my husband and I sine my dad was killed in a accidentnin 92. My mom has had many strokes that caused her speech to end and swallowing difficult . She chokes and coughs constantly. I have slept next to her for the past 4 yrs since she began to decline in health. I am also in the medical profession. I can honestly say I have not had a decent nights sleep a more than 4 hrs since that time. My mom walks with assistance always and with a walker. I sometimes find her up and trying to walk by herself and me screaming, swearing at her to never do that again. She sometimes write terrible notes to me that I am poisoning her or trying to kill her or stealing from her. Believe me I felt hurt and could not stop crying, but I know this is not my mom but th dementia that goes in and out. I am learning not to pay attention to it because she truly does not mean it. I am very lose to mynparents and no matter what age my mom is I am havinga difficult time seeing her decline. I am Catjolic but really not practicing it. But I guess I have to believe that I guess, we will see each other again. That's the part I just not understand. Nevertheless, I find solace just by taking a. Bower, sitting in the bathroom, if I could, for 10 minutes, going to work for just 1 day. But just like the caregiver above who said they'll miss not only doing the good for their parents but the bad. I also deeply feel the same. I just can't complain. But somewhere in the bible it does promise that those who care for their parents on earth will find a place in heaven for them. That's what I'm working for. So our blessing will be heaven
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