Hope I Can Hang On For Them

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My first time on here. I read a article on here somewhere and she said "shes driving me crazy!" that's me but in my case "he's driving me crazy!" I couldn't help laughing ( I sure needed that as don't laugh much anymore. I am primary care giver to my father with Alzheimer's and prostate cancer. And also a brother with neck and lung cancer. I had to take my father in about a year ago, just after getting myself together after husbands death from cancer. Her statements of kitchen closed and "this isn't the Ritz" got to me as when asked for a milkshake for breakfast when I've made pancakes (from scratch) to him I give a reply of "nice to dream." And many times I've said this isn't a restaurant when he wants a meal made in seconds. I've said if you want it raw I'll bring it to you now then. The crazyness goes on and on. Like him emptying out all of closets and drawers and piling the clothes in a mountain on his bed! I finally had to give up on putting them all away as he does that over and over. I'm to tired. Wash him,cut his hair, nails, dress him and as said wait on him hand and foot. The bed has to be changed every day and sheets washed as totally soaked even though I duct tape 2 extra large bed pads on and have him in pull ups and a extra pad inside. Also he is very hard of hearing and my voice is almost gone from yelling the same thing over and over for him to hear what I said. Might as well talk to the wall which I've done a few times.
My nerves are shot. I call myself Slave Girl now and seem to clean pee and the other all day and waiting on them hand and foot. I've heard that care givers sometimes die before the person they are taking care of. And I can see why now. I don't know how much more I can take but keep trying. I also took care of my mother for about 10 years while trying to raise a young child. It seems that thats all I have done for half of my life is take care of everyone but no one else would.
I have health problems and need care myself and often ask who will take care of me? Never had a reply but I am the end of my family line. So there will be no one there for me after all I have done for others.
I love my family but I'm going insane and cry quite often. I don't know why I'm writing this to strangers but I'm so tired all the time and possibly don't know what I'm doing. Maybe venting a bit. I don't know anything anymore as my head seems to be spinning from everything. And counting out pills for all every day, including my own.
My father was always so strong, we would have a few beers together, go to the casinos , laugh. I took a picture of him when he was 90 drinking what was to be his last beer as "lost his taste for it." I love that picture. He's 92 and 1/2 now and such a different person. What happened , I ask myself. I'm tired and probably regret writing this for the world to see. But I think I may be losing my mind possibly, so sorry if this bothered anyone. What stage is this I wonder on Alzheimer's ? Doctors are even more confusing with what they say as all different.

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Ok - first things first here. You need a break that is for sure. You deserve a break for your own sanity. I always tell people you have to take care of yourself to or really first to carry on. You are doing a wonderful thing to love and care for your family and one day of course you will be glad you did - the "have no regrets" feeling. You have to take breaks WITH OUT GUILT! Not yelling at ya just stressing my point looking after your well being to. Let me say I speak as a professional care giver and a family care giver. I do not know what your ability is to say hire some one to help out like a respite break, but even if you took a few hours a day for you to go out and shop or what ever you have to do to get a break. If you have the ability to have another family member or friend or some one close to you to ask for help do it. I have known family care givers to consult nursing facilities about a respite stay for families to take a vacation or other things they need. This seemed to work good because it was only for what ever time was needed to go away like a week or two or even a day or two. I am not sure how this would work from an insurance point of view or if it would be out of pocket costs etc... but for sanity sake you need to have your breaks to function good in life and remain effective. The facility idea is only suggested if that was something comfortable for you or them or again if you have the means hire some one based on what you can afford for an occasional break. Facilities will have rules whether you agree with them or not about things - they have guidelines to follow so look in to one that may not be so disagreeable to you and make sure of course they have a good state rating, I most certainly agree with that, for your health sake work with some of the good places that make you feel comfortable about their care standards, just saying if this was an option. I hope you can understand where I am coming from about this. Dealing with Alzheimer's and Dementia can be a real challenge trust me I know. This is my main area of concentration as a CNA. I do not know what level of training you have in it other than helping dad, but there are support groups and reading materials that can assist you in the deeper understanding to this horrible disease and how to manage with it, but no matter you still need breaks and some one to help you with the responsibility. My thoughts are what does your doctor suggest to you. I know medicating is not some thing most people want because you do not want to snow dad, but does the doctor have dad on some thing to at least level him out some? When you deal with Alzheimer and dementia issues it is complex because there are so many things to deal with. It goes beyond the inability for dad to reason and understand as the disease progresses and dad could get more agitated or less agitated and the more care that is required. I am sure you most certainly understand a lot of these things by now for as long as you have been dealing with this situation. I think if you consider getting a paid care giver for some respite relief you will began to feel better in time as you start taking time for you. I do not think you are loosing your mind, I think you are stressed out and not feeling good compounds it severely. If you are getting health wise unable to care for dad you may need to simply place him in a quality nursing home for good. You can still be there and participate in his care and every thing else. Guilt is not what you need to feel because you have did every thing one person can do and you venting and getting responses from all of us who understand will help you not only feel better but help you in resources and options out there. So I hope I have helped with my input. I know every one see's things differently dealing with this stuff but I know what I have seen from people and dealing with families and their issues in care settings and at home as well as my own personal feelings with my sick mother who I love so so much, but you may need the support of a care facility. You will find things you will not agree with from all of them - you will not get around that simply because there is no perfect place, how ever there are some really nice places that do great and provide next to perfect or above standard care if you look at the surveys and talk to people in the facilities like other family members to get some feed back - just do some standard research on this matter it will help a lot. Some times the right choices are the hardest and that is no joke by no means, but your no good to them if you get down worse FACT! So please consider your health and what help is needed for all of you including yourself.
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Slave girl, we do have to take care of ourselves. I know what you mean about putting it on email for "all the world to see", but this is where you get support. I just joined as I too feel guilty but have had no life as I have taken care of lots of things for my parents (brother got all the credit), but who cares at this point. Dad died, mom went to nursing home with him a few weeks ago, then after he died she took all her things out of the drawers at the nursing home and said, "I'm ready to go home." However, she was starting to "go home" down the street right before dad went in the hospital. She was wanting to go to her parents. They have been deceased for about 34 years. She will fight you when she makes up her mind to go, so she was not safe. She keeps asking about her parents, and doesn't believe they are dead. It is all so confusing. I had to move her this week to another home with a lock unit for Alzheimer's. We aren't 100 percent pleased, but don't know what to do at this point. Sister works full-time. My brother is so much younger than me, but he has bi-polar and loses his cool easily. He lives with mom and dad, but when he is good he is very, very, good and when he is bad he is horrid.

Remember on an airplane, they tell you if the plane is in trouble 1st put your oxygen mask on yourself in order to help others. If you help them first you will lose your oxygen and not be there at all to help.
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Thanks for the replies. Yes, I've made calls but there are problems usually or complications with places that I've called. Looking into a place now that will take my father few hours a day but I don't agree with some of their rules. But thanks and I will keep digging into getting some kind of help.
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Slavegirl,
You are not alone. You will find plenty of caregivers who are experiencing many of the same feelings and situations on this site. This is the place to vent and know that you are totally understood.

Also, if you're in an area that has an Alzheimer's support group and can get away to the meetings, you will find huge support there, too.

You are doing an amazing job to keep up day by day in an overwhelming situation. Keep posting and reading others' questions and comments and you'll know that you're not as isolated in your "craziness" as you think. Hang in there.

Alice
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Slavegirl, you can't keep this up. Statistics show 30% of the caregivers die before those they care for. And you just lost your husband? You've had more than any human being should have to handle.

Please go onto your state Web site and type "aging" in the search box. Find your state's version of the National Family Caregiver Support Program. These folks should have some clues as to what kind of help you can get through your state.

However, it sounds as though you may have to get each of them onto Medicaid (if they have no real assets), and your dad, at least, may need a nursing home.

Please, please do something, before your own health it totally shot or you die - then what happens to them? This is urgent. Find support. You can try calling 2-1-1 and see if your state paticipates in this online help service.
Take care of yourself before it's too late,
Carol
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