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I have now been caring for my father in my home since June. It was something I always knew I would do. I had no problem with it when my father was diagnosed stepping up to the plate and taking him in and rearranging my whole life to deal with his care. BUT now he is completely bedridden. He can not get up even to use the bathroom anymore, not even the bedside commode. It is bedpans and diapers. Hospice has been great about having a home health aide out five times a week and always making sure we have the supplies we need, but how do you all cope for such long periods of time. I have basically watched my father turn into something I dont recognize half the time. He talks to me differently and is so hateful sometimes. I know that it is this horrible disease that has made him so hateful but it doesnt help sometimes even though I know it. I think I am just wearing out. I have been cleaning him up all day because for some reason today he has not even bothered calling for the bed pan and has been messing all over himself. I just dont know if I can continue to do this. I feel horrible for even thinking some of the things I have been but I have been thinking them. I feel like I have been worn very thin. I have set up volunteers to get out of the house but then My father makes me feel guilty for going out, telling me before I walk out the door to not stay gone the whole time allotted because he is scared. How is a person supposed to go out and enjoy theirselves when that is the last thing said to them. Now it has gotten to where he has fallen a few times while I am out and that doesnt help either. My family members all tell me that I have done the best I can and that I should put him in a nursing home where someone can care for him better. I have a herniated disk and there are days when I have truly wished for him to say he wants to go into one. He refuses to have any more treatment and doesnt want to go back to the hospital or a home. I know it is only going to get worse from here on out so how in the world am I going to keep doing this??? Am I a horrible person for wanting to give up?? The worst part is I am not the only one it is affecting, It affects my fifteen year old son, and my husband too. They have bee great with help but we are watching our house turn into a hospital and watching our carpets being ruined by accidents caused by my father. I know that carpets can be replaced and things are only things but we just bought this house last year and everything was supposed to be so special for us and now it just doesnt seem so anymore. I am so sorry for rambling on about all this, I have only recently started reading the caregiver posts and I just didnt know where else to rant about this. I feel horrible because I have even wished my fathers life would end sooner than later for my own selfish reasons because I am so tired.....

Thank you for listening .. Shelly

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(((((((Shelly)))))))))

I have no advice for you, but please don't be so hard on yourself, don't feel guilty, you are going through a terrible, terrible experience! You and your father and family are in my prayers! Please come here and rant anytime you need to, sometimes it is the only thing that will get you thru it all!

Blessings

Betty

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Hi Shelly,

I understand your position completely. I took care of my Mom in my home for three months before she went into a Nursing home. My father was already there, so it was a little easier because she went with him and they share a room. She was not as bad off as your father, though (now she is). I think what your feeling is normal. I don't think I could take care of my parents in my home with my husband and two children and work full-time. All Nursing homes are not that bad. The one my parents are in is wonderful and they take very good care of them. They are only 5 minutes away so I can visit often. The nurses hug the patients (and me) and cry along with me. Don't feel guilty for your feelings. They are normal. You have a life, too, and a family to take care. I thank God for good nursing home care. It is a Godsend. Ask people about your local nursing homes or call and talk the social worker at the facility. You probably can go check them out, too. Remember you are not a trained nurse or doctor but you are caring for someone who is critically ill. Take care...

Lyn

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Shelly,

Your feelings are normal, do not blame yourself, your are only

venting, you are tired and even with the help you get, you still

have too much to do.

The sickness makes your father grouchy, and he may be scare

and that reflect on the way he talks to you.

Do not mind his remarks, they are not ment for you but for

the sickness he has.

Take care of yourself it is a hard road for all of you.

Prayers for better days.

Hugs

J.C.

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Shelly,

I remember when my grandmother was diagnosed with Alzheimer's. My grandfather had passed away of cancer a few years before and made my father PROMISE (Dad's the eldest of three) that he would "take care" of his mother... Gramma had always been adamant about not going to a home and my mother (the "hated daughter-in-law") took care of my grandmother until she was in diapers and beyond taking basic care of herself. THEN she was put into a home where she continued to slip away a while at a time - not due to bad care, but due to her brain wasting away.

BUT, seems to me that YOUR situation is different. Your father is perfectly capable of letting someone know when nature is calling...your father doesn't want to go to a home....your father is controlling even the time you are away from him... Sounds like you and your father need to have a talk and reach an understanding. Something like, "Dad, I know that you really want to be here around the family at this trying time of your life, but I can't handle doing everything. I need you to take responsibility for things that you can do to take ALL the burden off me. You can call me when you need to use the bedpan, and you can enjoy time to yourself as I need time for myself, too. I will be returning from my time out and you know that, please give me some time alone and I will be a better person when I get back. If I am constantly cleaning up and not allowed some time alone, I will burn out and you will end up in a nursing home since I will be committed to a looney bin. Let's work on this TOGETHER, like a team, okay?"

Anyhow, that's MY suggestion...

...and TRY not to feel guilty when you take time to yourself, you need it. From experience, when I was laid up and my spouse went to work, I was jealous. He got to leave the darn house, get away from the cancer, the pain, etc., and I couldn't - how not fair! I had to work through that - and when he would occassionally have a thought cross his head and bring me home a surprise like flowers or some little note, it helped ME. He needed his time away, I knew that - but I wanted some, too, and didn't have the "luxury". The answer for me was more drugs :wink: and working on recovery so I could get back out (yeah, just in time to be going through radiation and on "house arrest"). My mother did the Becky-sitting while I was recuperating - guess she had the day shift and hubby had the night shift.

Does your father have any friends that might be willing to sit and tell war stories with him while you run out? He may not even notice how long you're gone if he's taking a trip down Memory Lane...

Seems like I just rambled on and on - hope you got SOMETHING out of it!

Hang on, it's a helluva ride - but none of us really have much of a choice and the alternative sucks even more...

XXOO

Becky

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I think I have experience a little of what you are going through right now. When my husband came home ,(after working hard in acute -rehab,) partially recovered from a massive stroke, he was quite difficult to manage, very stubborn and impatient and sometimes said very hurtful things. I know he didn't mean to be like that, (he is a gentle man by nature,) most of the time he didn't even know he was doing it. He has since told me that when he came home from the hospital, he suddenly realized just how much he had lost physically. He was just so angry with himself and took it out on his "nearest and dearest".

It was also very difficult physically too, getting him in and out of the wheel chair and bath and to doc. and rehab appointments etc. Please don't blame yourself for your feelings. It is totally exhausting looking after a loved one in this situation. Try to "steal" as much sleep as you possibly can, I know that is easy to say, but you will handle everything better if you are rested.Take care of yourself,

You have been added to my long prayer list,

Lot of love,

Paddy

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Shelly,

You can't do this alone. Look into a Hospice residence, instead of a nursing home if you can. The Hospice residence we had to put my mother into was absolutely beautiful! The nurses are amazing and will be so comforting to your father. Sometimes family members can lash out on each other but strangers they will not say a mean word to. It sounds like the best thing.

Best to you.

Kim

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shelly

just my story and how I am gearing up for it. Mom was dx. last february with stage 3-4 and passed away in august 2003. it was 6 very hard months. she grew progressively worse almost daily and needed more and more and more. in the end she was completely bed ridden and only got around by wheelchair.

now dad was just dx. last week and chemo starts monday. i have fallen apart for the last week and contemplated pretty much ending it for me cause I thought I couldn't go through it again.

well after much help from these people here. I have decided "I gotta do what I gotta do" and in the end, however it turns out, I did my best and gave it my all. maybe someday that will count on my score to get into heaven. if not, i will be able to sleep at night with a satisified conscience.

shelly

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Dear Shelly,

First I want to send you a big hug! You are enduring so much and you need not forget about yourself. My dad is my mom's primary caregiver, but towards the end of last year I started taking on a lot of the caring myself. I was spending everyday a few hours a day over there. I also have a 21 month old daughter and I finally felt something had to give. I was headed for a nervous breakdown. I have started taking more time for myself, my daughter and my family. I still dedicate a lot of time to go over and take care of my mom, but I realized I can't give what I don't have.

Don't feel guilty about needing help...you are only human. There are a lot of quality nursing homes out there.

Know you aren't alone and that you need not feel guilty for your feelings. So many of us here understand. This is a difficult road to travel and one best not traveled alone and without help.

Hugs to you.

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Grix wrote what I was going to suggest. Ask the hospice workers if they have a residential hospice or check for one near you. When I was on the board of a local hospice we built a wonderful facility with private rooms, a window seat/bed for family members, and beautiful view out the window. It has two family gathering rooms, one at the end of each wing with a large fireplace, comfortable furniture, and a kitchen. This way there is someone to care for your dad 24 hours and you will be comfortable staying with him when you want to.

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