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Old 02-17-2006, 07:29 PM   #1
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Help... :(

my son found this site and hoped it would be a place for me to get help.I am 44 yrs old and the primary caregiver for my mom who was diagnosed with AD a year an a half ago. She is 82, and four feet eleven inches of fire.... She has been living with me and dh for mostly all of this time as she is scared to be alone. I have one sister who is six years older than me and we now no longer speak to one another because of this. She wanted to place mom in the nh two months after her diagnosis and me being durable poa refused. So after all of the begging for her to help and all of the tears of pain because I feel abandoned by her I let lose and unleashed all my hurt and pain and "gave her an ear full" so now she has decided Im really on my own so to speak... I work 42 hours a week at a bank where I have to smile and take care of people"s problems all day long and then I come home and have to spend the rest of my hours until bedtime depending on mom when that will be taking care of her problems of the day. I feel so much guilt all the time, maybe I dont still do enough, maybe I should not feel selfish to want my life back, I worry all the time about her, at first I almost killed myself running back and forth at all times of the day and night dragging her and that darn dog of hers and her bag of clothes.
Until I finally decided one day to just bring her here to my home and take away my dh's den and make mom a room of her own. At first she would seem content and then every morning she would be packed and ready to go home agian, no matter what I would do or say. So the journey cont. back and forth to my exhaustion would take over and I would keep her here regardless. Now it has been months since she has even gone to her house, they are sitting there isolated and closed. She went a few months not asking to go home and now it is starting agian every night crying, throwing things down, cussing me, making me feel like Im an absolute horrible daughter and her favorite thing to say to me"Im sorry i have been such a burden to you" Which kills me because it is the one thing I have never ever said to her and believe me I have went to great lengths not to slip.. I have lost 42pounds and went from a size 14 to an 8 and still going. Cant eat, no appetite and if I do I get sick. I am now on anti-depressants for the first time in my life but Im not sure it helps because all I do is cry and feel angry and hopless all the time. She doesnt think anything is wrong with her and the doctors have told me she will still be going physically when her mind is all the way gone. She is extremely healthy in all other ways. I feel guilty for wishing at times something would happen some cancer out of the sky would fall on her so she would not have to suffer at the hand of this horrible disease. I have researched everything and read all I can to get an answer anytime I can find it. My dh is tolerated so much and I thank god he loves mom and has been my arm extended in this. He trys to help me now with her finances and in other ways yet i worry because we dont get quality time alone like we should.. We still have two sons at home "college" and so our once big house now seems cramped at best. I took an equity loan out on moms properties so I can at least begin hiring help for myself and yet I even feel guilty to leave her with good qualified people.... She is very vocal about strangers and doesnt really want any help outside of me. If it were not for my son who introduced me to this board I dont know how I would have survived even this long. He has watched over her , kept her for me to have a break, and been my sibling in this journey so far. Now I worry all the time about him because mom walked 1/2 a block while he was taking a shower the other day scared him to death and the fear in his face forced me to hire help agianst her will. One week into caregiving and mom seems to do fine during the day when Im at work the caregiver seems to act like mom is just wonderful, until I get home the lady leaves and then mom starts on me until bedtime lately..... Tonight was one of the worse. She went to bed in her clothes with her teeth in her mouth.... just covered her up and she's snoring fine.... Lord help me face tommorow , one more night without being able to eat.... my nerves are shot and I dread the weekend. I'll go to bed now myself and cry the night away agian.. Tommorow is another day....

 
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Old 02-17-2006, 08:14 PM   #2
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Re: Help... :(

Oh Jess,

(((((((((((((((((((((hugs))))))))))))))) )))))) Welcome to you, although everyone here will be as sorry as I am that you need to be here. I'm so glad your son found us! This is a place you can say whatever you need to because we completely understand, in the been there, cried buckets, done that, and survived (or are surviving) sense.

I'm Barbara and I live in VA. My mother got AD in her early 80s and you can read my story (and the story of many here) by finding the thread titled Who's Who. My mother died in '04 at the age of 88 about 2 1/2 years after I moved her into an assisted living facility (ALF), then to a NH (nursing home) after she wandered away from the ALF. By then, Mom didn't know me, her own furniture, the church she'd attended for 30 years, day from night, how to read a clock (and a million other forgotten things), and probably didn't know straight up either.

First, you must take time for yourself and your family. It's not fair to you to work all day and deal with your dear ditsy mother until you drop into bed. You cannot reasonably expect yourself or your dear family to keep watch 24/7 over someone who may go out the door at any minute. You each need a break! Caregiver, care for yourself. Really, dear.

2nd, this is a NO GUILT area!!! None of us gave out loved ones this awful disease and, so far, none of us can cure it. We just do the best we can each day, make the best decisions we can because we love who they were, and refuse to feel guilty because we cannot do everything - including finding that cure.

Please look into adult day care in your area, if not an ALF or AD Center or NH (nursing home). In a day care, your mother will have pleasant, simple activities and a meal, plus she'll be safe, make other ditsy friends and have a good time. What could be better?? She would not want you to harm yourself on her account. Please give yourself permission to do that because someday it will become too much, too sad, too exhausting, too heartbreaking to handle. One day, it will happen. You cannot drive yourself 24/7 as she will need. It's okay to need help. It's okay for your mother to live in an ALF or NH where staff is awake 24/7. She will not care less. Not only that, but The Imposter is often mean, insulting, and says things that hurt. That's hard. As we say here, sad, but true.

From what you've written, it sounds like you're already about at the end of your rope. If you're not ready to move your mother into a facility full time, there are many places that offer "respite care" to give you a break for a week or more. Please consider that for the sake of your health. It's okay. It can even be for the best. Really.

Please visit the available facilities in your area, choose the one that seems best and affordable, and put your mother's name on the waiting list. When you give out and give up, you'll be glad you already did the research.

Since you have DPOA, you can sell her home to pay for the costs incurred by her care, if cost is an issue.

Sorry if I've been pushy or said things you'd rather not hear. Please keep coming back and talking with us. Read our stories. I'm sure others will chime in soon. Sally is in Australia and is usually the night shift here!

Again, welcome. Wishing you well - Barbara

Last edited by BarbaraH; 02-17-2006 at 08:18 PM.

 
Old 02-17-2006, 09:47 PM   #3
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Re: Help... :(

Jess - Hi and ditto Barbara.......we are all sorry you are here and have to deal with so much! After I read your post, it made me feel guilty for thinking my life was in the toilet! I don't care for an AD patient, but my 58 y/o hubby has memory problems and who knows where that will go. He's hard to live with! But I do feel for ya and glad you found this site. It is such a blessing. I kind of hurried through your post as it is late here and I am getting tired, but did you mention trying to get your Mom placed somewhere? You can't do it all. It will end up taking you and then your Mom will get placed anyway. Your health has already suffered. You all need a break, perhaps a weekend away with hubby? Try and be kind to yourself, as that is what your Mom would want if she were in her right mind, I'm sure. Blessings dear, and visit anytime with anything on your mind. Cindy

 
Old 02-17-2006, 10:39 PM   #4
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Re: Help... :(

Oh Jess, me too, sorry that you have to be here. But it's a good place to be.

Everything Barbara says is so true. I know it seems difficult to even think of moving them some place else when you're overwhelmed with all their needs of daily living, caring for a family and working a fulltime job, too.

But it does reach a point where you have to think of your own health.

My mom is the same stage as yours, cursing and yelling at me for not taking her home. I've been hoping it would end, but it hasn't and I'm simply worn out.

I have a list of group homes in my area that do take AD patients and I've promised dh that we will visit a few this weekend.

It breaks my heart, I keep thinking I haven't done enough. But now my own children (all grown) are growing angry about it. I was crying this morning when my oldest daughter called and I got a good long lecture from her.

I haven't had my grandchildren over-night in months, I haven't been out to dinner with dh in months. We can rarely talk privately because mom stays up till we go to bed. It takes its toll.

And, I finally believe Barbara! We have to take care of ourselves too. Our children want us around for them. I finally heard my daughter when she said this to me this morning.

Hang in........take care of yourself........and follow Dr. Barbara's orders.

No guilt! We have to take care of ourselves, too. so that we can be there for OUR children, whether their grown or not.
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Last edited by Sandyspen; 02-17-2006 at 10:42 PM.

 
Old 02-18-2006, 06:41 AM   #5
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Re: Help... :(

Dear Jess,

((((((((((((HUGS))))))))))))) welcome, but sorry you have to be here.

I did what you are doing : full time job and taking care of my Mom at night, weekends, holidays etc etc .. climbing walls and never getting rest, except that instead of losing weight I ate 'comfort food' and got heavier!

Dear Jess -- do you see that perhaps your sister was right? (ducking to avoid smack) ... think of your life if Mom were in a good, caring, supoortive nursing home. My mom finally wound up in one and it was a great relief to all. And she is happy there.

I would say you have done your part by caring for her for sooo very long (one day is long!) and now it's time to gently but firmly move her to 'her new room" over her protests. Look into NHs in your area, choose one where you feel comfortable and enlist your sister's help to move her in. (It is OK to say, listen Sis, I tried so hard to keep her at home with me, but it isn't working, now that she is so much worse. You may have been right all along; lets be friends again? Can you help me get her settled in a new place?)

Having done both - full time care, full time with HHA coming in, and now NH care - I have to say Mom is way happier now. She has no decisions to make, nothing to organize or throw out - she drove me crazy rearranging everything and throwing out many good items - she is well fed and cared for, staff understand her and are trained in how to deal with her.

God bless you as you make your decison ..

Love,

Martha

Last edited by Martha H; 02-18-2006 at 06:42 AM.

 
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