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Old 02-06-2006, 12:56 AM   #1
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Unhappy Hi! New Here...Not That I Really Wanna Be

I guess I should first introduce myself. My name is Catherine and I am 26 years old and searching for any and all the help that I can get.

Brief history, I am the baby of 5 children. My oldest sibling is 16 years my senior and fixing to have his third child with his third wife My next sibling is 14 years my senior and she lives 800 miles from me and has always been the one who kept to herself in the family (meaning I may only talk to her once in 2 years)! My next sibling is 12 years my senior and a raging alcoholic who can barely take care of herself much less anyone else My sister closest to me is 9 years my senior and well she thinks she is better than everyone in the family because so far in life she has made no mistakes (or at least makes it appear that way) Me I am the baby the afterthought accident whatever you wanna call it. My mother was married twice, first at 18 to the man who she had her first children with and then to my father not long after she had her third child. They divorced once all of the children were out of the house except for me and pretty much drug me through the dirt after their twenty years of marriage.

Well here is the deal. My mother has Alzheimers. At the time she was diagnosed she was only around 55 years old. Forgive me for saying this but because she lived in TN at that time and me in Louisiana, I'm not real clear of the time table for everything. Once my family split up, we kinda all went askew. I feel so awful because from the time she was 18 until she was 52 (if you count the fact that I wasn't 18 until then even though I didn't live with either of my parents at that time) she was a mother and for the most part until the divorce a very devoted mother. Then three or so years after having all of her children grown she is diagnosed with such a ruthless disease. I guess because she lived so far away for those years, I never researched or realized the extent of what it was doing to her. I would see her maybe once a year and things would be somewhat different but nothing like I know now.

I totally feel jipped and at times get very angry at the fact that my father passed away when he was 57 (me 22) from a stroke and then not long after I start seeing that I am losing my mother as well. I feel so young to have lost so much. I get so mad that my children will never know my parents for who they "were".

I guess I am getting off the subject but I feel almost enlightened to have found this board.

So my mother remarried almost 9 years ago to a man where she lived in TN. I have seen him a total of 2 times if that goes to show how often we made the trip there and visa versa. Just not the way I ever imagined family being and everything I hope that the family I am developing of my own will never be. I think at the time (prior the diagnosis) that she married out of fear of being alone during these years of her life and honestly I believe he did the same. Neither of them expecting anything like this to brew its head just a few years later.

Well, again, trying to make a long story short...she came down here over the summer (after me not seeing her for quite some time---and we rarely talked on the phone) and decided to spend the summer with her three children (there are three of us that live within a 20 mile radius---the other two hours away) and her grandchildren. The whole time she was down here of course she just couldn't get enough of us. It had become the most apparent that I had noticed so far as to how dibilitated she was becoming. At moments I would be just fine and then something as blow drying her hair for her would cause me to have an emotional meltdown. She said she would love to stay down here with us instead of going home to her husband because she wanted to be with her children but at the time it just wasn't feasible. I hated putting her back on that plane back to TN at the end of the summer but really didn't have a choice.

Well she came back down here on the 16th of Dec. to spend Christmas and was supposed to return on the 4th of January but has not and has been staying with my and my family. My husband 27, daughter 5 and son 14 months. I totally feel stuck between a rock and a hard place. Mom told me that her husband up there was leaving her for hours at a time during the day and she was just so miserable because she can't change channels on the tv and that her doctors were saying that she should be more active and of course as her daughter I wanted more than anything to have her down her with me because GOd only knows how much longer we will have "her". I knew the process of keeping her down here would entail alot but me being the youngest I expected at least the advice of my sisters to be somewhat helpful. Boy was I wrong!!! My closest sister just told me to do whatever I thought was best and well I haven't heard from her since the second week mom was down here. My other sister here thinks that she is going above and beyond by coming to see mom once or twice a week and occasionally taking her overnight. My brother, well I've only talked to him once since she has been here and the other sister none.

I have done so much to try and accomadate and care for my mother. I live in a 2 (maybe 3) bedroom house with my family and we live off of what we make. The childrens play room is now my mothers room with a bed put in here amongst all the toys. I stay at home with my 14 month old which is why I guess everyone thinks I should be doing this . My husband has been very understanding but gets very aggravated at my siblings because they don't do anything to help. I'm young and am learning about the world and am currently in the process of hleping my mother file for divorce from her husband, getting her SSI Disability Changed, trying to get her on Medicare Part D since her medicine is more a month than her SSI...and I guess it is just all taking a toll on me..I just don't know what I am supposed to do. I told my husband to give me a month from the time mom was supposed to go back to TN to get her a place all her own but with her financial status and ours that really isn't going to happen anytime soon and he is already starting to ask "when"...I understand as well because he said it is like he doesn't have any privacy in his own home and I can say if it was his mother I would feel the same way.

I don't have any time to myself and sometimes I swear she waits until I sit down to ask me to go and get something forher. It is like having another kid that I necessarily didn't want. I just feel so give out between my kids, my husband, and her that I feel myself getting very angry at the situation.

cont'd

 
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Old 02-06-2006, 12:58 AM   #2
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Arrow Re: Hi! New Here...Not That I Really Wanna Be

cont'd....sorry so long I had to seperate it

Here is the rest


She wanted to stay down here and I told her I woul ddo everything within my means to keep here, have taken care of her given her her baths, shaved her legs, washed her hair, ironed her clothes, put make up on her, whatever she asks for I do and I feel 100% unappreciated. Why you ask? Because she tells everyone things that either aren't true or everything that I might say at a "tried exhuasted" moment during my day making me sound awful. Never a thank you for doing this--nothing. She has accused me of being against her and wanting her to be alone for the rest of her life when I tell her that she is not going to move to TX with a man she dated 12 years ago. She accuses me and my husband of erasing numbers off the caller id on the phone so that she can't talk to anyone and calls us ugly names (keep in mind we are the only ones doing anything for her) She talke about my kids and how they are loud and that she can't get any rest well "they are kids, my kids, I'm not going to shut them out of their play room for hours at a time so that she can go lay down uninterrpted". I said she could stay, I never said everything would be perfect. That part I guess really upsets me because they are my children and this is their home and that really gets to my husband. She has her shows that oddly enough are the only things that she remembers and I swear she will ask when they come on everytime within five minutes of them starting---my husband gets angry because she will watch her shows and he normally stays up watching his shows instead of coming to bed with me. She gripes and complains about everything from how much sugar I do or don't put in her cereal to how I put her socks on her. I just feel like I can't win for losing in the situation you know? The thing that really set me off today was when she was talking to that guy friend of her in TX on the phone she was talking about how she can't ever relax here because of the kids and how nobody love her or wants her except for Carol, the alcoholic daughter who comes to see her twice a week and has let her stay the night twice the whole time mom has been here. Of course it is easy to baby sit and cater to someone when all you have to do it for is a day and you have no children at home. It just really really really hurt my feelings. I don't know what to do. I don't know if I have jumped into something that is way bigger than myself that I should have just stayed out of but when I feel that way I feel guilty.

She is so young (62 this month) to be dealing with all of this. I don't really know what stage in the game we are (she has her first doc appt. here on the 8th with a Alz. Specialist). My day normally consists of getting up to take my 5 year old to school, coming home and getting her breakfast ready, then getting her bath ready, then making sure the tv is on the right channel for her shows, then after doing lunch I get in the bath myself, go get my little girl, get my husband from work, come home cook supper clean and go to bed all to do it again the next day.

She can't do anything for herself. She is constantly spilling stuff, she can't pout her anything todrink so of course one of us is having to do this. She can't dress herself at all, she gets very flustered when she talks and half the time I finish her sentences for her because she just can't get them out. My or my husband have to cut her food up for her and help her get into the chair because she will walk circles around it if we don't. At night I will see her standing in the hall right in front of the bathroom door and she will say I can't find the bathroom then will open our hot water heater closet thinking its the door. She will eat something and then forget and want to eat again. She calls my little boy "little boy" and same for my daughter---just this time though (not during the summer_ she has been getting fiesty and moody and thinking that everyone is out to get her and of course I geuss that means I get to take the blame. I just don't know what to do. My husband and I are getting frustrated. Please help

Catherine

 
Old 02-06-2006, 05:31 AM   #3
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Re: Hi! New Here...Not That I Really Wanna Be

Dear Catherine, welcome to this place. We will try to help you.

You are in an impossible situation. You cannot keep your Mom living with you, she needs to be in a place where professionals will take care of her. Her present husband (who is most likely nothing like what she tells you) has to be in on the planning. Have you discussed her sickness with him? He is her husband after all and to some extent responsible for her care and upkeep.

Besides a doctor, you also have to see a lawyer (Elder Care lawyer) and try to straighten out her affairs - someone needs to have power of attorney, she needs a health directive (living will) and you need to share all and any of the expenses with your many siblings. It is not really their choice.

If your Mom lives on SSI she is most likely eligible for Medicaid which would be an enormous blessing for you because Mediciad pays for nursing home care.

You have to develop a thick skin and know that all the stories she tells about you are nothing but her confused mind speaking, not the real her.

Catherine, I feel sorry that you have to go through all this at your young age and wth small kids ..think of it this way: if Mom were in her right mind she wold not want to disrupt your lives and be in the way of your children ... she has to be somewhere else but not livng alone. I think she is too far gone to live alone.

Call a family conference for all those near enough to come and insist that a solution is found where all the kids share the work, the expense, the pain, the sorrow and the burden .. and apply for a place in a good nursing home. You can still visit her every week and bring gifts and do her hair etc .. but not in your own home.

The present husband also should be in on the conference, after all, he bears some responsibility for her welfare, and 'leaving him' might just be another symptom of the disease.

Here you can rant and cry and we will listen and surround you with good wishes and prayers.

Love,

Martha

 
Old 02-06-2006, 06:55 AM   #4
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Re: Hi! New Here...Not That I Really Wanna Be

Hello and welcome - I'm so sorry to hear of your situation. I agree with Martha. You need to get your Mom placed somewhere or you risk losing your marriage. Sorry, but even the best of husband's have a breaking point. Plus, this is putting way too much stress on you. I have been a stay-at-home Mom and know what that's like. I can't imagine having an AD patient to take care of on top of everything else you have to do. Your stress level will go out the roof and it will start to affect your health as well. You are a wonderful daughter to help - but you must help yourself and your family. Isn't that what your "real" Mom would want? This is not the real her, even though it still hurts to hear her say mean things about you. I hope you can find a place for her soon. Keep us posted, Blessings, C

 
Old 02-06-2006, 07:22 AM   #5
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Re: Hi! New Here...Not That I Really Wanna Be

Catherine,
I'm glad you found the board. I agree with Martha and Cyt. An Alzheimer's wing would probably be the best place for your mom. If your mom had some other disease, where she really could appreciate what you are doing for her, things would be so much easier. But with AD, you are in a no win situation. Don't feel guilty about getting your mom placed in an appropriate facility. It will most likely be better for her. And it will definitely be better for you and your immediate family. Good luck. Lots of people here know what you are going through and can give you good advice.

 
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