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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.

 
Old 02-06-2006, 07:29 AM   #6
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Re: Hi! New Here...Not That I Really Wanna Be

Oh Catherine ((((((((hugs))))))))))

Martha is so right. You are in an impossible situation. At your Mom's stage, you can't do it alone.

I'm 59 and all my children are grown, yet most days I feel like a basket-case from taking care of my mom.

I can't even imagine trying to do it with small children in the home. You're a good and loving daughter, and you don't deserve the things she says to you. But, it's not YOUR mom speaking......it's the disease. Always keep that in mind.

You have to do what's best for you and your family. Sometimes it seems overwhelming, getting all the ducks-in-a-row to get help for the patient. But it must be done, one step at a time.

As others have said, find out about Medicaid, nursing homes. Bring in her hubby and your siblings.

The worst part is, if they aren't taking care of her, they don't see what you see. It seems that family members always minimize the symptoms. Maybe because they don't know what to do, either. But you must lose your fear of NOT pleasing them. Some won't be happy with her going to a nursing home. That's just how it is. It hurts, but must be done.

I'm so sorry that you are in this situation. I'm so glad that you found this message board and us. This is a safe place to vent your fears, anger or whatever you're feeling. There are no judgments here. We've been through it and we understand.

One of the most helpful things these other ladies have taught me is NO GUILT. You're doing the best you can. You're a loving daughter and you have no reason to feel guilty.

Take care of yourself and come back often, we're here to listen!
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Old 02-06-2006, 08:54 AM   #7
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Re: Hi! New Here...Not That I Really Wanna Be

We have much in common.
In a nutshell:
Mom also diagnosed young--age 57
Had eight children, ten years apart
My dad was killed when she was 35, I am the oldest and was 14, youngest age 3--I can't imagine the stress!
Married two awful step dads, whom she later divorced
Raised kids from the age of 24 to 53
Last kid out of the house and THEN she got Alzh.
She is a devout christian, loving mother, sacraficial to all people no matter who.
Intellegent, kind, etc
Had just weeded out all stress and evil around her and got her life together, then to be diagnosed.


I don't want to be here either, but I have gained insight from all of the angels on this board, who dispite thier busy schedules looking after their loved ones, take the time to post advice.

God bless , welcome,

B.Y.

 
Old 02-06-2006, 09:02 AM   #8
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Re: Hi! New Here...Not That I Really Wanna Be

Welcome to you Catherine!

I have to agree with the other ladies here, you have nothing to feel bad about. You're putting forth a tremendous effort to juggle all you do and to add in an unappreciative, fussy, suspicious, selfish, completely dependant adult is just TOO MUCH. You are not Superwoman! Neither are any of us. We so understand all of your story.

If your mother and her current husband aren't yet divorced, she may be on his insurance if he still works or if his company has an insurance plan for retirees. That is a possible way to pay for all of the coming expenses. Since you've found out that your mother doesn't stick to the truth (cannot remember it), maybe the stories about her hubby aren't true either. Seems to me you should call your step father/Mom's husband, let him know what's up and why his wife isn't home yet, and ask all of these questions.

Do you have your mother's Durable Power of Attorney? If you do not and if the divorce isn't final, you and your siblings have no legal rights to make decisions for your mother at all, including medical appointments. The doctor cannot legally include anyone without a Durable Power of Attorney in any medical discussion about your mother and her health.

One thing is for sure: you cannot continue being your mother's slave. Your job now is wife, mother to two little kids, and homemaker for your family. As much as you'd like to help your mother for the rest of her life, consider the emotional, personal, and financial cost of that. It is simply not reasonable. Your kids will not do well seeing their grandmother like she is and will become. Your marriage may suffer. You may develop the usual exhausted and frustrated caregivers medical problems. It's not worth it. If she were in her right mind, your mother would not want to cause this turmoil and upset in your whole household.

It's only going to get worse. If she will get better care and better coverage in TN, do not feel bad about sending her back there. Soon she will not have the slightest idea of who you are.

An appointment with an Eldercare lawyer may be expensive, but it may be the best way to find direction, help, hope, and get the legal ducks in a row now, before your mother loses any more og her abilities.

At the top of this thread is a sticky called The 7 Stages of Alzheimer's and that will show you what behaviors are common to each stage. It is really helpful.

Glad you found us and I hope you'll came back as you need to. We're here! There's a post titled Who's Who and that will tell you about many of us and where we are on the caregiver/survivor scale.

Hugs - Barbara

 
Old 02-06-2006, 10:57 AM   #9
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Re: Hi! New Here...Not That I Really Wanna Be

I thought the suggestions to talk to her husband are very good. Even if he wants the divorce, it's important to notify the lawyer handling it for your Mom about her illness -- it may NOT be in her best interest to be divorced due to her husband's medical benefits, or the lawyer might suggest a different property settlement due to her AD. Changing your Mom's state residency could affect her eligibility for benefits. Her legal status needs to be examined not only due to the divorce and questions about benefits, but to see who may be responsible for her and whether it's still possible to do powers of attorney, health care powers of attorney, a living will, etc.

These are complicated issues, and you're going to need help. The Doctor's office may be able to give some referrals to local agencies. There may be a State or local Alzheimer's association or geriatric association that will have resources. Some nursing homes have support groups. If you offer your sisters and brother an opportunity to participate in decisions, you're doing all you can do. If they disagree with the decisions made by you and your husband, you might invite them to take the lead and assume responsiblity for your Mom -- as long as that plan doesn't involve her living in a playroom in your house. And if you can't work it out with them after that, and they're angry with your decisions..so what.

There's so much to learn about this disease, and it's hard not to blame the patients for their behavior. Everything from sleeping, speech, food, etc. will be affected, and you will probably fall into the same trap that we all do of trying to explain things to her. As harsh as it sounded, someone told me on this Board 2-years ago that my husband was "demented" and couldn't be trusted to drive even if he seemed capable. I hated the word "demented," but now I understand that it was accurate. If your Mother has AD, she has dementia and is demented, and you must lovingly protect both her and your family as her illness progresses. She may be only a little bit "demented," but it will progress.

You will do everything you can, and she will still get worse This story doesn't have a happy ending. Your family goal needs to be to get her out of your home, whether to another family member's care or into assisted living, and then you can start to consider long-term plans for her. As much as you want to help or feel a sense of duty, you have family responsibilities that make you ineligible to be a full-time caregiver for an Alzheimers' patient. You clearly are loyal and responsible, but you shouldn't sacrifice your family for thankless sainthood. If you read some of the stories on this Board, you'll see that this disease ultimately defeats every caregiver, and sometimes they lose family relationships or their health in the process.

You also have to give yourself a chance to grieve for the Mother & Grandmother that you wanted, but will never be able to have. Keep telling yourself that you have a chance to be a wonderful Mother to your kids, and that you can have close relationships with Motherly women -- and hang in there, someday you'll be able to look back on all of this and will know you did your best.

Last edited by Beginning; 02-06-2006 at 11:41 AM.

 
Old 02-06-2006, 11:01 AM   #10
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Oh my gosh, I feel so thankful seeing all of your responses. God definately sent me here for a reason. I don't have much time to post my thoughts on all of your responses and questions because of mom and my son but I promise I am not going anywhere and will be on later tonight after everyone has gone to bed and I have time for myself.

Big hugs and thanks so much
Catherine

 
Old 02-06-2006, 11:34 AM   #11
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Re: Hi! New Here...Not That I Really Wanna Be

Hi! and thanks for your reply. At the present time we do have an attorney who is assisting us and luckily she is very familiar with SSI and personally with the disease. I am waiting for an appt. with her now but dreading how deep this whole issue may go before I reach dry ground again. I think I jumped off into something too quick without realizing the extent of this disease and maybe not wanting to acknowledge it.

Like I said before I really don't know her husband that well. I don't assume he is really this awful person because he has stuck by her through all of this and still calls to check on her. The only thing that throws up a red flag in my book is that he has never offered to send one dime down here to help with her expenses. As a matter of fact he was the one who at the time she starting receiving SSID said that it was time for her to assume the debt of her medicine. Keep in mind she only gets 337 a month and her meds are 350. He retired from the Mead there in TN and received a lump sum of 65,000 when he retired and he has insurance but apparently she is better off on Medicare than being on his insurance because she has never been. It just really gets under my skin that he has not offered to help us in any way or even mentioned coming down here to speak with mom. I do know that he was leaving her alone (which might have been 15 minutes but to her felt like hours) because everyday when I would call she would be there by herself.

On an even worse note I have no control over anything and this is another thing that makes me just want to scream. See her brother is her Power Of Attorney but he is also the one who called me and said "Catherine, your mother really wants to stay down there with you kids and her husband is not good to her, so if you can do that I will send you $500 a month plus take care of her medicine and doctor bills. So basically I have to go through him to get anything. I called him the other day because we were fixing to have to get moms meds again and I mentioned her doctors appt. and he was just like "well I wouldn't get them refilled until she goes to the doctor" which left her with 4 days of no medicine. Of course, my husband and I went a got a weeks worth of meds $80 because I just couldn't see making her go cold turkey and it seemed pretty risky. He did say that he would send some money for her ----this is money that is in a checking account that is hers (money that I am trying to keep from telling anyone) from a house she sold and each month her SSID goes in there. It's less than $20,000 but on her checks it says her brothers name FOR my mother which gives him the ultimate say over everything. The last two times he has send money he has said he was sending 300 and when it gets here it is 200. We are paying for all her food, utilities, supplies and so forth...just like we adopted another kid or something. Today I just got the second check he said would be 300 and its 200 and I am royally ****** (sorry)

If I call him and say something and he gets aggravated he'll just cut me off and not talk or send any money. I guess I also don't have much of a backbone either. I just want to kick scream and cry right now. It is so not fair.

As far as a family get together, LOL, that won't happen I promise. Getting my family together is like asking for WWIII to commence. I'm trying to care and do my part (a part) but they are all either so messed up or consumed in their own life to care about anyone else.

I think I am about to blow on all of them!

Now the reason that we are trying to get her divorced is because once she is divorced from her now husband she can file for disability under my father that she was married to for over 20 years and her SSID will triple per month. We have to wait 6mths though because that is how long they have to be seperated in the state of Louisiana.----and because of the fact that her now husband made so much money and retired from a good company she can't receive any of the low income opportunities (i.e. Medicaid)

I did fill out a form to try and get her on Medicaid to help cover the expenses of her meds and just filled out everything as if she was living off our income. I expect that the attorney will decide what her now husbands responsibility is financially and will inform us of that in due time.

I just feel like I am about to explode. I know I stay at home everyday but this is my job with or without mom. All of my siblings think I am the perfect position for mom because I can be there at all times but God I know this can't go on much longer.

Sorry this got so long

I know I did a quick reply but I guess this was addressed to all of you and your questions. I tried to remember what all was asked. Thank you SOOOOOOOOOOOOO much for the support and honest truth.

Catherine

 
Old 02-06-2006, 11:41 AM   #12
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Re: Hi! New Here...Not That I Really Wanna Be

Oh and yes I have found a local support group for alzheimers but have yet to go...where's the time? I also had the association send me tons of info on doctors, sitters, home health and other good information. I also am looking into that new Medicare part D Script coverage but because of her SSI still being in TN we can't apply for part D here in the state of Louisiana with our local pharmacists....


Its all a big mess

I'm trying though
Catherine

 
Old 02-06-2006, 12:03 PM   #13
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Re: Hi! New Here...Not That I Really Wanna Be

You poor child (I am an old lady of 66!) ..what a burden. Do the best you can but don't let the others off the hook that easily. Her present husband is still responsible for her, and her POA brother has to keep his word . 200 is not 500 and 500 is not nearly enough!

When my Mom needed a Home Health Aide they charged us $19 an HOUR! She just walked Mom to the bus stop and went with Mom to the Senior Center, watched out for her there so that she wouldn''t wander off or do anything too bizarre (like taking home another lady's coat) and came back on the bus. The Aide herself got $8 an hour .. but the Agency was bonded and would be responsible if anything disappeared from the house.

What I'm saying is, you are worth much MORE than $19 an hour so $500 a month is a pittance! And you are still paying her meds. No no No ...

Hope the lawyer can help you Big Time .. meanwhile all I can do is pray for a good outcome for you, dear girl ..

This disease can progress faster or slower, it depends. It sounds bad to have to wait 6 months or a year for anything ... that is way too long for you to have this impossible burden. How about having the one helpful sister take Mom for 3 days a week instead of only an occasional overnight? How about each sibling sends you a couple of hundred a month so you can pay for Mom's food and drugs and other stuff, or even move to a 3 bedroom home? Since your Uncle is sending you checks drawn on Mom's money, tell him she needs a room of her own and that will cost $xxx more per month than you originally agreed to! Let her money be spent on that. Believe me - it will all go in the end anyhow. Mom's is almost gone, and she may (I sure hope) get on Medicaid soon .... let HER money be used, not yours. No one can even hope to get a legacy from an AD patient, it all goes for their very expensive nursing home care. Better having her in a safe place and being poor.

Love,

Martha

 
Old 02-06-2006, 12:04 PM   #14
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Re: Hi! New Here...Not That I Really Wanna Be

Hi Catherine,

Just a quick thought - have the lawyer contact the brother with POA and let him know he'll be required to submit written proof about where every penny goes if it leave your mother's account. Let the lawyer know that he promised to send $500/mo and cover medical and prescription costs and that hasn't happened yet, though he has sent some money. Ask the lawyer if your mother needs a checking account with your name on it for accounting purposes and ask if you should make a copy of the checks he sends to file along with the deposit slip.

Also ask the lawyer if you should keep a written log with receipts about the money you spend on your mother, her necessities, medicines, medical appointments, and on a daily calendar, write all you do for your mother and the time it takes. That would be your defense if ever you need it for anyone at any time. When you see the lawyer, ask if you need other documentation.

You're right about this being a muddled and confusing morass, so it's good that you have a lawyer to help. I'm an only child and it was confusing enough without the opinions of others to consider and perhaps battle.

Good luck!! Barbara

 
Old 02-06-2006, 08:47 PM   #15
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angel_bear HB Userangel_bear HB Userangel_bear HB Userangel_bear HB Userangel_bear HB Userangel_bear HB Userangel_bear HB Userangel_bear HB Userangel_bear HB User
Re: Hi! New Here...Not That I Really Wanna Be

OK Catherine, congratulations .. you beat my first epic post!!

Isn't it a RELIEF to find a place where you can write it all down and get it all out and know that people will respond in kind with great responses and sound advice?

I know how you feel .. I really do .. I was at my wits end when I found this board.

The girls have given you great advice, and I hope you take it on board .. It took me a while to grasp the situation myself ... but ultimately, my goal was to stop 'coping' and be pro-active in making my charges safe.

My FIL was of sound mind, but in end Stage Lung disease (demanding, pushy, O2 deprived .. but a lovely man non-the-less) My MIL has Dementia (unspecified) and Primary Progressive Aphasia (can't talk legible words).. it was difficult having two of them, plus my husband and my own 3 kids ... so believe me .. I know your frustration and the sense of being yanked at both ends ....!!!!

Well, the way I changed from 'coping' to being 'pro-active' (took a year) was to finally get my MIL into some respite care for 2 weeks .. that way my family could go on a little holiday ..... the reason it was 2 weeks was to give her one week to settle in so I could REALLY relax whilst away. It was also to get her PROPERLY assessed as she was wandering more and more and was angry with the world, and being unreasonable with everybody and everything ..... and I NEED to get away from her myself ....... Well, Day 1 of respite came, and after the first night, the Nursing Home rejected her as "too hard" ...

Too Hard? What???

Was I hearing right? You mean the PROFESSIONALS couldn't cope with her, but others believed I could?

That was my eye opening event ..... and from that very moment, the wheels went into action to KEEP her in respite care until a permanent bed came up .. she was transferred to a Dementia specific Facility and settled in REALLY well .... enough that we could go on our holiday without fretting and worrying .......

On our return, we brought her home for 1 one where she was confused, addled, cranky, super odd behaviour .. worse than before, and she went BACK to the respite NH the next day and has stayed there ever since (she's had a perm. bed since November) .... she's happy, she's safe, she's DRY, she's SOBER, she's not angry with the world anymore ..........

So, what I'm saying in my long winded way, is DO NOT break your back caring for Mum. I know there is a sense of responsbility, but you have the same for your growing little active one as well .. DON'T put him or your husband on hold .. it's hard letting go of Mum, but you will, at some stage, have to .........for your sanity and your family .... it's a hard road being a carer, and although I don't regret one day of helping my inlaws, I regret what I did to my family ........

I hope I don't sound like doom and gloom .. but try and not take a year procrastinating, make it a year of being pro-active in getting Mum safe, sound and looked after by people who are trained to do just that and have the TIME to do just that .........

Big comfy hugs ........ we're here for you

Sally

 
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