The Caregiver & Dysfunctional Families: How are you doing?

I think Hospice would be wonderful for me. But the parents say no. They don't like anyone coming into the house. One of the most difficult things is they box us in by saying no to just about everything normal people would do. For example, my mother doesn't want to hire a home aide because they cost too much. But my father does need baths and he can barely stand. I guess she thinks that ultimately I will bathe him, which is not going to happen. They have the money to do these things, but my mother doesn't want to spend it or have anyone coming into the house.

We get boxed in by this in almost everything. My father won't leave the house and no one is allowed in. So occasionally my mother does something that makes no sense, like the latest OT & PT package that Medicare is paying. When the people come into the house, the resistance begins. If they did consent to Hospice in the moment of graciousness, they would quickly get rid of them.

Where all of this will go, I don't know. There is so much mental illness going on that comes from the Asperger's and maybe-dementia. Often I feel like I'm doing damage control. Every couple of weeks my mother does something crazy that totally makes no sense. If I choose to do something that makes sense, they say no, no, no.

Today I am going to call a safety company to have them install some support bars in the bathroom. I hope I don't end up having to pay for them. My mother wants to make sure she has money to leave to all her children and grandchildren when they die. It is sad that she would take money from the one child that is helping so she can leave it to the others who don't even call. But if I say anything, I am just being awful. I guess there is the thought that she can win back their affection after they die by leaving some money. In reality, I suspect that Medicaid will end up with it all, since their health is so poor.

Today we all begin another day.. I started keeping a journal back when my hell began.. but I seem to have nothing but the same "stuff" to write everyday.. so whats really the point.. As if all isnt hard enough everyday with my mom.. My son was evaluated for his brain surgery.. we found out its a long..long road to prep for this type of brain surgery.. He has-- Mesial Temporal sclerosis-- The Dr said this could of come as a result from a high fever he had as an infant.. But no matter how it came to be it is so very difficult to deal with.. He went from being an outgoing..funny..happy young man (hes21).. to a person whose memory is shot..he has femoral seizures..therefore I can not let him out of my site.. he cannot work..drive..go to school.. his life has stopped.. and the meds have so many side effects..mood altering side effects.. this area in his brain that is damaged controls memory..moods..speech.. so for now until the surgery the dr said all I can do is watch him..and be there for him.. there is months of various tests prior to the surgery to pinpoint the exact spot that needs to be removed.. so surgery is not for 6 months or more..It breaks my heart in half everyday to see him go through this.. hes such a special person.. I cry more now then ever.. and not for me..

So my house is harder emotionally and physically each day to wake up in.. I also ave a younger son who has severe asthma/allergies.. therefore his Dr. reccomended homeschooling..he was actually allergic to his school.. so thats another duty on my long list everyday.. and education is something I take very serious.. So I stress everyday that hes geeting all he needs from homeschool.. eduacation part.. but also socially.. I need to be his mom..teacher..and friend many days...everyday everyone needs me differently..everyone depends on me..to help them through this time they are facing now in their lives.. and I feel like I am a rag doll being pulled at the seams.. Just when I get one person at a good place during the day (or night)..another person says.."can I talk to you".. and I think here I go again.. And then we come to my Mother.. wow.. we all know that is a enough to wear on a persons nerves alone.. I have a long road ahead w/her because I do need to have her tested for Dementia/ALTZ.. It was suppose to happen during her hospital stay but she left before the dr came in and her primary let her.. I thought he was on my side.. She does and says things that are becomming more and more obvious there is a problem.. So I have to watch her and be there for her everyday.. she cannot be left alone..

I know there are no answers to my life right now.. I go day by day.. and be there for everyone.. and I have no one to lean on.. but coming here to vent is "my" way of leaning on many people out there who I do know understand my "rag-doll" feeling.. I one day hope to post a positive post on something..

My Dr asked me how I kept such a positive attitude during my mastectomy and all the surgeries that followed.. (last one was just 2wks ago).. Actually the only time I even have a chance to really absorb what Ive been through is when I feel the pain..I think "ouch..why does that hurt?" Then I remember oh yea I had surgery.. but I pop my best friend Motrin and its no longer a thought.. Not really a great attitude just no time to think of me.. maybe one day...

Would hospice help? They are usually wonderful, and work with all the other players in the care of your father. Would also encourage you and your mom as the two of you travel your own roads.

Jessie -just do what you feel is right OT has to documant that they are making progress that is how they get paid from medicare a lot is BS -you know what he can tolarate the worse that can happen is that OT will stop their services and that is really what you want anyway so in a few days they will be out of your hair-you have accepted that the end is near and you need to do what you feel is right.

Just re-read what I wrote. The OT wants me to get my father into and out of the shower twice a day, not twice a week. Twice a week wouldn't be too hard.

The past couple of weeks have been hard. My father is growing weaker and is probably nearing death. His mind has gone from being sharp to being unfocused. He has withdrawn further into his own world. My mother has been faced with the reality that she may lose him soon, but is not ready to let him travel down the road. She has become worried and obsessed with ways to fix him. She goes back and forth between accepting that his time is near and anger at him for not fighting harder. She talks about it all the time.

We've had some home care coming in. We really just wanted help with baths, but Medicare requires that PT, OT, and skilled nursing be included in the package. My father doesn't like people in the house, so this has been hard on him. He is so weak and dizzy that many of the walker exercises are like torture to him. The OT wants me to do the exercise of getting him into and out of the shower twice a week, but my practical sense says it is not a useful exercise, and only makes my father more weak and miserable. I feel guilty about not complying with the OT's request, but I know it is time to let my father travel down his road. I don't want to make that road more rocky for him in order to please the OT. I believe I am right in doing this, but I still feel guilty. I just want him to feel comfortable.

My mother and I sat down and watched Joel Osteen tonight. I am not a religious person, but his message tonight was pointed straight at my mother's and my hearts. I wish I could have recorded it, so I could hear it again when needed. His message was that when things get hard, God and we have the strength to put it under our feet, instead of having it over our head. Together we are strong enough to handle all the hardships of life. How true that is.

I don't know what the next few days will bring. My father is ill, but my mother is driving me crazy. This is a long, long road. I'll keep the words of Joel Osteen in my heart to help get through it.

Such depth and beauty in your words emjo. Thank you! Much Love.

My heart is singing songs of pain.
The pieces split apart again.
When will the past bring joy to me?
When will my heart be whole and free?
jb

Try googling melanie tonia evans, she has been very helpful with info on NPD.

Izabella, thanks but I think it would be better if a woman would write the book and have two men write a chapter from his perspective and journey of having a wife who lives in their mother's shadow. One where the wife got out of the shadow and the other story where she stayed in the shadow. Sounds like a possible title to me, In Our Mother's Shadow. If I did write such a book, I'd rather be its editor of stories from women with this battle who are single, married and divorced. I just think it would carry more validity and power that way.

Izabella, I think you have more inner strength to break through the F.O.G., i.e. fear, obligation and guilt so that you can live in the light and not in anyone's shadow. You've taken some steps in that direction. It takes small steps and taking steps over time, but I truly believe that you can get there and are on your way.

Thanks for a whole new analogy for living as adult children! Living outside of mother's shadow!!!

I hope everyone has found this site to be their strenth when we have none left as I have.. It is such a comforting feeling to have people out there who take our feelings as important issues.. cmag--- WRITE THAT BOOK!!-- seriously you should.. you hit it right on.. there are self help books out there on everything.. but none on that issue that I have seen and I've read them all.... that issue just may be the core of why so many of us become adults and still are in our mothers shadow.. Im sure if we all put our stories together we would have one hell of a book!!

195Austin-- I wish I knew a NH would not kill her.. but I do believe it would.. I am going to look further into possible Assisted living type place that doesnt cost a crazy amount each month.. I do know I have to do something.. the stress is affecting my health.. I hope one day to find the peace you have found and take back power of my life.. or get power really because I dont believe I ever had it.. If I did I know my life would of been much different..

Sometimes if you post about you note being deleated and repeat it it will stay or put it on someones' wall usually they allow links

Hm-m-m I posted the link but it did not show up on this site. Perhaps that is not allowed. Sorry.

The hospital knows you are not responsible for her bill -they have to go through medicare or medicaide and any insurance plan she has-they just want to be sure that they will get paid but the children are not responsible or if she is self pay at the NH which is not usually the case -only maybe at the beginning until her money is used up and at 450 dollars or more a day-that was three years ago the price a day in NH in my area- her money would not last long. My husband would threaten sucide all the time for attention but his doc at the nursing home did not get it that it was his problem and believed him when he said he was ok but his wife was crazy.

. As I mentioned she has sent me two free books on-line, has a weekly newsletter and a radio program (from Australia) She also offers a recovery program book for a minimal fee but I haven't ordered it yet. She just keeps pounding away at the danger we are in, how to disconnect, and we can be free. She will also answer Q's I believe. Not trying to sell you anything, just trying to help anyway I can. LOVE

Arg-g-g!!! Thank you for being here! This week has been ??? It started Tues., I have been in great pain and also had breathing problems along with gut issues. I went to an appt. with my chiropracter and by the time I returned home about 2 hours later I had 3 calls from the NH. Mom was hysterical and they thought maybe I could help she told them I was in the hospital and very ill. They knew better so called me to reassure her, the patient's phone was busy so I spoke with her nurse who informed me she had little scabs all over her arms and they were calling her DR.(good luck with that). Today I get a call to please talk to her as she threatened suicide 3 times in 40 min. She is now on watch, they gave me her Dr's #, I called, he was NOT happy, wanted to know how I got his #, and informed me he was not on call and out of town. And this I should know because I am psychic? In the past year, she has been transported to psych hospital over an hour away 4 times for the same reason. Years of keeping all of us in the family on tenderhooks by threating suicide is now coming back to bite her in the butt---at the NH, they HAVE to take it as fact by law. So I spoke with my new friends at the hospital and since she has never tried it only uses it to get attention there is a very good possibility Insc. will not pay for another go round. Bless them for giving me the heads up, as I could be responsible for the bill they told me. At the moment mom thinks she is in Texas and does not realize I am 25 min away from her, and I told both staffs to please not enlighten her in an effort to protect myself. The NH has witnessed her verbal abuse towards me several times. Anyway the staff at the NH told me on tues. they found small scabs on her arms and had a call into the DR., the psych hospital, which is awesome by the way said the NH had found a plastic fork in her bed. Ding Ding Ding...maybe she is doing this to herself! If so, transport will be approved, or her DR could send her to the other hospital I do not really care for. I am really working hard at no contact...I speak with the nurses almost everyday, but not with mom unless I have to...the guilt is slowly easing. I found a news letter and free books online about NPD (will look up site and post it for you shortly) that has helped me strenghten my resolve. And all of you...until I found you I never had heard of NPD and thought I was just in la-la land because of something I had done to mom or she was more likely flat out bonkers, yet still felt I could and should keep trying to rescue her...even tho I always get hurt for trying to help, trying to make her happy. You know the drill. Whew...cmag, again...Bless you for this site. Putting it in writing, sharing with all of you lessen's the stress, heart rate is slowing down knowing that you get me. Oh, and when I mentioned NPD to the hospital, it was an instant "You are doing the right thing...continue to protect yourself" Wow, what a validation, in the past mother would have painted such an awful picture of me that I came to dread psych visits as it was most often me who they thought should change. Any response is most welcome.

Izabella it will not kill her to be in a NH you need to help yourself and your family--none of you deserve the treatment you are getting from her and the upset to you and your family-I have had to detatch myself from my mother-she thinks she did no wrong and was even braging how good a mother she was because we turned out ok- we only did because of ourselves not her-and now she thinks she can still treat me badly-but I have learned I do not deserve to be treated badly-I stayed in a bad marriage because I thought everything was my fault due to my upbringing I did see the light before the husband died and did take back my power that I gave away to any strong personality-so now I keep my exposure to my Mom brief as possible-it is my way of coping-I know I can never have a good relationship with my mother but I also know it is not my fault.

Mom enmeshed women are women like my wife who became their mother's emotional partner's while living at home and continue to live with that bond into adulthood which makes bonding fully with their husband and children very difficult for they are still letting their mother rule their life as if they were still a little girl. Basically, a mamma's girl. How their mother feels is how they feel and they view themselves as responsible for keeping mommy happy. So, how dare they put their own ideas, feelings and husband, etc. before mom for they lack healthy boundaries with their mother who often is an intrusive, narcissistic or borderline personality. My wife has had years of therapy to get out of that and I've had my own enmeshed issues with my mother although earlier, I thought at that time that I had more freedom than my wife did.

What are mom enmeshed women?

An idea came into my mind this morning. While there are books on the market about emotional incest, physical incest, when parents make children their partners and mom enmeshed men, I've not seen a book specifically written for mom enmeshed women. From some of the stories that I have read on this thread and others, I think someone could write a book on this subject out of their own experience of their mother making them their emotional partner that would help other women who went through the same thing and indirectly help their husbands which I could include a chapter on. Just thinking.

julieann, this is a special circumstance IMO. I would tell the woman adios. The sad truth is that some women of her age traded their children for security. If she was unwilling to sacrifice for you as children, there is nothing you owe her now. If she is abusive, there are too many other options than for you and your siblings to have to revisit the pain every day.

julieann...my heart truly goes out to you.. I dont how we close our eyes to the horrible mistakes our mother(s) have made and now devote our lives to this person who allowed her children to suffer.. My situation is different then yours yet very much the same.. Your situation I feel is much more heartbreaking... and you are quite a person to be your mothers caretaker now... I admire you.. I dont know that I could be so forgiving.. I have a hard time letting go of the past things my mom allowed.. from a very young age I was more of a partner for my mom then her child.. My one sister was very screwed up.. and it was me that was always the one to get her out of trouble... many times my sister became combative and would physically start a fight w/me.. she is 10 yrs older..so I was very young when this started.. it continued into adulthood.. my sister doing no wrong and my mom making me feel as though this was not only normal but it was also expected of me to be there for her no matter what she did.. One event that stands out in my mind is a time my sister came to my moms home drunk.. I told her to leave and she got nasty and we began fighting.. my end was more pushing her off the porch to leave.. long long story short my sister took me to court for battery.. I almost had my kids taken away due to her lies.. I paid money I did not have and got a lawyer.. and even the judge saw it was a crazy charge against me.. but it could of gone a different way.. Now to this day this sister can still do no wrong in my mothers eyes.. and I have even had to still be there for this sister...

My reason for sharing this story.. Is I have tried (very recently) to put the past hurts in Gods hands.. because I am all my mom has... and it has been no easy road w/her here in my home.. but this site also has helped me so much.. just being able to vent is so very helpful.. Julieann.. I hope you find peace in the road you have ahead of you.. and we are all here for you!

Heres an update since I got my mom out of the hospital.. It has been horrible.. since I brought up having her eval. for dementia/ALZ... she is so angry.. she feels my husband and I are trying to make her crazy.. I honestly dont know how much more I can take... she is still not speaking to my husband.. so it makes it very stressfull in my home.. and my sons brain surgery is going to be coming up soon.. I wish assisted living wasnt so damn expspensive.. and a NH is not an option because I know it would kill her to be put into one.. I feel very mentally drained..

julieann1995, half of my previous statement was for you.

I'm sorry for the abuse you and your siblings had to endure while your mother looked the other way. According to what I've read on that subject, it is not uncommon for the mother to know, but to also look the other way.
Emotionally speaking my MIL treated my wife like a substitute spouse. I had a similar abusive experience with my narcissistic mom.

Margeaux, my MIL has succeeded in alienating me and her other SIL by her narcissistic/borderline behavior plus how I see she treats her twin daughters and the stories they have told us about how their mom was when they were children and teenagers. While she claims to be a Christian and is a PK, it would not bother her if either marriage ended in divorce or if either of us SIL's died. We are all so glad that she is in assisted living.

I'm sorry for the abuse you and your siblings had to endure while your mother looked the other way. According to what I've read on that subject, it is not uncommon for the mother to know, but to also look the other way.

Emotionally speaking my MIL treated my wife like a substitute spouse. I had a similar abusive experience with my single parent narcissistic mom.

Oh how this topic fits me and my family today. My mother just arrived home (3 weeks) after being in the hospital and rehab for several months. She is very elderly (89) and expects her children to jump when she yells! She has finally allinated some of her regular caregivers, and others have stepped up to the plate to lend a hand in the effort to keep her in familor surroundings. The issue,...and it is a huge one..she willingly and knowingly...allowed all of her children to be sexually abused by her husband (step-father to many of us), even moving way out of town to not allow anyone to get close to her children so we would not tell. While he has left this earth, many of us feel like this is just not fair! We are putting our lives on hold, rearranging our lives on a daily basis, and at time ignoring our own spouses, children, and grandchildren for this woman who threw every one of us into the hands of that sick, sick man. The abuse was not a one time event, for one of us it lasted 11 years. While we have all been in and out of counseling over the years, we all struggle with taking from our lives, and giving to her, when she could not be bothered to keep us safe!

Wow, emjo I read this post you wrote about your narcissistic sister. I find this quality so terrible by parents when they have to say something inappropriate to a daughter-in-law. Your poor nephew. I remember many years ago, my mom who I consider a manipulator, used to criticize my youngest brother's wife to me. At that time, I noticed some rather ungraceful qualities by my sister-in-law. Fortunately, she's grown over the years, and I like her much more now than then.
But, I remember giving my mom a piece of advice. Also, in mom's eyes, no woman was good enough for her favorite son of all things. So I told her, that it would be to her benefit to be nice to my sister-in-law, after all she was now in the family and married to my brother. I also told her that if she wasn't, she would run the risk of alienating my brother from mom. Well, mom managed to be let's say polite, but I could always tell that she wasn't fond of either of my sister-in-laws. Well, I'm happy for you that you've made a connection w/you nephew. It's good when we at least have a few good eggs in the family. Take care, Margeaux

I can hold glass to that ...make it cherry shake lol ...yes my brother and I do not talk and I do not get a chance to talk to my half sister. It ticks me off not knowing what influence my lil sister to not talk to me but know she is moving to california and my brother he is in georgia now. I talk to my twin sister and that is like pulling teeth..everytime something is misunderstood and a fight happens ...I just endure of it then hang up the phone..i can't deal with it when I took their backs against bullies in school and a girl isnt suppose to do that ..guess i am the odd one out .

Margeaux, it sounds like your sister is doing a great job. I am really impressed with her. If the three of your get along well, maybe you can go with them places. I'm sorry the alz seems to be progressing again. Sometimes I hope that diagnoses are wrong and that the disease won't progress. I am glad that you are there to support your sister. I know she has a rough time ahead. It is easier with a family of help. :) Caregivers do tend to get controlling. I guess it is because they try to find ways to make things work. When they find one way, they stick with it until it stops working. I know my parents have certain traits that I have to consider when I'm making plans. Occasionally one of the traits changes, so I have to change the way I do things. I'm sure someone might say I'm controlling, though control is a talent I only wish I had!

I'm glad your sister and you are close. After such a hard childhood, many children barely talk to each other.

First welcome -you are at the right place I would say yes since your brother knows the business end have him do it before you are the one to need a nursing home-it will effect your health-my late husband was a PIA also the only thing that saved me was his frequent hospitalzations and rehab over 15 times often for 100 days in a row Call your social service office and tell them you are no longer able to care for her-she is already in the system with getting SSI-if your brother is willing give him 5 days to do it or leave your house for a few days even if it is a shelter-don't let her behaivor make you have bigger problems please find an AA group today and talk to someone-you do not deserve to be treated like this any more.

I am so glad to have found this thread. I'm serving as caregiver for my sister (1 month shy of 61.) The dementia has been coming on for about 7 years but I could not get her to agree to an evaluation, but finally a crisis required it and she has been diagnosed.

My parents are both dead, my brother ... well ...he's good at the business end, but doesn't have an empathetic bone in his body. (An expert has told me he actually suffers from Asperger's Syndrome, although he has no idea.)

My sister,,,,she's a PIA. She is nasty, negative, uncooperative, denies there's a problem, lies, sneaks, refuses to comply with any of my requests.

I'm sure this is the right place for me especially since I do not have 1 "warm fuzzy feeling" for either of my siblings. I've been in therapy for 17+ years so I've learned that I'm okay, I just grew up in a terribly dysfunctional family going back generations.

My sister has now been living with me for nearly 10 years. I did have the chance after the crisis, to permit my brother to put her in a facility, but I thought I could do it. He said she'd continue to destroy me. Well...now after enjoying a 4 month break while she lived at my brother's and he determined what would happen, she's been back her for just about 3 months....I'm back to my self-destructive behaviors....drinking.

Any suggestions??? Should I just say "good-bye" and let my brother put her in what she can afford on her SSI?