The Caregiver & Dysfunctional Families: How are you doing?

Izabella, listen to julieann...if you do not have a church, call the nearest one! I haven't attended church in quite a while, but I was raised going, and I even attended parochial school. My grandmother was a "church lady" as we called them...she used to drop everything to help those in need. Don't be hesitant any longer, try it! If I myself could come and sit with your mother, I would! It's so sad to think that almost everyone here has families that are always "TO BUSY!" Just wait until they need something someday...I have a dear friend who has leukemia, and she has trouble even getting any family member to take her to treatments! It extememly sad, and depressing to me that more people do not know what is IMPORTANT! If you need an email buddy, let me know...I'll give you my email. :-) Take care!

Thank you cmagnum. I'm at home now, Mom probably slept the whole day on the couch, and is still sleeping. I keep telling myself to leave the siblings alone. You're right I can't control them. In my anger yesterday, I said something terrible to my Mom. I worte her a note this a.m. and left it on the fridge. Doesn't look she even opened the refrigerator today. I'll try to be a more loving daughter to her, and I have to try to control my anger and what I say. It's frustrating, Mom is the healthiest of her freinds and family about her age. However, Mom is refusing to participate in living.

I'm glad that you found a respite worker. It sounds like you need to detach from your expectations that your siblings will change. You didn't cause them to be how they are. You can't fix them nor can you control them. All you can do is put yourself on a healthier path and not divert from it regardless of what anyone else in your family does or does not do. Otherwise, your anger will turn into bitterness which will turn into hate which sometimes turns into a heart full hardened anger toward life as a whole. Waiting for them to change and repent is wasting energy that is better spent. You may want to write each of them a letter, read it aloud to God, a pastor, or a therapist, then burn it in a fire proof container, pray a prayer of release from their being on your hook to being on God's hook and cast the ashes to the wind. I did that concerning some anger that had built up in my own life with my therapist and it was helpful. You just might need some anti anxiety medicine to help with your understandable anxiety issues that are have a negative impact at work.

Well, I was finally able to get a respite worker, and it took about 2 months. I was at our home when the new respite worker arrived for visit #1. I was not there for visit #2, and Mom refused to let the respite worker in. My siblings refuse to visit her or even call her. She's dying of loneliness, and there's not a darn thing I can do about it. I called the respite worker today and we are going to try leaving the door unlocked tomorrow, and hopefully they will able to get into our house. She doesn't eat, drinks ensure, skinny as a rail. She won't call her friends, she won't go anywhere without me. If my worthless siblings would come over and just take her out grocery shopping with them, it would go a long way in helping Mom. But nope, they have no time for her, they don't care about her. I'm about ready to cut my siblings out of my life for good. If they have no respect for their mother, I have no respect for them. I'm angry, frustrated. I've ordered some religious books to help me get through this. What do you do when your Mom won't do anything without you? I think she just wants to give up on life. I feel like she's just sitting at home waiting for that day to come. Why? I tried to explain to her that the respite worker is helping me too. I worry about her so much, it's causing troubles with my concentration at work. It's also adding to my anger against my siblings. Anybody? Any ideas?

Sometimes we have to reach out of our comfort zone for help. When one of my mother's grandchildren died this winter, we called on her church. People sat with her the entire day, while we all did what we had to do. Do you or your mother ever attend church? You know that really doesn't matter weather you do or no, most churches will rally behind anyone in need. Make that phone call, and put this is someone else's hands, while you are caring for your son.

I tried today to set up nursing for my mom wile my son is in the hospital next week and everywere I contacted told me the same thing she does not need a constant nurse--maybe a caregiver and that is 70$ per hr.. the nurse that does come in since she got out of the hospital last week said that if I leave her alone and she needs help she can call the nurse hotline.. So.. I asked her if my mom is unaware that what she is doing is wrong how will she know enough to call for help..or advice regarding her meds.. sometimes I am totally convinced everyone is crazy.. from my family or what is suppose to be family to these people who are suppose to be in the medical field..I even broke down and tried to call a few family members for help.. everyone is to busy.. I seem to keep hitting a brick wall.. everytime I try to make things a little easier it just doesnt seem to work.. I do believe this past year has been one the hardest yrs. I can remember.. So many things all at once.. my husband and I split up for a few months and got back together when we found out our son was ill.. so I went through my mastectomy very alone.. and even though my husband is back I still feel very emotionally alone.. I dont know if anyone else has even felt to empty to even cry.. but thats what I feel.. Just goin through the motions and tryin to figure out how to divide myself in different directions..

Ucantcare2much-- thankyou.. and yes I will focus on Footprints in the Sand.. We know God has a plan for us all.. but when things just keep happening it is so hard to see.. again thank you for adding us to your prayers.. means so much to me..

I do truly appreciate everyones kindness on here.. we all know the feeling of people turning their backs on us when we need them the very most.. so reading words of support is so comforting.. I wish everyone a peaceful night..

Izabella, I was just rereading your post from yesterday...about your son and mother and yourself...I don't even know you, but my heart is breaking for you :-( I, once again, added all of you to my prayers. I know how you feel about doubting your faith at this point. I'm sure we all have had this, I know I have. I guess that's why they call it faith...you have to believe even when it seems it will do no good! Think of Footprints IN The Sand! He is and will be there for you...please don't loose your faith! Thinking of you!

Yes, Izzie, you will not be overlooking your mother's care by hiring a nurse so you can be with your son. You are being pulled in two directions. I would hire a nurse if it were me. God bless you and follow your heart!!

Izzie, Hire the nurse, be with your beautiful child. I can hear what your heart wants and being with your son could make all the difference in both of your healings. The worst that could happen is your mom dies. In my very humble opinion that is between her and GOD. This is time you can never get back with your child. Imagine what it would have felt like if you had a mother who gave you the love and support you needed during your illness. I don't mean to sound cold to your mom, but this is your child, your life, and he really needs you and by the anguish I hear in your heart; you really need him right know too. Your mom won't like it, she will probably pitch a fit...but right now it is either her or you. This is time you can never get back...follow your heart. I ask GOD to give you PEACE, you already have more courage than anyone I know. Deepest Love (You can do this!)

of course jessie - my prayers are with you and your parents

Amen, sharynmarie.

I've spent the day at the hospital with my father, group. Tomorrow we are headed back again. I'll be absent mostly for the next few days. I hope you will keep us in your thoughts and prayers.

Margeaux, thanks for asking about my wife and her recovery from the carpal tunnel surgery. During and after post-op she had a lot of nausea. She has not had to use the pain medicine as much as she anticipated. I'm still driving her around here and there. Given it was her right wrist that was operated on, she is very limited with what she can due with her left hand.

The narcissism game, learning about it and recovering from it is quite a journey!

I hope that my own health improves since my latest lab work shows a shortage of B-12, Folic Acid and my Testosterone is too low despite the fact that I take a very good multi-vitamin and a dosage of testosterone everyday. Maybe this will help me with my lack of energy, but we will know in three weeks when I have more lab work done. I'm getting my CPAP machine setting's adjusted on Thursday because my sleep apnea has evidently gotten worse. Even though, I am typing right now, if I were to just stop I would fall alseep very easily and that is true of me all day long. Have a good day!

Cmagnum, I hope you and your wife are dong good. I read she was I think it was a Carpel Tunnel surgery? Yes, oh boy, the alienation topic. That narcissistic aunt who just passed back in January, made all of us jump through hoops, really for all of her life; it just got worst when she became elderly and of course sicker. She, who never had any children, and mom who had a relationship like they were joined at the hip, had her thinking as if we her niece's and nephews belonged to her. So this is how we "inherited," the care of her in her final days. But truth be told more of this responsibility has fallen on my sister an myself. My two brothers are very emotionally disconnected even w/their own issues. So they don't do well in this department at all. But for some of the transgressions committed by this aunt before, and during her illness, she totally managed to divide and conquer even between the siblings. Add to this, I'm realizing after finding more out about narcissism, that mom also has been this too. I just wish at least during my aunt's reign we siblings would have been way more in sync, and realized this, and aunt would have gone into a nursing, or assisted living home. Well, now we're still dealing w/mom w/the ALZ. Funny enough though her experience at least up to now, she's mellowed out in terms of her personality. So as my sister says, "she's the easy one." I'm glad for you and your wife that your mom is in AL center. I'm really learning a lot from your's and other posts on this wonderful site. Thank You!
Have a wonderful day! Margeaux

Banshee--and JessieBelle--- There is not too many things at this point of my life that leaves me speechless.. but.. the compassion that you both expressed truly touched my heart so much that I dont even have words to fully express this to you. both. and to say "thank-you" just doesnt seem to be enough... I live in this world where I feel like I dont matter.. and when I read your posts I felt as though I did.. so my "Thank-you" is so sincere.. Please know you both made a difference in my day and life..Bless You both..

When I posted my detailed day to day life.. I felt like I was complaining and being so negetive.. but then I thought that is why we all come to this place because this is the only place we all have to fully release all of those emotions we keep within... So having said that.. I will share how when I recieved the call from my sons Dr. yesterday I lost it.. I called him to give him a daily update and tell him that I feel one of the new meds my son is taking to help prevent the seizures is making the moods worse.. but the Dr. informed me that it is not the med. it is as he put it the disease itself.. the part of the brain that is affected also controls moods..the Dr. wants to admit him into the hospital for one week and do a constant test on the brain and prevoke seizures to occur.... this will begin the testing before the surgery can be done.. well this broke my heart.. I have seen my son go from one person to someone I dont even know.. and while I was putting clothes in the wash I lost it..I sobbed over the washing machine... I remember when he was in college.. he was so full of life..he has a smile that really does light up the whole room..when he had to drop out of school I told him it would only be for a month or so.. wow..was I wrong.. and now I do my best to make him smile.. I tell corny jokes..ect.. and I know it doesnt help matters w/him because having my mom here to care for weighs on us all.. She is forever calling my name.. asking the same questions over and over.. always some issue going on w/her.. and since she got out of the hospital last week my house looks like a hospital.. I have oxygen supplies.. I have a telemonitor.. B/P cuffs here and there.. med charts.. I tried to reach out to one of her Dr.'s for help as I mentioned in a previous post for them to test her for Dementia/ALZ.. but they all acted like the 10min they spent w/her was enough to make a proper diagnosis.. and when the one finally agreed she left before the Dr. came in.. Because according to her its normal to to be forgetful at 82.. well its past forgetful.. she told me I should do her like they do horses and take her to a field and shoot her.. so.. I just dropped it until I can find the time to deal w/it .. Right now I have to figure out how I am going to be there for my son while hes in the hospital and here for my mom.. I tried to get a nurse to come in to stay w/her when I am gone but she doesnt want a babysitter..

I use to put all my trust in God.. I always felt there was a higher power to lean on.. but now I wonder if that is just a myth that keeps us all going when life becomes to hard.. because I have prayed hard.. I have pleaded w God to open just one door.. and he does.. but it is not a door that has anything good on the other side.. I said to God.. I have never asked to be wealthy..live in a my dream home.. never material things have been what I have asked for.. just health matters.. and with that request.. I got Cancer.. and severe nerve damage in my leg from 3 failed back surgeries because the Dr made a mistake in surgery all in one year then my mom came to live w me and then my sons health changed.. that was the last time I asked for help.... I preach to my sons.. put your faith in God.. he does hear you.. I tell them things could be worse.. I tell them God has a plan for us all.. Because they are young and I want them to have hope.. and faith in God and Life.. so my feelings regarding the issue are feelings I keep to myself.. I have to be their source of strength..

I can so relate!! I grew up in a home with a mother who has a Schizoid Personality Disorder. My father was an alcoholic. My mother now 83 has Alzheimer's. She is so out of control with her paranoia but can't really do anything to help her. When I was in my twenties I knew my mother never really saw me for the person I am, nor would she accept me as a human being separate from herself. It's always been about her and how her family members abuse her (she is the one abusing). What has helped me is that I emotionally disengaged from her back in my twenties. She can still hurt me with her accusations, I am able to deal with it better than if I were still looking for her to love and accept me. My sister is older than I,and she is only now learning to disengage emotionally so she hurts much more than I do. My mother gives my sister a harder time because she is divorced where I have been married for 35 years and my mother is afraid of men. Over the years I have also held my mother accountable when my sister would not because she has been looking to be loved by her. My mother cannot love anyone.Yes it sooo hard to care for an elderly parent especially when there has been abuse, lies and distortions within the family dynamics. God Bless all of you and back away for awhile when things get to be too much.

Jessiebelle, you made me laugh tonight so much when you referred to your folks as two balking mules! All right!! I'm all about humor!! Good for you! O.K., I'm no holy roller, but I'm going to chant for you and yours. Love, Light, and hang in there!
Margeaux

Margeaux, you didn't overstep at all. I've talked to my mother about getting tested for her memory to see if there was anything that might help. The answer was no. Sometimes I read about how people should take their elderly loved ones to the doctor to have tests and get treatment. The stories are "so happily ever after," and I wonder who these ideal loved ones are. Getting mine to do anything is like dragging a balked mule out the door. They put on all four brakes. People often overestimate their abilities when they get older. Your aunt sounds a lot like my mother. She is going to do what she is going to do, and it can be almost impossible to stop her.

My parents built a box for themselves when they were young. They made no friends and kept everyone out of the house. They are trying to maintain that status quo. No to assisted living, no to people coming in, no to my father going to the doctor. Every door to assistance is quickly closed.

How much nicer it would have been if they had come out to TX to live with me. The community was wheelchair enabled. There were no stairs. Everything was made for seniors. The hospital was 2 blocks away. The cost of living was lower. But I couldn't get them to budge out of this house. Two balking mules.

But when I read Izabella's problems, my own seem small. Mine are just irritating and I know they will work themselves out. I would be totally overwhelmed by what is going on in Izabella's life. :'(

Jessiebelle, how are you doing? I read your post, about your dad, becoming weaker, and I'm very sorry to hear about all of what you're experiencing at this time. In my family we've gone through a similar experience while my aunt was alive, and we still have mom to contend with. Both mom and her sister have had this attitude driving the whole scenario, (that they w/leave relatives some money as inheritance). My narcissistic aunt wreaked havoc, by changing her will, and POA several times. Mom can't do much anymore in this regard since she has ALZ. But has your mom been diagnosed for Dementia, or ALZ? My sis had to go round and round w/the same issues you're currently facing about having your parents, and pardon my bluntness for being so stubborn and having their way even under such trying circumstances. Mom & sister were/are fortunate in that they have money and their own insurance. My sister who's lived w/them, had become a slave to them. My aunt during her reign, at the very end was insisting on getting out of bed quite against Hospice nurse's advice, to go join my mom in the living room to watch tv, as she'd usually done. Oh boy did the poor paid caregivers ever have a time w/this, because aunt was in such a weakened condition, she could no longer sustain her body upright on the sofa. Eventually she'd start to slide off the couch. Well, it got to a point in which a couple of the CG's couldn't pick her up off of the floor. One CG, even had to call a neighbor to come p/up my aunt off the floor. control by especially my aunt. Anyway, I made earlier suggestion about maybe getting your mom diagnosed,
since I used to always urge my sis to do this, w/respect to my aunt. I thought that by doing this, if my aunt was having Dementia, then my sis having POA, probably could have gone ahead more directly about some other decisions going on in that household I really think it's wonderful when people can be so forthcoming to help their parents out in these situations. But at some point, it's also I think very important for CG's & parents to realize that some of these tasks need to be done by other people. O.K., I hope I haven't gone over the line here w/my opinion. Love & lot's of light! Margeaux
But I've recently been going through this very same thing in our family and have had to be the one counseling my sister about this.

Izabella, I don't know how you hold up. You have so much on you. There needs to be four of you -- one to take care of each of the people you care for and one to let yourself get well. Sometimes I look at people who seem to have such easy lives and wonder how they escaped the problems that others have. You have enough for four people. I wish you had more help and the burdens would stop adding up.

I am most concerned about your son. May God be with you as he and you are going through this. I don't like to see young people suffer. I hope that surgery and rehab will restore his life, so that he can enjoy it. Hugs to all of you.

Izzy, my darling I don't know what to say, I am crying so hard I can hardly type. I don't know you and I have no answers. I don't know if you believe in a higher power so don't want to offend. Today and in the coming days I pray for your son, and for you...I am sending you healing and great love. The world is a better place because of you. You are a phenomanal being...your courage is beyond inspirational. Thank you, my heart to yours.

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!!!