The Caregiver & Dysfunctional Families: How are you doing?

JessieBelle,so very sorry to hear about your father's passing.. I'm sure as you said these days ahead will be very busy and very emotional.. just take one day at a time you have been through a lot.. I wish you and your family peace during this difficult time.. God Bless you all...

JessieBelle, sorry to hear about your father's death. Love and prayers for you and your entire family during these busy days ahead of you.

Hi, everyone. My father passed away this afternoon. He was feeling bad this morning at the hospital, but picked up a little bit. He ate a good lunch and enjoyed the turkey he picked off the sandwich. Soon a rattle settled into his chest and death followed a bit later. I'm glad that my mother, my brother, and I were there with him when he left.

My brother has really stepped up this last week. He and his family has been champions. They gave me yesterday off from the hospital and brought my mother home. I was able to get a lot accomplished. We had called Hospice in today. We planned to take him home and set up a hospital bed in the family room. He did not live long enough to come home. He passed as peacefully as could be expected. I am glad that he is at peace now, because his suffering had been bad during the last couple of weeks.

Everyone here is okay. I know we'll be busy the next few days. I wish that dying was easier. There is so much work to be done at a time when we all just need to rest.

Oh the drama is fun trust me...now they want to drive down here...I did get a chance to take a shower and my sister is taking the bull by the horns ignoring me calling her out ....then hubby has been on a morbid bent here lately...i do not know how to get him out of his funk and i still have to call ssa to see where the award letter is at and i need to get a hold of the life insurance company again they are suppose to send some down here to talk to me get a lot more crap straighten out before i renew hubby home care medicaid plan...live laugh n love but never scream they say unless ur having orgasm....hmm that would hit the spot if hubby wasnt feeling so poorly lol...

Other thoughts that might help..and I know you are feeling more like running fast and far from everything,,so take a breath..here we have an agency on aging..check what is available in your area...we also have an information hot line..411....they will always point you in the right direction, and if we have it in Maine, you probably have it where you live...lay it on the line to that worker, and listen to all they say...have you checked the begining of your phone book..ours has lots of ideas for every kind of need out there...

As for yourself..take a good book, the newspaper, or favorite mag, run a hot bath, take a radio with you to tune out all the chaos going on outside the door, lock the door and give yourself 20 minutes to be a woman again..

Sounds like help in on the way with your friend coming to stay. While they too may be leaving drama, it will give you someone to laugh with, hug, and a friendly face, but most of all someone in your life WHO WANTS NOTHING!! In my prayers

I have had the longest day of my life...not feeling well and severely depressed that I slept all day and my sister the selfish woman she is being still hasnt sent my dress like she is expecting me to wire her money to send it. I already sent money to a friend of mine who is trying make her way down my direction to reset and reboot her life and escape the drama especially the bad. she will be living with me for a few wks until the landlord until he comes back. I never had a day where i slept all day and the kids want spaghetti tonight . I am dying for help with everything to get out of this funk...

Izbella, what a frustrating day you have had. I don't understand the nursing homes saying your mother does not need to be there when she can't live alone safely and you as well as your family are drowning while taking care of her while her biggest issue is that your husband did not say hello to her today. Even if he had, she could have forgotten it. I hope things go well with your son's medical issues.

Izbella, you're being to hard on yourself. You're human. Everyone deserved to be loved, especially when you're hurting. Take a little break, if you can. Go buy yourself a nice treat, say a cupcake, or a piece of pie.

julieann-- I wish our church was the type where they did offer support of that type.. but Im not sure if it is our church or just the people that attend but either way I dont have that option.. I would gladly welcome any help.. but I truly have no one to step in and help me at this time.. but I thank you for suggestion..

My mom is not an easy person to reason with..infact she is at times very stubborn.. I feel bad saying this but selfish.. she is very angry today because my husband did not come in and say hello to her.. and because of this reason she wants to leave and now go back to her house.. and at this point I would pack her up and carry her on my back to her house.. but then reality sets in and I know this is not an option..she cannot be alone.. so now along with getting my son together for his hospital stay I have to try to reason with her.. A part of me is furious with her that she would do this to me now knowing all I have going on..and then part of me feels maybe she is that much not in her right mind and she doesnt fully grasp what she does or says.. I have developed a condition I never knew even was a condition.. "Stress-Hives".. amazing how stress works on our bodies.. and my mom is worried because my sister has a very bad cold.. that made me so angry yet I found myself laughing.. a cold is my sisters biggest problem..she has no kids and works part time.. and somehow this is ok.. I told my boys if I ever treat any of you as you have seen me treated.. please put me in a nursing home and never give me the pleasure of even a visit.. I wouldnt deserve even that.

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.