The Caregiver & Dysfunctional Families: How are you doing?

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..

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

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!

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.

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

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!)

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!!

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!

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..

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.

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?

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.

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.

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!

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.

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.

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.

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...

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

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...

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.

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.

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...

((((((((Hugs))))))) jessie and condolences on your father's passing. I am glad he went peacefully. Also glad that your bro stepped up to the plate and pulled his weight. I know you have much to do in the next while. Take care of you and let us know how it is going and how you and your mum are. Prayers

My condolences to you Jesse on the passing of your father.Things have improved a bit between my 89 year uncle and myself.He changes his clothes a little more often and has agreed to wash himself once in awhile.But now I find myself cut off from a family member after I refused to return my brothers ashes after 7 years.My sister in law who has heart failure wants them back so she can eventually sprinkle them with her own all over her property.I refused to give the ashes back because I am now the legal owner and dont want them scattered.As a result,I am told I can never contact my nephew again and am never welcome in her home.

Thank you for the kind words. Things are busy here at the moment. We made the final funeral arrangements today and the family started coming in. To make things a bit more challenging, the sewer backed up, so we have a plumber coming out in the morning. We are also expected 12 family members tomorrow. My mother wants to go out to buy some shoes and a dress tomorrow. I hope I can convince her to wait until Monday, because tomorrow is so busy. But when she gets her mind set, it is hard to unset it. We're trying to be patient with her, since she just lost her husband of 65 year.

I was looking forward to oversleeping a bit this morning. Didn't happen. My mother came in and told me she needed to go to the hospital because her pulse was 96. I told her that was normal and not to worry. She then called my brother and a doctor about it. I got up and tried to deal with everything.

This made me realize that things are going to be very different now. When my father was alive, my parents were a bit like a buffer for each other. Now there is only me. It is going to be hard to be right there on the front line, instead of in the backfield. I am beginning to think that caring for one parent will be more demanding than caring for two. We will have to see.

My father's funeral is this week. All is arranged except the financial matters that have to be tended to (social security, insurance, etc.). We are all handling things as well as can be expected. It's an uneasy situation, though. I feel like things could change at any moment and we could be totally swamped. I hope not.

Jessiebelle, I am so sorry to hear of the passing of your father. Yes, we in our family are experiencing what you described about your mom and dad having been buffers for one another. This was certainly going on with my mom and aunt, who passed in January. There will definitely be some adjustments, and I hope for you for the better. Well, no matter what, take of yourself, a big hug! May your father's spirit soar very high! Margeaux

JessieBelle.. I had to get these words to you faster then I could type them.. You have so much on your plate now you sound so stressed and my heart truly goes out to you.. but please while you have your family together at some point when your mom is not in the room sit them all down and demand they help you w what the future holds now in dealing w/your moms different type of care.. When you wrote how your mom came to you w/her pulse rate..well it was like you were here at my house.. I think sometimes they get so lonely all they do is dwell on every little thing.. and for them it doesnt matter what time of the day or night it may be.. for us it is non-stop and it is so very overwhelming.. take this time w/your family members to at some point talk with them.. even if it is one weekend a month from one of them and a day here and there from another to pitch in and be there for you.. Believe me it will make the difference.. You are now going to be her everything.. Don't wait until you are alone dealing with it all to call someone for help, try to make some arrangements during their time with you.. Please know that I do understand this is a time you are all coming together for your father.. And my sincere sympathy is w/you all.. but we all come to this site for people to care about "our" needs.. So I'm thinking of your future needs.. Take a deep breath and remember you can only do so much..

JessieBelle, I am so very sorry to hear about your father. My thoughts and prayers are with you and your entire family. It's sad to say, but many times the passing of a loved-one is what brings a family back together. It will be easier on all of you if you can all band together as a loving unit to morn your lose. I am sure that you father is up in heaven catching up with family and friends he hasn't seen in awhile...This is something I pictured when my father passed. Take care, and visit soon. We are all thinking of you!

You all are wonderful. The whole family was over this afternoon and evening. I am exhausted. Tomorrow is going to be very full, too. I'm dreaming of the other side of this, thinking how nice it will be to rest and think. I learned today that the funeral list had increased from 35 to 85 people. We are going to have to ask our Lord to bless the refreshments in the reception so that they multiply. I am so glad that so many people care about our family members.