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michfla - I am not counting or depending on some "wonderful" caregiver to take care of me - I have seen what goes on in many nursing homes (do you think I am uninformed?) and I will tell you that the genuine caregivers are in the minority. Many can't get jobs anywhere else at best, at worst they can be sadistic or careless, many have been downright dishonest. If it were not for my keeping mom at home (by the way, she boasts to her friends, doctors, nurses, and social workers about how well I take care of her) I have not the slightest doubt that she would be dead by now. And yes, I am a grouchy old fart, irascable and argumentative - not only is it one of the ways I keep my individuality but it gets me attention when I take her to the doctor or hospital. I am a pain in the ass and proud to be. (It also keeps mom alert, by the way...LOL I have establised boundries and expect them to be respected).
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Monkey, Take care of you first and foremost because I know for a fact your health and well being depends on it. I take care of my MIL and I have given up my life, You might as well say I have no life other than taking care of her. Next week we have a Social Worker coming in to help with me getting back my life before I absolutely end up leaving and then her 3 sons will have to do something...Right now they just expected me to do it because I have a disability of my own and I was home anyway. I thought it was to nurse her back to health, which I have and then she would go home with night assistance...I never use to be so down...I have good days, but they are far and few and in between. So, I suppose what i am saying...If she has cancer...You have Hospice and other resources on your side...TAKE advantage now so you will stay healthy yourself...Best to You..HUGS to you and your Mom...
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My father and I had not dpoken in 20 years. He was a very self-centered individual. My mother asked me to just try to meet with him as his health was delining. I swallowed my pride and we did meet. During the meeting I told him the only hope of a relationship was for us to leave the past twenty years in the past and to just start anew (maybe we are just to much alike). Seven months later he was in end stage CHF. Two months after that I had to quit my job that I loved to take care of him. My Mom just couldn't do it. So for 10 months I basicly put my life and career on hold and took care of him until the day he passed away. There were days that I was very frustrated and wondered why I had allowed myself to get in to such a situation. I had to force myself to not look back. I made a decision to be his caregiver and would not allow myself to look back. All the best to you and your Mom. Hope my story helps you.
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Coach, it's wonderful that you were able to take the high road, put the past aside and take care of your Dad. Don't forget that what you did was surely a tremendous help to your Mom and you took the burden off of her. At least you'll always know you did everything you could. I don't think you had to swallow your pride as much as your father had to swallow his, even if he wasn't able to show it. You are the true measure of a man.
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Michfla317.......Thank You for the very kind words. It has been almost 6 years since my father passed. I look back and am so happy we put the past behind us. I do miss him everyday. Thanks Again.
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DT, I took my father, who had Wegners (was in remission), lung and brain cancer out of a nursing home after he had fallen four times. I have worked in the medical field for several years and know how the system works. I also know how to get what I want from the staff. However, after some genius from physical therapy left a brain cancer patient in his room unattended, that resulted in a terrible fall on concrete, I wasn't so nice. Needless, to say the social worker was huddled in a corner. How would they feel if this was their dad? Even though this facility was ranked amongst the top, the care, food, and their ability to even keep track medications was horrible. I caught several medical errors. The speech therapist couldn't figure out why my dad wasn't eating.....well, genius with the patient being on certain medications, you might want to check for thrush. I had to figure it out. So like you I don't have unrealistic expectations of my care when I get to this point in life. Anyway, my mother's situation is different. She had a very complicated heart surgery that did not go well. She has always been a very controlling, demanding, judgemental person and will not accept boundries. I stayed by her side the entire time she was in the hospital and was her patient advocate. If a family member isn't with the patient then most of the staff will not do their job properly. You need someone there. If someone is this difficult and will not accept boundries and all you're expecting is to be spoken to with respect and in a civil manner. Then what do you do at this point? Due to this affecting my health, I had to step away until things change, per my physician. Unfortunately, at 76 I highly doubt that she will ever change. She was abusive to my dad when we brought him home to die. Needless to say, this is when I made a major stand with my mom. I wanted my dad to pass with dignity and to get the best care possible and not listen to her horrible comments. You seem like an intelligent man, what do you suggest? My husband believes that I only have two choices, one is to just take the abuse and the other is to continue what I am doing, which is staying away. I do love her and will always make sure she is well cared for, even if it is at a distance. It is so sad that she doesn't want a happier life but I suppose that this is from my perspective. I'm not a therapist and I do not know how to handle this correctly.
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(((((((hugs)))))) Prayingdaily. I am not DT and hope he will respond as I agree he is an intelligent man; however, our situations are so close I hope I can be helpful too. My mother, who is as you describe yours, was always abusive to the famly and particularly to my father when he was failing from dementia and could no longer meet her expectations, I visited, assessed the situation and gave some advice about the main issues, which my mother followed, but gave me no thanks for - quite the opposite. It gave them several more years of decent quality of life together and my mother ended up benefitting financially from their new situation. My father who ended up in a nursing home died some years ago and later my mother moved to be close to me for family support. I have given that for the last 15 years and recently have had to distance myself from her due to the effects of her BPD on my health. Where to go from here? I have realized that, although it is my responsibility, which I take ungrudgingly, to see that her needs are met, that does not mean that I have to be the person to meet them - to be on the front line so to speak. Mother hires an ex-nurse who runs a seniors support business to shop for her, take her to her doctor, the hospital etc, who checks on her several times a week. In addition her seniors complex has nurses aides, and other people who can be helpful. We have also looked into additional care of that type if needed. My cousin's son, who lives in her city, keeps in touch with her and helps a little as he can. Her church has tried to help her but with the BPD that has fallen apart. A member of a senior's organization has intervened for her at times too. I believe that between taking the abuse and staying away altogether there are alternatives which involve other people doing some of what you were doing, yet keeping "an eye" on things to ensure that they are proper. I am in contact with all of these people. Should the situation change so that I am needed there in person, I will have to deal with that at the time. I know that seniors need advocates in hospitals, for example, and I have taken that role for mother before. I hope you can find the "middle" road through your predicament. Blessings Joan
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Thank you Joan, I appreciate your thoughts. Right now my brother, who I really hate to say this, but is an alcoholic, has pushed me out of the picture.I cannot rationalize anything with someone who is drinking. I know when he gets the financial help he needs once again, he will disappear. At that point I will probably get a call. Her brother, who is a retired minister, really doesn't know how to handle her or the situation either. My mom just couldn't understand that I had emotional issues I was dealing with also. Here's another twist, my son started college last fall within the first few weeks his roommate died from a very irresponsible, reckless decision. So while all this was going on with my dad, I had a 19yr old to deal with as well. My mom who has always been close to my kids never acknowledged that my son was struggling emotionally. She would get agitated when I would be talking with my son instead of her. She does not call her grandsons, one of which has a beautiful 6yr old daughter. It's all about her. I hope there is an answer that lies somewhere inbetween my husband's two options. I feel like her life could be so enriched by her grandsons and great granddaughter, and daughter but again that is my perspective. I would love to share some things with her but it's impossible under these circumstances. I am off to see my granddaugher, another opportunity lost with my mom. God Bless.
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((((hugs))) again prayingdaily - No you cannot deal rationally with someone who is drinking anymore than you can deal rationally with someone who is like your mother or mine. That is a very difficult situation. My sister is not an alcohoic but has some of mother's personality traits and whatever her involvement is, she is out for what she can get and that only. No, your mother cannot understand that you have emotional issues to deal with, and, yes, she wants to be the center of attention all the time. I have had complications too. My youngest son was killed nearly 9 years ago and mother was not understanding at all of what I was going through. As you say - it is all about her. My children have distanced themselves from their grandmother as she has ripped strips off them as well. A couple of them kept a little contact and my daughter makes sure that her children see their great grandmother very occasionally. No, you cannot share the things you would normally want to share with a mother and I find it is better to accept that. As for her life being enriched by the younger family members, I understand your feelings. Our mothers are not "normal" so "normal relationships cannot be expected. I find the more I can accept the realities of who my mother is, the better I can deal with whatever comes up, I am finding I need to grieve the loss of my childhood and of having a caring, kind, nurturing mother. Even at a young age I was the "caretaker". I hope I did better with my children. Blessings and prayers Joan
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Hugs, Joan. It sounds like you have learned to cope with a very painful reality.
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Thanks jeanne - still learning.
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Praying daily and emjo - thanks for the laurels - I really do not deserve them. You guys are really dealing with a lot more than I am, when it gets right down to it I am just dealing with hurt feelings and loss of - something I cannot name. I had a dream and an image of what I wanted, and it has been forever distroyed, but I am not dealing with dimentia or cancer or alchoholics (have you tried ALANON? sounds like your brother is being enabled every time he turns around, and you are the one who is suffering). Joan had much more in the way of good advice, but let's keep sharing, we will get through it, or somewhere...
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DT, yeah uh huh, you deserve the accolades. Don't deprive yourself of the compliments.. hugs
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I can tell you my story.... I lost my home long before Mom's dementia(my own situation) with no question Mom helped me, to my surprize. I lived thru that and at that time I moved in with her. Then I didn't understand but now I see that there were signs of dementia. Then there was a fire in the house, I lost the rest of everything, material things. Luckily my dog warned Mom and they got out of the house safely. Well thats when Mom's dementia was set off in high gear, yet at the time I didn't realize that was the case. Insurance was great covered everything. We were staying in hotel and one day she knocked on my door and told me she would not sign for my room (covered by insurance). So she wouldn't even speak to me nor did she realize I was then homeless. Luckily my brother inlaw had to convince my sister to let me stay with them(yep my own sister). No clothes... no shelter... no money ...she had to be convinced. So after that I refused to talk to Mom for a few years. Mom was slipping... I was still angry with her and my sister helped her a bit but I think it was more for what she thought she'd gain in the long run. Instead of taking Mom to Dr she went to lawyer(not for Mom's benefit or care), actions speak louder! I managed to get my own place and life back in normal status. By this time Mom was getting worse and needed more care. I started understanding why Mom was acting the way she did. I forgave her and did whatever it took to see to her safety and well being. Having been thru all that I realized nothing on earth that was tangable was more important than a LIFE!!! In more than one way, I have been blessed and careing and making Mom's life comfortable and safe gave me a peaceful feeling in my heart I will never regret or trade for anything monetary or tangable. I know that I will be at peace forever and never have regrets. This is a gift and not a burden. My Mom gave me life and the strength and I have learned so much about people and I'd rather suffer being a careing soul than an uncareing soul. I don't wish this scenerio on anyone but thru it all I keep a possitive attitude and things fall in place.
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Wuvs, catastrophic loss definitely changes the way we look at the world and the people we love. Having survived Hurricane Rita, lost everything, got relocated to a town 300 miles from home. Nothing but the clothes on my back, all my "stuff" gone..and in a daze of confusion, loss, and trying to find a job and a place to live.. I understand how you feel, and how getting to the other side of something like that changes you forever...I see people differently. I see my life differently.. I see myself differently.. and how I choose to "be" in the world.. Thanks for posting, I understand how you feel, hugs to you.
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wuvs, ladeeda, and emjo have been much bigger people than most of us have been - laurels and accolades on their strength of characher (and backbone, for that matter -mine could not have taken it.)
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DT, you just never know what you can transcend until you are given the challenge..my experiences have taught me to hear what people "aren't" saying, if that makes sense, to laugh with all I've got, to cherish those I love and that love me back, to honor peoples choices whether I agree with them or not...to remove myself from toxic situations , if that means only changing my perspective about something... and to feel an empathy toward suffering and loss that reaches a place I did not know existed within me. It also taught me to never take a shower for granted, you would be amazed at how long you can go without a shower, but when you finally get one, you don't waste the water... thanks for the atta-girl, but life handed me situations and it's all about choice on how I proceed.. and proceed I will. I embrace change, it get's me out of my comfort zone.. and when you look up and you have no comfort zone, it is simply gone, then you really "get it" it was inside all that time... hugs to you this morning
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wuvs, DT, ladeeda, - you don't know what your backbone will take till you go through something. Really what choice do you have - not whether or not to go through it, but how you go through it. None of us would have chosen the losses we have experienced. I agree that loss changes a person - for better or for worse. Ladeeda, I also find I want to love more and yet tolerate fools/negative people less and remove myself from their sphere of influence more quickly. In my case my priorities have changed to some extent and stuff is just stuff. I would far rather have lost all my stuff than my son. More stuff can be acquired but a child cannot be replaced. I accept God's timing in his life, but miss him every day. Wuvs and Ladeeda, I am not trying to downplay what you and countless others went through - just sayin' where I am at. I know what you went through was horrendous and life changing, DT, I appreciate what you wrote a few posts back "let's keep sharing, we will get through it, or somewhere..." That is what it is all about isn't it? Either we build each other up or we tear each other down. No man is an island...
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I asked the same question in 2004 when I took on caring for my mom. Since then I had to come to the realization that I did not 'give up' my life, my life CHANGED and became one of service. The focus was on my moms safety and care. Once I faced and grieved for the life I left and started choosing the responsibility of my moms care, my resentment diminished.

The focus on my loss was keeping me stuck, the acceptance of challenge put me in a more positive place. I had to financially adjust my budget and include myself in my moms payroll. Along with doctors, health aid workers I became her household administrator and took on the job as one would any job..it just happened to be for family.

Once I was able to get the family on board and all the details ironed out...how much and how to pay and what were the boundaries etc....the rest was just being there to help her.

Yes, I also have to sell my house, lost my job and am not able to keep intimate relationships because I am on 24/7 and have little energy left for social life...My health has now taken a turn for the worst...but I am in my 60s and that has a lot to do with facing my own end....

Getting help to figure out how much of you to give and how long you want to do this...is important. Not knowing the end is very stressful and guilt can hurt the best of intentions. There are no answers for each person must ask their own for their own situation.

I wish you luck....and hope you are present to share the magical moments of the end of life. They are as special as the start of life...To be of service at the end of life may be the most noble challenge one can face today. It needs to be freely chosen or it becomes slavery.
Big hug to you.
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emjo, No there is no loss on earth that compares to loosing a child. That is something only the strongest can survive. I can not begin to imagine what you have had to learn how to do without his presence in your life...and you are right, stuff is just stuff and can be replaced... not so with a child.. and I do agree with you all the way about not tolerating fools. I walk where I have to walk today and do not explain myself. My credo is , " lead me, follow me or get out of my way". Many people are my teachers. some teach me how to be, others treat me what not to be, but either way I have a journey and I am on it, so don't try to hamper me from getting to my destination. I have the utmost respect for you and how you have picked up the pieces of your broken heart and took one step at a time...hugs across the miles to you...
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thx ladeeda - Again what choice does one have but to survive. We have "paid our dues" and need not justify nor explain our lives. I have picked up the pieces of what is left, but one large piece is missing. That is what it feels like - a continual aching void in one's heart. One learns to live with it, and after a while it doesn't show to the outside world. Thanks for giving me the opportunity to share - it helps.
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TILDA, I totally agree with your statement about the magical moments of the end of life which are as special as the start of life. That says so beautifully what I experienced.
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I want my Mother to understand that it is God's love for her that is shining through my Caregiving. It doesn't matter if you have a Mother who was great and loving to you all your life or a Mother who was not, it is about God's love and in God's time. Mother and I are blessed to have this time together.
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Love can be unconditional, and yet boundaries on what you will tolerate and what you can realistically handle are not wrong. I think people who feel they made the decisions on how to give care can accept more than people who feel trapped by the behavior of others.

I am currently watching a cousin who opened up her home to another cousin with serious mental illness and personality disorder - out of total love and concern - getting run roughshod over and lied about publicly to the point of it damaging her reputation and threatening her livelihood. So she is trying to help find an apartment that she can afford while grappling with her own health challenges and work stresses that have been made much worse by this ordeal. I've only managed to be there via FB and phone calls and round up some other family support. Tough situation now, and nothing she was not warned about, but I think she would have regretted not trying to see if the arrangement might work at least as much as she regrets trying it now.

Hugs to everyone on here!!
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