I am the "absent" caregiver - I live 600 miles away from my mom who is dying of cancer (liver, pancreas, colon, intestinal) and only has, at best, a few weeks left. My three siblings are her caregivers because they all live within 100 miles of mom and can split the time amongst themselves and their children. I am a single working mother solely responsible for my son's financial well-being, have my own business (so I can't just take paid vacation time), and I am struggling financially. My car needs major repair to top it off. Recently, My fiancée, son and I went to visit my mom for a few days. When I walked in, mom made me cry because she said, "Oh, oh. . . .it smells like Lynn is here." I have a very special distinct perfume and she smelled it as soon as I walked into the door. We had such a sweet visit, but about four hours into it, my mom asked me to leave because she was afraid my one sister was "about to lose it" and she also told me that she didn't want me calling her regularly from now on because every time she hangs up after I call, there is "drama and commotion". I apologized for the pain that caused her and I left her with a hankie covered in my perfume so she would always know I was with her. I was so afraid that my sisters would wash it as soon as mom fell asleep so she would not have it any longer.
I know there is A LOT of anger and resentment from all three of my siblings toward me - they are NOT quiet about it with other family members and it all comes around to me eventually, even through my other three adult children. I have tried to get my siblings to talk to me about what is happening so that I can explain my circumstances, but all they do is yell at me about how I am unloving, selfish, and hateful because I won't drop everything and move in with mom and take care of her for them.
You see, up until a few years ago, I was married (to an abusive husband), a stay at home mom who DID jump whenever mom needed help or whenever they demanded I run. I WOULD drive 600 miles to do whatever was needed - in fact I was going almost every other month to mom's. I also had better finances and was able to pay mom's bills when she forgot to pay them. We even went shopping a number of times for food because she was low on money and food. They are all used to me being able to just drop everything at their every demand. I cannot do that any more due to my circumstances.
I am going through my own mourning and struggle right now, and not just because of my mom's illness and impending death - I can't call my mom without running the risk of being hung up on, I can't talk to my mom whenever I want because whomever is there will cause trouble after we hang up and then mom doesn't want to talk next time I call. I am hurting so much inside because the only connection I have is by phone and they are taking that from me. I am the only spiritual one in the family and mom USUALLY likes to talk to me about God because I am the only one who understands her needs in this area.
I will confess, I have not been a perfect angel and have gotten very angry on several occasions and let some of them have it because of what they say and do. It has not helped - and in fact only served to make me appear more selfish and "unstable", according to one sibling.
Noone seems to see how I feel - my mom won't be here for my son's in a couple years, she won't be here for my wedding next year, or to see how successful my business is becoming. I won't be able to take her to Hungary or Italy like we dreamed. I am so torn and hurting inside and my siblings only seem to want to strike out and hurt me more.
Soon I know they will start asking about her funeral - at this point I have decided that I do not wish to go. My fiancée has said we should have a special memorial service here, at our home and at one of the places mom used to love to visit. He said that might be better emotionally. Even my son does not want to go - he said he got to say goodbye when we visited and that is enough. If I go to the funeral, even to try to be there for my adult daughters and my granddaughter, it is going to be a mess!!! I will get flipped off by at least one niece, I will get accosted by at least two sisters, and my other relatives will certainly not want me there. I wish I could do more - financially and physically for my mom, but the best I can do is be here for her spiritually. She says I love you each time I call, she says she misses me so very much and wishes I were there, but she also says she understands and to take care of my son for her. She even apologized for not meeting my fiancée sooner and for not being able to come to give me away next year.
Please feel free to ask any questions or play devil's advocate. I don't mind - I am just so lost and confused at this point. ANy ideas???
Can you see where I'm going with this. The truth is I am able to forget. I can forgive and I can even more strongly I can forget those little awful episodes that some others carry with them throughout life. I don't believe I am special because of this. For a long time I realized that I forgot a lot of what had gone on in my childhood, and I just chalked it up to being a child of an alcoholic. I didn't think this was good or bad at first and now I think mostly it is bad. But this forgetting of detail has built in me a lovely capability to forget the nastiness (what nastiness? she asks) and the wrongs that might have been done to me by my family or even by my first husband and his family, though I have to say they were very quiet and for the most part, very nice, unassuming people, at least until I filed for divorce. I will give one specific instance of my forgetting. In 2009 I took my Mother to see her Mother, who had three months before turned 100 years old and was given a small party by the NH staff, a party we could not attend, and so on Mother's Day I said come hell or high water we are going to see Gram! The drive was two hours long. There was a good chance that my aunt, my Mother's much younger sister, from whom she was estranged, would be visiting because of course it was Mother's Day. My Grandmother's fondest desire was to see her two daughters together and speaking to each other in her presence. I neglected purposely to advise my Aunt that we would be visiting Gram. I however prayed that she too would be visiting her Mother for Mother's Day. As we walked into my grandmother's room my aunt was quietly standing over the bed. As my Mother rushed to her Mother's side her sister stepped every so slightly away from the bed. But then a wonderful thing happened. They embraced and began a very tentative dialogue, mostly about their Mother's health. Unbeknownst to me or the thereof them my husband quietly set up an unobtrusive video camera and recorded 45 minutes of laughter and joy. We stayed perhaps for four or five hours and later had to turn down an invitation from my aunt to join her at her home. As we left there was long hugging and kissing all around. I called a nurse to put down the bed's rails so that my Mother could closely embrace her Mother, practically climbing into bed with her. It was joyous and I was elated by the surprise accident I had planned. It worked better than I could have ever hoped for. Three days later we got word that my Grandmother had died peacefully in her sleep.
Ten days later at her funeral in a northern city which necessitated costly travel for all of us, my Aunt and my Mother met the few relatives still living in our hometown. We all shared a pleasant lunch with much talk of old times and beautiful old memories.
Three months later my aunt accused me of sneaking into "her" town on Mother's Day and not telling her my Mother would be coming to see their Mother. We had a brief very loud discussion, and did not talk for several months. But then we did talk. And we have talked more and more as her sister, my Mother is slowly walking the long darkening road of dementia. She is here for me just as I am here for her. Two days ago her 25-year-old son was mauled by an alligator as he saved his dog at his favorite fishing spot. He is in his third surgery. Doctors are fighting to save his arm. Today I am in the middle of arranging an account that will accept donations for her son's extensive care as he has no insurance and in fact has himself walked a very tough road since his father died on a date very near to his own 16th birthday. We are family and that it appears is all that matters to me.
Be grateful for your sisters. Do not apologize, do not debate and do attend the funeral, you will regret it if you do not.
The fact is this is not old Europe, where large families lived in the same town for generations. This is the USA, where we encourage and celebrate independent achievement. Where the most common question to a graduating senior is WHERE will you be going to college? If we encourage and accept us and our children having their lives, we cannot expect them to drop their lives to accompany our last days, unless it is what they wish in their hearts as well. Caregiving from obligation leads to resentment.
Contribute what you are willing. Be gratte
Thank you for your honesty, kind words, input and for answering. :-)
emmyjo - I think you have a lot of insight into my thoughts and back story. THank you for your thoughts and encouragement. I think you nailed it with "Change the dynamic, stop allowing them to abuse you even 600 miles away."
Blessings to all. . . .
As someone who has been through a version of this I know that there was no time when the siblings were happy. No matter how much care I provided and it was 24/7, they were not happy and were continually threatening, fighting, undermining, steeling, and maligning. When I finally quit and turned the care over to another sibling because I was so impaired from the years of caring for them, no one cared, talked to me, took over, took better care, or any care of them. It was all about control and power. It was not about loving and caring for the person who needed it. If that had been the case they would have included me and I would have been loved and cared for by them as well. Just as you should have been and should be Lynn. You deserve care.
You should do what you need to do. If you want to spend the time with your mother then go and spend it and try to ignore the siblings. If you don't want to go and don't want to go to the funeral then don't. Change the dynamic stop allowing them to abuse you even 600 miles away. I know how hard that is. Remind yourself everyday that you are worth caring for.
I think the most painful yet helpful part was when my mom, before she got this ill, had a good long talk with me - She said that for the first time in her life she truly understands me and who I am. She said, (here's the painful part) "YOU are the black sheep of the family, and you always have been, always will be. You just have to accept that and go with it. Noone in this family will ever be happy with who you are - but it isn't you. It's them - they aren't happy in their own lives and so they have to make you miserable too." That was the first time she actually admitted she sees what goes on, and it hurt. Yet it was very enlightening and the best advice she didn't realize she was giving me. LOL Her words has given me the strength I pull from when days are bad.
I am the only Christian in the family. I have been since I was a teen (p.s. I am 50 now. LOL). Noone else goes to church (except a few of my kids, a niece or nephew here or there). Mom is not (Claims she's "earthen"), and sisters are not (Because God did everything bad and wrong in their lives and it's HIS fault - I used to think that, too, until I met my fiance and new pastor, re-learned alot these last few years!). I speak to my pastor for guidance and comfort but bringing one into the situation would, I promise you, ignite a nuclear explosion as it did when dad died (and I wasn't the one who asked him to come!!!). My "earthen" mother did, LOL.
My calls with mom have gone better these last few days since I informed them all on speaker phone that she is MY MOM, TOO, and this business about me not being allowed to call when I want is going to stop. I tried SO HARD to not show anger (not sure I did very well), and continued with, "everyone else is allowed to call every day and I AM TOO. SO get ready because I am going to call every day if I want to." THen I said, "the two people who keep hanging up on me when I call (and I named names!) will stop it now. It doesn't deter me it only makes me call the house incessantly until I talk with my mom - if you truly wish to continue to annoy yourselves by making me call until I have my time with mom, then so be it, annoy yourselves away!!" All I heard in the background was "Are you serious??? You have been hanging up n her every time she calls? What the h*** is wrong with you?" THen I heard what sounded like angry mumbling. Maybe I didn't word things quite right, am pretty sure I had a lot of anger in my voice, but I haven't had a problem since! :-) Now, if only the caregiver had been there or the nurse - they might have gotten a different picture.
I know my siblings are doing what they can to deal with their grief nd hurt about mom, and I know we have major problems between us, I just never expected them to lash out at me the way that they have and the level of viciousness.
50sChild - thank you for your kind words and honesty. Your comment about me being "rogue" made me giggle and it reminded me of what she said to me back in winter about me being the balck sheep! :-) THank you. I think you are right - I hit "raw" when she was diagnosed and I collapsed for five days crying. I have had to accept this weekend/week that there is NOTHING left I can do except let her talk to me. The end is nearer than I want to admit. She's exploring her faith and she knows I am the only one who can explain things to her, so I just ler her talk and answer her questions. I definitely expect a different level and kind of raw to hit when I lose her, just as I felt with dad. Not ready for that. We just got to know each other these last few years and I am angry to be losing that. Am just glad that I have my son, my fiancee, his parents and his uncle - they have held me up on many days these past 6 months, and sometimes they have just hold me.
We are just giving advice here not judging sorry if you took it up wrong i was just saying what I would do.
Do whats right for you in the end.
I dont know how a "christian" can not go and forgive and just be there for mum death is final there are no rewinds, i would hate you to have regrets! stuff everyone this is between you and losing your mum forever just be with her.
No, I don't need the funeral for myself. If mom's wishes are carried out, there will be cremation and a small memorial followed by a large family bar-b-que, that I know I will not be welcome at. My presence will not be needed - and again it's a darned if I do or don't situation. If I go, it will stir up anger amongst two of my sisters, and several others, but one is a little more understanding of late. She is starting to see things from both sides. And so am I, thanks to all your comments. Putting mom first and just focusing on what she wants from me.
Thank you all.
The main issue right now, is what does your Mother need and what do you need to get through this journey together. Are there things you need and want to tell her that may be left unsaid? Tell her..find a way...Are there things she needs from you that will help her let go of this life in a peaceful way......What matters most now is peace...it would be preferable if that peace could be achieved by all of you together, but why, at these times in life, it seems almost impossible for people to be civil with one another...has always been hard for me to understand. I have been on the receiving end on the night before my Daddy's death of being cursed and threatened to be beaten up by a SIL who was angry that my Daddy's death was getting in the way of her beach vacation....I have also been on the giving end of not wanting to let a sibling come to the house because their very presence ticked me off to the point where I wanted to let them have it verbally but in the end, what truly mattered with my Daddy, is Daddy never heard the threat....and he passed peacefully at home surrounded by ALL of us....and Hospice helped with that, keeping the attitudes at bay with their social worker.....and my sibling does visit, because I know Mama needs him as much as she needs me...so it is not about me, but about Mama. How do you do it? One of the hardest things in the world to know....How do you put aside the anger, the hurt, sometimes even the "vow for eternal revenge against those who abandoned me and Mama (me as the caregiver here) ....but if you can find a way to put aside the hurt, the anger and the resentment long enough to help your Mom pass in a peaceful way....the funeral issue.....I don't know...for me, it has always been about How did I treat the person when they were HERE...because it surely does not matter once they are gone...UNLESS YOU need to be there for yourself? if you do, you have a right to be there. I am rambling...for that I apologize...the main thing I am trying to say is that what matters and what will help you Mom pass peacefully I think is to somehow put aside the drama...both sides...others have given such excellent advice...this is a very difficult situation, and not unlike so many of ours.....just different folks involved....try to find peace..try to help your Mom find peace between you and her...and when you have done all you can do...you will know ....in your heart...you did all you could...and that will help you move forward. The rest of it can be worked out...or not....after.
Have I been there for mom? Yes and, admitedly, No. Prior to my dad's death 10 years ago or so, I hardly was there for her. Mom and I were not close, even when I was little. She would not allow it - she even said that to me repeatedly. AFter I married, She used to tell me "I don't like you very much." LOL I used to tell her that's ok cuz she's still my mom and I love her. She would laugh and say "I love you too." I always took it in stride because she is what she calls "earthen" and I am Christian - so our spirituality clashed, she said. But when dad died, I was the one who stayed with mom after the funeral, everyone else left. The two sisters who live in her town wouldn't even come to visit. I knew it was their way of dealing with their grief, but mom needed us all then, too. So, I stayed for a month while my ex took the kids back home. I was there the day the funeral director brought over a box with dad's ashes in it, unannounced, placed them in mom's hands, said "have a nice day", and walked away. Mom just looked at me, tears welling up in her eyes and asked, "what the hell am I supposed to do now???" We walked aroudn thehouse, her holding 'dad' until we found a quiet place for "dad" to rest until we could place his ashes where he wished to be "buried" after the spring thaw. I wanted to stay longer, but she insisted I go home. I was there again a month later to check on her, and every other month there after. Plus she called whenever she needed me and I called at least once per week. For the first time we were developing a real relationship and we both loved it. We went on vacations together several times and We even developed a little game where, when I visited I hid a gift for her somewhere at her office at work, in her car or house. Sometimes something big other times, just something little. She hated when I left, but loved her scavenger hunts!!!
Until my divorce when it became too expensive for ME to travel to her regularly, so I sent her gas money, bus tickets, plane tickets, and such so she would come visit me, which she did, often, and loved it. She even ended up falling in love with the state I now live in and wanted to move here someday.
During those years since dad died, my other sisters have been in and out, some years giving a lot of time and money to help, and other years, not so much. But they all worked and had families so they did what they could. I had more money and was able to visit more often because I didn't work. And I would just load up the kids and go visit!!! I would say we have each given as we can, when we can, and all in all it is as balanced as possible. When some could give time but not money, they would, and vice versa. It just seems that they expect me to be the same person now that I was before. And I cannot be.
I do own my own business which would imply that I can just set my own hours, walk away and leave someone else in charge. My fiancee and I run the business together but I handle my accounts and he handles his. So until we are financially set enough to hire a couple of other people, I am a one man show - there is noone to leave in charge of my department but myself. And as this is my only source of income, I can only do so much. My neices and nephews are actually much more understanding than my sisters and my neices and nephews are actually the ones who do half of the caregiving to give my sisters the breaks they need.
I have gone from living in a household as a stay at home mom/wife where our income was $157,000 per year to the sole provider of my son on an income of about $27,000 per year. Two of my sisters are single and both make more money than I do while the other is married and makes 3 times my income. None have children to support. THeirs are all grown.
Am I making excuses for not going to visit again? Yes and no - no, because it IS extremely difficult on so many fronts, and YES, because WHEN I go, it causes more problems. My sisters even went so far as to accuse me of trying to "poison" my mother while we were there by feeding her lunch. Come to find out, it wasn't the food WE made her that made her sick it was what everyone else fed her after we left!!!
I love all your comments and replies because they are all making me do a deep self examination and helping me come to terms with all my mixed up feeling - please feel free to express your thoughts more for me. I do have to say, though, that I have finally reached the conclusion that I AM darned if I do and don't, in every aspect when it comes to my sisters. So I am just going to DO what I can. I call my mom each day because she WANTS me to call each day and we talk about things she wants to talk about. I send her photos of places she misses from here and she loves it. I tease her about her bad hair days and she giggles. I can't control what happens when she hangs up the phone, I can't control the bitterness they all feel inside, I can only do what mom wants and she wants to talk to me each day. Yesterday she asked me to pray for her, but not on the phone. After I hang up, she said. SO I did. . . . . .
I don't know why your entire family hates you but once your mom passes away you'll never have to talk to them again. I think it's a shame that you won't be at her funeral. And I think it's a shame that if you were to go to the funeral other people would act out and behave badly. We ARE talking about adults here, right?
So, when my friends here on AC told me that my mom was close to the end, I debated for a while. I wanted to wait until mom died and then tell my siblings that now they can come home to attend mom's funeral. In the end, I knew that I could not live with myself if I did not tell them - so that they can drop everything and fly ASAP to say their goodbyes with mom. All but 1 made it.
Then there was mom's siblings. I can count with both hands how many times they visited mom in over 13 years. I asked my siblings if we should call mom's siblings to let them know she's dying. We all voted No. Aunts/Uncles would have been like Your Siblings - all trying to rule and take over. I still feel bad that mom's own sister/brother did not say their goodbyes. But, I just have to remind myself how Rarely they visited mom, their own sister. Then I don't feel bad.
Like I said, I see both parties' side.
Sorry im not judging you as i dont know the ins and outs but the only reason i can think of your sisters anger towards you is they feel you were not much help in the past also the fact that the nurses and staff and cold with you aswell tells me its not just your sisters? My sister will be banned from seeing mum if she goes into a NH and thats agreed by me and my other siblings.
I dont know what to say but do you feel you were a huge help to them in caring for mum did they get respite did you helpout? you have to ask yourself these questions and see thier point.
Finally, the little girl was dying. When she was lying in the hospital, the father came back. The egos of the man and ex-wife were so strong that they couldn't even stop fighting then. Finally the little girl said, "Daddy, just leave and don't come back." It isn't that she didn't love the man who had walked out on them. She was just tired of all the drama.
Lynn, your mother may feel this way. She may love all of you, but she is just too sick to deal with the drama. You and your sisters need to come to an understanding without her being pulled into it. I don't know the history from all sides of this situation, but your mother needs peace. How your mother feels is the most important. Write a letter or send emails to your sisters to see if you can heal some of the hard feelings between you without pulling your mother into it. I hope that there is some healing for all of you.
I agree about the short time you spent with your mom. It's darn if you and darn if you don't. You stay longer, your sibs will throw a ruckus. You cut it short, and you miss out on sharing more time with your mom.
You need to figure out what it is you really want in life. What you really feel about your mom's eventual death. Are you finding excuses to avoid spending the last few weeks with your dying mom? If it's too hard for you, maybe it's time to go back to visit mom. And have a heart-to-heart talk with her. Tell her of your feelings and fears. And say your goodbyes - if you have no plans to visit her again because your sisters will throw a hissy fit. Up to you. Do what you know you can live with. No regrets.
And Lynn, you can also see it from your mom's viewpoint. She won't be here to see you marry, to see her grandkids grow, graduate and marry. But I think, if you do that heart-to-heart talk with her, you can tell her that you will miss her for your wedding, etc.... I don't know... I see your side, I see your siblings side, and I feel bad for your mom. Just do what you can live with.