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???
Be grateful for your sisters. Do not apologize, do not debate and do attend the funeral, you will regret it if you do not.
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.
Try to be as even tempered as you can be and don't let them provoke you to anger.
It is a situation that would try a saint, but you can only do your best.
God bless you.
As an update, I am now dealing with OTHER issues from my sisters that I do not understand and maybe some can shed light on this for me.
When I call my mom to talk, we talk about memories and upcoming events, (my wedding, son's graduation from school next year, his scholarships, her gardens, bird houses, stuff we always talk about) nothing more. We have always talked like that. I don't know what is in her will, what will happen to her belongings or house, or even what she has determined are her final wishes. My mom AND mom's attorney are fully aware that IF there is anything left to be split amongst the children after all the bills are paid, I would like to have anything that is supposed to come to me be split between my children. I say this all to state that I am not "after" anything from mom (unlike some who have already gone through her jewelry and tagged items while she is sleeping). Now, I thought my sisters' behaviour was just a whim on their part, so I kept an eye on it since my visit to see if it would change. It has changed - it's gotten worse. It's not a whim, and I cannot explain it. When I call, two of them stand and listen to my entire conversation with my mom. My mom has tried to turn the speaker phone off so she can put the phone to her ear, and they scold her and tell her no. When mom said, "I can hear better in my ear!" She was told, "Leave it on speaker". They tell her what to say even though she still is alert enough to say what she WANTS. I have learned it is BEST for mom and causes no arguments if I call when only ONE particular family member is there. That person hands her the phone and walks away. Any thoughts???
In addition, July 3rd, ONE of my siblings took a "deathbed photo of mom" (her own words in the email) and sent it to my children. THIS one has shocked even all the relatives (she actually told everyone she had done it) and they could not understand why she did this. I found out by getting apologie from people who had been told about what she had done. I asked and she admitted it. I am trying to justify it by saying that she only wanted them to see her before she goes, but they have all been to visit their gramma in the past two months and they all call regularly. There are A LOT of grandchildren who live farther away than MY kids, who have NOT been to visit and do not call their gramma ever, and none of them got the photo. The photo was only sent to MY children. . . .
Lynn
You get to own your relationship with your mother starting right this second. Sisters, aunts, whomever else can suck their big toe over in the corner. Sisters may never ever understand your situation because they don't want to. Understanding what you are going through means they no longer have a convenient target for all of their feelings. They need to deal with their own business separate from you just like YOU don't get to be bitter and ugly over the fact they never offered to help you out in a time of need (I assume....)
I don't know your sisters, but they seriously need to butt out of the relationship between you & your mom. If you want to talk to her on the phone they just by golly better let it happen and keep their mouths shut.
It would help if mom put her foot down with them, but that's probably not going to happen.
Expect it to get worse after your mom passes. People who are struggling to handle their mom's aging & decline will really have a whopper of a struggle dealing with her death. Death is traumatic and makes people behave in ways they would never have imagined they would.
So, just realize your sisters are probably just projecting their own fear, pain, and anxiety onto you, but it's still their problem to deal with, not yours. You can't control what other people say or do, just yourself.
You do what will let you sleep at night after your mom is gone and don't worry about other people, even if they are family.
so. it sounds to me that you have ALREADY made your contribution already to your mom's care and your siblings are maybe having a very rude wake up call, that they are now having to deal with your mom. I think about this often and i think maybe it is easier for me seeing my parents age daily rather than having a rude awakening as I think maybe my brother experiences when he visits. Hmmmmm. I think you should make your peace/say good bye to your mom in YOUR way, not THEIRS. Make today about Mom not siblings. deal with them later. you have made your contribution. IMHO. Good luck and I loved that your left your something scented with your perfume with you mom. What a beautiful gesture. Hang in there. xo
Thank you, Miasmom1. . . .it's nice to hear "the other side", too. Helps me to adjust my feelings sometimes and to try to put my own resentment in check. Blessings to you and your siblings that you are all able to keep each other in mind. . . .
Found a personal way to also do what someone suggested (I can't remember who, sorry!!!). Have a secret pal helping me put together thank you gifts for each of mom's caregivers (siblings, neices, nephews, all of them). My friend knows Each one of them personally, too, and so is able to help me assemble each gift very individually. She cut me a really amazing deal and is doing all of them for less than my grocery money for the week!!! My friend lives closer than I do and will be delivering each gift secretly after dark with my personal card in each. Was her idea to kind of do it like I used to do mom's "treasure hunt" when I left. They will each awake in the morning to a bow wrapped package. Let's see how it goes!
;-)
After reading (several times) both of your messages to me, and truly thinking seriously about everything you have said, I have little to say in reply because I do not wish to be argumentative. I will say, it appears as though you misunderstood an honest mistake (my missing your first post), and reacted to that misunderstanding.
Had I read your first message, I CAN promise you that your “hidden message” would have come across quite obviously to me as it was not as hidden as you suspect. Forgive and Forget. Thank you for that simple message. Please know that the issues in my family run much deeper than simple sibling rivalries, missed cheerleader practice pick-ups, etc., and the solution is much more difficult than one person abiding by an all-encompassing phrase such as “forgive and forget” . It is complex and stretches over 50 years (my age). I can never explain all the ins and outs in a few minutes online. You can fix the wheels of the wagon, but unless the rest of the wagon is also fixed, you are going to go nowhere.
One thing does concern me from your comments and I mentioned it before, your use of the word:
Belligerent
Definition:
1. warlike; given to waging war.
2. of warlike character; aggressively hostile.
My choice to stay away from the memorial, as I attempted to state before, is an effort to actually prevent exactly the definition stated about. I KNOW that I will have regrets if I go and if I do not go. I will make my choice based on what I feel will bring the LEAST amount of regret, pain, and suffering – for EVERYONE.
As far as our remarks to each other, I am choosing to walk away in an effort to ward off any further conflict between the two of us.
Have a blessed day. Lynn
Now I must tell you that nothing in the two posts I wrote for your attention was meant to hurt your feelings or to say or be unkind to you. My fault lies with your sisters. I mentioned the small indications of selfishness on your part only because they were out there, on the page so to speak, and by briefly dealing with this I hoped to indicate I was not just coming down on one side (yours) without giving your entire situation the thoughtfulness it deserves. I imagine I must now explain my choice of words, as when I used "belligerent" (a pet word I use too much but had forgotten much of its "warlike" meaning) to describe an act that I felt would be unnecessarily adding fuel to the fury of your sisters fire. I see them as NOT wanting you to come to your Mother's funeral just so this one act on your part could be held against you for all eternity. They will say: Lynn the selfish b----- (fill in with a word used these days in all sorts of ways, good and bad, and also a word that rhymes with "rich" if I may quote former First Lady Barbara Bush who back in the 80s, decided to bare her claws and go after Geraldine Ferraro in an effort to protect her husband, who Time magazine had called a wimp. Boy did that ever digress! My last word on that is if it takes one to know one, Mrs. Bush is very intelligent on the subject.) So here it what will be said against you forever: Lynn that selfish b____ would not even come to her own Mother's funeral." This will precede all of their hateful comments, and you do not need this or deserve it. So please don't supply them with the ammunition. It seems they need little help in this regard in any event. You have a good life ahead of you but unfortunately you will need to learn to make your way without the love and comfort that has been provided you by your Mother. You will feel her presence in your heart, but only after a time, and that along with the love of the new supportive man in your life and the closeness and need for you from your wonderful children should be the cocoon that will hold you safe for many years to come. As someone else in a post said, the ugliness brought to this moment in time, will pass. Allow it to, and honor your Mother and what the two of you had that was special by going to her funeral. I think you might even ask to speak at the service, and that would seem right too. Keep your composure throughout and God bless and keep you.
Mom lives in a rural farm area, still has dial up, limited cable tv, ancient phone lines, and problems with her phone whenever it storms. So, process of elimination: closest storm was over 700 miles away, not likely it was affecting her phone lines. No outages with her phone company and cell service was working well in the area because niece was texting and called from that area last night. Old phone lines: the phone usually hangs up on people when these are an issue. I wasn't getting hung up on, answering machine was acutally answering and I could leave a message. 7 times total. And Noone returned my calls. IF mom's phone is out or there are outages, normally you get a busy signal, if her computer is accidentally left on for long periods of time, same thing. If family members were on the line with her, she does NOT have call waiting so it would be a busy signal as well.
Called from fiancees cell which has the same area code as mine, hmmm. . . noone answered. Called from son's cell which has a different area code than mine but from the same state, noone answered. Fiancee checked outages between our state and mom's - none, landline or cellular. No power outages either.
After eliminating all possibilities, he suggested I call the sibling with the POA. I did and yes, I am sure my voice was probably still irritated and quivering because I was trying not to cry. But I tried to control myself best I could. This is what I got: "EVeryone else has been able to get through. Your phone is the only one that seems to have trouble. Huh. I guess I will have to look into that when I get back up there next week sometime. IF I have time. In the mean time, why don't you just call here. I will make sure mom gets your messages. I call every day and I don't have any trouble getting through."
NOW, this morning suddenly, the phone works fine. The paid caregiver is there today, Wed., and Thurs. . . So I am going to call every single day this week and run an experiment - which days will someone answer and which days will they NOT. Or, thinking positively, maybe they will answer every day. . . .
NEXT OPTION, if the weekend's problem happens again, I am going to get a google voice number with the same area codes as mom's area and call through that. Let's see if IT gets answered and how many times. If I NEED to, I will get a new one every single time I can't get through. Thank my fiancee for that idea. :-)
As far as writing a letter, the notes that I wrote for each did not help, the gifts did not help, talking to them has not helped. Talking to the caregiver has not helped. I am just going to have to find a way around them at every turn and think more deviously about my methods. I am not permitted to help with phone calls, paperwork or coordinating in any way - when I offer, I am always told I have "no right. After all you are not the POA." I cannot visit at all. THe biggest part of the problem so cooking for them or alleviating their caregiving role for a time is not an option. Cookies? I had special gifts hand prepared for each person and hand delivered with hand written thank you notes for each. Better than cookies in my eyes. WHen they were hand delivered they were disgusted and voiced their dissatisfaction at what was given. IDK what else to do - there's an old Irish saying,
"May those who love us, love us.
And for those who don't love us,
May God turn their hearts.
And if he can not turn their hearts,
May he turn their ankles,
So we may know them by their limping."
Maybe, it's a little unchristian but there are days when that sums up what I feel. I am done with them. If I won the Power Ball today and it was worth 900 million, gave them each 200 million, kept 50 for myself, they would apparently complain I did not give them all of it. I will just let my fiancee keep trying to find ways for me to work around them. Where there is a will there IS a way - and I am not going to let my last few days or weeks with my mom be taken from me by their "conjuring". (I do love that word, frenchmadeline).
Well, its not looking good for the home team. But you have not thrown in the towel and neither will we...do you think you could share what their perspective might be if they were writing to AgingCare with a complaint about your persistent efforts to stay involved?