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For those who have not read my previous posts, I was never close to my parents. As a child I was routinely passed over, ignored, and put down, kept back. In my 60's my sisters were becoming rather overwhelmed by the needs of our mother who was then in her 80's. She was, by all accounts, an outgoing and active person, but had limitations in mobility. She continued living at home "independently" but relied on my sisters to "help out." For a few years I visited for a few months in the summer, renting tiny apartments. Later my husband and I sold our house and moved to a place about 20 minutes' drive from Mom or sisters.


I was very pleased that my sisters and I have developed a sort of "family" kind of relationship. I have also developed a sort of friendship with Mom, though we do not have even a trace of mother-daughter relationship.


Prior to her final hospitalization and return to her home for in-home hospice my commitment to my sisters and mother was that I would take Mom out for a drive and lunch one day per week (except for a few months hiatus during the peak of the pandemic). On that day I also took Mom to the bank drive-through and picked up prescriptions, etc. Our relationship was friendly and we had fun exploring. Not much more than that, but it was welcome to us both, I think.


Now that Mom, at 96, has entered the hospice stage one of my sisters (the one who has done the most all along) is obsessed with the notion that Mom should have someone with her every day tending to her every need. I sort of figure that that is why we are paying for round-the-clock caregivers in addition to the hospice services that her insurance will pay for. That sister, though, seems to think that I should be there 4 or 5 days each week for 4 to 6 hours. To be fair, she is doing more than that.


Nevertheless, she was always Mom's favorite and they do have a strong bond of love between them. I never had that, don't expect it to develop at this late stage. I am actually pleased that we are sort of friends. It took a lot to just achieve that. I have never been comfortable in Mom's house and have never really spent any more time there than was absolutely necessary. I left her home when I was 18 and do not feel, at 70, any better about being in her current home than I felt being in the home she lived in then. Too much "...as long as you are in my house..." I suppose.


I have really enjoyed getting to know my sisters and that small sense of "family" but I do not want to spoil the bits of friendship I have with Mom by being overdosed with her dying selfishness. I am fine with spending an hour or two with her a couple times each week, but I see no point in sitting there watching her drool when she is not lucid.


I am bringing her flowers from my yard and little treats of things she has always enjoyed, hoping to brighten her day a bit, as I would with any friend. Nonetheless, I really can't fake any kind of deep relationship with the person who always begrudged any time or money she had to spend with/on me because it was taking away from what she had for those she loved.


I have pretty much got past the wounds of my childhood loneliness. After all, once I got several thousand miles between me and the rest of the family I had my own successes, found love on many levels with new friends and new family. The first 18 years of my life are a lasting disappointment, but they do not define me. I have a lot going on in my life that is wonderful.


I simply do not want to be dragged down into a morass of pity and grief that I don't really share. I do want to help make Mom's final weeks happy ones, but I do not want to exhaust myself with empty self-sacrifice. At this point it isn't really about Mom. She is only aware of who is there for a few hours each day. I am more concerned that I would like to remain friends with my sisters. It is complicated, but I simply do not share their need to sit with Mom, who mostly is not there.

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YOU do what YOU feel comfortable doing.
It amazes me that some people think that a person dying will magically heal all past transgressions and everything will be "sunshine, roses, unicorns and the angels will descend from the heavens and sing" and all the rest of the good stuff.
Spend the time you want and or can with mom.
Spend the time you want with the rest of the family.
Do not let anyone pressure you for more than you can or want to give.
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LittleOrchid Jun 2021
Thank you. Of course, you are right. My mother is no better mother because she is dying. I have no illusions about that, though my sisters may. But then, she was a better mother to them than she was to me, so they are better able to focus on the good things of the past. To me the only good times with Mom were in the last 10 years. I choose to focus on them. The last 2 weeks have been simply exhausting and I really cannot keep up the pace. I will need to let my sisters know that I will need to slow down some and return to some semblance of my usual schedule. Eventually I am sure they will need to do the same.
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My advice is to do as you wish to do, do what you feel will bring you the most peace, do as you please knowing that it may have repercussions on your relationships with your sisters moving forward. It doesn't sound as though that would be a major concern for you as you do not feel close to your family. So, again, only you know your history and your current feelings; do what will bring you the most peace and joy in your own life moving forward.
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LittleOrchid Jun 2021
Thank you. I am closer to my sisters now than I have ever been. It is still not a really close relationship, but they are the family I have. I do not want to lose what we have built in the last 10 years, but I also will certainly not want to lose what I built for myself in the 30 years before we reunited.

I am happy that my husband is along on this journey. He has only one remaining sister left of his once large family. In some ways I was closer to his mother and aunts than to my own family. I watched each of them go with regret that I did not know them long enough or well enough. For some people 30 years just is not enough time. There are still stories to share, things to learn. In my future I see more time with my gardens and less time with people, but I do want to welcome family and friends to share those gardens with others.
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You need to stay true to who you are now at this stage in your life. If your sisters can't understand that, well, that's on them not you. It does no one any good to try and pretend that all is well, just because mom is now under hospice care.
My husband was under their care for the 22 months of his life. Are you willing to sacrifice your life for possibly that long, as only the Good Lord knows the day and time that He will call her home? I hope not.
Tell your sisters that while you are grateful for the chance to rebuild some sort of relationships with them, you still need to be able to set boundaries when it comes to your mom. Hopefully, they will understand. Wishing you peace in whatever you decide.
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LittleOrchid Jun 2021
Thank you. I am hoping that a little time and a little exhaustion will bring us to a common feeling that the quality of a few good moments every few days may be worth more than the dreary monotony of long hours of watching Mom struggle with letting go of her life. If the hospice lasts more than 2 or 3 weeks I think we might each go back to the more relaxed schedules we had before this last crisis. I hope so. I really feel that I must, anyway. I hope they can come to feel the same way.
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This isn't about what your mother needs or wants; it's about what your sister wants and feels your mother needs. She is asking for your participation based on what SHE thinks is 'right' and 'necessary', not on what's necessarily the 'truth'. Like you said, your mother is unaware of what's going on, preparing herself to transition to the next phase of her journey. What's left now is for the surviving family members to hash out, not for mother.

Unfortunately, you may drive a wedge between you and your sisters if you don't do what is 'expected' of you. If you're okay with that, proceed forward at your pace. I would do as I wished, if it were me, regardless of what my sibling(s) expected of me, but then again, I have no siblings. My point though, is you should do what YOU feel is right for YOU, not what THEY feel is right for you.

In my view of things, end of life is all about doing what we ourselves feel comfortable with, because the person dying isn't with us any longer ANYWAY, you know? What matters now is the time you've already spent with her, the friendship you managed to forge despite the early days, and those memories you're going to take away from the relationship. Your mom has those memories too, fortunately, and my hat is off to YOU for going above & beyond to do such a thing for BOTH of your sakes.

Wishing you the best of luck with a tough situation. Sending you a hug and a prayer for peace, no matter what you decide to do
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LittleOrchid Jun 2021
I think you have a good point. Each of us has a slightly different relationship with Mom. I absolutely do want to maintain a relationship with my sisters. Given family history we may know each other for another 15 to 20 years. My life is better with them than without them. I feel some compromises will be needed.

However, to me the memories of her passing will not be what happens at the hospital bed in her living room. It will be about the last few outings we had together. What we laughed at, what inspired her. At this point I think Mom is more gone than here. Her caregivers are tending to her physical needs very well. I have taken her flowers that came from my gardens that I transplanted from her gardens when we moved here, including Dad's favorite rose, her favorite iris, etc. I hope she takes pleasure in the fact that those treasures of hers are still growing and thriving and will continue to do so. I hope that these small things will cheer her passing. I just don't think that huge amounts of time spent by her side are any better than short spans. If she sees her flowers, sees a face, then goes back to sleep there may be some comfort in it.
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I am very sorry for your impending loss (which I am suspect is raising a myriad of conflicting emotions in you).

I see no real reason for you to deviate from what has been working so far for your relationship with your mom and your sisters, unless you feel that, down the road, you may start to have the "woulda coulda shoulda" regrets that some people get after losing a loved one. Have you asked your sister, specifically, why now that mom is on hospice, she feels that circumstances need to so radically change? Is she projecting her own "shoulda, coulda woulda" regrets onto you? Does she feel that she is somehow "protecting" you from future regrets? Is she having private discussions with mom, where mom is relaying mom's regrets and fears and your sister is trying to alleviate them? You might want to ask your sister these questions directly (with no rancor) to get an idea of where your sister is coming from. I'm not saying that should change your mind about what you feel your role in this is, but it might give you some context on where your sister is coming from, which might make it easier to navigate through the emotions that are going to be ongoing through the hospice experience.
Peace and prayers for you in the upcoming weeks.
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LittleOrchid Jun 2021
Thank you. I am not sure where my older sister is coming from, though I am quite sure that it is not to save me from any regrets. I think she may be sort of panicked and thinking that anything everything must be done just because it can be. I see her running herself into a state of exhaustion. Perhaps when she is played out she will catch her breath and go back to the looser relationship we have had concerning Mom's care. Each of the 4 of us have had different approaches to Mom's age and set different limits up to this point. I think I see what you are getting at. #2 sister may be experiencing the "shoulda, coulda, woulda" big time. If that is the basis for her panic, she should figure it out and relax as she hits the wall. We are in our 70's and this is week 2 so exhaustion is definitely getting to us. Thanks for understanding.
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If there is 24 hour care then the purpose of your visit is companionship. If she also has other visitors, I would think that you all could rotate and only go every few days. I have also found that dad is mostly sleeping and when I'm there I'm lucky if I get an hour of quality time with him where he even knows I'm there.

I read on here that really the dementia patient on hospice doesn't know how often you are there.. Dad knows I'm there when he's not sleeping and is happy to see me and luckily I live close and am retired. But an hour is enough time especially when he is having a bad day...even a half hour is probably enough on a bad day. If I'm lucky to find him lucid and talkative, then I stay and enjoy it knowing it might not be the same tomorrow.

You do you. Do whatever you feel good about and where you won't feel guilty later. Your sisters may want more time and need more time than you do. They may also find that it's a boring waste of their time if she is sleeping the day away and backtrack on their idea. Some people want coverage to make sure they are there for the last breath but even with hospice, it doesn't always happen anyway.
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LittleOrchid Jun 2021
Thank you. When my son was very ill at the age of 12 or 13 we did maintain a vigil, taking turns so he was never alone. That was different. He was there. Even when he was in so much pain and a lot of painkillers that he was not communicative, he was there and some part of him was aware. Mom is not there much and I am not sure that she is aware of us. My sisters have a much deeper relationship and may feel more of a contact, but for me, I think there isn't much there unless she is well enough to speak and understand.
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Sending you a giant hug, because your exhaustion is coming through your post. The last two weeks of my mother's life she was with hospice in SNF. She had stopped eating and drinking. I did not increase the amount of time I spent with her. She didn't wake up when I greeted her so I left.
To keep yourself sane, and your sisters at bay, perhaps a little white lie (you have severe back spasms, your knee is so swollen you can hardly walk, etc). It should get you off the hook, and possibly garner a little sympathy from the sisters.
You have to do what is best for you. And nobody here will criticize your decision, because we have all been faced with, or will be faced with the same situation. HUGS to you.
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LittleOrchid Jun 2021
Thanks for the suggestion. I guess I am too tired to even think of it. I will, in fact, have a back spasm tomorrow and treat it with a heating pad and bed rest! I feel the hug, too. Thank you.
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I suspect your sister doesn't want to risk your mother dying alone without a family member there. That's her concern, though, not yours.

Some people see hospice as something like a ticking time bomb and are on edge waiting, waiting for The End or The Phone Call. I was like that with my mother when she first went on hospice, but then again, she was pretty sick. We're six months into it now, so I've relaxed a bit. I don't what will precipitate her demise at this point, so I just go on with my life as much as possible. I see her more now than I did at the beginning of hospice more because the Covid lockdowns have been relaxed, not because I'm desperate to be there as much as possible. She barely knows me, and we can't have a conversation any longer. My visits are mostly to assist her hospice nurse when she's treating Mom's leg wounds than to socialize with Mom, but I'm also the one who let's her know she's loved.

Go see your mother as often as it suits you, and let your sister do what makes her feel OK. Consider giving her more support than your mother, because I think she's feeling the impending loss more keenly than you are. (That's OK, by the way.)
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LittleOrchid Jun 2021
Thanks for your insights. I think we are waiting for both The End and The Phone Call. Mom's lone kidney has failed and is producing little urine at this point. She may live for weeks, but her doctors have suggested that it will not be months. I may be the only one with whom Mom discussed dying because we were not as close and it could be talked about whereas the others couldn't bear to talk about her death. Mom and I had both agreed that it would be nice if she could have a heart attack or die in a diabetic coma as those are quick and painless. If she could not have that, she wanted to die of natural causes with enough medications to remain comfortable and peaceful. I will continue taking her flowers from my garden when I go because the love of gardening was one of the few things we shared. I am happy that this is happening in a time of year when my gardens are full of blooms that will appeal to her. I am hoping that when she does have lucid moments that she will see the flowers and know that I was there.
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No.

Do as much or as little as you feel comfortable doing. Don't let your sister talk you into doing more than YOU are comfortable with.
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LittleOrchid Jun 2021
Thanks for your support. I am working toward that goal. It is easier said than done because I do want to go forward with my relatively new relationships with my sisters. It does help to have online friends who know the situation without knowing the people involved. It helps to get some objectivity.
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Is your sister afraid of your mother's being without a child present at the critical moment, do you think?

I agree with you, I don't see any benefit to your mother or to the relationships you've worked so hard to reshape from your attempting to comply with your sister's idea of the correct approach, and you're right again that it would jeopardise the progress you've made. And I couldn't agree more strongly with your point about empty sacrifices.

As there won't be any running around waiting on her, which can be done by the caregivers, could you sit and read/knit/catch up on correspondence? I still don't think you should give this long watch more time than you can manage without becoming resentful, but perhaps there's a possible compromise there.
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LittleOrchid Jun 2021
Thanks for being so understanding. I think today may be a calmer day. This past week and through the weekend there have been many family members, cousins, etc., and Mom's friends visiting her so the days have included playing hostess as well as watching and talking to Mom. Maybe today I will take a book and I might even be able to nap briefly on the couch if she is having a sleepy day. When I spoke to her this morning, sister #2 told me that Mom slept most of yesterday. That might mean that Mom will be restful today as well. of course, it could also mean that she will be a little more energized. I think I will take a laptop with photographs from one of the trips we took together for something to talk about if she is lucid. As I have contacted people on Mom's list I have suggested to them that Mom is most likely to be herself between 11am and 1pm so the visits tend to be between 10 am and 2 pm, which narrows the hostess time, but still gives Mom a chance to see the people she would like to see. I am hoping that I can convince the other 2 sisters that we should all take care of our health and only try to keep Mom company when she is most aware.

I do think that the others fear that Mom would have a crisis moment with nobody there. That did happen in the hospital more than once. I will never forget coming into her room and finding her trying to hide behind the side of the bed, fearing some unknown thing. She was on meds that gave her hallucinations and the staff there had no time to comfort her. However, those meds are now gone and her caregivers are very good, and both willing and able to hold her hand and talk to her if she is a bit distraught. That is unlikely to happen, though with the stronger anti-anxiety meds provided for evening and night hours. I am hoping we can get over that fear.
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Can you talk with your sisters about different reactions? Not about how you had different childhoods, but just that different people cope in different ways. You want to find ‘quality time’ moments where you can do what you think will be very helpful. Your sisters want to spend as much time as possible with her. Neither is wrong. Ask them for more suggestions of ‘special things’ you could do, and say how glad you are that they are willing to spend so much time with her, even though she may not even understand that they are there. You all want to be able to feel that you did your own best when the end really comes.

My own experience goes like this. My mother died of cancer on Saturday night in her apartment, with the last week being the most difficult. I had moved in with her, but got out to go shopping etc when I could, to get food and all the rest of what we needed. My mother was quite happy for me to go out. She was fully conscious. My 2 sisters both lived a plane trip away. At the end, mother needed changing when she woke every four hours. A locum doctor came on Friday evening as mother was in pain, and gave her a solid dose of morphine, which knocked her out pretty well.

Older sister arrived on Saturday morning. Mother was sleeping, and older sister went out to do local jobs. She stayed out all day, came back but went to spend the night in a hotel, as I had the only spare bed with mother. Younger sister had to travel a few hours to the town where she could get a plane, and had to stay there over Saturday night. I picked her up at the airport on Sunday morning. She kept talking about the friends she visited the night before, and I had to butt in to talk about what to do with mother’s body. I think neither sister could cope with the situation at all well.

For me, the result of this is that I and my sisters had very different reactions, and also that my mother’s wishes were not always those of other people who are dying. I don’t think that my sisters and I had very different childhood experiences, just different experiences as we lived adult lives in different places. I have no truly bad feelings about my sisters’ reactions, and gratitude for my mother’s common sense. I hope that the same can be true for you.

Yours with love, Margaret
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LittleOrchid Jun 2021
Thank you for sharing. Most of my life, I would have been one of the sisters who swooped in on a plane when things were pretty much over. I would have sent money, flowers, whatever, but not been there. My older sister was the one who was always there. It is good to hear from someone experiencing the other side of the experience. I think sister#2 is trying to get the rest of us to help her do what she cannot do alone--be with Mom all the time. I am hoping she comes to realize that it is neither possible nor advisable. I had a talk with her earlier this morning about her obvious exhaustion and her own health needs. I think she was listening. She agreed to stay home today and catch up on sleep. I committed to at least 3 hours with Mom, more if Mom is lucid and can communicate. Sister #4 will come over if I call her. Perhaps tomorrow I will stay home all day (as I did yesterday) and catch up on rest. I want my sisters to come out of this with their help and with our growing friendships intact. I think I just need to be gentle and sensitive to their needs to get them to see that they do need rest.
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Unlike most of the responses here, I don't understand the unwillingness to sit with someone for several hours a week, especially when it shouldn't involve much interaction so that whatever angst your mothers caused you in your younger years really wouldn't be revisited. You mother may seem asleep, but she may be aware of the presence of one of her children in the room. Maybe 4-5 hours a day, every day is too much, but maybe 2 hours a day 3 or 4 times a week may be doable with overtaxing yourself. While it's very much laudable to want to self-care while dealing with pain, illness, and impending death of parent, it's really just a once-in-a-lifetime, time-limited experience. Your future relationship with your sisters may be enhanced if they don't view you as the sister who just wouldn't give the extra hours at the end of your mother's life. Good luck, it's always a tough row to hoe, there just never an easy way to deal with this.
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Let your siblings know that each of you will cope with mom’s situation in different ways, and then feel no need to further discuss or explain yourself. My siblings and I all certainly handled the hospice time differently. I’m glad you’ve made such good progress in coping with the past and I wish you peace
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Wow LittleOrchid! I felt that! With all that's going on, I never realized how right you are about being a better mother because she's dying. (I had the illusions) Only this is my dad. We always had an abusive relationship since my adulthood. (you know, women, they don't know sh-t) My brother has always lived in NJ. My parents left when he was 25. He's now 72. So he was never involved in any of the bad fights. Well, I was putting my dad on a pedestal right now and having strange feelings. Wasn't sure what was going on. Thanks for the insight. He's my dad and I will take care of him and make sure he is safe. But I can't make myself love him like we had the greatest relationship in the world. Sorry if I made typos, long night. Thank you and I sure hope things go well for you.
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