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.
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.
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.
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.
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
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.
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.
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.
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.
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.)
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.
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.
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.
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