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Mother is 100.9 years old and lives in a nursing home. She broke her hip, had surgery and went into the nursing home at age 98.2. She now eats very little and has mild dementia. It was suggested that if I enroll her in Hospice, she would qualify for more services to improve the quality of her life even though death is not imminent, so I did so.


My older sister has had an extremely contentious relationship w/Mother and the rest of the family for many years. She does not communicate with any family members including son and granddaughter. She was told when Mother went into nursing home almost three years ago and since then has been to visit approximately 3 times. Cards on birthdays and holidays are sporadic and mostly non-existent. She has not reached out to me, her younger and only sibling, to inquire about Mother's health until a few weeks ago. At that time it was a text "so, how's Ma". I told her if she really wanted to know, she should come visit, which she did. Apparently, when she was there, she noticed on Mother's calendar when the Hospice nurse signed in. After the visit I rec'd a text asking about it. I confirmed, that yes I had done that.


Now I have rec'd several text messages from her irate because I did not let her know and telling me I have no right to judge her interest in our Mother's care or well-being. Well, I am not judging. In my life experience when someone is interested in anything, they make time to visit, call, inquire, etc. which is NOT what has happened in this case. She didn't contact Mother by phone or visit when she was well and it's the same now.


If Mother had a diagnosis of imminent death, she would be contacted; just as she was when Mother broke her hip.


I guess I am looking for any input that folks may have or experience with similar situations. I am now feeling guilty about this, which is of course just what she wants...

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A lot of people who don't understand how the system works equate hospice with imminent death, so quite likely when your sister heard hospice that is what she thought. If you can be patient enough you can explain the difference and that you will let her know when the time is near, other than that I don't think it should be necessary to point out that someone who is over 100 years old hasn't got much time left.
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janeyd54 May 2019
Thank you, cwillie. The funny thing is, she's an RN!
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Janey, I provided 24/7 care for my mom for four years until I had enough of twisted sissies crap! Then I became your sis. I emailed ts2 asking for updates once mom was moved to memory care. I had to move to another state in order to find work.

TS2 never once responded to my questions. I found out through the grapevine that mom had been placed on hospice. I knew from this site that is not necessarily a death sentence, but was angry that TS2 had to make everything so difficult. I am sure she thought if you are sooo concerned maybe you should come to visit her and see for yourself. But she never responded in any way, any form.

How very cruel and passive aggressive this sort of behavior is. What is the point? An exercise of power over mom and a method for you to control and influence sis? How terribly dysfunctional!

What you need to remember is this is not about punishing your sister for long past and your perception of her recent behaviors. This IS about your mom. If you think mom would not want her involved, that cannot be judged by anyone.

So, forget the past with sis, stop trying to control everything about this situation. Why would you want to hurt your mom that way? Try to just get along and be civil and fair to sis. Everyone will be much better off for it.
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JoAnn29 May 2019
"Stop trying to control everything"

I don't think its a control thing its what she has to do because sister has never tried to be involved before. I think sis realized that Mom is not going to be with them much longer. She now feels quilty and is taking it out on the one person who had done ALL THE WORK. Its stressful being the one who makes all the decisions. Are u doing whats right? The one who does all the worrying, there for every ER visit.
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So, when was your mother enrolled on the hospice service?

Your sister is upset for all sorts of complicated reasons, most of which will be quite beyond your ken. I should try as far as possible to let it wash over you. If you must respond, or even if you just think it would be rude or inflammatory not to respond, try to keep it neutral, something like: "I will be happy to keep you informed in future. How would you like me to do that?"

I don't think it was unreasonable of you to feel that if your sister had any questions your sister would ask. She was free to do so at any time, assuming that you hadn't previously rejected any enquiries or approaches - had you? If she's bouncing about now, it's because:

she misunderstands the concept of hospice as applied to your mother
she feels hurt that she was excluded (I know, whose fault's that? - but that's not the point)
she believes she ought to have been consulted
this nothing incident has opened all sorts of other old wounds

Whatever. It wasn't your responsibility to track her down when you had the decision to make; and you can't alter what has already taken place even if you felt so inclined.

So, to take away -

You haven't done anything wrong.
She is upset, see what you can do to help her feel better and avoid similar misunderstandings in future.
Your sister's issues, whatever they may be, are not your fault and not your problem; but acknowledging her feelings and reassuring her is still the right thing to do. You don't have to feel responsible for a problem to want to help put it right.
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Hi janeyd. Unfortunately you and I share a similar situation. Although I’d LOVE to be able to say that I demonstrate loving forgiveness and infinite patience toward our LO’s other “caregiver” I absolutely do not.

What I HAVE learned however, is that I usually wind up feeling worse myself by stewing over the resentment I feel, and that a hefty dose of total disregard actually allows me to function much more comfortable while being tethered to this contentious whining parasite who visits at his personal convenience, ignores LO, and is skipping out to move half a continent away as soon as the paint on the walls of his sparky new condo is dry.......well there you go, my resentment shows itself again!

You KNOW that your reaction is self-defeating, and I know it too about MY reaction to my “problem”, so we will continue to encourage ourselves to reframe our feelings and provide basic formation, and OT give them anything to use to make us feel worse. I’ve gotten as far as being able to give factual, non-sarcastic laced information when asked (a REAL CHALLENGE FOR ME), and simply remaining silent when the nonsense rolls my way.

I cannot imagine a family member acting as mine has, but by choosing the path he has taken, he has also denied himself the joys of connection with a faithful family. His loss, and I’m sure your sister’s as well.

Try the role of “ bland information giver”. If doing so does nothing more than relieve your guilt in part, you’ll still come out ahead.
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Then stop feeling guilty. Your sister chose not to inquire about your Mom so it's all on her. Tell her that, then ignore her if she keeps bugging you about it. You don't need this from her.
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Oh boy, a can of worms here.

Me, I chose not to let it bother me, why, because I get overwhelmed with it all and agitated. I have two younger brothers. One lives 8 hrs away with MIL problems of his own. The other lives 1/2 hr away and I haven't seen or heard from him since Mom passed in Sept 2017. I have text him Happy Birthday, went people he knows pass with no response, But thats my brother. Neither called on visited Mom on a regular basis. When my one brother did visit, he couldn't stand to see Mom the way she was. So didn't say goodbye before he returned home. I have been thanked by both for caring for Mom. Which was nice.

I really understand why you didn't bother to tell your sister. All of a sudden she cares? Why should you be made to feel guilty. You are left to make all the decisions. Your the one who is there thru it all. And sister just does her own thing. And I would tell her that.
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Could it be possible that your sister, like many people I encounter regularly, do not truly understand what Hospice means? I am continually amazed how the word "Hospice" translates into "imminent death" to so many individuals who have not had any direct encounter with this wonderful organization. Perhaps your sister thinks that Mom is closer to death than she actually is due to not truly understanding what enrolling Mom in these services means. Maybe the Hospice organization could reach out to your sister in an effort to explain all the support they will provide not only your Mom, but the family, for as long as she lives. They could call, email and send information to her. This would take the burden of explanation off your shoulders and allow you to focus on what is truly important.
Just focus on your Mom...you are obviously a very loving, concerned and involved daughter! Let Hospice remove some of this unwanted stress from you!
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JoAnn29 May 2019
Her sister is a nurse
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Thank you to all for your insightful responses. Just to clarify, I do answer all of her texts and I told her when Mother was admitted to NH. As someone on here said, she knows shes 100+ and won't be around forever. It's now or never...
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Janeyd54
At 100 years old, death is always imminent. Hospice or no. One doesn’t need to be a nurse to know that.
Your sister has her own demons no doubt. Most of us do.
There is no reason to feel guilty. You did nothing wrong.
Your sisters response is all on her. It’s about her feelings. Not yours. Enjoy your mom and perhaps you can simply ask your sister to keep in touch going forward. Then let it go.
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To me, people who are in the wrong are the ones who should feel bad, so, if I did nothing wrong, I don't put any bad feelings on myself.

I suspect that sister was perturbed when you told her that if she wanted to know her mother's condition that she could go and see for herself. In her mind, she saw that as you saying she didn't care about her mother. So, she got defensive and is trying to prove that she is interested now. Now, she sees she's on Hospice and the idea of death is making her scared. Fear makes people act irrationally sometimes.

I'm not sure if I would have worded it the way you did when you told her she could come visit if she wanted to know how mother was, because, I likely wouldn't have been invested enough to type out that many words to an uninvolved person. I'd probably just say, Ok. Hanging in there. You know....but, your comment wasn't terrible. It's how you felt. So, that's just something for her to work out in her own mind. I'd try to stay out of it. I try to let discord roll off my back and focus on positive things that i can control and not negative people who I can't.
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cherokeegrrl54 May 2019
Exactly!!
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It doesn’t matter how she has behaved. She deserves to be told any major event that has happened. A similar Le email is all it takes. It’s not about punishing her
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rovana May 2019
Not sure I entirely agree - sister showed no interest over a long period of time. There doesn't seem to be any attempt to exclude her. And OP is not a social secretary. Sis is perfectly able to keep in touch and find out for herself. Why would OP spend time and energy worrying about sis being in the loop, when sis shows so little interest?
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Your sister sounds exactly like my brothers. You are the responsible one, like I am in my family. You did nothing wrong. She most likely has a guilty conscience and is putting the blame on you. Crappy thing to do. My brothers do that to me all the time.

They think they can square things with me by once in a blue moon saying thanks with empty, insincere gratitude to me for doing it all. Not buying it.

By the way, your answer to your sister when she finally inquired about your mom was absolutely brilliant! By telling her to come see for herself she gets to see firsthand how mom is, also firsthand how you have been the one caring for mom.

You have enough on your plate without dealing with your sister. Your primary concern has been your mom. It is your sister’s responsibility to keep up with your mom. Hate to say it but she brought this on herself because people like her are hard to get close to. They don’t want intimate relationships but are the first to complain if they are left out. Well, they can’t have it both ways. She should respect you if she wants respect in return.

You are doing a great great job and your mom is blessed to have a daughter like you.

It’s a tough, long winding road with lots of bumps. I hope it gets better for you soon. Take care, hugs!
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You certainly don't have any reason to feel guilty about anything. Maybe you "should" have told her maybe not that's a matter of opinion and perspective and really no longer relevant. that ship has sailed. Mom is still alive, still in the same NH she has been a resident of for years the only thing that's really changed is the amount and type of care she is getting, you are all getting and that's a positive not a negative. I'm sure the label Hospice is what jolted your sister. I know you are angry at her and she is way out of line but if you could find your way through letting her crap go, it's her crap and simply tell her exactly what you told us maybe even throw her a bone; I'm sorry Sally it just didn't seem like a significant enough change that it was important to report to anyone. The doctor suggested I bring Hospice in because Mom would qualify for more services through them that could make her more comfortable and increase her quality of life not because they felt she was any closer to passing than she was the week or month before. I have learned through all of this that qualifying for hospice doesn't always mean a patient isn't expected to live more than 3-6 months, if that was the reasons doctors gave for suggesting it I would have let you know right away." I know this is being more generous with her than she has been with you or Mom but my guess is your attempt at smoothing this over rather than carrying on tension will be appreciated by mom even if she cant put her finger on it. Better for you too, why waste your time and energy on anger and frustration during this time, even though it's perfectly justified. My 2 cents anyway but I'm also fortunate and have very involved siblings so I may not be relating as well.
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Rovana,

Different topic but a sibling issue regarding phone calls. We had to discontinue because it didn’t work properly but when mom had her emergency call button, one of the features that Humana offered was calling my brothers for me. They explained that my primary concern was caregiver to mom, not notifying others with phone calls.

I really appreciated that. It also took the stress out of calling siblings that never call or visit mom.

Here’s the odd part. I wanted to gag when it happened. Humana would notify them. They would pretend to be all concerned about mom and show up at hospital like they were the perfect sons in front of the hospital staff.

Of course, the ER physician spoke directly to me when they saw that I was the primary caregiver that needed to know all of the follow up care instructions. My brothers would leave before mom was even discharged. It was all an act on their part.
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ACaringDaughter May 2019
My brother played the loving son in the hospital also. The doctors seemed to fall for it.

He showed up with a sad face for all the doctors meetings. After the meetings he would go around the corner and make phone calls. He sounded jubilant!

I will always believe his sole interest in Mom’s health was connected to his expectation of inheritance.

Before she went into the hospital, and after she was released, there were no visits despite the fact that he lived nearby.
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I’ve been there.

Please do not feel guilty for one second.

Your sister is trying to pick a fight. Don’t engage.

You owe her no information. (You might even resent her for suggesting this).

If she was around, she would know what’s going on.

If she was decent to you (and your Mom), she would be next to you, helping with all the decision making / and then she would know very clearly what’s going on.

At the very least, even if she didn’t visit, but just used common sense, based on your mom’s numerical age alone, she could pretty easily guess what’s going on.

Since she is a registered nurse, she cannot claim ignorance or fear (of seeing your mom sick) as an excuse.

How would things be different if you had told her? They would not be different.

I did tell my sibs that Mom was on hospice. They did not even come to visit then. I couldn’t believe it.

Im so sorry your sister is behaving badly. I know you could use her support.

It’s hard for her to take accountability and easy for her to place blame.

At least she is living up to your expectations (and to her past performance).
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cetude May 2019
I told my two brothers mom is on hospice. Not one visit .
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It is my understanding that hospice has a rather strict criteria for when you can enter care -- such as within 6 months (1 year) of death. You say you will let her know when your mother'd death is imminent -- but what does that mean? Your sister's behavior is wrong, However, she is entitled to know and you should tell her of major changes like getting hospice care. Whether she response appropriately is on her. Her behavior is not a reason for keeping her uninformed.
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It is nothing short of a miracle if a person lives to be 100 years of age, so her being on hospice should be of no surprise. In my opinion, your sister is being abusive to you so no reason to feel guilty. It was your sister's choice to not contact her own mom. However, I would keep immediate family informed even if it's just emails.
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I told my two brothers mom is on hospice. Not one visit . Nothing. Her burden of care falls entirely on me and it's very backbreaking. I even got my wrist injured lugging her around.
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As someone who has been estranged from both parents my perspective may differ from others.

I stayed away because of abuse from both of them that continues into my adult years. It does not mean I do not care about them. It means I have set firm boundaries to prevent the abuse from continuing.

So even if I have not enquired, I do care and would want to know about a change in their health status. Being put on Hospice is a significant change in status.

My brother was not the target of abuse by our parents and cannot understand why I feel the way I do. He will say things like just get over it. He does not see that the abuse has continued and I have gotten over it, but also protect myself from further abuse.

I am not saying that the same situation applies to your sister, just giving another point of view. And letting you know that a lack of contact does not equate to a lack of caring.
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NeedHelpWithMom May 2019
Tothill,

I get that. Parents are not always fair with each child. Sorry she mistreated you. Hugs!
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Don’t feel guilty - you are doing the best you can for mom. But moving forward send one email or text to all in the need to know list with updates and changes as they happen. If back and forth gets too much tell her to visit. We do this with my sister who wants to tell us what to do but hardly visits. Makes it easier.
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You should have told her. Even a simple email. It’s not up to you to punish her
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mmcmahon12000 May 2019
Pandabear she didn't punish her. She just told her the truth. Go back and read her full post before you jump to conclusions and judge her prematurely.
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I agree with Rovana: "There doesn't seem to be any attempt to exclude her. And OP is not a social secretary."

Your sister's "relationship" with your mother is her business. If she was so concerned, she could have called the nursing home and asked for updates on the woman who birthed her. But she didn't do that. It sounds to me that your best reply to her is something like "Sister dear, here's the number to the nursing home."
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I am posting this as someone who is estranged from my mother, for good reason. My mother thoroughly enabled my brother. My brother has made credible threats against me, not only around me, but around her and his friends. I heard about the threats from my friends, who heard about it through the grapevine (I was able to verify that he did make credible threats against me, from a waitress who witnessed the whole thing.) My mother has thoroughly enabled my brother; blaming me for bad behavior my brother did. In my mother's eyes, he is Saint K., I am evil b*tch B.

Two months ago, my mother had not one, but two strokes. I had not been told about this by my truly evil brother. My mother realizes that if I had known about this development, the absolute minimum I would have done is send her a card; that I would have definitely arranged to visit and to help. She finally realized that my brother is one vengeful man,.

The reason why my mother and I am now in touch is that my mother finally realizes that my brother is a truly evil man who can not be trusted, who is completely self-centered. I don't think she realizes that, in an act of self-protection, I had to go no-contact with her as well as my brother.

Do you have a responsibility to contact estranged family when there has been a major worsening of their parent's condition? Definitely. You don't have to call the estranged family member. You can send the estranged person a letter--that's good enough.

You acted badly towards your sister. Your sister is justifiably angry at you. You owe your sister a formal letter of apology.
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Of course any sibling deserves the right to know when a parent goes on hospice no matter the circumstances. This is about your parent, not immaturity and petty games for control. Grow up.
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cassandra63 May 2019
maybe you should not reply to peoples posts who are looking for answers not judgement. go in peace and leave others the same.
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don't feel guilty. the guilt is probably just a substitute for the anger you feel at your sisters lack of help and at the same time her need for validation/absolution, either way thats not your job. though i could just be projecting. anyway, just keep caring for your mom and know that you are doing the best you can, and thats all anyone can do.
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I have a different question: do "100.9" and "98.2" mean "100 years 9 months" and "98 years 2 months" respectively, or "100 and 9/10 years" and "98 and 2/10 years" respectively? If there is a convention for this, it would be very useful.
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foxxmolder May 2019
My GUESS is that the point....whatever is the number of months after the years. Of course, if someone wrote.......95.11, then we would be sure it is 95 and 11 months. Either way, 11 months or .5 meaning 6 months, we are close enough with whatever way you decide to interpret it. I know that once a person passes 90 or 100, one is more likely to say 95 and a half or 100 and 3/4. Just like when we were kids!!
As everyone on here knows, life is a cycle and as you near the end of life, one goes back to infant stages and how things were the first 10 years of life. I know my care for my mom will get harder and harder since it is easier to take care of a 5 year old then a 2 year old.....and the most needs to be done for a One week old. I'm sure you get the idea. Things don't get easier as someone ages........it all gets harder. Once we prepare for that we are much more ready for the future. The other thing to remember is how you might have had a 9 year old and you said to friends...."my daughter will NEVER act like that as a teenager, we are too good of friends and she tells me everything." That is most often not the case. Learn from others on here. Take the advice that seems right for you and leave behind all the BS and people who just want to make things harder for you. Supposedly we want to support each other on here.
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Your sister was fully aware of HER mother's age and circumstances. She chose not to be in touch, but expects you to take on not only the responsibility for your mom, but to be responsible for her (you sister). How many times, over the years, did she call you, to inquire about circumstances and your mother's health? To offer help? Your sister is an adult (maybe) and bears full responsibility for her own lack on knowledge. But now that your sister claims an interest, give your sister's contact information to the nursing home, and have them call her directly when there are changes in your mom's health. You have every right to be angry, but guilt, no way. BTW, are you your mom's health care proxy?
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NeedHelpWithMom May 2019
slip33,

One of the best answers yet! Yes, inform NH to contact siblings. You have enough to deal with. Let the NH speak to them. No more stress concerning sibs for you!

They may or may not see the entire situation in a different light if they hear about your mom from someone (a professional) other than you. My brothers are insulting to me and treat me like I am a dummy because I am a woman, not a smart man like them, even though I am the caregiver for mom on a daily basis.

They could also ask the NH any questions that they have and feel more involved if they became inclined to do so. Worth a shot!
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For pity's sake why feel guilty when you've done nothing wrong? I agree that your sibling has had every opportunity to see or inquire about your mom. You are the POA I am assuming so you have every right to determine the direction of your mother's care. And getting hospice on board was absolutely the correct move to make. . It would make no difference if you told your sister about the hospice being part of her care plan would it? No. She is probably feeling a wee built of shame for her lack of attention and is now projecting that onto you to ease her own guilt. Let it slide off your back and continue taking care of your mom. She has no clue how stressful this is and wants to waltz in when it's convenient. You owe no apology. Simply tell her to check in with you often and to see her mom more often.
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Not necessary. Just went through something similar. My mom also will be 101 (in August). She has been at nursing home for year and one half, and it was awful (she was injured 5 times ) and had just given up on eating and drinking the last week there. I decided to get Hospice involved and to bring her home about 2 weeks ago. My two brothers were not in favor, but they resented having to visit her at nursing home. Since I have her POA, I did it anyone. I did tell them, but only because they do live in same city. One works 2 blocks away, as does his wife, but no offers forthcoming to help (he does drop by for a few minutes on his way to work - but no offer of help.) Complains that the one that lives half an hour away and works nights should do equal help.

Anyway, you owe your sister nothing - you are a better person than me because I am not sure I would even let her know of "imminent death".
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NeedHelpWithMom May 2019
Thanks for your honesty.
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Dear janeyd54

You have nothing to feel guilty for. Let yourself believe that —-I stopped posting here after being taken to task by more than a few non caregiver siblings with an ax to grind. I read for advice as the caregivers here are a font of helpful info but the adult children who are not involved in their parents care can be vicious.
I’ve been my mother’s sole caregiver for 15 years in my home after I spent a year taking care of my dad in my home on hospice. I won’t give you all the gory details as I’m sure you have many of your own. I’ve swallowed my resentment for 15 years since I have 2 siblings.. Mother’s Day just came and went and no one called .. sent a card... stopped by .. nothing.
I have husband with guillan barre ...4 kids ... 2 grands .. and I am my mother’s 24/7 365 caregiver .. she’s in wheel chair .. incontinent .. sight impaired and early stage dementia.
I asked .. I begged .. I cried ...one is local one is not ... I’m sorry ... I wasn’t going to do the details ... got me in trouble here last time ..
long story still long now that we are closer to the end of these last 18 years (failure to thrive at this point) one of them has called DCFS on me...accused of financial exploitation of elderly... I brought them every document for every penny of my parents savings , investments etc. All intact to the penny ... try that for a punch in the gut. If I pass them in the street I would do just that ... pass them ...Sum total of communication in the last 2 years was a Facebook message to my grown daughter staying “ why was I not notified that “my” mother has a UTI. She’s had at least 10 in last 2 years ....I’m sorry for the length but I send you blessings and please please do not feel guilty ... you are the one who should know she was there for her mother in need as am I.
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NeedHelpWithMom May 2019
Oh my gosh, so sorry this is happening to you. Hugs!
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