Gave up job to help care for my mom who is on hospice - Having regrets - Disappointed. Any advice?

Sorry to hear this. How are you supporting yourself without a job. Would it be possible to return to your job or one like it and move out of such an abusive environment?

Woah! Stop!

If you're sitting down and reading this, do this.

Straighten your back and sit comfortably.
Breathe in through your nose, slowly and steadily.
Purse your lips and blow your breath out gently, steadily and completely.
Do that up to five times.

Now. What's happened? And to begin with, how long have you and your little ones been staying at your parents' house?

I am confused. Two years ago you posted about your situation and mom having not only children (you) but grands (your married children) and even a new greatgrand? Do you have custody of grandchildren?

What brought you to move in with her? How long have you been there? Is this a large multigenerational house?

Get a new job, move, and get on with your life.

Your current situation is clearly not working and must change.

I think no one with 2 children should quit a job when Dad is there. And he can't be that old if you have children.

Can you get your job back? Can you go back to your own place? This is not working. You need to get out. You are in their house so hard to set boundries.

Why do you feel the need to be at your folks' house caring for your mom, when your dad is there with her, and so is hospice? If she's miserable and complaining all the time, then subjecting yourself and your small children to that toxicity is not healthy for any of you! I'm very sorry that she's dying of stage IV cancer, that is very sad, and it's also understandable why she's not in the best mood, perhaps. But she should also be feeling somewhat upbeat and grateful that her daughter & grandchildren are there to help her and bolster her up right now. But she's apparently not.

Which means it's time for you to get out of there and go back to work. Visit once a week (or whatever you pre determine to be best) and take your life back. If it were me, I'd leave the children home for most of the visits, too, because they're young and may feel traumatized by the atmosphere in their grandparents' home. Unless you feel that SOMETHING positive is gained for them by the experience, then don't expose them to it. Childhood is so fragile and so short lived; allow them to remember grandma in a positive and loving light. That's my suggestion.

And finally, hospice can drag on for quite a long time. My mother has a friend who had a TON of serious health issues and wound up being on hospice for nearly 3 YEARS. Nobody can say how long a terminal person will live; only God has that information and we're not privy to it.

You've done enough, methinks. Time to step back now & rethink your next steps in this troublesome situation. Wishing you the very best of luck moving forward.

Yes I have tons of regrets that surface but don't want to let it keep me from moving forward. Regrets are apparently are part of past decisions which one needed to draw personal boundaries ... I've been listening to audios to help on this one so that is the summary of one.

It's a depressing situation that comes with seeing someone in decline and illness. You can't always help or fix what is unfolding. My mother is on hospice but we're not at the end it seems and this may go on for sometime.

This is sad for you but there's also a scaffolding of how to treat others who are ill. That you are present and counted, I certainly would be appreciative in your mother's place and you are demonstrating compassion to your children albeit frustration as well. Kudos for stepping in to help your father. Family members are needed for hospice care. Abled bodied family members aren't forthcoming in my situation and hence my resentment which I have to move past.

Keep things in perspective for yourself and your children especially who depend on you. Treasure your small children despite all that is going on. They will remember this and you will. I don't remember if I said this in front of my young child, but I had to tell my mother long ago to not undermine my parenting. There's enough of that which goes on implicitly and in the world at large. Surprisingly she listened. She remains crabby but at least not on this issue. I think it's ok to walk away at these times if all else is safe.

Planning for what comes after will put you in a better place to achieve your family goals, while one chapter is coming to an end.

The thing about hospice is that family assume that means imminent death, but in reality it may mean many months. Is there any possibility of a hospice facility? At the very least you need more hired help so that you can recharge and deal with your other obligations.

Sorry, I just read your updates - there is no need for you to subject your children to this when there are other people available, for goodness sake go home and limit your help to the days and hours your husband can be there with the kids!

Why are you going back to stay with your mom at all? If you can be gone an entire day, seems like they don't need you for caregiving. If you have some fantasy about what a "good daughter" should do, I think the reality has probably blown a hole in that. So how about if you do what you want to do? Your sister lives there, and your father and hospice comes in. She sounds quite far from her deathbed and the whole thing sounds really unpleasant. So please do what makes you and your little family happy and stop trying to please the unpleasable. Good luck.

I think you're coming to the realization that it's time for you to go home. Pack up and leave. TODAY. Just announce, it and go. You should be home with your hubby instead. Sounds like it will be better, for everyone! Just say it's time for you and the kids to be home with daddy. Totally reasonable and understandable.

Quite often, things we think will be the right thing, like helping your dying mother, end up to be sooooo, and worse, than we imagined. That's OK. It's hard to know what things will be like, etc.

If/when things really decline to a more fatal level, you can always return. For a couple of days at a time perhaps.

And that stopping and doing some deep breathing is a great idea. It worked for me when I went through a very stressful time. I would feel myself all stressed out and would relax my shoulders, breath in and out until I felt more relaxed and back under control.

I think you've received a lot of great advice here, and I won't add to it. I just want to address your feelings of disappointment and regret your experience has brought up.

I think most of us have certain hopes and expectations going into caregiving. We want to make an emotional connection. We want to give and receive love. We want to be a source of comfort, not just a resource for getting needs met.

I totally relate to your sadness and disappointment. The first 7 years of taking care of my mother were like that. The crabbiness. The finger-snapping. The lack of gratitude. The expectation that I was simply there to do her bidding.

For me, this changed when my mother went into hospice care at home, during the final weeks of her life. I posted this about it back in July 2018: "It turns out Mom and I are both full of surprises in the last few weeks of her life. She is oddly peaceful, openly grateful, even wryly humorous at times. It seems she's finding something soothing and comforting about being cared for like a baby, and about having me be the one doing it. ….I told her last night: "This is what I moved to Florida for, all those years ago. This time when we can be this close and really love each other."'

In the end, I had the experience I wanted, which is probably the experience you wanted too. I'm so sorry your mother isn't able to give you that, and I do understand your pain and your grief. That's all.

So glad I read further and saw that you’re going home. And sorry for the stress and bad treatment you’ve received. There’s no excuse to be mean and cruel, even when on hospice and knowing the end is coming doesn’t give an excuse to treat your help in such a way. Please don’t set yourself up for more of it. You’ve done your best, now do your best for your own family. Return when the end is very near to say goodbye. I wish you peace

The part that jumped out at me: Your sister lives there as well? So sorry you have to endure this. Your children shouldn't have to live that way either. No matter what people say, it DOES affect the children.
My father died in January, my mom has dementia (?) and cannot live alone. My husband and I moved in with her and I left my job temporarily. She is sweet as pie and very grateful and obedient. That may sound harsh, but with her I have found over these past months that I cannot trust her judgement in any area. Back to you:
When my dad was dying and I was taking care of him, the prominent thought was: How am I going to feel at the end? Did I want my last words to him to be harsh? Did I want him to not have the care he deserved? For the last 5 years I have done so much for my parents and that is why they lived so long. Having said that, I was not going to have one regret! When he passed, I had said everything in the years, days prior that needed to be said and my last words to him were kind and loving. I know that you have gotten a lot of advice here, but I just wanted to add that ONLY you know the situation. Please think about how it will feel once your parents are gone.

I had to grieve for the relationship that I could not have with mthr before I was effective at helping her at all. Mthr was not capable of being a nice person to me. That meant that I limited my time with her, although I help her from afar.

I want you to consider your nursing skills. What skill is it at the end of life that you have that the other members of your family lack? Can they not change diapers? Not wipe lips with swabs? Not pull drops out of a bottle? I think they are fine doing those things.

It may be that you are hoping to get some kind of affirmation from your mom that she's never given you. She sounds like she and your dad are unappreciative. You have given enough for now. You don't have to knock yourself silly to work towards a goal that may never come.

Your children are being affected. I remember when mthr took me on a long trip to my grandfather's house to clean it out. I remember being told to play on the walkway of the townhouse in a city, and to never talk to strangers. I remember vividly a very tall woman coming up to me and asking where my mother was, and freezing in fear because a stranger was talking to me and would surely kidnap me.

I remember nothing else. I was about 4 or 5. What vivid memories will your children keep? Control what they are exposed to!

Go home!

Your mother has two functioning adults in the house with her. She can - and believe me, I am prepared to allow almost *any* latitude to people who are living with cancer - snap her fingers at them.

Just go home. God willing, once you've got your breath back and circumstances have eased up on every front, there will be time for you to reset your approach to your mother, and to the rest of the family too.

Go home. Have a think about where the boundaries should be, and return with them in place.

Good luck finding a new job when she dies with so many unemployed and you have two small children to support. I would be begging for my old job back. If not, you have to live with your decision to quit and move and go on from there. Chances are if you have no husband, your dad will be supporting you and your kids.

Would it be so that if we wanted to, we could be with our loved one when they die. This is probably less the case than it is the case. My mom had stage 4 brain cancer, on hospice, 6 hours away when I was in my 30’s teaching full time. It was not possible to drop everything and be there for her ultimate death. Do I regret it, no, because regret is not purposeful. I wished I could have but there was no way it could happen. What was most important was our relationship before she got a glioblastoma. She knew I loved her and I knew she loved me. That is what I remember. Still miss her to this day over 30 years later. My dad at nearly 99 is still alive and wishing he was dead. I’d rather go young of cancer than have dementia in my 90’s.

You need to have a sit down meeting with mom and dad. Sometime when you are rested and not stressed.
Your dad is treating you like a child because you are his child. Your mom may be doing the same thing as well.
You should draw up a contract spell out exactly what you will and will not do. What you expect them to do and not to do.
There is a document that I was given at a support group called Caregiver Bill of Rights. Look it up and use some of it to help draw up your contract.
Some of it is...
I have the Right to:
Take care of myself. This is not an act of selfishness, it will enable me to care for my loved one.
Seek help from others even though my loved one may object. I recognize my own limitations.
To maintain the facets of my own life that do not include the person I care for just as I would if he/she were healthy. I have the right to do things for myself.
and it goes on with a lot of other great points.
Also include that they are to leave parenting to you.
Can dad care for mom at all? If so set times when you care for your kids and leave mom and dad to themselves. Actually leave the house if possible. Take the kids for a walk around the block or just sit outside and read or do a project.
2 more things for you to do if possible.
Start looking for a job. Lots of places are hiring particularly someone with Hospice experience. Unfortunately you can not work now because your mom is vulnerable and you have your kids to worry about.
Start looking for a place of your own. Or if the house is large enough try setting it up like there is an "In-law suite" and you and the kids confine yourself to your "home" when you are not "working"

Caring for someone and getting paid to do so is far different than caring for a relative. There are emotions and expectations with caring for family that are not there when getting paid to do a job.
When you were working in Hospice if you saw you in someone else what would you tell them? (did that make sense?)
Hang in there.

As a responsible adult your top priority should be what is best for your children.

First and foremost I am sorry you are dealing with all of this.

Secondly, if my answer comes across as judgmental, I apologize up front, that is most certainly not my intention. So much is lost in a written answer because there's no inflections or facial expressions.

Has your mother always been like this? If so, then expecting her to change at the end of her life is impractical. People are very predictable; they follow patterns. If her pattern has always been to treat you shabbily, that is not likely to change. If this is new behavior, she could be resentful (her life is ending, yours is still flourishing), and/or she might be afraid of the prospect of dying. It doesn't excuse her behavior, nor does it make it ok, but it might be easier for you to deal with if you know where the behavior is coming from, so to speak.

The snapping of the fingers - well, that's just plain rude. You wouldn't treat a paid employee in such a manner, it is not permissible to treat family that way. It's OK for you to call her on that particular behavior, hospice or no! I had to have a conversation with my mom that I am not the paid help and she is not going to treat me as such. She was pissy about it, but the behavior did improve somewhat.

Does she treat your sister the same way she treats you? Is your sister caregiving along with your dad? If you went to their home to give your sister support, then talk to her about this. I have 2 sisters. If I needed help with mom and one came and then decided she didn't like the way my mom was treating them (and my mom was treating them the same way she treats me) I would be really resentful if they decided to up and leave. I'm not saying you should stay if it has become too toxic for you - but if your sister has been dealing with the brunt of this behavior you might have a frank conversation with her before you check out. If your relationship with her (your sister) is good, and SHE needs your support, then you and she can figure out a way for you to give her that support that's not at an expense of your mental health. But you have to give your sister a chance to say her peace - and don't be surprised if it's resentful of your freedom. That's what I miss the most that both my sisters have, is the freedom to come and go - vacation, etc. - without the constant "what do I do with mom?" dynamic hanging over my head.

Unfortunately, there are no easy "one size fits all" answers for these kind of family dynamics. I have a good friend who always said you never know what you're going to do in any situation until you're in that situation, and I have found she is so correct. I send you cyber hugs and wish you peace in your journey. In the end, all we can do is what we think is best in any given situation.

I am so, so sorry to hear of your distress. You are a wonderfully caring adult daughter and mother. That being said, you need to take control and make decisions about your life.

1 - Your children are your highest priority. Any decisions you make should be in light of what creates a healthy, safe environment for them. Abusive behavior should never be tolerated around them.,, since that is what they will learn.

2 - Your needs must be met. You have legitimate needs: physical, emotional, social... Caring for others should not cut you off from whatever legal/ethical means to meet your own needs. Seems you may want to get that job back.

3 - When your mom passes, you will still be alive and need to live. This encompasses all those tasks of life that will still need to be met: home to live in, meals to prepare, bills to pay, decisions to help your family. Do not do anything that will make it harder to accomplish your life tasks - now or later.

4 - Your mother's medical treatment is focused on keeping her comfortable, not on curing her disease(s). Nobody really knows how long it will take someone to pass from various illnesses; it is always an educated guess. Do what gives comfort to your mom and creates meaningful memories.

5 - If living in a climate of discord stress, take steps to change the situation. You can not change the way other people act.... we have all wished we could and usually fail at this. The only persons you have control over are yourself and your children. Find ways to create that peace-filled, loving environment you need... either at your parents home or creating a home without them in it.

My advice, once your home, stay there. You have a very good reason, you are to stay in place. Your sister, still working and Dad too, are jeopardizing you and your children's health. They get infected, they bring it home. Things have changed since March first. We have been lucky in my area of S Jersey. Since March 27, 107 cs and 4 deaths. My Town maybe 9 of those cases. So far so good, but they say its not over.

Its really not fair to your kids to uproot them. Once you are home, tell Dad you and husband have agreed to shelter in place. Your home is a much safer place for your kids then people coming in and out of his home maybe bringing the virus with them. At this time, your family is top priority.

Dad is just going to have to give up a little as Moms illness gets worse. He may have to put his life on hold. She "is" his wife. His responsibility.

I don't believe that you should have to stay where there is such discord because your children come first. Yes.. no matter how you mom (parents) have or are treating you, you are to do what is right BUT.. that does not always mean staying there taking care of them. Your dad.... his responsibility. You do what you can but not at the expense of your children. My mom was NOT sick when this happened but.... she was always feeling sorry for herself. She would NOT hold down a job and WE NEVER HAD A MORTGAGE. She could not.. more of "would not", work to support us while we were growing up. She claimed no money coming from dad but I doubt that was true. I noticed my brothers NEVER came back at her about anything. They/ we always seemed to do whatever she wanted. (Brothers held down full time jobs while in junior high and high school) while she did nothing but "party". Anyway.. many years later, oldest brother is married with stepdaughter. My brother told me that mom showed up, sat on the deck, bawling. My brother FINALLY HAD HAD ENOUGH OF THIS. He said he told her that he is married... he has a wife and has a child. He is going to take care of them. He stated no more and went back inside the house. Mom left and there was no more trouble from her to him. BUT... she did this to me the whole time I was in junior high, high school and until she died suddenly several years later. I was 32. I tell ya... I was glad when I heard that she was probably going to die. NOW... what I wish I had done to my mother... I wished I had stood up to her like my brother. I was actually afraid of my mother. She never hit me but I was always afraid of getting yelled at. She used to say to me, quite often, "The only thing you know is what you read out of books". She had accused me of going to bed with one of her boyfriends. I did NOT stand up to her like I should have. THAT is what I suggest you do. You need to set some boundaries. Write them down if you have to. Pray before you start. Many times we enable people to do wrong by OUR choices. And they are going to keep doing WRONG if WE don't do some changing of our actions. After you list your boundaries, firmly but kindly, tell your mother what those are. Stand up for yourself and for her. You need to give her some "tough love". You need to do this as much for her as you do for yourself AND YOUR CHILDREN. GOD bless.

Do you, or your family, feel like you're the only one who can properly care for mom since you're a nurse? As an RN, I felt I should be able to take care of my husband when he was home on hospice. I developed Compassion Fatigue, and only realized how burnt out I was after he passed away. I regret that I couldn't step back and see what was happening and enjoy the little bit of time we had left. Make sure you have a good support system for your own wellbeing.

This is what stood out to me, because it was my experience: "It could be tolerated more if the crankiness and critical spirit and negativity was not present I'm sure."

I was only (very!) briefly a live-in caregiver for my mother, which turned out to be just over a week when she became nearly helpless because of some muscle strains. It was awful. But from that experience, I figured out that I would never do personal care for my mother.

She lived "independently" in her condo 7 minutes from me. I called myself the "Dummy Daughter Driver," because that is all I was when she gave up driving at age 90 -- her driver. She did not like the boundaries I put on that, would not let me grocery shop for her (I wouldn't pick out the exact right piece of fruit, can, box, etc.). Anything I had to drive her to do took hourssss....She doubled-down on the orders about how to do every.single.little.thing because that gave her the illusion of control. I was stupid, and didn't know anything at all, according to her.

And she was ungrateful. She was very angry when I brought up being compensated. "You don't pay FAMILY!" she hissed at me. Yet whenever I brought up something that one of 3 (out of state, of course!) brothers could do for her, she turned on me and nastily said, "They are busy!" I was told that I was always a nasty person, my time wasn't worth anything, blahblahblah. She would have these "crying/shaking/shaming/blaming" fits. I could just feel a wall go up inside me to protect myself and a switch turn off any caring about her when that happened. I think that might be about where you are right now with your mother.

It was a very quick decline for her, when a gallbladder infection landed her in the hospital for 17 days, then a SNF for rehab, and then at that same SNF (same room, even) for long term care.

I ended up being paid for the time I had to spend with her, from when she stopped driving. One of my POA brothers agreed to it -- $20/hour. It was all a "gift" to me for what I did. She would be very angry if she knew!

And if she was more pleasant and appreciative, perhaps it wouldn't have come to that. But with the money, I treated her as just a job. Our relationship (never wonderful, but not bad) would never recover. But it made me feel less emotional about it all, too -- it was just a job.

my mom contracted covid19 and was hospitalized - she is 88 with heart failure, diabetes and hypertension but she was still cooking , cleaning and doing laundry before covid….she came back from hospital a completely changed person - mostly due to not feeling well from corona - has not gotten out of her pjs since mar 10 - sleeps a lot - gets up every hour to spit sputum and pee - and I get up with her since she needs assistance now getting out of bed, etc...….im now doing all cooking, shopping, laundry......etc - sometimes she is critical and snappy BUT I realize its because she is angry at being sick , angry at being old, angray at needing assistance and bothering me.....so I try to swallow my pride - eventhough im dead tired and try to understand that if I were in her shoes, I wouldn't be happy either....she is weak, cant use her right arm due to torn bicep/rotator cuff.....I know its hard to just accept it - sometimes I snap - but I try to understand it....I know when she is gone, I don't want to remember us arguing so I accept it as much as a I can.

I think what you are feeling is perfectly normal. She has problems and is exhibiting poor behavior which upsets you - who wouldn't be bothered by that? I sure would and if both parents were doing things to harm you, I would not be there - I am not there to be destroyed or harmed. I did not cause the problems, don't punish me for them - that is what you must remember. If this keeps up, and I assure you it will, why, why, why are you staying there? You have a life and a family - and they should come first. Get outside help if you can't make them stop or put them somewhere. But do NOT feel guilty - they are the problem. Now take care of yourself.

Stress2020: Did you answer this call but roster yourself on for 24/7 ? I'm sure you know hospitals don't run like that A big team is required.

A friend of mine (RN) took on home hospice for her Mum along side 2 more sisters (rotating days). All were exhausted & ready to call in more help at 1 mth when Mum passed (much earlier than expected). My friend was honoured to take on this calling but in hindsight said she would get in more help as you just never know the timeframe.

She also said she did not have the stamina to do the long term drawn out years of care that many do. The 'charade of Iindependance' propping up non-independant elders or just cranky 'family must do for me'. I mention that regarding your Father down the track & to think about your boundaries there too.

I'm sure you will restore the balance & continue to be a great carer to your family & to yourself too ((hugs)). Name change to maybe *calm2020* ?

Guilt will eat you alive. You haven’t done anything wrong. Don’t take the bait. Don’t believe what your mom has told you. She may want to make you feel guilty but reject that feeling.

Trying to make someone feel guilty is often a form of manipulation. You know the truth and that is all that matters.

Your priorities are with your children. Go back to your home. Take care of your children. Be at peace with your choice.

Hi, that's exactly how I feel today. I am in bed crying too, right now. It's thankless, taking care of someone who is deeply unhappy. They take their mood out on me and when I get angry or frustrated they act indignant.
I feel that I too have made a mistake coming in to my parent's home to care for them, my father has multiple health problems, and has had two bouts of cancer. This weekend I decided to stop helping. He wants to go back to a specialist for the cancer in his throat, and I've lied and said the Dr. is not seeing patients because of Covid 19 (I never rang to check). I'm exhausted, he is horrible and angry, and I can't help but look forward to him passing away. I feel awful writing this down, but that's why I've come to this site, to blow off steam.
It's not us, we're trying to help, but ungrateful angry parents can be seen as a lesson in how not to age. No one can give us dignity, we have to be dignified.
Running from Dr. to Dr. afraid of death, just prolongs suffering.
I have decided that I will not age like this, and every day I accept that I will die (with Covid 19, we may sooner than we think). But I will face the end of life with bravery.
Not in fear and anger, treating people around me terribly.
It will all be over 1 day, I often look at my dad and think, "not too much longer" and the frustration and anger lessens.
Get out of that house everyday, take the children for a walk, listen to your favourite music, get away from your parents mentally.

Good luck, remember it's not you, it's them. Take good care of yourself and your children. You guys first, your parent's second.