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

The brain physically changes during aging and many seniors are no longer physically able to control negative or nasty thoughts or comments. In addition staring death in the eye while in great pain and still being cheerful and upbeat is a lot to ask. Your life shrinks down to nothing but the pain and the situation. You think you will not be difficult when you get in that situation but you will. Not to say that any caregiver should accept abuse but understand some of that is not necessarily what the senior can control.

Stress2020, my sister pulled the same thing every single time that anyone put boundaries in place and enforced them.

I started turning my phone off overnight because she felt that 130am was a good time to have people rushing across town to hold her hand.

Obviously fear is a factor, however, being worn to a frazzle by the games doesn't make a compassionate caregiver. You, your husband and your children need this week together.

Honestly, if she dies you weren't meant to be there.

Take care of you and let them think about the awful way they have treated you. It will do them good to know that you have boundaries.

Stress2020
I am glad that your evening with your family started out so well. While I was reading your response to my post I could tell how much you were enjoying being in your own environment again. I even smiled while I was reading it because I was happy for you. Then I got to the part about mom calling you and saying that she had taken 2 Ativan, which she hadn't done before. Please don't fall into that trap, you don't know how long your mother will live and you are already stressed out. As long as you continue to prop mom and dad up they will lean on you. I am sure that the last thing you want to happen is to get sick yourself and then you will feel even worse than you do now, because you may not be able to take care of your small children and they need you. Please tell me that you did not return to your parents home early. It is an honorable thing that you are assisting your parents but at what cost? Please listen to the folk on this forum because for a lot of them this is not their first rodeo. The responses may seem harsh or blown out of proportion but we don't want you to experience some of the same things we have. If you have returned to your parents home please get a break again real soon. On second thought if you have returned to your parents house please take your children and run home to your husband now because you have no idea how your father will fair after your mother passes and you may just end up stuck in the 24/7 caregiving role again. Stay strong and please let us know how this works out for you.

Stress2020, Your mom is a guilt master. I'm so sorry. If you are worried she might have od'd, call her local non emergency police to report it. Let them do a well check on her. Call the hospice company and tell her this info as well. Tell them she needs more help than you can give; that your father and the other sibling don't help and you must take care of your family. They will get people in there - volunteers and hospice employees- to help as long as you do your part and take care of your children and husband at home! If your mother has a way to avoid having other people help, she will not use them but use - and I mean **use up** - you.

Don't go back until hospice calls that it is the end. She knew what she was doing, that you would be sitting down to dinner, and she was yanking your chain. You want to remember her good times, not the resentments you feel because of her manipulative behavior.

I hate the new format where there are subthreads. Here's what Stress2020 wrote that I managed to hide when I replied. If you go under Grace21's post from April 27, you can like her post there. This is just to make it noticed by more folks.

(Stress2020 writing April 29) Hi Grace, thank you for your reply and kind words. My children and I left my parents' house and arrived at our house around 8pm this past Monday night. We were so happy to see our home, my husband, their father, our animals! We had been away from our home from March 6th to April 27th (52 days).

We had such a nice day today. The weather was beautiful. My son played on his slipnslide, had a watergun battle withe his dad, flew remote control helicopter, rode his bike, rode his scooter, had the freedom and space to run in the backyard and house( much more space at our house). Overall a wonderful day.

AND THEN CAME NIGHT (tonight). My husband grilled out. We were all sitting together at the table having a wonderful meal and nice time together. First family meal (me, hubs, and two kids) in I don't know how long.... My mom called while we were at the table. She told me that she is ready to go. She said that she is ready to die. She said that an hour before she called me she told my sister and dad that she was ready. She said that if she could take care of it herself she would! She said that she has more pain now in both legs and it's harder for her to get up and move around.

She told me that she took 2 ativan at the same time which she hasn't done before..

I had planned on relaxing here at our house until Saturday, and then I had planned on leaving our house early Saturday AM to head back to my mom's house to stay with her a while. My sister has to work This weekend, and my dad will have to have some help. So, I had planned on going......

BUT NOW...... Now..... I'm debating whether or not I should continue with our much needed break until Saturday, or leave Thursday?

I was so enjoying our time here and then 😥my mom called.....

Stress, let me go back a bit.

You gave up your job and took your kids to be with mom and dad because she has stage IV cancer and is on hospice.

Has hospice given you an idea about how long she has? Is this an aggressive cancer or a slow growing one?

Are you there because mom needs caregiving round the clock?

Is there a reason for you to go back if you're being treated so poorly?

One of the goals of hospice is to keep the patient comfortable and pain free. Is mom not making use of the pain meds provided, or does she not tell the hospice nurse how much pain she is in?

Is she really ready to go, or just ready and manipulating you to return for more? I would stay put.

If your mother has pain, she or your dad need to call the hospice nurse.

Ativan is not a pain killer.

I vote for your staying put and enjoying your family this week.

Glad to hear that you are getting a break. I hope that you arrived home safely and that you and your family can enjoy less stressful times together. This trip home may also give you time to examine whether or not you can keep this up. I hope things works out for everyone.

Slow ride... take it easy... absorb, this is temporary... It is okay... When she passes, then you will guilty of these feelings too... It's lose-lose situation. DO NOT FEEL GUILTY

Take it easy on yourself.. You are doing the best that you can..

When dad gets cranky.. remove thyself from his presence. Just step out, and tell him you need a break...or don't say anything at all. He is going through this too.
EAsy does it. breathe.

Oh my dear. I gave up a good job to to take care of my Alzheimer’s Parkinson’s sweet mother. She moved into our house a month after my husband and I got married and she lived with us for almost 5 years.

I can tell you these words from the other side so to speak as we just lost my mother at the end of January. I am glad her journey is done and I miss her terribly and though it was extremely difficult for me at times and often very depressing to care for her, I can look back now and be so proud of the care and love that I was able to give her. It truly was one of the most amazing And hardest things I have ever done in my life. I know it is so hard.

I would implore you to get help. I had a caregiver come for four hours, five afternoons out of the week for two of my five years of caregiving. Most of the time I felt like I had to entertain my caregiver, and stuck around the house, but there were times where I could escape to the closest hobby lobby and forget about my situation for a bit.

Your dear dad is not going to change, so try to just let his comments roll off. This is a difficult time for him as well. Growing old is not for the faint of heart as there is so much loss and hardly ever any gain.

Your situation is more difficult, having your small children, but again get some help in. Hospice can come in and watch your mom for a couple hours a week.

If in the end you decide it is too much for you and you can’t do it then stop and carry the feeling that you did your best.

Caregiving is a tough job, the toughest I have done. We have no experience in it, we don’t talk about it, and we have no education in it. It can leave us very isolated and again, just downright depressed.

As I mentioned, my perspective is different as my job of caregiving is done for now. I can look back though and be so thankful that I had the opportunity to care for my mom in the manner in which she deserved.

This is a great forum to just get your feelings out. I posted before here that I just didn’t want to care for my mom anymore and then I regrouped and went on to the next day.

Best of luck to you! Remember, you’ve got this!

Dear Stress,

I have 2 words for you: Get. Out.

I don't know how to tell you how to do it, because I don't know your situation. But if it's not working for you, which it clearly isn't, then you need to figure out how to extricate yourself. It's ok to change your mind when things turn out to be so clearly bad for you. AND your children.

There are always more than 2 options ("I do nothing and I'm a bad person" or "I do everything and I martyr myself."). You're not really helping anyone if you're not happy. Get out of there, resume some semblance of your life, find some other ways to help your folks that don't destroy you. Anyone who judges you harshly probably hasn't been in your shoes.

I too am caring for my 88 year old mother with mild dementia. It all started in January when she came down with pneumonia. She was hospitalized and when released, I was the only one able to care for her since my 3 siblings still work. I brought her to my house and I have been miserable ever since. I never thought she would be here so long. Before she can return home, we scheduled a neuropsych exam, but even that has been postponed due to Coronavirus. Just like you, I have moments when I feel so guilty for thoughts I have, cry frequently, and dont want to get up and face the day. I want to get back to my life. Two of my siblings are virtually useless; they are in denial of mom's condition. I am hoping she can go home soon because I am hating my life right now. My husband is unemployed, and my adult stepson is living in our basement going on two years! I want to scream. My mother isnt cruel or nasty, just quiet, bored, and constantly wanting to go home. You need to care for your family and yourself. Otherwise, you'll be no good to anyone. Good luck and give those kids of yours extra hugs!

It's OK, hard times, your life is all over at the minute, two small children and a hospice, it's OK to feel angry, rest well, when you can, everything will pass, xxx

Hi. I’m a bit confused about you opinion that she is not needed there if in hospice. Hospice nurses do not provide care or give meds. At least from my experience. They were available by phone. I provided all care and meds.

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.

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.

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* ?

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.

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.

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.

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.

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.

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 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.

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.

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

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.

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.

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.