I'm so upset right now that I almost don't have the energy to type out my thoughts. I have so much to say. So much to write. I have been up for 2 hours crying in bed, sick.
I gave up my job to go to my parent's house to spend time with my mom and help while she is on hospice. I have 2 small children who are with me.
I feel taken advantage of at times. I feel like a slave. I feel disappointed at how I'm treated and how my children are treated. My mother is always crabby, and quite frankly..... Right now... The way I feel is that I like it when she's passed out sleeping because she's not so negative, so critical, so crabby. I used to feel guilty for those feelings, but right now.... I don't..
My dad has treated me like a child and has underminded my parenting at times.
I just don't have the energy to type a whole lot or explain. Maybe I'll feel more up to it later.
My mom has stage IV cancer and is on hospice. I feel so disappointed at the time spent here with her. So very disheartening....
Anyone else have these feelings?
My bills are thankfully taken care of (what a blessing that is).
Thank you for your response and for taking the time to read.
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 feel relaxed. Thank you for reminding me to STOP......just STOP.....relax and breath......
Mom went to the emergency department the 1st week in March, was at the ED all day, transferred to a different hospital to an oncology unit, and then 3 days later she was sent home and admitted to Hospice. The doctor thought she would die before the summer was up. He was surprised that she lasted this long (diagnosed Sept 2018). He said that we have "Bonus time right now. Go home and enjoy it." So, we have been with her since the beginning of March.
The hospice nurse comes once a week ever Monday.
I appreciate your response.
What brought you to move in with her? How long have you been there? Is this a large multigenerational house?
Your current situation is clearly not working and must change.
Definitely agree!
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.
I agree with you now. I wish now more times than not that I did NOT quit my job for MANY reasons. My bills are taken care of. So, that's not a concern at this particular moment in time (thankfully).
Can I get my job back? Sure I can always start back. I started babysitting from home a few months before mom was rushed to the ER, admitted, and then sent home on hospice. I quit my job then.. I was a stay-at-home mama so that I could spend more time with my children. I was a stay-aat-home mama for 3 years (10 years of nursing prior,). My children and I can always return back to our home, and I could always pick up babysitting from home again truth be told. Financially I don't have too but I like too for extra spending money for my babies.
Yes, boundaries are VERY hard to set in THEIR house. Yes ma'am they are!
Thank you for your response..
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.
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.
With COVID-19, I'm homeschooling my kindergartener from my parents' house. So, yesterday I worked with my son from 07:30am until 12:30pm (with many breaks) and then we left. We stayed gone and didn't return to my parents' house until 08:00pm. Once we arrived, we went to the backyard, in the dark, sat in chairs, snuggled, and watched a cartoon on DianeyPlus. I was dreading going back in, and I was trying to wait it out outside as long as I could, and then I decided how ridiculous it was, and we went inside at 08:40pm. I spoke to my husband on the phone who said that he thought we should go back home for a while and let EVERYONE have a break. He said that he thought there were too many bodies living in close quarters (my older sister lives here too). So there are 7 people under this roof ( which is including a newly 4 year old and almost 6 year old).
We had a nice day yesterday (just me and my two sweet little ones.) We went to two beautiful parks. They rode their bikes. We played catch. We played kickball. We played frisbee. We blew bubbles. We played with silly string. We played hide and go seek. We played "good guys and bad guys and jail" as my daughter calls it. We treated ourselves to Happy meals for them and a fantastic meal from a deli for me (curbside of course with the virus). We stayed gone for 8 hours! At the very end of our fun day, my almost 6 year old son was READY to get back, and I had the LONGEST talk with him about behaving and not being too loud, how we have to respect space and time and pick up (toys) after ourselves, etc. etc. etc. He was sweet and promised to make it easy on me, him, his little sister, his grandma, everyone tomorrow.
Even though, we had a nice day yesterday......I know...... That that one break, even though it was nice..., Was just not enough. We're going back to our home Monday. We will be at our own home from Monday to Friday morning. Then we'll go back toy Mom's for a little while longer.
Well, as I write, I'm feeling more relaxed and sleepy.... Thank you for your kind words and listening (well reading) .....
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!
Respite care - Up to 5 consecutive days at the hospice facility to give caregivers a break! I need to remind my dad and sister of this.
My mom woke me up at 06:30am by snapping her fingers VERY hard, VERY long for a long time. She wanted a glass of orange juice and 2 pieces of buttered toast with cinnamon sugar. Why snap fingers? I guess because she didn't want to exert herself speaking (?) Nor wake the kids (?). We sleep on the sofa bed in the TV room next to her room (former dining room). I was up for 3 hours straight last night, and then when I did sleep I woke every 30 minutes to an hour partly because my kids are all over the bed and partly due to my stomach being upset and thinking about everything.
Thank you for reminding me of this!
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 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.
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.
”How will you feel after they’re gone?” places all the guilt and responsibility on the OP. That is the last thing she needs.
A grown child can be kind to a parent without sacrificing every last of herself and her sanity (and her kids too). It’s not her fault her mother is crabby and unappreciative. She couldn’t earn her mom’s love before and she isn’t going to earn it now. That is mom’s fault, not hers.
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!
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.
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.
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.
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.
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 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.
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* ?
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.
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.