I am 29 years old, my brother is 26 and our mom was diagnosed with glioblastoma a few months ago. The decline has been shockingly fast, she lost all movement in her left side and needs help with everything from sitting up to eating to using the bathroom. She lives with my dad who before this was the one with a ton of health problems (pre-diabetes, copd, back pain, the list goes on).

There was a period of time where she was in a rehab facility to get physical therapy for her but both places she was at refused to do any therapy because of insurance (Medicaid) and was just neglected the whole time. My dad is weak but was determined to bring her home and be a caregiver. It worked for the first 2 months but recently he’s started to take too many painkillers and has been too high and extremely aggressive. (We as a family dealt with this behavior a lot growing up and it’s a big source of the resentment my brother and I have for our dad).

It’s clear that if he’s going to act like this he’s not fit to be a caregiver but I don’t know who else can be with her 24/7. My brother and I both live about an hour/hour and a half away from them and we both have jobs that need us in the office. We both moved out of our parents house later in our 20s because we don’t have a lot of money. We had to help our parents pay for their rent and other things while working to get on our feet (my dad has made some really bad money choices that has left them with no assets, no house, no savings, nothing)

Looking online for advice it seems like the only real option is for me to quit my job and move home for a year but I don’t want to do that. I’d obviously be the sibling to do it because I’m the daughter and also I make less money. When my mom eventually passes I’ll still have to worry about my dad all the time and I’d rather never live with him again. If I move back home I’d lose all my benefits, health insurance that I need for the therapy I definitely need, and I will probably be in such a bad financial state that i won’t be able to move back to my city and live the life I was just starting to have. I don’t have a partner or anything either so there’s nobody to fall back on if things go bad.

My brother and I also go home every weekend (and then some) to take care of cleaning, cooking, laundry, medicine, and any of the administrative and financial tasks that is too much for my dad to manage himself.

As far as getting home care goes, the hourly rate is more than my own pay rate at work. I’m so young with no financial help from my parents that I don’t have much savings save maybe 3 months of rent if I need it. We can put her in a home again but I’d be getting manic 2am texts every night, where with my dad she complains but it’s less often.

My friends tell me I’m doing enough but none of them know what it’s like outside of seeing their parents help a grandparent while they die. This is a lot different. My aunt sometimes guilts me about not doing more since she was the primary caregiver for her parents but they at least had savings to pay for care and she was already retired, not just starting her career the way me and my brother are.

Am I making the right decision to take care of myself and my future or should I give it all up to take care of her until she passes? I know compared to some people a year is so short, but I dont think I can do this. I don’t want my whole life to be repairing all the damage done from my parent (dad) who has only ever been irresponsible but I also want my mom to feel loved and cared for in her last year of life. I know she wouldn’t want that for me but what we want and what’s the reality are two different things.

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I’m sorry for this whole situation.

Consider bringing in hospice. Not Vitas. At minimum, they should be sending a nurse to monitor meds once a week, with aides bathing her twice a week. The social worker ascertains which mortuary to contact after she passes.
Helpful Answer (5)
Reply to PeggySue2020

Do not quit your job! You are right that this would be absolutely devastating at this point of your life and career. Aunt is way out of line. . .

Support your mom with your love and your time as you are able to, but please do not torpedo your future.
Helpful Answer (17)
Reply to SnoopyLove

I am so sorry about your Mother's diagnosis. I can't imagine how hard this is.

I had a friend who's Mother had a terminal condition. Three siblings took on the care. They only just made the month out - exhausted mentally & physically, before she passed. Said it only worked because they were all
- local
- all had paid leave/or flexible jobs
- the care needs were still able to be met by just one person at a time, & all 3 were comfortable with personal care

Also what I heard that made this work was;
- they had a plan - Plan A : stay at home.
- they were honest about their limits
- they called in extra help when they needed it.
- they had a Plan B

Factors like one caregiver needing to pull out, needs increasing to 2 x assist or the time increasing past one month would be the trigger for Plan B : hospice inpatient

While of course that is not the only way.. Regina, how your situation compare?

Neither you or your brother are local. Aunt *talks* but would she help? Do you have a big reserve of paid leave or possibility for unpaid leave & to retain your employment?
If your brother did volunteer, would he be willing to share personal care with you?

Another big issue: if you move back, will Dad drop all personal care or even ALL care & you as a female will be expected to do all? I get vibes he will!

I can understand wanting to help, or just even to be there 😥

But living 2+ hours round trip is too far to do daily hands-on care. Therefore Mom & Dad need others in their care team.

Leaving your home to provide care may be reasonable for a SHORT time if you wanted to IF you have paid leave or deep pockets so not to impovish yourself. Longer term has large negative impacts you need to weigh up.

So finally (soz for being wordy)...

Please take away the 'should' from your question & ask yourself 'do I feel guilty?'

No? Good. Just do what you can.

Yes? Can the guilt be redirected eg 'I wish I could move home but it is just not possible'. 'I wish I could do more, but I am not a nurse'.

(((Hugs to you)))
Helpful Answer (11)
Reply to Beatty

Glioblastoma is a brain cancer, and they are usually very quick. Do you have any idea how long this can last? I posted recently that I could care round the clock at home for my mother’s terminal cancer for a month, but could not have continued for too much longer. You might feel the same. My dear intelligent mother kept saying ‘you have to go, you have your own life to lead’. I stayed until the end. The wonderful GP told her ‘That’s what she’s doing now’.

If this stage is quick but longer than you can manage, check out hospice agencies that are residential. Check out what leave you and your brother can get, if you do it one at a time. But if it takes too much, listen to my mother!

Forget your aunt, she can do it herself if she’s that keen. Love, Margaret
Helpful Answer (7)
Reply to MargaretMcKen

Neither you nor your brother should be supporting your parents financially. You most certainly should not deprive yourself of career, job benefits or home in the vain effort to prop up a living situation which is not sustainable anyway.

I'm very sorry to read of your mother's diagnosis, and sorry for the difficulties your father is facing. But it isn't just that you and brother have no obligation to sacrifice your developing lives to compensate, it's that it won't work and it won't help. You could both of you make the attempt, and ruin your immediate prospects, and it still wouldn't rescue your father or save your mother. You'd just both go down with him.

Working together, you and brother should research what is available to your parents as a unit where they live. Time for your mother is probably short: look into hospice care, and make it clear that you children are not able to provide practical hands-on care (you aren't, not at the level she will need). Looking ahead for your father, you can do the "signposting" research. You don't say how old he is but guessing in his fifties or sixties see what support groups and services might be relevant to what he is going to need once he is on his own.

Guilt in this situation is a useless and destructive emotion which will lead to bad decisions and even more damage for all of you. This is a time for practical thinking and setting strong, clear boundaries. For both you and brother, it's a case of "do not set yourselves on fire to keep your parents warm." Watch each other's back.

And turn your phone off at night. Nothing will happen that a) you can prevent or remedy and b) therefore can't wait 'til morning.
Helpful Answer (13)
Reply to Countrymouse
Beatty Sep 20, 2022
I have found giving myself permission to turn my phone off at night & other times has duel benefits - reducing anxiety & increasing common sense.

I cannot prevent all things. I can't really prevent much at all.
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Regina14, I'm so very sorry for your Mom seriously decline in health as well as your father problem. First, you moving back home to take care Mom as well as helping dad too by quiting your job to me would be a big financial lose that don't seem to help you all. Secondly, you need to research resources (medicaid, extra help from their insurances if applicable, social security, disability & other problems for seriously sick, disabled, elderly people. Don't cut off your financials. You need money to live too. You and brother needs to talk and then talk with Mom/Dad too after you and brother have discussed matters separately from them to determine what you all are capable/willing to do. Best wishes for you all. God Blessings, Grace & Mercy too.
Helpful Answer (3)
Reply to MamaWilson8

Thanks for all the replies so far! For a little more context: my parents are both 65 so they have social security and my dad has disability as well. They’re able to pay all their bills but none of us have the cash to pay for round-the-clock care. My job has some flexibility but I started just this month and I was hoping to just be there a few months before asking a lot about full wfh or something, when things start to get really really bad.

I’ve been trying to get some home aid and home physical therapy for literal months but every agency has ghosted me or canceled without warning. I know insurance only covers like 40 hours a week and at the beginning I thought that would be enough because my dad was actually doing a really good job being her caregiver. I really was proud of him for a moment there but then he got his painkiller refill and became a monster once again. He also doesn’t want anyone to come help so I am going to assume he will be awful to anyone who comes by but I am prepared to handle that.

As for hospice, while her body is unable to move much every time we go to the neurologist they say that the tumor has shrunk and isn’t growing. She’s actively on treatments to keep it at bay. The disease is terminal because eventually the treatments stop working but for the next year or so I can see it just being like this. Isn’t hospice only for 3-6 months left? I think they won’t do hospice until the tumor starts growing rapidly again but I may be wrong.
Helpful Answer (3)
Reply to Regina14
MJ1929 Sep 20, 2022
The obvious answer is that regardless of what Dad wants, having Mom at home is not feasible if THEY (not you) cannot afford home care. He's not healthy enough to care for her, and you and your brother have full-time jobs. End of discussion.

Time to sit down with Dad and have a come-to-Jesus talk.
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If your Mom is already a Medicaid recipient and qualifies for LTC, then you could consider researching facilities -- probably local to your father, unless you find one local to you, if your father is willing to move as well.

Look for faith-based facilities that are supported by large religious organizations, like the Catholic Church or other. Your Mom doesn't have to be a member of that religion at all. Yet faith-based facilities are non-profit and see the care as a mission.

My MIL is in LTC on Medicaid in a Presbyterian facility 3 miles from my house. It's a very reputable place. She even has a private room. She gets excellent care. She is not Presbyterian.

I'm so grieved that your family has to go through this, and you and your brother at such a young age... May you receive clarity, wisdom and peace in your hearts on this journey with your parents.
Helpful Answer (6)
Reply to Geaton777
JoAnn29 Sep 20, 2022
Being on Medicaid for health is a different criteria than LTC. You are allowed more assets for one.
Please don’t take on any misplaced guilt in this, you’ve done nothing to feel guilt. Feeling sad that it can’t be different or better is normal, but no to guilt, this isn’t your fault. Listen to no one who tries to give you feelings of guilt. Definitely keep your job! You’re at a crucial age and time of life to establish a career. If your parents were healthy and whole they’d never want you to walk away from your life and job to care for them. Help only as you can, as it fits into your life. Call the local Council on Aging, along with the social worker where mom was in the hospital, and inquire what resources may be available for them. Find out about hospice services, they aren’t round the clock care but a huge help, and not limited to people with the typically thought of “less than six months” Tell every medical professional involved that you cannot provide full time care and need help. Again, this isn’t on you to do, guard your livelihood and health. I’d hope you stop using your money to support your parents, that’s not healthy for either side. I wish you the best during such a tough storm
Helpful Answer (9)
Reply to Daughterof1930

“Despite maximum treatment, the cancer almost always recurs.[3] The typical duration of survival following diagnosis is 10–13 months, with fewer than 5–10% of people surviving longer than five years.[10][11][5] Without treatment, survival is typically three months.[12] “
Helpful Answer (4)
Reply to PeggySue2020

Don't move home, don't feel guilty. You even state your mother wouldn't want you to give up your life to care for her. The impact on your financial, physical and mental health would be enormous and you have other options.

Their are programs that can help and you should explore all of them. It may mean moving your mother to a facility but she will be well cared for and the rest of the family can support and visit her without taking on the burden of providing care.
Helpful Answer (6)
Reply to Mountaingyrl

If your parents are 65 then they have Medicare. If not, they need to sign up for it. If they received SS before 65 then Medicare is automatic.

When it comes to Rehab. If the person is not trying or can't participate Medicare will not pay. Should work that way with Medicaid too. Maybe Mom was too weak to do the excercises.

No, don't give up your new job. Once Mom passes, you will find you can't leave Dad and then you are stuck and can't get out. Better you don't start. What I suggest is calling in APS. Ask them if they can evaluate your parents for help. Maybe coming from a stranger Dad is more likely to listen to them. They can set up Caregivers or recommend Hospice. They can also take Mom out of the home and place her if they think Dad is not capable of caring for her. You just be firm and tell APS that you cannot care for them. You need your job and benefits.
Helpful Answer (11)
Reply to JoAnn29

You have a good heart, but PLEASE do not move home. It could be short, it could be long and you are way too young to take this on. Especially since you really don't want to.

How far away from them do you live? If not too far, you can visit more often and have some quality time with mom without having to be her caregiver.

Look into hospice and/or palliative care. Either one can get your mom some amount of help. If your dad can not care for her at home then she may eventually need to be in a nursing home which might not be such a bad thing.

If your aunt tries to make you feel guilty in the future, tell her you're sorry she doesn't like your choice but you do not want to hear about it anymore. If she won't listen and is calling you, don't answer the phone. Block her. You don't need that.

Good luck.
Helpful Answer (8)
Reply to againx100

“Guilt” NEVER solves problems, pays bills, soothes the weary or troubled, strengthens the weakened, (add more as they occur to you).

Your independence is a credit to you and your brother’s is a credit to him.

In spite of a difficult family life you survived.

Find out exactly what will happen LEGALLY to your parents if you and your brother both withdraw. By attempting to “help” you may be unwittingly jeopardizing benefits that they may be legally entitled to.

In a situation such as yours, don’t look for a “good” solution where there may not be any solutions that are good.

Keep your life, cherish it, savor it.

Learn to turn off your phone to protect yourself from calls placed to you while should be and need to be sleeping.

Answering your question, “YES”. You are totally absolutely right and fair to seek self preservation as your goal.
Helpful Answer (9)
Reply to AnnReid

You are going to feel whatever way you're going to feel about the decisions you make, regardless of what a forum of strangers has to tell you, let's face it.

If you want your mother to feel loved and cared for in her last year of life, yet you don't have the financial means to quit your job, what can you do to make her feel loved and cared for WITHOUT quitting your job? What can you do for mom short of moving in with her that would make you feel good about your efforts, and make mom feel loved and cared for at the same time?

THAT is the question to ask yourself, and then how to go about accomplishing that task.

Remove the emotion from the equation and ask, "How do I go about making mom feel loved & cherished in the last days of her life WITHOUT moving back home?" Remove the word 'guilt' from the question entirely. Because your goal is to do whatever you can to NOT feel guilty AND to make mom feel loved during her last days of life. When you rephrase the question removing the possibility of moving back home from the picture, THEN you can set about making a plan. Maybe you call her every day, you go home on the weekends, you send flowers, small gifts, cards, you find photos of the two of you together when you were a kid and have them blown up for her, fill up a helium balloon that says I Love You, things like that. Small gestures that say a lot but don't require you to leave your blood on the floor in the process.

I am very sorry you and mom are facing such a grim prognosis. I pray that God helps you both through this journey with the least amount of pain & anguish possible. Sending you a big hug and a prayer for peace in your heart.
Helpful Answer (15)
Reply to lealonnie1

I worry when you mentioned you should be the main caretaker because you’re the daughter. Please don’t buy into that!

Read stories here from daughters who were expected to do it all. You don’t want to end up like them! And I say that as an only daughter myself.
Helpful Answer (21)
Reply to LoopyLoo
imout01 Sep 25, 2022
I felt exactly the same! I do realize that that type of thinking is built into some families and cultures, but if my parents were still here and I had brothers, they could forget about skipping out on any duties.

Its hard for you, at your age now. But, one thing to keep in mind for the future, although I know it sounds too much like thinking about $$$, more than your parents right now, is that it is sometimes so that, no matter who the caregiver was, I think if the last parent dies intestate, as an example, the law doesn’t care who did or did not do all of the caregiving. They treat it as if it was your choice to do so and they will still divide assets up 50/50.

Anyone correct me, if I’m wrong. Probably varies by state. But, during these and possible future economic times, it’s never too early to start thinking about your retirement.
Dont quit your job. Remember...after your parents die.. you still have yourself to take care off.

Just do the best that you can and leave the rest.
Helpful Answer (14)
Reply to Exveemon

You are doing the right thing to think of your own future. It sounds like you and your brother are in a classic role reversal situation and have been all your life. Getting your father to step up to his responsibilities seems like a really long shot unless you stand up strong to this situation. Through no fault of your own, you are enabling his abdication of his role as spouse and father by doing everything for him. Your mother may also be enabling your father’s dysfunctional life by continuing to rely on you two young “kids” to take up the slack of your father’s failures. It’s more than unfair; it’s extremely detrimental to your long term well being. Your father is putting you in a double bind in which there is no possible way you or your brother can come out of it unscathed.

This may be a situation in which you have to take some risks with your mother’s care to wean your father off expecting the two of you to step in when he decides to fall apart as he is doing now. You might need to become a little less dependable, reliable and predictable. You must confront your father’s unreliable conduct by making it clear that you EXPECT him to be the primary caregiver. Personally, given the situation you describe, I think your mother would be better off in a facility if she is going downhill fast and is probably not going to recover. I say this because your father’s behavior is potentially a risk to your mother certainly but also to you and your brother. One thing is for certain. When or if your mother dies, you should not take care of your father. You are both young and have your own life to lead. Make it abundantly clear to your father that if he does not get his act together and take care of your mother, he is on his own for the rest of his life. Then monitor the situation on a daily basis and call Adult Protective Services if there is any lapse in care and immediate intervention by the State is needed. Continue to come home on the weekends but neither of you should give up your jobs. Lastly, talk the whole plan over with your mother and try to get her to buy in, if possible.

This is a genuine crisis that has the potential to bring lasting change in all of your lives. Your aunt is wrong if she expects you to give up your life and career prospects as she may have done herself. And keep checking in here at the Forum. We are all here to help.
Helpful Answer (9)
Reply to Chellyfla

Regina, I am so sorry your family is facing such a difficult diagnosis.

A couple of things, mom can not seek treatment on hospice, palliative care is what you should ask her doctor about.

Don't jump every time she complains. Sometimes we do that and the person is just venting.

Remember, she married and has stayed with your dad, she doesn't want to be rescued. She knows who and what he is, let her complain about him without jumping to action. She is dealing with her own mortality and that creates a roller coaster of emotions, be careful of getting on that ride with her, you have your own to live through .

Most importantly, DO NOT give up your life and independence and move home. Your mom will die and you will be stuck dealing with your dad. He doesn't get to be a monster and get family support 24/7/365. Choices have consequences and you do not want to pay for his. Please DO NOT promise your mom you will take care of dad, this is often a deathbed request that destroys people.

Do you and your brother have the same days off? I was thinking that you guys could work out different days off and that would give mom support more days a week. However, you both have to have time off. So please figure out, at least a weekend a month, that you can go do your own things. A year doesn't seem like a long time but, it is long enough to burn you to a crisp, if you're not careful.

Tell your Auntie that she can be sad and she can be angry about her sisters diagnosis but, she can't dump her crap on you. You are an adult and do not need to be a dumping ground, for Auntie, your dad or anyone else.

Great big warm hug! You will find a balance for this difficult time.
Helpful Answer (14)
Reply to Isthisrealyreal
SnoopyLove Sep 20, 2022
So much wisdom here!
Yes. You are way too young to give up your life for this. You are doing plenty. I know. I'm 62, work 6 days a week and travel 6 hours Sunday to help my mom, who has 24/7 aides. (Stroke 10 years ago.) I also handle her finances etc. My sister, who lives near my mom, is a true partner in this. I'm sure others here will have better advice about help or placement but there are options. Do not give up your life for this.
Helpful Answer (6)
Reply to PatsyN
Beethoven13 Sep 25, 2022
I strongly agree with PatsyN. I am closer to Patsy's age and am living this scenario now. Luckily my elderly parents have resources to pay for caregivers but I am living with them temporarily to get the routines and schedules established. You get sucked in and it gets harder to leave. I also work and need the benefits. Don't quit your job. Perhaps Hospice is something to consider for mom. I have heard that since Covid, it can be in place longer and provide some support even if pursuing treatment options. Maybe worth checking into. Don't feel guilty. You have done nothing wrong. If the aunt wants to come help your mom, then she can. Ask her directly. Don't let her judgments guilt you into anything. Sending a hug.
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No, you should not feel guilty. You did the right thing.
Helpful Answer (4)
Reply to ZippyZee

Ask your Aunt when she will be available to help? Or be nicer and ask Aunt how did she do it all, listen, nod your head, then ask her when she will be available? Can either your or your brother take FMLA? Otherwise can you and your brother temporarily adjust your work schedules to assist? Could only Mom move in w you? Could you parents downsize to a smaller place? If there are no assets can't the both go to a nursing home no matter their age?
Helpful Answer (1)
Reply to momma76

Share the burden and don’t fall for the “this is what daughters are for” claptrap. You & sibling must figure out what you can manage without destroying your own lives, and hire for what you can’t do. It’s a difficult situation for everyone: you should not have to give over your life because you’re female!!
Helpful Answer (6)
Reply to annemculver
Hope4All2022 Sep 25, 2022
I agree with you, my parents have always said they “expected more” of me than my brothers. They got a free pass from being make
Sorry about your mother's diagnosis. She and your father requires placement in a facility for LTC that accepts Medicaid. In CA, it's called MediCal, and the recipient can have only a house and car but only $3,250 cash in the bank, plus just around $1,100 monthly income. Obtain welfare information where your parents reside. And, for God's sake, do not quit your job. You need it for Your Own future welfare.
Helpful Answer (4)
Reply to Patathome01

Excellent responses - please tell us that you will NOT quit your job and move in with your parents!

Being the daughter does NOT mean that you should be the one to give up your life! Ignore auntie entirely.

One more thing -- it will not look good if you are trying to get time off your first month on the job. We are a small company, and this has happened to us. Workers who do that sort of thing don't last.
Helpful Answer (5)
Reply to CTTN55

Hello I wouldn’t quit my job or move back home. Your father is there to help in spite of having his own issues. I would keep helping like you have been. Hopefully things will get better!
Helpful Answer (2)
Reply to Kitty7

Don’t feel guilty about it. Y’all are so young. Life goes too fast, by the time you recouped to where you are now, you’d be in your mid to late 30’s. Try to find them help without quitting your job.
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Reply to Icrtfsn123
Scampie1 Sep 26, 2022
This is true. This happened to me.
I feel so sorry for the situation your in under these circumstances I dont think you have any reason to feel guilty. is the anyone else who could help a bit you are doing a good job with going to help with alot on the weekends. I wish you the best and hope someone else will help and not make you feel bad.
Helpful Answer (2)
Reply to Tonia722020

No you should not feel guilty nor should you move home to care for them. I’m sorry they have made bad choices, but that is their responsibility. You can love them and visit them and help as you can but you are responsible for your own life and they are responsible for theirs. Helping is something finding the right resources to get our loved ones what they need. Maybe calling social services to see what they qualify for, maybe help with managing financial things, maybe taking a meal or spending a weekend a month or finding in home care through the state or something but it doesn’t have to be 100 percent hands on by you. Sometimes outside care is needed and helping find that is helping.
Helpful Answer (5)
Reply to Ylrhea

Do not quit your job and move in.
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Reply to JeanLouise

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