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.
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.
Support your mom with your love and your time as you are able to, but please do not torpedo your future.
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)))
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
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.
I cannot prevent all things. I can't really prevent much at all.
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.
Time to sit down with Dad and have a come-to-Jesus talk.
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.
https://en.wikipedia.org/wiki/Glioblastoma
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.
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.
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.
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.
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.
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.
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.
Just do the best that you can and leave the rest.
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.
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.
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.