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.
#1 - This is what YOU want, based on what you wrote. Reading between the lines, that is what you want. That is just fine.
#2 - I believe this is also what your mom would want. I have adult children and if I was in your mom’s position, I would want to know that you are furthering your life, that you have good benefits and that you were around, but we’re not consumed by my illness and didn’t see me decline any more than you have to.
So, be there for your dad when you can. Visit, hug your mom, give your dad some breaks and spend as much time with them as you can bear, while still having some free down time for yourself to relax enough to do well at work. If you have to skip a weekend once in a while for your sanity, do so.
Stop feeling guilty. Coming around like that is still a big sacrifice and more than many do. Your aunt should help herself instead of making you feel upset.
I’m sorry. This is a tough journey. You are not alone. You will be okay.
First of all I have to say you and your brother are doing a lot considering what you shared with us. Both of you should be commended.
In all honesty, I don't think your parents can take care of their problems as was indicated by I'm sure another well-meaning respondent. Basically, you need professional help to come in, do an assessment, speak with both parents' primary care doctor and sign up for on the portal so you can have access to their test results and also contact the doctors' from out-of-state.
Call on the troops--any resources that can be brought in, bring in.
I read your story and you don't want to go down with the ship.
A couple of suggestions, you read them over, think them over, decide what is best for your situation, thank us and send us on our way and make the decision that is best for your family:
*Can mother get Palliative or Hospice Care?
*Sign Dad up for Meals on Wheels and/or day respite program with transportation
*Some States and employers have a Caregiver's Act...I'm not sure if you get paid for this and/or they hold your job? You can inquire at your HR office.
The Family Medical Leave Act, again your Human Resources Dept. can assist you.
*Do you think Dad belongs in a Senior Housing...sounds like this could be an "emergency" situation. Again, some States are better than others. Should you move Dad closer to you (not in with you) but again in Senior Housing.
*Meet with a Social Worker, Department of Elderly Affairs, your local Church, an Elder Attorney (who will give you a one-hour "free consultation)
*Will your company let you work remotely for a time?
You're just starting out in the world. You have an immediate situation with your mother (priority) but also with your dad this could continue for years'. Don't make a rash decision. You sound like you have a good head on your shoulders.
Usually the men, listen to the men or at least that's how it is in my family. Can your brother handle Dad and you handle mom?
If your dad was Veteran there could be assistance too. The Nurse Case Manager at the Primary Care Doctor's office also seem to be well informed.
Share your story, people are good, they want to help.
I hope that I gave you some hope. If you were my sister I would advise the same thing. You are all in my prayers. God can do anything. "Jeremiah 29": I have come to give you hope and a future!
Do not feel guilt; you have done nothing wrong and are not contemplating anything wrong. You are doing what is right for you. Feel sympathy for your parents' situation and feel sadness that their lives have not gone as planned, but do not feel any guilt. The ones who should feel guilt are those trying to impose on you a sacrifice that they are unwilling to make themselves.
Tell your family that this is not a problem of your making and you are not the solution. Your parents are responsible for their own care. If you and your brother CHOOSE to assist them, you should do so out of a loving desire to help them and do only as much as you CHOOSE to do. It sounds to me like you are already doing more than should be expected. If your mother must be placed in a care facility, turn off your phone when you go to bed at might. You need your rest. Respond to your father's text messages in the morning.
In my case there were 5 sibs, 3 of us within a half hour's drive of mom's house. Long before there was a need, we all stated that we would not live with Mom nor let her live with us. She was welcome for visits, but even healthy we were exhausted after that week or two visit. We knew that living with Mom or letting her live with us was simply not going to happen. What we did do was split up the week and take turns visiting Mom, taking her to appointments, etc. The sister who lived to far away to help with those things called Mom every day and visited with her. Your friends are right--you are doing enough. There are many of us who have been there and can support you in that. You are already doing more than I was willing to do for my Mom. Even so, after 6 years of taking her places twice each week and getting things for her during the last years of Mom's life we were all worn out. We were all retired, but we also have the physical issues that come with age. Even with our limits solidly in place, it was a strain spending 3 or 4 hours caring for someone else 2 days each week.
I do believe that my eldest sister's daily phone calls probably made as much an impact on Mom's well-being in those difficult years as the lunches and visits the 3 local sisters made. Oh, yes, the brother. He did show up once or twice. You are fortunate that your brother is helping. Let him do as much as he is willing, but define your limits well, and review them often. When it becomes obvious that your mother needs more care than you, your brother, and your father can provide state the obvious: Mom needs residential care. And stick by it. Do not be distracted by your father's drama. You will serve your mother best, by preserving your own self enough to be able to extend to her the caring conversation of phone calls when you are taking care of your own life.
I think that your head is in the right place and you have some wise, if inexperienced, friends. Do what you know you must do and accept the reassurances of your friends. As you age some of them may need your support as their parents age and fall ill. Let them support you now and you will be able to support them in the future. Many of us are with you.
I checked myself up against your advice. You can't always do what you wish you could because of their mental illnesses on top of all of everything..
Many of us are positions similar to hers.. with Parents who are not mentally stable on top of their having physical issues.. "Regina14" should not be sacrificing her all of everything to support. I like the idea of her going up once a week. Would it be possible to go up twice a week, every other week? Anyone else that could add more support? Any other family or an aide for a couple hrs a week. Not a good situation.. but you have been thru enough. Enough is enough. Do what you can without losing yourself physically or mentally!!!
How old are your Parents? Is your Dad a smoker?
How old is the Aunt? Your Mom's or Dad's Sister? Does she live close? Obvi she is in a different financial situation. Could she pop around to help?
Do not listen to her re: your moving back in. My Mom is mentally ill & told me generations back her family would move in with the others.. I call BS as her Mom moved in with her Sister (my Aunt) and my Mom never stepped up..(outside of some financial support to her Mom)
Your Dad is addicted to pain meds & was formerly aggressive & ...same behaviors now? NO way in hell should you move back in! Mentally unstable.
Sounds like he is angry at situation he is in, but taking it out on everyone else.
How is the relationship betw your Parents? Is your Dad abusive towards your Mom?
I say do as you are doing. If you can come around another time during the month...great... If not..you can't..
Is there anyone else or funds to hire a Carergiver once a week?
I love the advice from those who are familiar with which services might be available!
*I know of "1" situation of an elderly Parent who moved back in with his Sister. He spends a few days a week living at his Daughter & Son In Law's, 20 mins away. He is a FAB 91 yr old with an amazing personality...
Because your mother is on Medicaid her medical expenses should be covered and that’s a big deal. She will qualify for many services that your family could not otherwise afford. Do you have a local PACE program? Essentially PACE is a nursing home without walls so services are given in the home. Hospice services would also be invaluable.
You allude to your father’s aggressive behaviors and that he is taking a lot of medication. This is concerning. Could he become aggressive toward your mother? If so, consider reporting this to adult protective services.
Your local Office of Aging would be a helpful resource to connect your Mom with more services.
Please know you are a very good daughter and your love for your mother shines through.
in the meantime, can you and your brother talk to your parents, and tell them you are working on a plan to help them! I would get people in to help them if they have medicare they can direct you. I don't know how old they are! there may be women in the neighbor hood who are willing to help out here and there for a small fee (just a thought - I know you don't have alot of money. You are good 'children' for going there on week end to help! it's important that you do something about this now! Good luck and God Bless
It pretty much comes down to: If you need 24/7 care, can you afford it. If not, make application to get a NH bed.
I am so sorry you are going through this at such a young age.
Do not quit your job. You and your brother are already doing a lot driving over on the weekends.
Let Aunties phone calls roll into voice mail.
My brother in law had glioblastoma. He was told by his cancer docs that he would have 24 months at most. I think he made it to 22 months. He had pretty good quality of life up until the last 8 weeks. He worked a job up until the last 8 weeks.
His cancer docs also told him when he was diagnosed to get signed up for hospice to get services.
My sister signed her husband up for hospice. (Mind you he was in hospice and also working.)
Hospice will get you a lot of services that I think would help you. A RN came around to the
house once a week. A CNA came around to the house once or twice a week. A social worker
came around to the house every couple of weeks. I think in your situation getting your Mom
registered in hospice would get you extra services and help you out a lot. I'm surprised your parents have not already registered. I think the diagnosis alone of glioblastoma will make your Mom eligible for in home hospice and she can be moved later if need be. Being registered in hospice will take a lot of the burden off of your shoulders because the RN can tell you what you need to do and you can follow the RN's instructions. Hospice will also send in a medical bed to
the house and a wheel chair as well as other supplies so that they are on hand. Hospice will also help to get Mom transferred somewhere if and when the time comes.
Really consider hospice. I'd be very surprised if this was not already discussed with your Mom and Dad.
Again, my sister signed my brother in law up for hospice right after the diagnosis. He qualified solely on the diagnosis. He kept working. He got cleared by the government to train Army Rangers in the Las Vegas desert. He was also "in hospice" at the same time.
Please keep your job.
Contact Adult Protective Services (APS) and give them the story. Report self-neglect. Let them assign a social worker to the case and let them set up services for your parents to get assistance with their rent, food and other necessities. There are programs for this.
Your parents made their mess. You can assist, but not use your whole life to prop them up.
Where is your dad getting money for all his pills? Docs don't give them out any more like candy. He has to wait to get it filled on the very last day. They account for every pill. Is he stealing mom's medication?
Listen to others on here. Don't let your life be sucked into that. You can help but not be consumed by it. Your dad will let you do all the heavy lifting while he gets high and mentally checks out.
Finst thing I would do is find out if he's stealing mom's medication. She could be in agony, while he's high as a kite not caring. Then I'd call adult protective services on him if he is. Is mom left without food, sitting in her own waste, not clean?
Listen to what others have said. Do not move home! Give us an update and vent on here any time. It can help.
Guilt is often defined as good intentions we never had. You’ve described an untenable choice. Leave a job? Commute long distances? Take care of yourself? I have to admit I was lucky. Mom had enough to pay for assisted living. Your parents do have choices. Can they move to your town? Get some home care? I have a friend who was able get hospice care even tho, like your mom, death wasn’t imminent.
I feel your distress over choices you’re faced with, but it might be making you so miserable that you can’t see options. Please contact your local agency on aging. When I grew up in the 1950s, it was commonplace for my friend’s grandparents to live with their adult children. But in those days a lot of adult children didn’t work. But unless you find a way to deal with that guilt, you’ll stay stuck. Hope you take this as caring advice and not harsh judgement.
While he was in the hospital, I stayed overnight and basically was her full-time caregiver while also working from home full time. My brother has less wfh options but still took days off to help and coordinated getting a paid caregiver to step in.
The plan is now that the caregiver comes in from 7-7 during the weekdays and we switch off sleeping there at night just to make sure my dad doesn’t get any ideas to help while he’s also recovering. This plan is fine but now I have to spend 5 nights a week for the foreseeable future. That means I can keep my job but I have to give up pretty much everything else. I was an actor after my day job was over and now that I have no nights available, I’m going to be very behind on the career I actually care about. But that’s just me complaining!
While my parents have zero savings to pay for their care, the community has pulled through on donations so a professional home carer is more of a long-term possibility.
Life will keep coming.. the criseses will keep coming..
Meet each new crises with new respect, greet it, accept it, then re-arrange the care plan to deal with it.
You have already come so far!
You & your brother being a TEAM is a wonderful framework to build on. Accepting the community help is adding to your framework (so many struggle with accepting this non-family help). Keep adding as you need.
Keeping them in their home *as long as possible* is a good aim. When the time of *not possible* arrives, greet it, accept it, then re-arrange the care plan to deal with it yet again.
Next, breathe, sleep, eat. Continue your life but make time, at least a few minutes a day, to call and say you love her. Tell her about the good things in your life - a funny moment at work, a new friend, a good experience with an old friend - these things will make her happy. Remind her of the good times in your childhood, especially those that involved family. Did you make cookies together? Did she do arts and crafts with you? Were there memorable family vacations? You will both benefit from this. Fond memories shared is the best way to make her feel loved. Weekly hugs are important too.
Don't spend money you don't have, but cooking her favorite meal if you are so inclined would be special. Monthly "dinner parties" are something to plan together and look forward to. Making a picture album is great - she can look through old and new photos of family every day and relive good times.
Think of all the ways you and your brother can show your love without being on call as caregivers. The most meaningful way, ultimately, will be to move forward and have good lives yourselves.
Ways to show love are numerous.
If you're switching off with your brother, why are you doing 5 nights/week? What happens during the weekend days?
What kind of community is this that is covering the costs for a caregiver for 60 hours/week?
Could you bring Mom to stay with you? Not permanently, but to spend some quality time, without your Dad?
Stop paying your parents' rent and bills. It's time for you and your brother to force your parents (especially your father) to grow up and start being an adult. If they are so poor, your mom is on Medicaid. She may have to go into managed care. It's not ideal, but it's better than nothing.
You cannot bail your parents out anymore. Don't quit your job and your source of support to go down with a sinking ship.
Either your father will get it together or your mother will have to go into managed care.
https://www.medicaid.gov/medicaid/eligibility/index.html
Try to get them placed near to you so that you can visit and keep an eye on their care......................"trust, but verify."