I need help - I'm so burned out, torn, and confused that I can't even make a decision. I've been caring for my dad post-stroke for 7 months. I have 2 brothers - one who doesn't give a crap about dad, the other is a controlling bully who wants the best for my dad and doesn't care if it is at my expense. This brother and I are trying to plan for dad's future.
I have been across the country, away from my home, husband, and job (I'm on disability post surgery) for most of these 7 months. I went home 3 times for a total of 16 days. My husband is emotionally abusive at times, and a great guy about to turn into an abusive guy all the other times. We were not on the best terms before all this happened, but we had a stable life together. My husband has never been supportive when it comes to situations where his needs are being neglected, so he has been enraged from day 1 of me flying to be with dad. Right now he is packing up my stuff, changing the locks, letting my exotic reptile collection die off, and telling me he's parking my car in a parking lot to get it towed. I am trapped here with the virus lockdown-nothing I can do-seeking a lawyer.
My dad has financial resources, so when he was released from the hospital in December, we put him in the best skilled nursing facility we could find. Dad is a 200# man, now with hemiplegia - I witnessed the caregivers almost drop him several times. CNAs by law here can't lift more than 35 lbs so no one wanted to try to get him up - PT/OT was a joke. Dad had dysphagia/a feeding tube, but the staff often almost accidentally fed him. The facility decided it was unsafe to transfer/shower dad, so he got only bed baths for a month before we decided he was going to die if we kept him in a facility. We flew him to a stroke rehab hospital and kept him there for 8 weeks. Now he is stronger and I am able to transfer him, toilet him, groom him, dress him, change diapers, etc, all by myself.
We hired 24 hour care when we returned from the stroke rehab hospital to dad's home 2 months ago. We realized we had the same problem as at the care facility - someone was going to drop / otherwise neglect him. Dad needs to live with a family member to watch over/assist his caregivers to prevent physical/financial harm coming to him.
The biggest problem with this is Dad moved away from all of us when he and mom divorced and he refuses to live near any of us now. So he wants to stay here - which means either a nursing home or 24/7 care with a family member supervising.
My brother is pressuring me to be the family member who gives up life (1 year, 2, 5 10?) to stay with dad. I have health issues and I am pretty shaky right now. If I keep doing this I am going to ruin my body. With the coronavirus outbreak, we discontinued the caregivers two months ago and I'm doing it all myself.
My brother is running the business and he stands to make a lot of money if I am the caregiver and he doesn't have to be. We have an aunt who may be willing to be a paid caregiver for dad, but we aren't sure we trust her judgment. My brother guilts me saying that if I stay here to care for dad I'll be financially set. But I want my job and life back. I am required to be back at work in two months or I'll lose my job. I've lost my marriage. I am 50 - how will I recover my life if I stay here?
My brother wants a house for us all to live in - and me to do all the work. I'm tired. I don't know how to even make a decision. I feel alone, anxious, trapped, and used. If I go home and leave dad in my aunt's care, I would feel guilty for leaving dad and I'd worry she can't care for him as well as I do. If I go home my support system is a lot less now that my husband is doing god knows what, I haven't talked to friends for months and I have to find a new place to live. I don't want to start a new life here, especially one that limits my living. Please tell me how you've coped with situations like this and made decisions. I need advice and hope.
How are you going?
As far as your home, your husband locking you out? Your name on house? If so, he’s not allowed to do that. Call police to have access to your home. Call lawyer to get him kicked out! Don’t allow so many people to abuse you at same time! Most of all, treat yourself well. So once you get your father in SNF again, then deal with husband & protect your rights. Nobody right now is looking out for you & your well being including your siblings! That’s why you have to look out for yourself!!! No one else will. Being a f/t caregiver to Dad will suck the life out of you. DON’T DO IT!!!
please take my advice & let us know how you are doing. Lots of hugs 🤗
If you go to take care of your father, since the resources are there, and your siblings are not giving up income, you need to view this as your job and have a contract to be a paid caregiver.
This will be emotionally rewarding and you may find your connect on a deeper level with your father as an adult, but it will also be frustrating and hard work.
Should you choose not to care for your father, you can work with your brother on the best alternatives, and try not to feel too guilty. It is hard. However, all of the burden does not and should not fall on you. Your brothers' lives are not more valuable than yours.
Since your one brother sounds useless, the two of you are carrying on. What would the remaining brother do if you weren't around as an option?
You sound like a kind and caring person, and this is not your fault, but your post does read like all that others are doing to you, and you have agency. Growing up around at least one male who controls, you probably acquiesce and people please. This is a good opportunity to be more assertive about what it is that you want. Good luck!
You received excellent advice from the members here.
I just want to enforce the idea that YOU need to come first, yes, you DESERVE that! If you don't take care of yourself first then you will be useless to everyone else especially your Dad.
Short story: I was very much in love with my 2nd husband and we had a good marriage until I became sick with chronic lyme disease. The man I thought I loved became a different man: he would criticize me, emotionally abuse me, start arguments, etc. All because I was not healthy and was not the same woman he married because I was bedridden from lyme disease.
The dinners I used to cook for him stopped, the cleaning stopped, everything I used to do for him stopped because I was no longer capable due to being ill.
He didn't support me nor show me any compassion. Yet when he was sick with Crohns's disease I took care of him, drove him to different doctors, etc.
The stress of living with this abusive man became too much for me and as sick as I was I asked him to leave which he finally did.
I felt like a ton of bricks lifted off of me when he left. My stress levels went down from 100 to 1. Later on I divorced my husband.
Please seek therapy and divorce your husband. You don't need this stress and to be treated like this. You are worth more and DESERVE to have a loving, caring, supportive man in your life. You are young (even if you don't feel it or think it).
Once you take that first step in taking care of yourself then you can make "clear" decisions regarding your Dad.
Stress is a killer. Don't let it kill you. Find peace within yourself even if it takes a good therapist to help you find that road.
Sending you many hugs,
Jenna
If you had him nearer to your life you could cope better. You have some serious personal issues of your own to sort out (your husband or hopefully exhusband for one) which you need to be home for. Your dad will need to move to a facility nearer you to enable you to visit regularly. Wishing you the best of luck x
nursing homes are an option, and a choice and an elder care lawyer will help you determine that... like they did in my case. They give you options on what needs to be done... not what the family thinks should be done... it’s to protect them and you from being emotionally and financially drained.
it sounds like you have a lot of abusive people in your life.. and one thing abusive people hate is the victim changing the status quo. Don’t expect reasonableness if unreasonableness has been their poison on choice. You can’t change them, but you can change direction.
kerp your job...it will keep a pattern of familiarity in your life. Keep your location and friends... you’ll need that support until you feel like you’re a stronger you. And put yourself on the list of things to be cared for... because if you can’t value yourself, any change will be hard.
be a new you... for you
The financial advise from your brother...forget it. Get focused on your needs and your life needs.
Forget about the aunt. That will become your new headache and sourse of stress.
A facility is not something new. He will go when you can give him a picture of you and how it is breaking you down and you need relief. He has had in his mind for a long time "I am getting tword the end of my life journey. I am not going to get into what else you are doing to yourself. Let him go to a place that is near you can visit on a weekend. He does not want to lose you
Hugs 🤗
The way we handle things about my 95 yo mother in my family: My brother calls Mom about once per year. He also shows up at the birthday party and the Christmas party we give every year. That is it. We no longer consult him about anything regarding Mom. My sisters and I agree that Mom will stay in her own home and we will care for her there for the time being but we all know that none of us can let her move in with us when Mom can no longer stay in her own home. She will go into residential care. We cope with this by living today and not getting into the future much. We don't know how things will turn out or if she will ever need residential care, so we do not borrow trouble from a future that might not happen. Once in a while we review with each other and with Mom her criteria for staying in her home: she must be able to get into and out of bed by herself, dress herself, feed herself and take care of her own hygiene. She also must be able to get herself into our cars when we take her for outings and appointments. She works hard at keeping her abilities to do these things, though her body is wearing out. We will not change our minds about these criteria because each of us has medical problems of our own and lifting or supporting Mom, or even giving her an arm is out of the question. She has a lightweight transport chair that we can manage, but she must be able to get in and out of it herself as we have balance issues, bad backs, artificial knees, and a host of other issues. The grandchildren are too busy to assist, they work, so we retired sisters are doing what we can for as long as we can. When it is too much for any one of us, she can drop out and the others will understand. Nobody spends more than 2 days per week with Mom. That is enough. We love Mom and we do get some lovely insights into her past by spending this time with her, but we also know that none of us could do this alone. We are glad there are 4 of us.
I hope you can work out something that will be good for you. If your brother doesn't speak to you for a while, don't worry about it. Our brother didn't have much to do with us for a couple of years, but we are all on friendly terms now. Each of us is doing what we are willing and able to do and nobody dares to suggest that anyone should do more than they are willing to do.
My heart goes out to you and your family during this difficult time. Now to the real talk, you need to take care of yourself. You can't effective take care of someone else while breaking down your physical, mental and emotional self. This kind of sacrifice will leave you needing to have care. First take a step back, go within and and figure out what you want for yourself. Your being challenged from many angles, husband, brother, family and personal guilt. There are more than enough people available to take care of your father right now. Take some time and get your life back on track (I'd leave the angry non-supportive husband) put some positive things back in your life. Maybe, you can try to let go of the reigns long enough to make positive and clear plans for your life.
Take care and I hope things get better for you and your family.
One big hint to start: YOU ARE IN CONTROL, SURPRISE!!! Because of my own inability to be more STERN with my father, he was able to leave and wreck my life financially. YOU CANNOT FALL HOSTAGE TO OLD RELATIONSHIP DYNAMICS THAT NO LONGER SERVE YOU!!! Its YOUR HEALTH that is on the line!!!!(I also had over 4 medical procedures leading up to my crisis, including a HYSTORECTOMY while my male parent was giving the landlord notice that we were MOVING! YES, while Im HOSPITALIZED!!! So you see here, NOBODY GIVES A SHIT ABOUT YOU AND YOUR ISSUES, as you do all the (literally in your case) heavy lifting!
This caregiver shit AINT NO JOKE, and you MUST make decisions IN YOUR BEST INTEREST, even when it DOESNT WORK FOR EVERYONE ELSE!!! And that husband? Yeah, SCREW HIM TOO! Selfish little c@&! You should’ve dropped his ass off somewhere a LONG TIME AGO! He sounds like a NARCISSIST which you HARDLY need in your life! Let his ass go, but focus on going and moving out! Solve THAT problem. You need a SUPPORTIVE HUSBAND like mine!! We flew him back and forth from east to west coast, in between HIS obligations so he could be with me to support me emotionally and help me with the work load. No room for a non supportive spouse. Nowhere. Not even when you get back home, sorry to drop that reality on you. He doesn’t sound worth a fight to treat you like this while in a personal crisis! How unloving!
You must think long and hard about HOW you want to restructure things, and then PUT EVERYONE ON NOTICE OF HOW ITS GONNA BE MOVING FORWARD!!!! Your life matters too god dam it( actually a PRAYER asking God to ‘DAM UP’ what is hindering you!) So find your big girl panties and pull those jokers up, and get ready for the tsunami of objections to you reclaiming the reigns to your own life; because it WILL UPSET PEOPLE when you STOP playing the part THEY want you to play that no longer SERVES YOU! There will be blowback, but STAND FIRM, because your life, health and mental state are all UNDER SIEGE and they BOTH had better RESPECT IT OR YOU CAN PACK A BAG AND BE GONE ON THE FIRST FLIGHT TO FOCUS ON YOU AND YOUR OWN LIFE, NO PROBLEM!
Your Dad ran HIS OWN HEALTH INTO THE GROUND, and now he is NO LONGER IN CONTROL OF HIS OWN CARE!!! PERIOD! The infirmed elderly folks desires and personal agenda can NO LONGER RUN THE SHOW! And to ADD insult to YOUR INJURY, I bet the man doesn’t even HAVE A CARE PLAN where he PLANNED AHEAD FOR HIS OWN UNTIMELY HEALTH CRISIS, did he?
So you see, you are letting EVERYONE OFF THE HOOK but yourself! And taking on everyone else’s issues and giving them MORE VALUE THAN YOUR OWN!! And that my fellow caregiver MUST STOP! For your own SURVIVAL! Dad gotta go where YOU SAY NOW, if he wants care from someone who gives a dam - tough cookies. You didnt plan, now I HAVE TO, WITHOT NOTICE OR WARNING. He will go where life is BETTER for YOU or the deal is OFF! You gotta go HARDCORE with people or THEY WILL KILL YOU WITHOUT A CARE IN THE WORLD. And no disrespect, but if you are white, they're men, and your people are the historical barbarians and tend to be cold and unkind in how you treat one another in general, so dont look for any REAL compassion from them. (Blacks operating like this are assimilated into this heathen behavior and go against their own godly nature - just TRUE, hard facts) We CANNOT KEEP LYING TO ONE ANOTHER, regurgitating the LIES of a wrong history. Truth prevails with me, and I wish not to offend, but you need TRUTH, REAL insight & help.
Follow @CaregiversInCrisis on Facebook, Twitter & Instagram if more crisis support needed!
* Learn ways to meditate, relax (less stress which is potentially serious)
* Get a good elder estate attorney if you don't already have one.
* Take care of yourself.
* Ask yourself what you are ready and willing to do to turn this around. This is your life.
You need to set limits with your father. He is fortunate to have caring children who want the best for him. I would explain to him, home with caregivers, and assistance from family, or a facility, plain and simple You need to have a plan in place. I would hire a caregiver, aunt and family to help, brother needs to pitch in, it easy for family members to dictate what to do, but do not lift a finger in the process. Maybe one person does the night shift, the other day shift. Have a family meeting and be calm and productive. Have not read all the posts from others, but you will get some great advice on this forum. Hope your dad continues to heal and everything settles down for all of you.
You've received lots of good suggestions here about possible action steps. I'd just like to suggest that you take a little time to nurture yourself. Perhaps take a deep breath and reflect on what an amazing person you are - I see an intelligent, resilient woman who is compassionate, thoughtful and generous.
As for how to set boundaries? Start with becoming clear on what your priorities are. Figure out what you need, not what others want. Do this by journaling, making lists, visualizing, whatever method you choose. Without being clear on your priorities, it's difficult to set good boundaries. You are then more likely to give in to what others want.
Being a family caregiver can be overwhelming, even when things are not complicated, as in your situation. It sounds like you've become isolated from emotional support and that's not good. Time to reach out to a few friends, if only to hear a friendly voice, to talk to someone who cares about you and doesn't want anything from you.
Wishing you all the best.