Needing advice on caring for someone with a TBI

I care for my fiancé’s 51 year old aunt who got a TBI 27 years ago. Her angel of a mother quit her job to care for her but she was hospitalized in January and passed away last week. Our hearts are all broken. I decided in January that since I can work from home, I should care for her. It’s the right thing to do. She lost her mom and I refuse to let her life get even more flipped upside down. It’s been a struggle because she’s very manipulative and sneaky, she does things just to make me mad but I have her family support and help. We now have to take over 100% of the bills for her and the house, which is fine and doable, but I’m trying to save money by buying store brand items instead of name brand. For example, she’s obsessed with disinfectant wipes, she’ll disinfect everything in the house, but I bought store brand instead of Lysol and she threw a fit. She only gets to do laundry once a week instead of washing 3 things daily, we only run the dishwasher when it’s full, not every night. So far I’ve saved $200 on my pge bill with just small things like that but she hates me for it. Her mom was spending $2000 a month on groceries and I can’t afford that so I’m spending half that by buying store brand stuff when I know it’s the same quality as name brand. She’s passed because she wants name brand. We ask her to use her walker, not touch the stove or knives, stay inside when it rains and not touch things that aren’t hers. She won’t listen and it’s frustrating because if she gets hurt I’ll get in trouble with ihss. She hates me for it. I couldn’t find something I ordered for her because it got misplaced and she told me I’m a horrible person and her worst enemy. I know I struggle with keeping a calm voice sometimes but I’m trying so hard. She deserves to live with family if we have the option but how do people do this? She’s so much angrier after losing her mom which I understand but we are all hurting. She’s currently yelling at me because I won’t give her the phone while I type this and take a breather away from her. I said give me a minute and she’s demanding that I do it now because she wants to call her dad. Totally fine but I have to now monitor her calls (per MIL) because she lies and calls a lady who MIL has said she isn’t allowed to call. Please tell me someone here has figured out the key to staying sane.

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Help a mama out and respond anonymously on our forum. Needing advice on caring for someone with a TBI

Block the number she tries to call so then you know she can’t call it.
Get the family around more to help out.

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So she don’t have any income herself? You need to have other family come and help just so she isn’t always angry with you

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So she’s got a TBI and that could be causing a lot of this but why isn’t she allowed to call said person … sounds like you need to go out and take a break

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She could take a trial run w the state and see how and what she would get

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See if she would qualify for respite care. An hour or two a day to have some come help to give you a break. Many states offer it. Your department of health should be able to assist.

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Adult daycare for part of the day. Gets her out of the house around people her age, and gives you a break.

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Turn her over to a heath facility. Or the State. They will wash clothes and cook for her. She sounds spoiled

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First off, you need to do things the legal way, be appointed her guardians, which you may not be able to do since your not yet married, but he can, then apply for her disability, she should get it immediately. That will help with expenses, and you can give her money to spend in increments. Best of luck to you, saying a prayer for a positive resolution.

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Sounds like you are switching her normal routine up after a devastating loss. That’s a lot to deal with for her. She won’t process things as quickly. You also sound frustrated as a caregiver and that’s dangerous. I would advise you to find another place for her to alternate visits too. Either a facility or even a family member. It’s really unfair to her along with her loss her normal routine is being shifted so drastically. I’m sure she gets disability of some kind which would cover her expenses.

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Put store brand in name brand boxes

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So since she had a TBI she should be able to get social security. Also, look into caretaker hours that can get paid to you.
TBIs can be a challenge that’s for sure. It takes awhile for people with a TBI to accept and adapt to changes. Just keep sticking to your ways as she is in your home.
Maybe try some reward programs for her not yelling each day, etc…. I worked on a TBI unit for over 9years n the reward programs really did help a lot.
Lastly, breathe. You are doing a great thing for her. Take it one day at a time. Make sure to have some time to yourself as well.

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Check her health insurance to see if they will pay you to take care of her…and ask for agency to pay your wages…

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It might be time for some professional help or an adult daycare. It is beautiful you have taken this on but it’s too much for anyone.

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maybe buy the name brand stuff and save the containers and then buy the knock off brands and put them in the name brand containers. my daughter won’t eat pudding if I make it from the box cuz it’s made in a bowl and put in the fridge…BUT I can save her pudding cup containers and put the pudding from the bowl into her containers and then she eats it

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You’re changing things a lot for her and she may be overwhelmed by the rapid turn of events. Can you come up with some compromises? Laundry 2times a week? Her favorite brand of bread? Does she have her own phone? You are brave/loving/caring to step in and care for her

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Many insurance companies will pay for home health aids to come to your home to help out. And if your insurance doesn’t cover it call your local department or social services and they will be able to get funds in other ways to assist you. It may even covered by Medicare/Medicaid of she is eligible. I know because I used to provide in home services for handicapped or disabled adults and children. It was very rewarding & I met so many great care providers & families like yours. :heart:

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They have adult day programs specifically for TBI patients. She’d probably be pissed that she had to go but might be worth a shot to look into. Where I live they go from 830-230 M-F and a lot even qualify for the transportation. I assume she gets some kind of disability money, which could pay for it.

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For the issue with name brand that she insists on having…find coupons for them, buy them at stores where they are cheaper…or buy once name brand items. Then once its time to buy more . Buy store brand and put it in the name brand container…

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I think it is too many changes at once. Buy her Lysol wipes. But cut back on other things. And maybe a couple of other things that satisfy her. And then back them off 1 at a time over time. Rather than all at once. You are an Angel and I have taken care of my Mom with dementia so I know how hard it can be. Also give your self breaks away from her when and if someone else will give you an hour or so away.

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Why are you paying 100% of bills and housing? Does she not get any SSI or disability?

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Some off band stuff sucks

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Speak with her case worker. She needs a daycare, therapy or she needs a place that is trained for her behavior. Depending on her TBI exactly, some of that she may not be able to help. My husband has a TBI and it’s not a cakewalk.
However, it’s not an excuse for it either.

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Don’t continue to do this. It’s not for you.

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First of all you need to recognize, which I’m sure you do, that this type of job is very difficult and not everyone is cut out to do it no matter how much you care and try it just doesn’t work. It doesn’t make a person bad when they find out it is just too physically and mentally hard. Secondly, if the person you are trying to take care of doesn’t connect with you on a personal level so you can bond somewhat with them it will only make you miserable and them meaner and harder to handle which doesn’t help their mental abilities to cope at all. If it’s the wrong match between the disabled and caregiver it’s bad for both people. There are facilities out there for her and/or day cares or home health companies to help. Don’t beat yourself up trying to do this if she doesn’t like you…she will just become more difficult and don’t force it on her either which will make her harder to handle and further damage her mental state of mind. Maybe even a short stay in a different setting may help her realize you are trying to help but that’s never a guarantee. I’ve been there and sometimes you have to just throw your hands up and let the professionals do it. :woman_shrugging:t3:

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Idk sounds like she needs a place with people who know and are able to deal with her condition. Just because you want to be able to take care of her doesn’t mean you should. It might not be good for either of you. Otherwise contact someone who knows about how to take care of a person with this to help you. But it sounds like you are gonna have to change things to help her.

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Do what I use to do. Buy store brand stuff in name brand containers. It worked for me for years.

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I have TBI. I got it 15 years ago. If you need to talk, PM me

She is not your responsibility , talk to her case manager and put her in a place where specialist can help and take care of her

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God Bless you. When there is illness like this the person who is the main caregiver is often resented. Unfortunately you are the authority figure in this case.
I don’t know how long or how much stress you can take, every one is different, but you do need days off away from her. Who ever fills in needs to follow your rules and not give in to her. She is 51 and probably doesn’t think she needs to be taken care of.
It’s sad but many end up in group homes or get in with people who are con artist or have mental issues or even a bit of both, and they wind up getting stolen from or abused. She might benefit from therapy, but that’s subject to resentment or manipulation. It’s worse than having a UN responsible- willful teenager. I wish I could be more helpful. Talk to her doctors and see if they can help. :pray:

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Try to be patient with her, she doesn’t know she’s being mean maybe u could use some extra help. Maybe you two can find a hobby that u both can do together

Some off the issues can be fixed with a little baby proofing and door alarms cameras on the main doors

Have you tried saving the name brand containers & refilling them with store brand? If she’s cleaning so often maybe even make your own wipes to save money. If she’s not already receiving public assistance look into it for her. In some states you can be paid to take care of her since you’re not related. She also qualifies for social security & other benefits like medicare, home health care, daycare (yes for adults) etc. Call social security or go in & talk to someone. Ask her Dr or therapists if there are any classes they recommend you take to help you handle her.

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Sorry but you can’t stay sane if it is on you 24/7. I am doing all this for my schizophrenic mother. Because the last payee decided she had enough of my mom. And now I am crying just about weekly because of her and calling people with lies. You will either have to get other family members to help. Or you need to get outside help…I know you want to do for family but your mental health matters too.

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You should be able to get help from the state because you are not family, look into that. In Canada, people will come in to help if money is tight depending on what is going on and if it makes problems with your work they will step in. depends on how much money is brought into the home, etc…It can be a long process but very worth it for you in general… Make sure to ask her doctor about it…

Is TBl A form of dementia? If so I am in a group for caregivers that’s called the purple sherpa Basecamp and everything you seem to be saying sounds a lot like dementia so if you want to join it, they have been a big help when my mom was in her disease, she since passed, and if you would like to join them they are a big help you should be able to find it although I can’t remember the full name I know the first part is the purple sherpa Basecamp if you want to DM me I can find out the full name, that’s if you can’t find it?

You are amazing!!! And yes. A person with TBI will be much more difficult to work with, depending on the location of their injury . But also remember they are also grieving since their mom passed away. I know it doesn’t make it easier on you at times. But you being their comfort person, like a child, they will lash out more at them. You are doing a phenomenal job!

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Tell her family you love helping but it is too much. She is going to lie and end up getting hurt and you will be in big trouble. Time to let pros handle her to be honest.

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She needs to be in assisted living, not with you.

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Don’t take on projects you can’t manage. Work with your individual therapist to resolve your control and codependency issues and let that family make their own decisions.

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she may have to be in assisted/full care living where there are boundaries

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Life hack…keep the name brand bottles… and keep refilling with store brand… and just stick to your guns on everything else… work with her social worker … see if a nurse can come in a couple times a week to help you…

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TBI’s are really hard for the care takers because they’re so unpredictable. Best things to do is treat the situation like if you’d have to baby/kid proof the house…locks and alarms, cameras, etc will help a great deal. The truth is, it’s a ton to take on. Not being discouraging, just stating facts. Maybe employ a PT home health aide or housekeeper, to take on some of the extras so you can just breathe. I commend you, it’s a ton to take on.

Tips: Keep the container for the name brand and just refill with the store brand, she’ll never know. Put a lock on the phone so she can not use it without assistance or supervision…you can also block numbers so she can’t call, them I believe. Sit her down and have her help you budget or pay bills so she knows what’s going on and why changes have to be made here and there…just like you would a kid or teenager
Research TBI’s so you’re educated and know what to expect. Set up a regimented schedule, so things don’t get chaotic. In nursing, we were taught to treat the condition like any other disability…be prepared for anything…cuz it can and will happen.

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Bless you,you are an angel. I am praying for you.

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Not trying to be deceitful but couldn’t you just move the store brand into that name brand container ?

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Therapy for both of you to help cope. Also grief counseling for her. Exercise programs for disabled. She might enjoy swimming or yoga or if she’s combative, kickboxing or regular boxing. Whatever she is capable of doing.

Get all the government help you can as people mentioned: disability SSI, respite care, visiting medical professionals, home health aides, food stamps, Medicaid, housing assistance, paying you for caring for her.

Research facilities for her for down the road when it gets to be too much.

Maybe have a shrine to her mom in her room, visit mom’s grave, help her grieve.

Also, taking her to a religious institution for sabbath services and other programs gets her out of the house with caring people who can help. A seniors group, a knitting club, Bible or other study group if she can read, choir if she can sing. The bigger your support network the better.

Bless you for doing this. It’s exhausting, frustrating, overwhelming, and worse, but I pray things settle out and you are able to establish a mutually loving relationship.

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This is exactly why ppl go to home. I don’t think ppl should live with family if only 1 or 2 ppl are giving full time care. That’s how you burn out.

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See if your state or county offers respite care so you and your fiancé can have a break, even if it’s a local staycation. Consider hiring a caregiver a few days each week. If she’s a veteran, check with the VA. Otherwise, you might find someone on Care.com.

Overall, it sounds like you’re doing really well. Her TBI prevents her from processing information accurately and so far you’re staying calm. But everyone needs a break.

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You took on a very demanding job. It’s very hard to deal with some people who’ve had a TBI. You can not take anything she says to heart and try and let it roll off your back. You also need to get away sometimes. Is there anyone who can help you. Maybe come sit with her for awhile so you get a break? Good luck with her. There may come a time when she’ll need to go to an assisted living facility.

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Very sorry for your loss, and you’re a super sweet and giving person obviously, but it sounds like you’re in way over your head. You’re sacrificing your entire life, physically, mentally and financially for someone who you’re not even related to. The aunt needs to be in assisted living or placed with other family. This is not your responsibility!

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If she doesn’t like you she definitely won’t like a nursing home bc they won’t put up w none of that! So I’d tell her to try to be more grateful

My mother who is 80 also has a TBI from being TBoned on July 4th 3 years ago…there is no figuring it out because once you do they change anyway!!! But I will say….prayers for you!! YOU ARE AWESOME!!! May God continue to grant you strength

Where is the family to her at? She either needs to be in assisting living or a nursing home. You still have a job and your well being to consider. It’s not your problem. They should be thanking you for what you have already jump in and help with, but no. You won’t be sane if you keep taking care of her.

Young one - sorry for your loss- as far as your aunt is concern- it’s going to take ALOT of patience- but it sounds like she is just pushing buttons - like a child - to see what she can get away with. As far as - store brand vs name brand - buy the name brand and save the container- next time buy store brand put it in the saved container. When a person has TBI - the change in routine can cause the behavior she is demonstrating. All I can tell you is it will take time, sweetie. You both need time to adjust- she may not warm up to you for a while - her heart is hurting- she may be afraid to get close to you because she doesn’t want to hurt - the problem with this is - she doesn’t even realize it. Just remember to breathe- and no matter how hard it gets - it will pass , young one. I know people will tell you about assistant living but, that’s something only you can decided. In our culture (family) we always take care of our family’s Elders. To hear this is makes my heart warm and I send blessings to you, young one. Your a wonderful lady for stepping up and taking care of her- there is a special place with the Mighty Creator for you , my friend. :sunflower::v:t4::heart:

Out! Into a dementia unit! At least threaten but it sounds like she knows what she is doing and your hubby needs to support you. Out the door is what I say! she is manipulating you. Seen it many times looking after dementia residents. However it is up to your husband and his family what to do with her! don’t take this issue on board because you will be stuck with it, if you have already, just look away and leave it to your Husband and family. No One will do anything as long as you keep cleaning/picking up the shite!

I hate to say it, but I think you need to have her go somewhere. This is too much for anyone. You’re gonna be so burnt out and miserable eventually. But bless you’re heart, though :two_hearts:

Feed her salads and vegemite along with a standard diet. Seeing as she had it some time back her brain will have found ways to cope with the injury and recover as much as she can. If she needs things to do I found playing wow didn’t tire me out. Doing physical things did for quite a while after my MBI. Look each brain injury is different and both injured and carer need to be flexible. I meditate which also helped me cope a lot.

Find someone to stay with her a few times a week for even an hour or two, or when you go shopping. You have to take brakes from that now and then, or it willget too much to deal with. God Bless you.