Follow
Share

I am sitting here crying as I write this. My mom is 79 with mild to moderate dementia. My brother who lives with her is the primary caregiver. My other brother stays Tuesday and Wednesday nights and either my sister or I are over everyday to help.
I suffer from bipolar disorder and during June and July was so depressed (over my sons death three years ago) that when I did come over I wasn't much help. Have changed medications and am feeling much better. I am now over to help most every day except Saturday - when my sister can't do Saturdays I try to.
I know I can only imagine how hard it is to be there all the time and try to let my brother know that.
He has bipolar (unmedicated) also... I have tried to help him with resources to educate himself about dementia ( this site and others) he apparently (according to my sister) thinks that I am all of a sudden being a know it all.
By telling him that moms behaviors are normal.
Today he BLEW up at me. Saying he is now just going to be a warm body who will call 911 when she falls. He truly believes that he can "train" mom to take care of herself before she takes care of her dogs--by withholding her dogs from her until she takes her meds and eats. I guess this is okay but it is his belief that she can be trained and that a lot of her behavior is an "act" that concerns me.
Her dogs are the focus of her life, not her own safety.
Can someone with dementia be "trained" like you would with a child?
It is of no use to try to talk to my brother when he blows up -so I just listen and try to have empathy.
I left with my Mom today as I was afraid to leave her there with him. My sister will pick her up after work and take her back.
My brothers work is on and off and when he isn't working I think it is harder for him to deal with moms behaviors.
How can I communicate that I can only try to understand his frustration as I am not there 24/7 and at the same time get him to educate himself about dementia.
I feel like I am being punished for being more involved now and my input is discounted since I was so depressed I wasn't around much or when I was I wasn't much help.
I want to suggest a family meeting but am afraid it will decompensate into a screaming match. He does his screaming at me in front of mom and it confuses her. She isn't sure what she has done wrong.
Do you think it is fair that ONLY the primary caregiver has any say in what happens with the dogs and with this belief that mom can be trained?
I have decided that until things calm down I will go get mom and take her to my house during the day - she doesn't need to be subjected to any more yelling.
Any advice is appreciated.
My brother is determined that mom not go to a nursing or assisted living home as he wants to "keep the house in the family" but I don't think we can continue especially with this belief that mom can be trained.
Help please! Jenn.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Jenny I feel for you but I agree that your brother is not the right person to look after your mum. My brother suffers from depression and cant show emotions he runs away he is all I have family wise close by but have discussed with other siblings and they agree that hes just not the caring kind although he loves mum he just wouldnt cope so it all falls on me which is very unfair but what can I do? I think although this is difficult for you, you still have siblings that can help and thats great surely between all of you sharing your mum can still get best of care? I wish you luck.
Helpful Answer (1)
Report

JennyMae,
So very sorry to hear what you're going through with your mom, as my mom passed away this July from complications with other health issues, that included dementia as well. Perhaps it's a good thing that your brother is getting a place of his own at this time (if it's true, if not there are agencies that can help him out), because it does sound like to me he was getting burn out as well, and your mom has enough that she's facing right now when it comes to her 'memory' (my mom also repeated things over and over again, and could not remember what she ate or did at certain periods in time. In the beginning stages she put two 'plastic bowls' on top of our stove and lit them to 'heat up her food', it scared me a lot but those where tip offs to what was coming, but thank the Lord she's now at rest and peace) and other issues too.
I earnestly hope that your brother will take this time to inventory his life, and get back on his meds especially if they were helping him in any way, shape or form. Might I ask if you've thought about either in or out of home 'hospice care' for your mom as she moves forward with her memory issues? I had to remove my mom from the rehab nursing facility she was going to because the 'care' had gotten much 'worse' over time, so I brought her home so that she could 'leave' from here instead. Please try not to feel guilty about you're not being there for her in the 'past', we ALL have our issues and you were able to get the help that you needed for yours and that's what's important and you've more than made up for it now.
Continue to do what you can, when you can, while the Lord gives you the strength to do so and let that be of comfort to you. Even in her mindset, your mom loves and cares about you more than you might realize (and I got to see and hear that for myself with my mom too). Blessings to you and yours JennyMae, you're in our prayers.
Helpful Answer (1)
Report

I don't know if your siblings would agree to this (mine certainly did not) but I think family counseling sessions for the three of you might really help. Moreover, some Alzheimer's Disease Research Centers have social workers who do family counseling. The benefit of that is that these social workers know a lot about dementia. Good luck!
Helpful Answer (1)
Report

Hi Jenny. Here's my opinion for what its worth. I wouldn't move your poor Mom right now. With all the confusion and chaos, it will just make her that much worse. Her home and her dogs are her safety net. Your brother is understandably going through (and has been through...as her main 24/7 caretaker) a rough time of it. Being sleep-deprived makes a person agitated even if everything else is going ok. Being sleep-deprived w/ a person who has dementia puts the nutso scale at 10 +. I speak from experience. My Mom has awakened me at the wee hours of the morning, thinking it's time to get up....even though it's dark out, and all is quiet, she somehow can't figure this out. She is always apologetic, and goes right back to bed, but my sleep is basically over, as it's always the time for those unwanted thoughts to seep in and keep me wide awake and worried until it's just about time to start all over again. This is what your bro has been going through, no doubt. And having a mental illness doesn't help w/ his patience level. The thing about the dogs is a big thing. My Mom has a cat that she obsesses over. The cat has been quite a problem over the years of her dementia and living w/ us. She used to try to manipulate the cat....move it around to be with her when she wanted it to, etc. Cats are independent and often she would get scratched or bitten. But she would perish if the cat was taken away from her. The cat is her whole life. It gives her a reason to live, because in her state of mind the cat NEEDS her, and she CARES for the cat. Your Mom's dogs are that to her. Everything. And dogs are more companionable than cats. So it's important, in my opinion, to make sure that she can have her dogs back in her home. As long as you and your sister are checking that they're getting fed, and being able to get out when they need to, I think the dogs are very beneficial to your Mom's well being. Moving these dementia people around from place to place is not good. I know that too, from experience. The "sameness" of everything is important to them. It gives them a sense of being safe in familiar surroundings. So, Jenny, my advice to you is to see if you, and your sister, and maybe another caregiver, can all help out to ease the tension and possibly your brother may change his mind and stay, as long as he can start getting a decent night's sleep (which may help his temper and lack of patience) and if he gets enough breaks from the constant wear and tear of being THE caretaker. I have that constant wear and tear. No help from any of my siblings who live elsewhere. But I don't have an un-treated bipolar disorder. I used to think that my Mom was faking it too. I wish I could talk to your bro. I would swear my Mom was faking it. How could she NOT know that it was nighttime? Why would she think it was time to get up? I would tell her she was being selfish...wanting to wake everyone up just because she was awake. Duh!! It finally sunk in. They are not faking it. It's hard to "get it" but it really helps when one looks at the picture in a new and different way. The person you knew all your life and you respected all those years has changed into a person who is like a helpless confused little child. So sad, but I think your bro will change as time goes on, and he realizes what is really happening to your Mom's mind. I hope if he moves out, he may come back as he gets a little respite from what's going on! Best of luck to you Jenny.
Helpful Answer (1)
Report

You might want to consider an Independent Living situation rather than Assisted Living for her. My mother is living in an Independent Living apartment and pets are allowed. They have an enclosed courtyard where the dogs can run free. There is help with medication. I put her pills in a pill organizer each week and they are locked up. A staff person gets them out and watches her taking them. If your mother is not quite ready for Assisted Living, this is a step below that that retains much more independence for the individual. They provide meals, laundry, room cleaning, local transportation, etc.
Helpful Answer (0)
Report

Jenny, it seems like it is your turn to be the one who has it all together! I guess that's both a blessing and a burden, hope you have more of the blessings side. Seriously, take Jeanne's advice to heart too - you "weren't there" not because you wouldn't but because you couldn't. I also have some good friends and know many caregiver parents of my patients with bipolar and other mental illnesses, and it is all true - treated, life can be good, untreated life can be a mess! Probably that's true of ANY disease to some degree though! Hang in, you are seeing things as they are and taking care in the most loving way possible, and its no cake walk.... You have my admiration, and thoughts and prayers, and if there is any support we can give you in this forum, it will be a blessing to us.
Helpful Answer (3)
Report

Just my opinion, of course...
Helpful Answer (0)
Report

Sounds like your poor mom is living in the middle of a time bomb. Your brother is moving, you say? Somehow, I doubt it. All I know is my red flags are flying.. I wouldn't leave your mom with your brother another minute. He sounds like a control freak playing head games and trying to manipulate your mom. Not good signs. And screaming, too? If I met and started dating your brother, and he exhibited the any of the signs you're describing, I'd run for the hills.

Talking to this guy obviously isn't cutting it. He's not listening. Get your mom away from him, asap. Even if it means a third party, or a facility.

There are some lines you just don't ever cross when you're dealing with the weak and the helpless. Your brother has crossed the line. I would consider what he's doing boarding on abusive. And if you're waiting for him to appreciate or thank you for all the help you're trying to give, you'll be waiting a while. Make other arrangements, at night, too, and use her assets to do it. Like yesterday.
Helpful Answer (2)
Report

Jenny, I was going to suggest that you bring your mom and her dogs to stay with you for a few days, to give your brother a break. But it sounds like other things may be happening.

Is there a way you could get someone in there early for her breakfast and meds, so that your brother wouldn't have to deal with that? That seems to be the big sticking point, from what you said. Maybe if a third party could take over those duties, your brother could relax a bit and not be so stressed. It's also too bad if he's not taking medication for his bipolar disorder. I'm sure that makes it more difficult for him to cope and for you to deal with him. I hope you can figure it all out, you've definitely got a challenge on your hands.
Helpful Answer (1)
Report

Well the day just keeps getting better and better. I tried to talk to my brother and say I am sorry that I didn't acknowledge his frustration and burnout before trying to educate him or get him interested in educating himself.He asked me not to talk to him any longer. I mean honestly if you had a child with autism or other brain disorder wouldn't you want to know all you could and what strategies might help?
Anyway he told Mom - not this siblings - that he will be moving. Although he has no where to go and has been receiving free room and board, gas, cell phone, computer use etc...
We are now in the process of deciding how long mom can spend alone and how much in home care we will need assistance with. I guess this is one way to spend down her assets.
I appreciate this forum so much... it can feel like you are all alone out here. Thanks for listening.. Jenn.
Helpful Answer (1)
Report

Time to go pick up Mom for another day at my house with the dogs
Helpful Answer (0)
Report

My heart goes out to you, JennyMae. I don't have a magic answer for you, but you do have my sincere compassion.

Many, many people do not understand the nature of mental illness. This ignorance is common but I am very sorry it occurs in your family.

When you "weren't around much" to help earlier, that was not because you were lazy or thoughtless or mean. It was because you were ill. When your mother says she took her pill when she didn't, that isn't because she is a liar, it is because she is ill. Illness, whether bipolar disorder or dementia or cancer, is NOT a character flaw. You understand that, but apparently your brother and sister do not. As I said, my heart goes out to you.

You were unable to help them earlier. It is wonderful that your disease is sufficiently under control now that you can. Your bother and sister should be thrilled for you and for the help that you can now give them. I am sorry that their ignorance prevents this.

As you know better than most, when the bipolar condition is well-controlled, the person can be highly functional, and perhaps unusually creative artistically, and in problem-solving approaches. When the disease is not well-controlled, the person may not be a suitable caregiver for another person (and may even have difficulty with self-care.)

I am afraid that it sounds like your brother is not a suitable caregiver for your mother at this time. He needs to manage his own impairments and also to learn something about the disease your mother has. I think there needs to be another caregiver in the house, or that your mother should be cared for elsewhere.

How can this come about? Alas, that is the part I don't know! Perhaps it would help to contact the local or regional Alzheimer's Association, or that of another dementia if she has a different diagnosis. You certainly need an objective third party to step in and help organize your mother's care.
Helpful Answer (5)
Report

Well it just got worse. Brother exploded at my sister who exploded at me. Years of old resentments...So now I have my moms dogs at my house and will take them with me each night.
I still think mom will get up looking for them and wake my brother up - so not sure how that will work.
Until he finds work I will just go get my mom everyday and my sister will pick her up and I will keep the dogs at night.
A part of me is pissed because I think if there were more understanding there would be less frustration and less taking things personally.
My mom keeps promising she wont' wake him up but in the middle of the night she doesn't remember her promise. She tells us she takes her medication and eats breakfast by herself... they call it lies. I don't think she remembers. She does argue with my brother about the pills and breakfast - I am sure that is frustrating to no end but.... what to do. to argue back is useless.
I feel like it is a catch 22 for me. I wasn't engaged or there for mom or my sister when my dad was sick...I was no help at all and she understandably has resentment for that. But I am here now and on new meds and trying to help and stay patient with my mom and with my brother and sister too.
Mom is with it enough to know she doesn't want assisted living... maybe it is time to use some of moms assets to bring in a caregiver at night so my brother can sleep and then I will be there or have her during the day.
The whole situation seems out of control and I firmly believe it doesn't have to be.
The whole time I am with my mom and she has asked me for the 30th time "has you sister forgotten to pick me up" I pray -- I can do all things thru God who strengthens me. -- and I just answer no, she hasn't forgotten you.
Off to another night of no sleep worrying about this. Thank you and if you have any words of wisdom I'd appreciate it. Jenn.
Helpful Answer (1)
Report

Mom doesn't want to go to assisted living - she wants to be in her house with her dogs. They give her joy.
I know I can try to be more understanding of my brothers situation and will do so... but how to convince him that you can't "train" someone with dementia if he won't educate himself.
I will look into how to find a neutral party. Maybe her Dr. (who is also my brothers Dr.) can help.
I do think it is best for her to stay in the house due to her dogs and her two best friends being on the same street. She walks and visits with them most days. We just need to figure out how to help my brother before he blows up and becomes punitive. All of her behaviors and actions seem so normal for dementia to me and I KNOW that does not make them easy to live with. But I just can't help but feel that understanding and not taking them personally will help.
Thanks for the advice so far... keep it coming
Helpful Answer (1)
Report

sounds like your brothers gone mad with no power. id like to , as a guy myself, give him the benefit of doubt but i cant do it. you dont control or coerce a dementia patient. you walk beside them and guide them with love and understanding as much as possible.
Helpful Answer (7)
Report

Dementia patients cannot be trained and punishment would not work well if she was mentally up to par. Your brother is really burned out and you may be as well. Look into assisted living for her, she will have professional care and the company of many contemporaries.
Helpful Answer (3)
Report

Hi Jenn,
I have news for your brother Mom can't be trained. But that being said your brother is mentally ill and being bipolar rules his life.
Your idea of taking mom to your house during the day is a good one and having her away from your brother for a time may be helpful. I am concerned about the idea of Mom going to AL or NL. What would happen to the dogs then? Your mom is more dependent on the dogs than the people in her life at present. Their needs are simple and don't confuse her. If they are taken away she will probably decline much faster. Has your brother lived continually with your mother for over two years. If so Medicare/Medicaid won't take the house. This came up in another post and I can't remember the details.
I think you need to calm down and think this through carefully so you can see what is best for Mom from all angles. Give it time and things will fall into place. Good luck
Helpful Answer (3)
Report

Ideally, get a neutral party - a professional such as a geriatric social worker - to be a referee for your family meeting. Brother is determined to do something that maybe can or maybe can't be done at all, and seems inhumane to you. A lot of factors go into that, such as the severity of Mom's dementia and her degree of distress and other questions that come to mind. Does brother yell at her when you are not there? Since brother is off his meds, is he getting into a hypomanic or manic phase where he thinks he can control things that he can't? Does he think Mom fails to take care of herself because she doesn't care to, or does he understand that she may not remember or perceive what her needs are, even if he can't admit that to you or say it out loud? Does she need cues, that brother won't give because he does not think she "should" need them, rather than behavior modification, or is it possible that the dogs are a distraction and maybe she will tend to herself better if they are out of sight for a little bit? He may not be punishing you so much as just losing his own grip...this is hard and if the answer was simple you would have figured it out, but I think it is a complicated and unique situation. Primary caregivers should in fact have the primary say, but if something really is wrong with the care, changes need to be made.
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.