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.
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
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
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.
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.
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.
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.
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.
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.