What is a MPoA? I do consider my siblings input and dialogue about decisions. But as long as my mother is cognitively competant then it is up to her. As noted before, she has told me and my siblings her wishes if she needs to be institutionalized. She has a medical and financial directives. What is difficult now, is navigating my siblings insistance that she do something that my mom has already decided against and I have accepted - like moving into an assisted living facility before doctor's orders. But I have learned to stay out of my siblings relationship with mom when they stay with her unless mom asks me to do something, which has happened. Sometimes, my siblings promise a visit and then cancel. She get's very sad but won't share that withthem. I do and ask them to not tell her their plans until it is final. But they don't and I deal with her down mood and sometimes her anger, which she can take out on me. I have a therapist who is helping me and offered to meet with my siblings if and when they come into town to discuss mom's care and get on the same page. I appreciate all your suggestions, ideas. I suppose what is really hard is handling this on my own, as my siblings left once I moved here eventhough one promised to stay and the other to move closer. I get tired, sad, resentful but appreciate this special time I have with my mom. I just want to do right by her and manage her decline well and family dynamics with my siblings. All her doctors have my name and know I am her medical power of health care agent and daughter, of course.
MPOA is Medical Power of Attorney, Sue. So you can act per her wishes if she can no longer express them. And you are right that while she is cognitively intact, she is the one to make the decisions. The MPOA takes over when she cannot make her wishes known, but knows that YOU understand what they are, and that you will carry them through for her when she cannot.
My mother is 93 years old. She has immaculate degerative disease and is legally blind. She has arthritis in both knees, neck and thumbs. She is in good health but has high blood pressure. She lives independently with friendly neighbors that check in on her and call me if needed. Many of her friends have died and she had to stop driving 3 years ago. She has a chair-lift in her home that she uses and a walker. She used to be a very upbeat, responsive person. But when I go to her home I find her sitting in her chair, wrapped in a blanket with out the lights on. She does not greet me until I am half way in the house and then it is almost a grunt rather than a enthusiastic hello. She is much more limited physcially, losing her balance and will accept my arm when we walk. This is to be expected. What I most have difficulty is with watching my mom decline from an outgoing, responsive, emotionally attentive and invested energized person to a withdrawn, sad, emotionally hidden with almost a defeated attitude. After I leave her spirit has been lifted as is true when she goes out with friends. But due to her decline in physcial abilities, fatigue, loss of friends, giving up driving, and my siblings living far away she is declining more rapidly not cognitively but emotionally. I'm not sure what if anything I can do about this. Watching it leaves me feeling terribly sad, anxious and helpless. I suspect this is the expected way but I wish I could bring more happiness in her life as she declines. She turns 94 on 2/15.
Susan. She is 94. Hon, I am 81 and you are EXHAUSTING ME. Please. Just let us be. We have BEEN THERE. We have DONE THAT. We are still doing just about what we WANT TO DO. No. I take that back. I am walking a Hades lot more than I want to. (Because I think I SHOULD). But hon, we are on the downward spiral. And many of us are OK WITH THAT. I mean, for me. it has come down to "Please, let me go before my beloved 37 years long partner, because honestly I do NOT WANT TO BE HERE WITHOUT HIM. I mean I love sharing political discussions and all that, but I cannot OPERATE the internet without him!!!! Let's get real!
I have discussed all of this with my own daughter. I wish you and your Mom did discuss it all. Because honestly Susan, we are on our way out now. Your mom and me. You have to let us go. You will be fine. We will be gone (but trust me you will hear your loved mom in your head every bad move you make, as I alike shall haunt my own girl).
This is life. This is the cycle. Stop torturing it to death. I lost my mom when she was 96. Honestly I wish I could have SPARED her that last few years.
I understand. Believe me. To the bottom of that soul I think I don't have, I understand you. But Susan, you have to begin to let go. You have to start to let go now. I have a daughter I am sooooo close to (guess what her name is Susan Lee. I know how hard. But you have to let go, and my girl does, as well. This is the progression of it all. And trust me.............. WE WILL BE WITH YOU MORE THAN YOU WANT US THERE. I promise you, that while you draw a breath, we will be there, because at 91 my Francy, my mom, is with me all the time. Bring happiness to her life? Susan, you have to be kidding. You ARE THE HAPPINESS of her life. My daughter has gone from being my kid to being my wise woman. You are her happiness. Never forget that, even when she's yelling at you. Hee!
It is a bit hard for family members who get told “I’M the carer/ POA, I make the decisions, I don’t want your input’. It reminds me of a childhood story with the line “Now I’M the grandest tiger in the jungle’. I wonder whether there could be a tradeoff – “YOU move in and do all the care for 24 hours (or one week) during your visit, THEN we can discuss what you think about the options”. It would at least give the carer a break, as well as making the ‘input’ more informed by reality.
I agree with AlvaDeer, we need to know who is your Mom's MPoA?
Did you Mom create an Advanced Healthcare Directive?
What are the points of contention regarding her care?
If it is because your Mom is declining and she is currently living "independently" then hopefully the PoAs will organize a family meeting with a written agenda and listed goals of the meeting. so that people don't go off point. Don't try to cover too much ground at first... maybe address the most urgent issues (like, if she's declining rapidly this could be a sign of a UTI or other health issue, eg: does she self-administer any medications? If so she may be over- or under-dosing herself due to memory issues, etc).
The family meeting is something me and my husband did when his Mom and step-father first were falling apart at the same time. Three brothers and 2 step brothers, but with a written agenda and stated goals it went well, and was productive.
After that I (being the designated care manager) sent out regular "facts only" emailed updates to them to keep them in the loop so they could never say, "I didn't know _______".
Sometimes we just can't do it all alone. Dementia is particularly hard to deal with, no matter how noble our intentions were going into it.
It becomes important to accept what really is rather than what we want it to be. You were going to care for mom and see her through to the end, and although there might be bumps in the road, you'd tackle them together - right? You, your siblings, and mom. Forever family, forever loved, and no one going it alone.
Well.....ummmm.....
Here you are, and it isn't what you expected. I know. I've been there with both parents. Due to the attacks and actions of one person, our family was torn apart. Rude Aunt, Dad's sister, thought she knew everything and that she was smarter than everyone. Did you know that mashed potatoes could cure cancer? She did. I, the caregiver along with our wonderful hired caregivers, was supposed to follow through on her outrageous and wacko ideas, ignore her accusations, and do what she said with no help whatsoever from her. (I asked. She refused, though she could have handled a few things that she was good at, though that was apparently not making mashed potatoes.) She was badmouthing me before my parents died, and she's still doing it.
What should you do? AlvaDeer had good ideas. I'd certainly limit conversations with siblings about some things. For instance, if they're calling and wanting to know about bowel movements, etc., or other things that are none of their business unless they are active caregivers, don't share information. What they don't know, they can't use to attack you. As for defending yourself, there is no point in trying. It only amps up the accusations.
Your mom's personality will never go back to what it was. Once you accept this and stop trying to fit her into the box she used to be in, you'll feel better. Every day is a new day with dementia. We go forward to whatever the next day brings, and I wish you luck on this journey with your mom. I strongly suggest you look at some memory care places where mom could be happy and social, and where you could go back to being her daughter instead of her caregiver.
Your profile says Mom has had a stroke. Strokes do cause Dementia. The brain has been damaged. She could be having mini ones. She may not be able to live alone anymore. If she is not already seeing a Neurologist, maybe she should. Its wise to have Labs done yearly. Low Potassium and Thyroid have a lot to do with how we act. So does B12. Dehydration can do a number on someone. Diabetes. A UTI will cause a personality change.
Family, they criticize what you do or don't do? Tell them they are welcome to come live near Mom and help her out. They are not on the front lines. They don't deal with the changes and the decline. You do not need their criticism, you are doing your best, if they feel they can do better then do it. Throw it back at them. Stand up for yourself. I so hope u have POAs. I would not care for anyone without having them.
Went to a class get together a while back. Sat with a couple we know. Both of us had cared for a parent. The husband said "no one knows until they have gone thru it." And that is true. I remember thinking how could that person put their LO in a nursing home? Well I found out. I had Mom in my home for 20 months. There was a monthly decline. Dementia is so unpredictable and I can't do that. I am a planner. It was like having a child again. My house was not conducive to someone who could not do stairs. I have 3 flights. I ended up placing Mom in an AL. She did well there and I could be a daughter notva caregiver.
I suggest u never live with Mom. If its ever found she needs 24/7 care then place her. There is no reason you, out of all the siblings, need to be her caregiver.
It's all too true that people don't know what it is like to be a caregiver. Or to put someone into a facility. I have been judged by some family members for the decisions I made and I am so hurt and angry that I am DONE with them. I don't even want them to come to the funeral that will happen some day down the line. Thankfully the people that really matter, namely my sister and then secondly my/her children, have been supportive.
Susan - would love to offer specific advice but as you have heard, hard to do so when we don't know what type of changes, etc.
I'm sure t hat quick changes are difficult. I guess you generally just have to go with the flow. Or does she need to go to the doctor to try to manage some of these changes? How old is she? What conditions does she have? Could she have a UTI? Depression?
I am taking last question first: Does Mom live with you? And most importantly, are you Mom's POA? Time to nip the interference in the bud if this is the case. I would gather them together OR write a letter, copies to all involved: something to this effect. "Dear Sibs: First let me say I love/respect you all and I know that you love Mom and have her/my best interests in heart. However, I am mom's primary caregiver and her POA. As such I have a full plate right there. Any additions of varying opinions, arguments, discussions, really only confuses everything. I have now to care for Mom and I so appreciate your support (and any help) you can give me. I hope you know that. Please feel free to tell me a brief piece of input or a brief suggestion. But I don't wish to argue or defend my choices and positions. I will respectfully hear you--ONCE. And then I will continue with care as I see fit. I love you. I hope you understand. But this isn't up for argument, discussion or negotiation. If you all wish to meet with me one time to let me know how you feel about this decision of mine, that's fine--ONCE. Love, Susan
So that's for starts. IF you are caregiver, and if you are POA (I hope to god you are if you are caregiver), then this is your right and your duty in fact to your mother.
Your primary note to us that your mom is changing rapidly is too nebulous for me to comment on. I don't know your mom. I don't know where she started or where she is now or her diagnosis or her prognosis. I can go to your profile later and try to find out. So I can only say that, if you have taken your mom into your home and are caring for her because of any diagnosis of dementia, there are going to be changes. That is to say you are going to LOSE your mom while she stands before you. She is going to profoundly change in ways you cannot guess or predict, and that you may ultimately not be able to care for in a home setting, whether her home or yours. What the future holds will be decided day by day and step by step. You may be closing in on it tough decisions already as you have posted under burnout. You may be close to your limitations. Honor that. Embrace that. There is no other choice.
I wish you well. I hope you tell us more. I hope you keep us updated and read here on Forum, for no other reason than that you will know you are not alone in your fear and anxiety and your sheer exhaustion.
My heart goes out to you.
PS: I did just go to your profile and I thank you for filling it out as the extra information helps. You live in my darling daughter's town, and I visit that beautiful area for a month every year. With your having moved to be close to Mom, and mom living independently within 10 minutes of you, it does sound as tho some decisions are on the forefront and she can still be involved in what they are. BUT you are going to have to be scrupulously-- and sometimes it will seem to you brutally--honest with both her and the siblings as to what levels of care she needs. So handling that is a good first move for the New Year. Time for family discussion I do believe. Start first with suggesting that to your Mom.
Bet you need your siblings making suggestions, questioning & bickering like you need a hole in the head.
Have you read this wonderful book? 'Being Mortal: Medicine and What Matters in the End' by Atul Gawande
I found it refreshingly honest & helped me put things in perspective.
(((Hugs))) to you
PS It is OK to feel sad.
Hon, I am 81 and you are EXHAUSTING ME.
Please. Just let us be. We have BEEN THERE. We have DONE THAT. We are still doing just about what we WANT TO DO.
No. I take that back. I am walking a Hades lot more than I want to. (Because I think I SHOULD).
But hon, we are on the downward spiral. And many of us are OK WITH THAT. I mean, for me. it has come down to "Please, let me go before my beloved 37 years long partner, because honestly I do NOT WANT TO BE HERE WITHOUT HIM. I mean I love sharing political discussions and all that, but I cannot OPERATE the internet without him!!!! Let's get real!
I have discussed all of this with my own daughter. I wish you and your Mom did discuss it all. Because honestly Susan, we are on our way out now. Your mom and me. You have to let us go. You will be fine. We will be gone (but trust me you will hear your loved mom in your head every bad move you make, as I alike shall haunt my own girl).
This is life. This is the cycle. Stop torturing it to death. I lost my mom when she was 96. Honestly I wish I could have SPARED her that last few years.
I understand. Believe me. To the bottom of that soul I think I don't have, I understand you.
But Susan, you have to begin to let go. You have to start to let go now. I have a daughter I am sooooo close to (guess what her name is Susan Lee.
I know how hard.
But you have to let go, and my girl does, as well. This is the progression of it all. And trust me..............
WE WILL BE WITH YOU MORE THAN YOU WANT US THERE. I promise you, that while you draw a breath, we will be there, because at 91 my Francy, my mom, is with me all the time.
Bring happiness to her life? Susan, you have to be kidding. You ARE THE HAPPINESS of her life. My daughter has gone from being my kid to being my wise woman. You are her happiness. Never forget that, even when she's yelling at you.
Hee!
Did you Mom create an Advanced Healthcare Directive?
What are the points of contention regarding her care?
If it is because your Mom is declining and she is currently living "independently" then hopefully the PoAs will organize a family meeting with a written agenda and listed goals of the meeting. so that people don't go off point. Don't try to cover too much ground at first... maybe address the most urgent issues (like, if she's declining rapidly this could be a sign of a UTI or other health issue, eg: does she self-administer any medications? If so she may be over- or under-dosing herself due to memory issues, etc).
The family meeting is something me and my husband did when his Mom and step-father first were falling apart at the same time. Three brothers and 2 step brothers, but with a written agenda and stated goals it went well, and was productive.
After that I (being the designated care manager) sent out regular "facts only" emailed updates to them to keep them in the loop so they could never say, "I didn't know _______".
It becomes important to accept what really is rather than what we want it to be. You were going to care for mom and see her through to the end, and although there might be bumps in the road, you'd tackle them together - right? You, your siblings, and mom. Forever family, forever loved, and no one going it alone.
Well.....ummmm.....
Here you are, and it isn't what you expected. I know. I've been there with both parents. Due to the attacks and actions of one person, our family was torn apart. Rude Aunt, Dad's sister, thought she knew everything and that she was smarter than everyone. Did you know that mashed potatoes could cure cancer? She did. I, the caregiver along with our wonderful hired caregivers, was supposed to follow through on her outrageous and wacko ideas, ignore her accusations, and do what she said with no help whatsoever from her. (I asked. She refused, though she could have handled a few things that she was good at, though that was apparently not making mashed potatoes.) She was badmouthing me before my parents died, and she's still doing it.
What should you do? AlvaDeer had good ideas. I'd certainly limit conversations with siblings about some things. For instance, if they're calling and wanting to know about bowel movements, etc., or other things that are none of their business unless they are active caregivers, don't share information. What they don't know, they can't use to attack you. As for defending yourself, there is no point in trying. It only amps up the accusations.
Your mom's personality will never go back to what it was. Once you accept this and stop trying to fit her into the box she used to be in, you'll feel better. Every day is a new day with dementia. We go forward to whatever the next day brings, and I wish you luck on this journey with your mom. I strongly suggest you look at some memory care places where mom could be happy and social, and where you could go back to being her daughter instead of her caregiver.
Family, they criticize what you do or don't do? Tell them they are welcome to come live near Mom and help her out. They are not on the front lines. They don't deal with the changes and the decline. You do not need their criticism, you are doing your best, if they feel they can do better then do it. Throw it back at them. Stand up for yourself. I so hope u have POAs. I would not care for anyone without having them.
Went to a class get together a while back. Sat with a couple we know. Both of us had cared for a parent. The husband said "no one knows until they have gone thru it." And that is true. I remember thinking how could that person put their LO in a nursing home? Well I found out. I had Mom in my home for 20 months. There was a monthly decline. Dementia is so unpredictable and I can't do that. I am a planner. It was like having a child again. My house was not conducive to someone who could not do stairs. I have 3 flights. I ended up placing Mom in an AL. She did well there and I could be a daughter notva caregiver.
I suggest u never live with Mom. If its ever found she needs 24/7 care then place her. There is no reason you, out of all the siblings, need to be her caregiver.
I'm sure t hat quick changes are difficult. I guess you generally just have to go with the flow. Or does she need to go to the doctor to try to manage some of these changes? How old is she? What conditions does she have? Could she have a UTI? Depression?
Best of luck.
Does Mom live with you? And most importantly, are you Mom's POA?
Time to nip the interference in the bud if this is the case.
I would gather them together OR write a letter, copies to all involved: something to this effect.
"Dear Sibs:
First let me say I love/respect you all and I know that you love Mom and have her/my best interests in heart.
However, I am mom's primary caregiver and her POA. As such I have a full plate right there. Any additions of varying opinions, arguments, discussions, really only confuses everything.
I have now to care for Mom and I so appreciate your support (and any help) you can give me. I hope you know that. Please feel free to tell me a brief piece of input or a brief suggestion. But I don't wish to argue or defend my choices and positions. I will respectfully hear you--ONCE. And then I will continue with care as I see fit.
I love you. I hope you understand. But this isn't up for argument, discussion or negotiation. If you all wish to meet with me one time to let me know how you feel about this decision of mine, that's fine--ONCE.
Love, Susan
So that's for starts. IF you are caregiver, and if you are POA (I hope to god you are if you are caregiver), then this is your right and your duty in fact to your mother.
Your primary note to us that your mom is changing rapidly is too nebulous for me to comment on. I don't know your mom. I don't know where she started or where she is now or her diagnosis or her prognosis. I can go to your profile later and try to find out.
So I can only say that, if you have taken your mom into your home and are caring for her because of any diagnosis of dementia, there are going to be changes. That is to say you are going to LOSE your mom while she stands before you. She is going to profoundly change in ways you cannot guess or predict, and that you may ultimately not be able to care for in a home setting, whether her home or yours.
What the future holds will be decided day by day and step by step. You may be closing in on it tough decisions already as you have posted under burnout. You may be close to your limitations. Honor that. Embrace that. There is no other choice.
I wish you well. I hope you tell us more. I hope you keep us updated and read here on Forum, for no other reason than that you will know you are not alone in your fear and anxiety and your sheer exhaustion.
My heart goes out to you.
PS: I did just go to your profile and I thank you for filling it out as the extra information helps. You live in my darling daughter's town, and I visit that beautiful area for a month every year. With your having moved to be close to Mom, and mom living independently within 10 minutes of you, it does sound as tho some decisions are on the forefront and she can still be involved in what they are.
BUT you are going to have to be scrupulously-- and sometimes it will seem to you brutally--honest with both her and the siblings as to what levels of care she needs. So handling that is a good first move for the New Year. Time for family discussion I do believe. Start first with suggesting that to your Mom.