Family Meeting--what to discuss?
Y'all know my story. 88 yo mother lives with brother in small apt attached to his home. He is her primary caregiver--(and very defensive about the role). She allows me to come in a few times a week, but still looks to brother for all medical advice, etc. They have a very weird relationship--- Mother is failing. She has been sick since about the first of Nov. UTI, URI, one ER visit to rule out anything "serious", more GI problems, vomiting, not eating...I really thought she was not going to live through Christmas. She is "better", but not back to baseline of Nov. Much less mobile, much frailer, often bladder incontinent, less able to string together words and sentences--I know that one serious fall will do her in. My other 3 siblings are mostly MIA. They don't know nor seem to care what happens to mother. I get it, she would never have won mother of the year, but she IS our mother, and we all need to be on the same page, carewise. I emailed everyone and asked for a family meeting (just sibs, no spouses) and asked brother with POA to bring mother's LTC policy and anything else he feels appropriate to know. I actually have them all coming over Tues night. Amazing. Mom needs more care. About 6 months ago I had her ready for an in home care company to come in 2xs a week. Brother talked her out of it ("they steal from you, they'll steal your identity"--basically he preyed on her worst fears and she balked.) I actually WORKED for this company for years and I was pretty offended that brother kind of threw me under the bus.... Anyhow--going forward--please help me think of topics we need to discuss. I can GIVE great advice, but this is my own family and I feel frozen. Mother has mild-moderate dementia, brother says she's fine. His plan is to keep her home until she dies. He said (a direct quite) "when she can no longer walk, I will install a Hoyer lift above her bed, hoist her up in the morning, change her diaper and plop her in a wheelchair and park her at the kitchen table for the day". Uh, no, pal, this is inhumane. So--she has funds for in home care, also for a moderately priced ALF--but she's too frail for that, I fear. Money is not an issue, 2 of my sibs are wealthy beyond their needs, so we don't have to worry (luckily). Just need some topics and questions we can banter about. I've tried and tried to get all my sibs to have this meeting for a couple of years--now mom is so sick and frail...it's like we're too late, but I'm going to do the best I can. Thanks in advance. Any advice welcome!
My friend was successful caring along with siblings for their mother (5 of them) because they all sent money monthly for her care. Their share of the expense was either voluntary or pro-rated according to their ability to pay. They all visited. The money went to the primary caregiver to manage.
Even though the one responsible had a busy life, she seemed to have found a good AL for their Mom.
Here is the tough news. If brother has POA ( mom gave it to him, same with my mom) and he's doing the caregiving, I'd lay out the alternatives to the sibs, but not try to convince anyone, and not try to get into a head to head with brother. He and mom clearly have this worked out.
So, something like "it seems to me that mom has taken a real turn for the worse in the last few weeks. I think perhaps it is time to get hospice involved".
Let them discuss alternatives to Hospice, not alternatives to " No change".
Example of the what ifs, what would brother do if Mom is scared of the Hoyer lift? My Mom was terrified being lifted in that thing at the nursing home, she be shaking and crying.... so one of the stronger male aides was able to lift my Mom from her bed to her wheelchair, and that worked soooo much better, Mom felt so safe in his arms.
Another what ifs, what if Mom needs help during the night numerous times.... would brother be able to fall right back to sleep afterwards or would he lay awake for an hour waiting for Mom's next call for him? What would he do so he could get his much needed sleep.
See where I am going with this.
Need a plan in place for respite for brother.
My concern in your situation is that your brother wants to do it all without any help from professional caregivers. This is a recipe for disaster, but at this time if he is still willing to do it, I don’t know what else you can do, unless you can prove that he is not taking care of your mother properly. Lifing her in a hoyer may seem inhumane, but I got over the indignity of it years ago. The hoyer lift enabled my dad to stay in his home years after he was a candidate for a nursing home. In fact, as he’s balancing in the air while I remove the wheelchair out from under him, I tell him “Don’t run off anywhere, Dad”, while I move the chair out of the room. He always grins and says “I guarrrraaantee!” (with a Cajun accent). The difference here is that I am not a fulltime caregiver. You may have to wait until your brother show signs of cracking before he accepts outside help. We set up a schedule of coming in to care for our parents along with professional caregivers. This worked for years until the system started to crack (their transport car broke down, Money!, their old house had costly repairs, siblings started to crack, physically and mentally, and parents declined even more. Our last family meeting, 6 months ago, was about looking in to a nursing facility for both of them as they are far beyond assisted living care. We are half way there as of this date. And that is another story........
I will be the mediator, but I am going to let brother with legally stated POA take "charge"--as he knows the financial ins and outs. Brother she LIVES with says he has MPOA, but it's more of a "title" than a real legal responsibility. He works shift work and is home A LOT, so he took over Dr. visits when she stopped driving. She defers to him on everything. He does enjoy the "medical expert" role a bit.....and so we will have to be very gentle in dealing with him. He becomes defensive and angry very easily.
As far as there being money in this for anyone, there isn't. None of us will inherit enough money to make a single change to any lifestyle. Mother has not paid rent, just 1/3 of the electric for the last 20 years. Her bills are few. Daddy had Parkinson's Disease and just HATED being cared for 24/7 by his family. He bought that LTC policy so we WOULD NOT have the same dynamic with mother. He told us not to keep her home just because she wanted to be---she's a bit of a pill, to be honest, and he KNEW.
Mother is not a 24/7 care need. She needs a few days a week help. I have done what I can, what she will allow me to do, but honestly? She doesn't like me much and doesn't trust me at all. Any plan we come up with will have to be presented to her by the POA brother, us "girls" are just "girls".
At best, if Brother will allow her aides, and not butt in and make their lives miserable--that would be great. I don't know if he will.
I wish with all my heart we'd moved mother from rehab 2 years ago after her hip replacement to and Assisted Living. I know she'd be so much happier with friends and activities--but brother would not hear of it. I'd found a place and she was actually seriously considering it--then brother said that these places medicate you into a stupor and steal all your valuables....sigh....what an idiot.
I hope, in the end, to come to an amicable, workable solution.
Just have to get POA brother to stop being a Dr. No Shot and stand up to mother. He is content to sit back and kinda wait for stuff to happen.
As far as the family pulling together for care? Won't happen. One sister works FT and spends all her weekends on golf outings. Other sister said "when mom dies, call me, otherwise, I'm out", POA brother just doesn't DO conflict. Or visits. It's me and MPOA brother. Hasn't worked all that well.
Hoping for some resolutions to this situation.
Consider consulting with an elder care attorney for your situation. You could possibility get her into ALF with additional care giving support from facility. And then pay your brother to visit and provide supplemental care. Might keep everyone happy. Good luck.
I did email the entire family and she did get a lot of 5-10 minute visits over the holidays. But she needs more help and care. I think no one will "vote" for an ALF, or NH, but hopefully for aides during the week. We need to present a united front to Mother and we need to tiptoe around brother.
Now I know she can't shower w/o help, she's bladder incontinent, is going to have GI issues for life, I know she's not long for this world--however, women in my family live FOREVER. Her own mother was 100% independent until a fall and her death at age 95.
My brother is an EMT. I think he sees so much sickness and old people, he's kind of 'unaware' of mom.
At the very least, we need to have a weekly report to all of us about her health, etc. And I do think my sibs need to step up a little. A card in the mail once a month--doesn't really count. Boots on the ground.
Has APS ever visited?
Is that topic completely dead or can it be brought up again, to get mom to open up to the idea of in-home caregiving aid?
Why would your bro be against that, anyway??? No need to answer, really, because I do get it. My own goofball bro killed my dad's doing a much-needed POA for good with ignorant fear mongering words a few years ago. I was able to wash my hands of things, but it does drive you crazy when that happens. All my work to take him to lawyers for consultations, then bro says a few ignorant words and *poof* my dad will never give POA now.
That reminded me of a poster here some time ago who's parents elected to have their son be their financial Power of Attorney, unfortunately the son was clueless about finances.... now those parents could have chosen their daughter who was a CPA but they didn't because she was just a girl.... [sigh].
Oh well, my Mom was pretty much like that, too.
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I WORKED for the care company I wanted to use. For my brother to brand all us caregivers as thieves and con artists was offensive, but he knows how to scare mother into doing what HE wants. HE actually does not have ANY legal power over her. She can still make decisions, we just need to lovingly guide and help her. Not terrify her.
I am going to ask POA brother to mediate--actually, as sibs, we get along really well, it's just this one brother who's difficult. I don't want to drag anybody else into this, unless it becomes absolutely necessary. All we are doing is talking about what we need to do NOW to help mother more. If I brought an outsider in, brother would blow a gasket, As it is, I am just grateful that all 5 of us are actually going to have this pow-wow on Tues night. This is the first time in 5 years that I have been begging the sibs to all meet that they all actually are on board.
Yeah, girls are pretty worthless, aren't we? My hubby is mad because I chose our oldest daughter to be our executrix and to have POA for us. He thinks our son should be. Well, son is an attorney, but he lives 800 miles away, we hardly ever see him or speak to him--the OBVIOUS choice was our daughter who is a brilliant business woman and will carry out our wishes with grace and dignity. Our son would blow into town and make everybody else mad.
I'm just glad we will all get to sit down and talk. It shouldn't be so doggone hard.
It’s The Parking Lot and it’s design and purpose is to keep things on track. And Lord knows - with all those siblings, I’d think it may be pretty easy to get detoured.
How it works (ideally): You tape a large sheet of paper to the closest wall and write “Parking Lot” at the top. Next - everyone gets their own little pad of Post-It notes.
As the meeting chugs along, any time someone brings up a topic or question that is not focused on the problem at hand - the mediator says something like “that’s a great question/point. Write it down on your post-it and we’ll “park” it to be discussed at the end - after the matter at hand is finished”.
If there’s time at the end - and everyone is up for it - all “parked” topics are addressed in the order received. If everyone is out of time and or energy- and they still want the topic addressed - you schedule another meeting. Everyone is assured that their voice will be heard.
Good luck with your meeting! Are you serving wine...or Ativan, maybe?
Have ur meeting. You have enough siblings to override other brother. M
That is a brilliant plan! I am going to use it. Thank you!
Spent a few hours at mother's after church. She was swathed in 3 heavy blankets, with a heating pad on under all that and her apt thermostat is set at 85. I was sweating up a storm. She was watching a FB game, didn't know who was playing, didn't care. She said she was sick to her stomach again, I asked if she'd taken the probiotic capsules I brought her (prescribed by my SIL who is a GI dr) She said she had. I saw them in the kitchen. She had taken one, the one I MADE her take 6 days ago.
I asked her if she was hungry and she hemmed and hawed, but finally said a salad would taste good, I made her a salad and cleaned her tiny kitchen...she ate it all and I made her drink, but she won't drink anything but full sugar Coke...
Made some comments as to the New Year and my resolve to toss 1/3 of our "stuff" as we prepare to downsize in a year or so. She said "Oh, I have been throwing things out right and left!" I looked around this jam packed room and said "what, exactly did you toss?" Well, she had had my niece pack away some extra white blouses (she has over 100). Nothing had been thrown out---just repackaged. I know for a FACT she has not had a shower in a week and is spending all her time in front of the TV. Which is fine. But when I asked about bathing, personal care, etc, she tries to change the subject.
I DID NOT tell her we were meeting. She's gonna be furious when she does find out and I'm not going to tell her about it. POA brother can step up for once.
Being there 5 times in the last week has helped me to see clearly she is very limited, unable to get up, fix meals or really do anything for herself. This gives me the ammo needed to talk to the sibs. I don't expect miracles. But I do hope we can get some kind of in home aid for her. I cannot do it all, sisters WON'T do it, and brothers both still work FT. This is NOT a responsibility for the SIL's and I wouldn't ask them.
Truth be told, she is one fall, one more chest cold, one more round of endless diarrhea, one more bout of constipation away from being in a NH. Against her will. I don't want it to come to that.
We don't drink, but I do have Klonipin. Maybe I'll grind some up in the cheesecake I'm making :)
Edit: You know... you mentioned you have Klonopin. I've also taken different benzodiazepines at times in recent caregiving years, and I recall one year I took half a 5mg Valium when I was going into a dreaded situation with taking my dad down to bro's house. It was just enough to take edge off of my anxiety, but I was still able to handle business at hand. It helped me to be able to deal with the situation w/o too much wear and tear on me. Only you know when it's appropriate to take medication so that you can quell your body/brain reaction and be more focused on the larger issues you want to deal with. But... just reminding you that you do have a tool in that medication, if you needed it.
It could not have gone much worse. I had typed up a sheet with some bullet points to talk about, tried to get everyone to stay on topic, but brother mom lives with came loaded for bear. (He also brought his wife, which made me angry since I had specifically asked for NO SPOUSES! She is a sweetie, really, but she relays all this personal info to her parents, who live close to me and it's very uncomfortable!!)
Anyway, I lost any semblance of control immediately. Brother was angry and let us all know it. Finally, youngest sis says "why don't we each take 5 uninterrupted minutes to voice our concerns then move on". She said her bit, then other brother, who basically just agrees with everything (Dr No Shot), then as older sister begins, brother--let's call him Bert, for sake of clarity--just begins this tirade of anger. He is yelling so loud and being so mean...screaming at ME because if I come to mother's and do ANYTHING for her, evidently, she gets mad at him and he has to deal with her. I was shut down, 100%. I had to excuse myself for a few minutes to gain control (had started a migraine by then, so I needed to dose it)...went back in and he just kept it up. Sister was trying to make some really good points, such as, what can we do NOW to help mother? IS she really as sick as she seems to be? What can we do to help? And Bert is just shooting down every single thing anyone says or suggests. I folded up my papers and threw them away.
All I said in my 5 minutes, between screaming fits from Bert was that I was concerned as mother complained so much and it was so hard to know what was truly "real" and what was "fake". I am a fixer at heart and NOT trying to help is not in my DNA. Bert told me I was not welcome in the house unless he was home and I called first. The other sibs said he was being harsh--but it IS his house, and I can't argue.
In the end, all we accomplished was making me cry, and for doing GOOD things--evidently mother absolutely hates me touching any of her things and I am not to wash a dish, go to the store or throw out trash. I can come up and talk to her and I can do a puzzle with her, but no more. Mother has NEVER said she hates me cleaning for her, she always has a list of things to do....but, I'm shut down.
The other sibs just kind of sat there--Bert exhausted himself and began to cry, out of anger and frustration towards me. I could have been a bigger person and hugged him, but he was just so out of control. Also, I don't like him very much right now.
We did talk about EOL issues, and Bert let us know that HE and only HE is in control of mother's care. All the other sibs asked was that he please start keeping us in the loop.
Maybe he will, maybe he won't. He did say that he wouldn't be opposed to Hospice when the time comes, but he WILL NOT ALLOW mother to go into ANY kind of nursing home, long term care, in home aides, nothing. She will die at his home. Period. When I mentioned that he was NOT the only one with a voice in this, he blew up again--and I gave up. He has mother so brainwashed she will believe anything he tells her.
The only "good thing" that came, is that the 3 MIA sibs will now make sure they visit once a week. They have all 3 been truly Missing in Action...and NOTHING bothers them. I'm taking a couple months off. Bert hurt me so badly. Here I am trying to lift a load for him and I really thought he might hit me, he was so mad.
And yeah, this guy has some REALLY serious mommy issues.
Sitting here, weeping. b/c I feel such a failure. I am no good at confrontation, and truly, knew Bert would be angry, but, wow, I was seriously scared.
It's over and I expect we will never talk about this again. Bert can do as he pleases, I'm now persona non grata. My older sister did offer to pay for ANYTHING that's needed, as did my younger brother. They are both very wealthy. I didn't offer, as I can't do that, I'm not working and I'm not asking my poor hubby to foot the bill for anything.
All in all, it was absolutely horrible.
One good thing.....your brother embarrassing himself like that will have repercussions and family may someday call APS to report his abusive and unreasonable control of your Mom.
Prayers now, for your quick recovery and peace of mind in the face of this horrid brother's behavior. Deep breaths, tears are okay too.
Do you need some medication now?
Is there more you want to say?
I have been in the role of persona non grata, told not to do dishes, etc. In a way, I have decided being in this space was safer than the abuse I would have received had I stayed involved. I was dealing with horrible and greedy people. But the patient has survived.