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JennyMae Asked September 2013

Help, I blew it with my brother who is primary caregiver.

My brother is the primary caregiver for my Mom who is 79 with moderate dementia. My sister, myself and other brother come over everyday to help but we are not there 24/7
Today my brother is in a very bad mood and instead of telling him what a great job he is doing, or how hard it must be....
When he started going on about how he thinks this dementia is a "act" Mom is putting on. That she cares more for her dogs than herself. I tried to educate him about the way dementia impacts people. Of course she lights up and responds better when new people come over.. that is showtimers.
Anyway he just blew up and was yelling about it being an act and that Mom does know what she is doing.
I have suggested this site to him and offered books on dementia and dementia care to no avail.
I know I should have been compassionate and understanding but it scares me when he talks like this. saying "I am getting rid of Moms dogs as long as she pays more attention to them than she does to her own needs.
I know it was a mistake but I tired to tell him how lucky we are. My mom is kind, gentle, compliant, does what we ask and doesn't respond or fight back when he is yelling.
I will apologize later he won' hear me right now. But I am worried that his interactions with her are impacted by his belief that this is an act of some kind.
Thanks Jenn.

jmotherofjohn May 2014
Sounds like you need to schedule a vacation at work, trade out the caregiving, and give your brother a break for a bit. We all need some relief sometime. If you will go and sit with her for two weeks....maybe brother will come back more patient and understanding.

StandingAlone Sep 2013
OC, loved your post!

And no, what you said about getting one good week out of two makes perfect and total sense to me. It takes a while to shake off the care giver role, and all the stress that's been piling on you, sometimes for years on end. And, like you said, there it is, looming over you again at the end of your vacation... I get that totally.

And you are so right. Breaks are what we need, and breaks are what we lack. Lovely. And honestly, if it were me and your hubs siblings ever needed anything, I wouldn't spit on them if they were on fire. I'd watch them rot if they ever needed MY help..just like they're doing. Sad as hell, isn't it?

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oldcodger2 Sep 2013
Just my two cents - and, remember, two cents isn't worth much :0)

If your brother is with your mom 24/7 and you other sibs 'visit' - even if you do this daily - it just isn't enough.

I agree with an earlier post - you kids need to take her home 'overnight' at the least and 'for a few days to a week' would be even better. Each one of you should have all the elderly assist equipment on hand in your homes - so that the transition is smooth - no moving, loading/unloading of equipment. All you need to move is mom. You can have everything set up, ready, and waiting when you bring mom home.

Your brother is a saint - but is probably coming unglued under the constant pressure. It happens to the best of us. He needs a REAL BREAK. Care givers just do not get enough BREAKS. I know most don't have the help that you and your sibs are already offering. I commend you for your love and care.

I would guess that he is super stressed and that is why he feels that mom is doing things on purpose and loves her dogs more than herself.

Shoot, I had a friend (who does not have dementia in any form) tell her only son that her dogs loved her more than he did! Now, how silly is that? Her son was a GOOD son to her. But people DO get attached to their animals. Tis life for some.

It sounds like your brother's frustration is building and he just needs a lot more help with mom - and more time for his own life and to be able to get away long enough to do him some real good.

My hubby's siblings have not taken their mom or given us a break in over 8 years. They come and visit a few hours every year or two - but that doesn't help US. Your brother needs regular time off the 'job.' A week minimum - 2 weeks is better. This should be regular and scheduled if at all possible.

As my doctor said to me - will it be CONVENIENT? @%$# NO! But neither is full time care giving!!

When we finally did get away for 2 weeks (we begged/solicited friends and our kids to watch over things here) it took me 3-4 days just to feel relaxed. I enjoyed the next WEEK - It was wonderful - but then the dread came back and took the final 3 days. So, basically, I got a one full, wonderful week out of the two. I know it sounds weird.

So, support your brother as much as you can - interject helpful comments as you have been doing, give him print outs, books, etc. and ALWAYS make him feel appreciated and loved. Let him know how much you love him and how grateful you are for what he is doing for your mother. Hubby's sibs don't call, write or even answer our texts. We have just stopped asking them.

I do believe that dementia and ALZ types of issues must be some of the most difficult to endure and deal with productively and I pray for all you care givers who are caring for someone who has these problems. Bless you all.

unikornfairy Sep 2013
Bless you BeachWalker and may God keep the continuing ravages of age at bay for you. It is always good to look at caregiving from the eyes of the elderly. I understand fully the love of animals and how much they give back to us asking for so little in return.

What worries me is that the son thinks she cares more for her pets than for herself, yet there is no explanation as to why he thinks this. If she is so involved with her pets that she is neglecting to eat, bathe, take her medicines, etc. then he may not be angry with her and the dogs as much as he is terrified he can't keep her alive if she doesn't begin to eat, take her meds, etc. I wouldn't recommend getting rid of the pets as much as I would recommend "using" them to get the mother to "cooperate". If the son has a ritual where he "pretends to give the dogs their meds" (treats are great for this) then asks his mom to take her meds at the same time... if he feeds the dogs small portions at the same time he is trying to get her to eat (and has them eat next to the table where she's eating)... if one of the dogs has its bath, then the mom takes hers (with two dogs, he could bathe one on Sunday, the other on Wednesday) and the Mom would take her bath on these two days (at least it wouldn't be a battle to get her bathed) and the elderly don't always need to bathe everyday. The Mom may need it more often, but if he incorporates her dogs routine into HER routine, then he's won the battle. Therapy dogs are often used for just these reasons.

The original poster doesn't mention what they do when they come over and like other responders have said, if they're dropping by to check, but not doing any of the heavy lifting, their visits are more disruptive than helpful. Each sibling needs a specific task they perform each day, whether one daughter bathes her (and one of the dogs),, another sibling could take the mom and the dogs for an afternoon walk, another could come by and do the laundry, while another does the grocery shopping. Who takes the mother to the doctor? Alz often causes the sufferer to change during "sundowners", is there a sibling who stays over to help during this transition time? Alz patients also often have sleep disruption, does a sibling stay over a couple times a week to watch the mom so the brother can get a full night's sleep, including the necessary REM or deep sleep? Does a sibling cook at least one of the three meals each day and then clean up the kitchen? Does the primary care giver get a weekend a month off to recuperate? Does he have at least one afternoon/evening to go to movies or visit with friends? When was the last week long vacation he had? Does anyone go through photo albums with her and ask who is in the photos, where they were taken, when they were taken and the story behind the photo? It's amazing what the children can learn about the family history from doing this (and writing the info on the back of the photo for future generations) and this time is so precious to an alz patient.

These last years can be so hard, but they can also be rewarding and quite the learning experience... especially if the children all pitch in and remember their mom had a life before them... it's a chance to know the person she was, became and is yet to be. I highly recommend they treasure every moment they have with her. And may God Bless everyone of you in this endeavor.

beachwalker Sep 2013
I speak from the other side of this fence, as it were, as I am a 78 yr old widow with the creeping in of old age that gets my attention day by week by year. my arthritis is very painful, my children live far away but do call, e-mail and visit when they can. I have two dogs and a cat who keep me warmly comforted and feeling needed.
My memory lapses are getting worse and worse. I have no trouble recalling long ago but yesterday...hmmmmmnot so much. Anyway, I don't yet need a live in caretaker but who knows. My point is that your mom is lucky indeed to have her children close enough to give care, but she still yearns to feel LOVED, RESPECTED, ADMIRED and VALUED even if in small increments. A bit of praise once a day would be welcome. You obviously adore her and your brother is getting scared/angry about the reality that he is losing/has lost the "MOM" he once had. She also scared knowing that she can no longer ever BE the MOM she once was. Still, giving him time off every week ( that he can count on) should be a help. But he MUST NOT get rid of her dogs!!!!! He may not understand why she is so devoted to them, but trust me, if they go she will hurry after them. I certainly would.
I used have four dogs, but now am down to two and they also are creaky with age but still can take short walks and fresh air with me., Which I need and enjoy.

Suggestion...Give mom some memory prompts about the years she remembers so well...have her talk, dictate etc. what her childhood was like, how she felt about school, who her first boy-friend was and so on...... She loves those memories and would love to share them.
Blessings on each and every one of you...

vstefans Sep 2013
Jen thanks again for the update - I posted above before I read that. Wil be hoping with you that it all works out OK and he's willing to take that day off, and then maybe accept some advice and education that will make it a lot more tolerable for him,and Mom too!

vstefans Sep 2013
JennyMae when I first read your post I got a sick feeling in the pit of my stomach. When read babylettuce's answer that brother is probably just blowing off steam, I thought it was you for a minute and I felt better, but now that I realize you are not at all sure that is the case, I feel queasy again.

Jen, you are probably the only one in a spot to know what really is the case, but YOU didn't blow anything. You are right to be concerned. Mom does not benefit from being yelled at non-stop and hated on because she has dementia, and this sounds like a potential setup for elder abuse. You brother has you guys over EVERY DAY; to be sure, caregiving is hard and watching someone you live decline is hard, but from what you describe he is not one of the abandoned, solo, overstresssed caregivers who post on here all the time who can't ever leave or who are getting abused by their caregivee. You are the one seeing this,and you probably know if it is just a case of emotions running high for someone who would never actually do anything hurtful (beyond yelling - but that in itself is hurtful...arrgh) but if there is an option to get Mom out of there or relieve brother of his duties for an extended period of time it could be a real conisderation.

KathyT has a good point too, if it were a case where he really is doing a yeoman's job and you are just coming over and putting a little icing on the cake. Then maybe its true that all he needs is a little respite, and that might allow him to gain a little perspective, Does he take a break and get out of there when you come over, or is he still doing all the care personally? Could he be blowing up because he is doing it all and you just come over briefly to see how he is doing, or are you coming over and really doing a lot of the actual work on a day to day basis? If he perceives, rightly or wrongly, that he is doing all the work and you are just coming over and trying to tell him how he should be doing it better, his perspective could be rightfully very different than yours...or very different from reality. The honest answers to those questions could point you in the right direction on this.

msdiva Sep 2013
I guess people see things different when it comes alz patients.One thing for sure there is no faking. If he get rid of the pets that will make things worst I work with alz patients and one thing for sure you half to have patience and alot of people can't do this job..Everyone has dementia its a define word for forgetting, you forget where you put ur keys ur check book or even your charge or debit card ..I do not like it when people say their faking cause there is no such thing,,i hope your brother comes to his senses of NOT removing her pet because he will regret it

babylettuce Sep 2013
Thanks for the update, Jenny!

JennyMae Sep 2013
Thank you all. I do think he just needed to vent. I should have listened before educating. I'm on my way to give him the day off.

anonymous158299 Sep 2013
the ocd tendancies that a dementia sufferer exhibit are alone enough to drive the average person over the edge. the carer is watching his / her own life being consumed and simultaniously fearing for their own future. if and when the dementia patient starts exhibiting depression, bipolar, or worse, the carer is being twisted like a pretzel. it isnt uncommon for siblings to argue, even vehemently, but education about the disease and its fatal progression are the best bet for all involved. i have 2 sisters who are as annoying as nut rash but neither ever argued when presented with sensical information that i picked up online and elsewhere. in moms final days they chipped in and provided bedside help and everyone got along.

StandingAlone Sep 2013
Babylettuce, for some reason your user name made me lol ... Liked your post, too. :)

babylettuce Sep 2013
Jinx is correct. People say things in the heat of the moment that they don't mean. I think men especially do that. He won't get rid of the dogs, but I understand the frustration with Mom. It's hard to keep up with the constant changes in a person who has dementia. It seems like they are doing things on purpose sometimes. If Mom was a manipulative person before she got sick, then it would be even harder to see her as genuine now. My Dad has passed the point where he can do the mental gymnastics to be manipulative, but I used to think he did some things on purpose, too.
I agree with the posters who think he needs a break from Mom. He will forgive you and you can both get past this. You are doing a wonderful job supporting him with information about the disease. It's not always easy to take in the educational, distant, and detached view, when you're up to your butt in alligators. I'm sure he appreciates the information when he's calm and has time to think about it.
He needs a person who can listen to him spout all the stuff he puts up with, all the anger, disgust, and frustration. A person who will listen without judgement and be supportive. Remember the saying about raising a child, 'it takes a village'? Well it takes a village to care for an old person, too. Bless you both for your generosity.

Jinx4740 Sep 2013
Jenn, I don't know your brother, but people say wild things sometimes. I hope he was just blowing off steam. I think that's what he was doing about getting rid of the dogs.

Try half agreeing with him. When he says she's pretending, say, "I guess it seems like that sometimes." Give him a hug and a day off, and he'll forgive you. No one is perfect, and I know what you mean that you were scared by his words.

kathyt1 Sep 2013
Sometimes you just crack under the pressure. My siblings think Dad needs little care, because when they see him he is dressed, bathed, in clean clothes, with a healthy glow from a nutrious and tasty diet, at his peak of the effectiveness of his Parkinson's medicine. What they don't see is the 24/7 work that is involved in getting him there.

Thank your brother for all the hard work he does, compliment him on his strength and courage and compassion. Tell him how grateful you are for his wonderful care. Most important give that man sometime to himself, to be something more than a caregiver.

StandingAlone Sep 2013
Oh, and I don't agree at all with your brother threatening to get rid of the dogs, just out of spite either... That wouldn't be very good of him at all, no matter what he's personally dealing with.. Some lines you don't cross.. My mom was an ass, but I never would have gotten rid of Reba, her dog... Him saying that would make me nervous, too... He sounds like he's got way too much on his plate... The best kindness you could do him, like the Lori and Kaz have said, is to give him a much needed break for a could days a week... Totally agree...

loridtabbykat Sep 2013
I agree with assandache7, take your Mom over to your house for a day or even over night. Let your brother go out to a movie once in a while. Day after day of being a caregiver takes nerves of steel. So glad you gave him some info. that is soo thoughtful of you, especially while the ranting was still going on! You guys are so lucky that there is more than one of you to take care of your Mom. I have a brother and sister, but you would never know it.

kazzaa Sep 2013
Can relate to your bro sometimes i think shes trying to drive me MAD? My mum is early stages I think? BUT i do think that they take the piss abit with the main caregivers. My brother and sisters have really seen nothing major only my stories of what shes done its when youre living 24/7 you see what its all about.
I can understand your brothers frustration but hes VERY lucky to have his siblings help out I wouldnt feel bad just listen to him and let him let off steam now and then this isnt easy for anyone. Explain to him that they do play games and know what they are at! Dementia dosnt mean stupid they are very clever at acting differently when other people are around this is infuriating for the caregiver and until my mum dosnt know who we are I dont think my family will wake up to dementia.

StandingAlone Sep 2013
I'm glad you gave your brother the books, and tried to help him. He needs all the help he can get. I wish someone would have given me some books a long time ago... I just researched on the net some... It did help, but really, nothing can prepare anyone for the world of alz... Everyone's house is different in some way... someone is dealing with something new somewhere... I hope we hear about it here, too. I've gained so much more knowledge about this disease, what to expect, how to deal...it's a godsend. Send your brother here as well and tell him to start jumping around and reading some...

StandingAlone Sep 2013
Showtimers? That's the first time I've heard that word... It explains a lot.

As for your mom knowing what she's doing, well, it depends on how bad off she is. At the beginning of alz/dementia with my mom, she certainly did know what she was doing on some level, she was still lucid. Don't ever think the elderly aren't capable of being 'naughty' on purpose, just because they have dementia or alz . They certainly are, and some enjoy being naughty. The sweetest little old ladies can suddenly sprout horns. Just depends on where they're at in their journey....and their personalities... But you can tell when someone knows what they're doing, and when they really just don't anymore... Sometimes my mom was lousy to be lousy....getting pissed, throwing food, drinks, whatever....she knew what she was doing, too... Now, towards the end of this ride, no, she has no clue what she's doing anymore....she's totally a baby now...

assandache7 Sep 2013
You did the right thing by trying to educate him about dementia..Continue to do that..If you have the time try to give him what seems like a much needed break from Mom.

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