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Posted: Sunday, April 14, 2019 5:06 AM
Joined: 11/20/2015
Posts: 355

It's been a while since I posted anything, and today I don't have a lot of energy to write a lot- it hurts to even write this post. My brother has not seen my mother in 7 months, she will be in MC a year in June. His daughter has been ill and in and out of the hospital for that past year- not fatal, more of a chronic illness. He can manage to go on vacation for 10 days with is fiance, but not see my mom? I hate that she "allowed" him to become this person- she chased him for the last 20 years of her life, he has always been self centered and in denial- he is exactly like my mom and he HATES her. She barely knows I'm there, and is unkind to me when at times. I feel awful writing this, but I need support on this. I have more anger and rage toward her the longer she lives, I feel terribly guilty about this. My grandmother lived for 15 years in MC, I can't do this for 15 more years. 

I know what I wrote above doesn't totally hang together logically, but it is how I feel. I need compassionate words please.

Posted: Sunday, April 14, 2019 6:25 AM
Joined: 4/3/2019
Posts: 31

Radar, It actually sounds very logical to me- I have a similar family dynamic.  

I posted recently about my frustrations, and someone pointed out that while you cannot change a dysfunctional family dynamic, all you can do is change how you react to take care of yourself when no one else will do it.  I'm working on doing this. And I know how much it stinks (to use a technical word) when a sibling is seen as "better" and yet in reality, has never been there for any of us.  Your words of "He is exactly like her and he hates her" . . . ooooof, so true- I know precisely what you mean.  Might not make sense to other people, but I truly get you.  

I'm sorry your mother is unkind to you, it's so hard to be getting treated shabbily when you are the one who is there all the time and doing the heavy lifting.  And carrying guilt over not wanting to have to do all that, is something I can understand.  Looking forward and imagining this horribly difficult situation hanging over us for the next 15, 20 years? It's scary and it's stressful. 

One of the things I do to help myself set boundaries with my mom, is to recognize how much better, calmer, and more optimistic I feel about life in general when I am not receiving her abuse.  I recently blocked my mom's calls and texts for three days, and I got SO MUCH DONE! 

I don't know your mom's exact situation, but perhaps start with visiting a little less often, and at a time that's easy for YOU, and then plan a "treat" for afterwards- could be anything that makes you feel better.  And as someone here said, no one deserves to get abused verbally or physically.  It takes such a toll on us.  If she is in MC, does she actually need for you to be there? If all her "needs" and basics are taken care of, why not take care of yourself, as it seems no one else in your family does.  (Again, something I can relate to all too well!)

What do you do for self care? For me, taking time to recharge is critical.  A walk on the beach, and a great homemade meal always make me feel better.  Or sometimes when I'm really depleted, a funny movie.  I hope you have other good supports in your life, friends, or a partner or perhaps a four legged friend? 


Posted: Sunday, April 14, 2019 6:32 AM
Joined: 6/24/2012
Posts: 265

You are not alone in this.  It is quite hard to not judge our siblings some times.  But that is what you need to do.  Your brother has made his choice and it is his choice.  It has nothing to do with you or your mother.  Let it go.  You can't change him, but you can change how you feel about him.  And to be honest... he is not pretending to care and he clearly would not step up if he were needed.  So accept that and find support in others around you.  Make them 'your family' throughout this.  If it helps... try to imagine him deployed somewhere in the world and he can't come home or help out.  But as soon as you let go of it, you will have more energy for your mom and for yourself.  A suggestion is what they say about flying in the event of an emergency put on your own oxygen mask first before you take care of the person next to you.  So put yourself first and do some self care.  I know, not easy.  And not always possible.  But each day try to put aside time for something that might just bring you joy.  Even if it's 30 mins.  

And as to siblings.... we are always looking for something in them that connects us to our parents.  And truth is... sometimes it is just not there.  Sometimes they are just not who we need or want them to be.  They just are who they are.   And you can't make him care if he doesn't care.  And some siblings just are not 'able' to do this work as in they are not equipped. They don't have the 'right stuff' to do what needs to be done.  

As to mothers and sons...  I am the only girl and the youngest of three with two older brothers.  So nothing I say or do is 'correct or valid' my whole life according to my mother....because, well... I'm a girl.    And my brothers have a boiling resentment toward my mother.  I can't and don't try to change that stuff.   That is all about them.  Not about her. They are big boys now and seem to have never gotten past it all. But on some level, they do care about their mother.  And they are supportive to me and don't second guess anything I do which is a gift to me.  They come here once a year to visit her and spend approximately 3 hours with her.  They call her 3 or 4 times a year and struggle through a phone call.  It's what they can do and do well.  Doing more is not in their wheelhouse and it's okay.  

  But because I am the caregiver... (mom lives in assisted living and I do all the running).... Well I don't always do what she wants me to do (like sleep over or answer her phone calls 7 times a day) so the pictures of me and my family are all inside her drawers.  Pictures of my siblings  and their families are out on display.  I just laugh.  She is not able to take care of herself and I am the one who stepped up.  That's just the way it is.  But yes, oh yes, there are moments when I want to quit and toss it all to them.  But the reality of that kicks in and I realize that I need more help and more self care.   

Hope this helps a bit.  Did not mean to go on and on... but hey... it's Sunday morning... I might be preaching??  

Posted: Sunday, April 14, 2019 6:36 AM
Joined: 3/6/2017
Posts: 1346

I am so sorry Radar.

This disease brings so much loss to our lives. The long goodbye is complicated and difficult when the LO in question was also complicated and difficult. You didn't create this unhealthy dynamic. I had a lot of anger in the early days of dad's diagnosis, in part because a big piece of this was self-inflicted, because he played favorites and because I was the one being the grown up and cleaning up behind the mess he created. And that felt lonely, and sometimes selfish, in the context of the love stories I read here.

You have made the necessary arrangements to see that your mom is safe and cared for. It's OK to feel whatever you feel and to do what you need to to protect your own sanity. 

Posted: Sunday, April 14, 2019 9:08 AM
Joined: 2/5/2018
Posts: 27

I am still caring for my mother full time but anticipate a move to memory care within the year. I already have gut churning tension about having to do it, the guilt, the stress of seeing her unhappy and also don't anticipate wanting to visit.  It's almost easier sometimes to be entrenched in the disease then to get to walk away and have to go back and get slapped in the face with it every visit.  In a similar story to yours, my mom's brother in law  has final stage AlZ and his daughter travels from Spain several times a year to try and help her mother care for him, see her dad, etc.  Her brother, who lives a couple states away from his parents, hasn't been to see his parents in over a year and hardly calls.  He manages to enjoy family vacations and travel to participate in several marathons but not see his family.  My mother and I live on the opposite coast and have seen them 5 times this year.  At the end of the day, he is the one that will have to live with the fact that he wasn't there.
caregiving daughter
Posted: Sunday, April 14, 2019 11:21 AM
Joined: 11/27/2012
Posts: 1988

I have somewhat similar story. Thoughts... 1) Often folks with dementia act out the most with those they are closest to 2) Your brother is an adult--his decisions are his decisions and really none of your business. Might it affect your relationship with him--absolutely and that is your business. 3) Your brother's focus on himself is not necessarily your mom's fault. You have seen many times that children from the same parents are quite different. 4) Did your mom enable him as she raised him--maybe--did she do her best--probably. 5) It's too late for your mom to do anything now relative to your brother and it's too late for you to discuss it with her. 6) Does you mom need you now--yes, more than ever. You are wonderful to write or type your feelings. Stay on this board. Perhaps get therapy. Your mother's illness/your brother's behavior is not your fault. You have a heavy burden and you need to be a healthy physically and mentally to get through this. If you don't want to visit your mom--don't--at least this week or maybe even this month. Ensure she is safe by calling and staying in touch with clinical staff and caregivers. You will know when it is time to visit again.
Posted: Sunday, April 14, 2019 12:22 PM
Joined: 9/7/2017
Posts: 757

warning, I'm in a swear-ish mood this morning. daily mantra... "f*%& these people" 

Don't worry about the love stories you read on here about devotion - i would posit that its easy to take care of the people you love, who loved you.  It's MUCH harder to work within a dysfunctional framework, find your boundaries and provide support and care to people who didn't always support and care for you.  That s%&* is goddamned heroic and I make no apologies for doing whatever I need to do to keep it together. 

So. no guilt. You did and do more than your brother. You got her to a safe place.  She is cared for.  You will probably be called up again for the next emergency.  

Take this respite time and back off on the guilt, and take care of yourself.  Don't answer her calls.  Check in with the staff and make sure she is doing ok.  I feel pangs sometimes when the staff says something that acknowledges we don't visit much (my MIL is four miles from us and we don't do social visits, we visit when something needs to be taken care of) but ... honestly, f*$& that. We helped her when no one else would.  No one else is stepping up to the plate now either, and all of her needs are taken care of, she is safe.  That's all she gets from me. 

I'm trying to learn from the selfish people just a little.  They do nothing and don't seem to care.  I think there's a middle ground and I've tried to find it.  I can be responsible and care for my MIL - and also take a 10 day vacation without apologies.  

Your time spent worrying about mom and brother is just ... negative mental chatter.  It accomplishes nothing except makes you feel bad. Forget brother.  Forget mom.  If you have to do something for her, or visit, do it... but mentally shed the burden when you leave.  The best revenge is being happy and pursuing your own life. 

It took me a LONG time to get here but... the whole "why does mom long for a connection with the child who wants nothing to do with her?" conversation is just... pointless. It sucks. Its unfair.  They are dysfunctional and in my case there is codependency and all other kinds of unhappy ickiness.  I used to blame my SIL, but then I realized, that situation was cultivated by MIL over years and in a weird way, she needed that relationship drama to exist to distract her from other things her life she didn't want to face. So SIL took advantage but at the same time, MIL was a participant, too.  You wouldn't want to be like your mom -that does not seem like a happy life.  You wouldn't want to be like your brother - sounds like he's got some issues, too.   You know who can escape that cycle?  You.  Do what you need to to do be proud of your own behavior, leave them to their dysfunction (you didn't cause it and you can't stop it). 

Also, do you have a therapist?  Now that mom is settled, I would STRONGLY recommend talking to someone kind who can help you work through the feelings and rage.  Also recommend an older book - the dance of anger - it really helped me see some patterns in my own rage and anger, very helpful for women in the context of family, especially. Dealing with these feelings - probably ones you've had for a long time that are exacerbated by this situation - can be chance to put your family stuff to rest. 

Posted: Sunday, April 14, 2019 2:19 PM
Joined: 7/12/2017
Posts: 1022

Im with mom had a full long life and her 50s and 60s she had no one to be responsible for, she could do whatever she wanted whenever she wanted and she told me she didn't ever want to be a damper on my life, so I try and take her at her word.  If she has a quiet day, so be it.  She has lived with us in our inlaw for 15 years, five with issues, three since diagnosis.   I want my time back!! And I am going to take it
Posted: Sunday, April 14, 2019 7:28 PM
Joined: 4/5/2013
Posts: 808


You poor thing.  Sure, it feels good to see that one's visits or deeds bring pleasure to our LOs, but when trapped in a lousy dynamic anyone could become angry and resentful!  You need to stop flogging yourself, evict your brother from your head, and take a nice long vacation from your mother.   Maybe upon your return she will act a bit kinder to you, and maybe not.   

If you are satisfied that all her needs are being met in MC, why can't you take a long break?  Does the thought of not seeing her for a month worry you?  If so, why?  Would you be willing to hire someone to act as your eyes & ears, and your mother's social companion / helping hand while you take a long break?  If so, maybe this is how it could work for you (or for someone else because you know darn right well that there are a lot of people out here reading this who feel the same as you!!)

1 - Find out who your mom's care plan coordinator is.   

2 - Ask her for a copy of your mother's written care plan, and for an hour of her time to help you arrange for "an extended absence."   

3 - Make a list of all YOUR caregiving tasks that are referenced in the care plan.  Then add everything else you do for your mother, and share the list with the care plan coordinator.  Omit tasks that you can do remotely, like bills.  As an example, my mother's MC care plan stated that I did her laundry and provided specific OTC medicines and supplements.  Tasks that were not on her care plan but still needed to be done included taking her to the beauty salon and doing her nails.  I am sure there are things you do for your mother on a regular basis that are not on the care plan.  Write it all down.

4 - Have an honest talk with the care plan coordinator.  My mother's care plan coordinator in MC was a wonderful social worker.  Social Workers are generally very well trained in family counseling, so don't be reticent about opening up to her.  Tell her you're depleted, need a break, and will be unavailable for one month, except for emergencies or significant changes in status.  Ask her to help you figure out who can take over your routine duties during your extended absence.  Which tasks can be picked up by existing staff?  Can she recommend a home health agencies or private pay companion to cover the rest of the list?  Maybe you can recruit someone yourself to "fill in for you" -  an old neighbor, a member of your church, a college student trying to enter the health care field? 

5 - Delegate and GO!  Call the staff weekly to see how she is doing.  Drive over and peek in without visiting your mother - if you must.  

I really sympathize with you.  Radar, I confess that I don't enjoy visiting my mother either.   She's never given me any clear indication that she enjoys my company.  Ever.  And that sad reality has shaped the nature of my approach to care giving.  I am her advocate and her decision maker.   I've always attempted to bring pleasure to her life, and only succeeded - before and after AD - by offering her something that she wanted for herself.  Which, in the absence of her mean behavior, was acceptable to me.  It is what it is.  All kinds of people become mothers, all kinds of people get dementia, and all kinds of people get thrust into a caregiving role (or escape responsibility altogether.)  Relationships between family members make a difference to how we approach things and how we react.  Your feelings are perfectly valid.  

Kudos to you for your honesty, hugs to you for your pain, and wishes to you for a well deserved break.


Posted: Sunday, April 14, 2019 11:32 PM
Joined: 12/17/2018
Posts: 104

Wow, what a rich thread.  I'll read it again and again.  Great advice...

My fav - so simple but so true:  "The long goodbye is complicated and difficult when the LO in question was also complicated and difficult."

And I'm going to order 'the dance of anger'.  I'm on the road to change and the thought of showing anger makes me cringe - hence the need to learn how to release it.

Best of luck everyone.

D in law
Posted: Monday, April 15, 2019 8:31 AM
Joined: 4/24/2017
Posts: 457

I can also relate to a dysfunctional family.  My husband hasn't visited his mother in 4 months.  Before she was placed he was spending 4 nights a week with her after her spouse passed away.  Normally, he would be viewed that he's a son who doesn't love his mother.   I don't feel this way AT ALL. There is no normal, so judging or resenting cannot be put into a context for anyone to understand.  She was a mother who had too many children with an alcoholic abusive man.  They never had a family dynamic, she was unable to properly care for and protect those children.  So,  I feel it comes full circle in ones life.  She was the daughter of an alcoholic father as well.  The damage inflicted never goes away.  My husband still recalls a conversation he had with his mother before she married husband #2.  Although all her children were adults by this time, he felt abandoned by the words she used. 

 My new motto is you can only do what you can do, and what YOU feel good about doing.   No more dong anything just because you are a son or a daughter and that it's a duty.   Don't be too hard on yourself.  Let go of brother, take a break from Mom.  Best wishes to you.


Johns baby girl
Posted: Monday, April 15, 2019 9:59 AM
Joined: 2/26/2019
Posts: 13

My brother lives 5 miles away and can only manage a visit about once a month.  Saturday he came for one of those visits and had my Dad so worked up, he was a mess for the rest of the weekend.  I will no longer wish he would visit!
Mimi S.
Posted: Monday, April 15, 2019 10:07 AM
Joined: 11/29/2011
Posts: 7000

johns baby girl:
Would a frank discussion with your bother help?  Sometimes people need to be educated.

Johns baby girl
Posted: Monday, April 15, 2019 10:57 AM
Joined: 2/26/2019
Posts: 13

Thank you for replying, Mimi.  Sadly, every time I try to educate my brother, his eyes glaze over and he changes the subject.  He does not want to become educated and chooses to instead roll his eyes at my Dad and say he is "blubbering".  Not nice.  I am sadly reminded  that compassion is not an emotion that all have in their heart, even one that was raised in the same home.
Posted: Monday, April 15, 2019 4:57 PM
Joined: 4/15/2019
Posts: 2

"Pictures of my siblings  and their families are out on display.  I just laugh.  She is not able to take care of herself and I am the one who stepped up."  lol.  I love it!!! It is soooo true

I am new to this site and I should have gotten some support some time ago.  Reaching out just seemed so hard and now I cannot hide behind my anxiety.  

I never have been friends with my mother nor her favorite.  I don't like her! That sounds horrible but it is so true.  When I was a child, approx. 35 yrs ago, I moved out of the house bcuz of her.  I could handle my father's hand over her personality.  It is so difficult to be the sole caregiver 24/7 when you have never liked her.   I never thought I would move back home to take care of her.  I moved in with them on my 25th wedding anniversary to take care of them & in a 1 1/2 years I have been home for about 5 minutes.  I have abandoned my life for her.  It was so much easier when dad was a live bcuz he would quietly ignore her bs.  He died in Dec.  Let me say "I moved in"...that means I live in the center of a room bcuz the dresser and closets are full.  that doesn't work with an OCD mother.

I feel like she would dry all up and die if I put her in MC.

I too am rambling but I need some of it off of my chest and I don't know how.  My personality is to fight back and tell it how it is to people, including her, without being all flowery. 

caregiving daughter
Posted: Monday, April 15, 2019 7:40 PM
Joined: 11/27/2012
Posts: 1988

Lavera, Sounds more like hoarding vs. OCD (anxiety disorder with repeated hand washing or similar). Sometimes keeping a lot of stuff goes along with dementia. Can you remove a little when she is not present so you don't have a huge tripping hazard?
Posted: Monday, April 15, 2019 8:30 PM
Joined: 4/15/2019
Posts: 2

It is hoarding in a very neat, clean, organized way.  To visit, you wouldn't know that every drawer is stuffed full.  No tripping hazard here unless it is in my room since I have no space.  Dad would support me on paper cleanup but with him gone all I get is an exasperated this is my house.  Does anyone want 1950 taxes?

If I am home, she is home.  She never goes anywhere unless I pressure her to go out to eat at a fast food place.  (She thinks it is cheaper than any sit down restaurant).  I have thought about doing it at night but I need to get my rest.  Dr has put me on sleeping meds. 

Posted: Wednesday, April 17, 2019 7:45 PM
Joined: 11/6/2017
Posts: 2

15 years?! There's no way I can make it that long. 15 months sounds like an eternity.
Posted: Saturday, April 20, 2019 2:15 PM
Joined: 5/30/2016
Posts: 561

The family dynamic plays a HUGE and devastating factor in dementia. My dear FIL will have passed away five months ago on the 27th, and my DH and I are still dealing with it. The only way to get around it is to handle you. Leave your brother to his own devices. You have given your mother love, support and care even before she was placed. Your life matters too and you best take back a good portion of it. You deserve to have a quiet day and a day of reflection. A day to remember the "good" things. There is, I'm sure good things and times to remember about your mother. Don't spend all day, though. Enjoy the meaning of the day. Pray for forgiveness and understanding.
Posted: Monday, April 22, 2019 5:48 PM
Joined: 11/20/2015
Posts: 355

kenleek wrote:
15 years?! There's no way I can make it that long. 15 months sounds like an eternity.

I quite agree and PRAY my mom doesn't last longer than 5 years. I guess my brother wound up going yesterday (though he didn't tell me, just texted me pictures). My mom didn't remember who he was (that's a first) she didn't remember my 19 year old niece either. My brother showed her a picture of me and she didn't remember me. I'm ok with that, I knew it was inevitable. I'm more upset by a couple of pictures my brother sent me. My mom looks awful. She doesn't walk, sits in a wheelchair or some other chair 24/7. She is swollen and bloated and she looked like jaba the hut in the pictures he sent me. I have been devastated every since. I don't know how I am going to to go back. I haven't been in about 5 weeks ( I make it once a month) and as I said he'd not been in 7-8 MONTHS!!! She's about 30 minutes away from us.

My heart is breaking just a little more, for a change. Sigh.


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