Should Distance/Elderly Aunts/Uncle Matter In Decision Making?

Wilted Daughter

I am living a nightmare trying to appease every whim/wish of my 91 yr old mom with dementia (stay in the community, etc.) while listening to her elderly siblings who live afar. 

The only support I receive is from local resources via state/federal programs. Aunts and Uncle only provide phone support to mom (lip service) and want to be kept in the loop on everything in my household. 

They come from a peculiar culture (bloodline) where backbiting, gossip, lying to your face, forgetfulness, control, and aggression is normalized (only the strong survive). 

I've decided that until this caregiving journey ends, I cannot associate with them and their children (the cousins). They are not here, they do not visit, and they do not provide HELP, but my mom sides with them over me. Me the one that is here, helping her stay in the house for 3 years without adequate help/breaks. I mean really...I asked a question that my intuition answers. 

I would love to hear your experiences...

Arrowhead

I haven’t had those experiences, but I believe that you have made a wise choice. Your aunt and uncle do not have to deal with it but you do. They have no idea what you are going through, and they are not qualified enough to even warrant an opinion. Forget about them. Do what you have to do to take care of your mother and don’t forget to take care of yourself. 

As for your mother, try to not be too hard on her. Her mind is broken and she is unable to understand all that you are doing for her or what they are not. However she keeps in touch with them, I suggest you find a way to remove it. I hope things work out well for you. 

SusanB-dil

I agree with Arrowhead - distance your mom from them. If they are in contact, she is still perceiving them as 'valid contributing family members'.  Since that is obviously not the case, remove the contact. Can you block the phone contact?

We had to 'trespass' certain family members who took advantage.  We found who the true friends and real family are in this mess.

GothicGremlin

This is a tough one, and is something I've grappled with since my sister was first diagnosed.

In the beginning I tried to keep everyone informed about Peggy, so that they'd know what to expect if they visited. Four years later, most of them have dropped by the wayside and my core "team" consists of me and two of Peggy's closest friends.  No matter how long I live, I'll never be able to thank them enough for everything they do.

My situation isn't as traumatic as yours, Wilted Daughter, but we as caregivers are living with a lot of stress. Why make it worse?  I haven't updated most of my extended family on Peggy's health status in a long time. If anyone cares to ask, I give them an update. Mostly no one asks, which is sad, but I just let it all go.

The only trauma that I have is dealing with my brother, who actively, but not maliciously, makes Peggy's life worse by giving her bad family news that is upsetting to her but that she can't process. I'm getting ready to legally cut him out of her life.  But that is another post for another time.

I guess what I'm getting at, is that at this point I try to do what is best for Peggy, and what is best for me. It sounds like that's what you're doing too - and I think you're doing the right thing, painful as it may be.

Ed1937

You will have to decide on how much to tell them (if anything), but you don't really owe them anything. They shouldn't be involved in decision making, unless you are asking for their opinion. All decisions are strictly up to you, and you alone. They have no idea what you do, and they have no authority to inject their opinions unless you specifically ask for them. If you do what you think is best, you are doing a great job. The fact that your mother takes their side just means that you are going through what many others here are facing too. The ones who are closest are usually the ones who get the short end of the stick.

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harshedbuzz

WD-

I am so sorry you are dealing with long-distance Monday-morning quarterbacking. 

I came to caregiving fresh off the experience of advocating for a child with special needs which left me very capable of creating and enforcing boundaries. I found myself in a position where I only had spoons for dealing with those who were Team Buzzed at times. This practice left me in a better position to roll with crazy friends and relatives. In fact, in what was likely the early stages of dad's cognitive shift I jettisoned him for several years for playing Devil's Advocate and attempting to derail interventions we'd put in place for DS.

When dad was finally diagnosed and we moved my parents closer, I dealt with a posse of "active seniors" in Florida who badgered me constantly about ruining my parents' lives by moving them. My mom almost died the winter before because dad was too impaired to recognize how sick she was or get her proper care. One woman, Anita, pissed in mom's ear regularly about how I was over-stepping. I did ask her to back off once and when she didn't, I blocked her calls on mom's phone. The rest of them stopped calling after a time. 

My dad's brother was a problem once we moved them north. He'd written dad off from his circle years before when dad was grieving the death of my younger sister (his mini-me) and was unpleasant to be around. Dad's grief and the onset of ES Alzheimer's (lack of empathy and social filter) overlapped, and he alienated many in this period. There was some real guilt and also denial that drove my uncle to question every care decision we made. I anticipated this and even selected a MCF for dad that was in his town rather than mine or mom's in order to avoid charges that I made it difficult for him to visit. Which he did once or twice. When dad went to rehab after a hospitalization, my uncle arrived ahead of us and complained that the 5-star facility was not bright or cheerful. 

I was fortunate that he didn't agitate dad with his opinions or grill my mom about our choices and make her feel worse than she already did. My DH and mom believed I was making this nonsense up until they both happened to be around when I put one of his calls on speaker and let them get an earful. Uncle complained that dad wasn't "ready" for MC. I countered that mom, in the interest of protecting dad's dignity wasn't sharing how gnarly things had gotten. He complained that dad didn't have a TV and said he'd be providing one. I shared that dad was confused by TV, believing that he was part of the crime shows or experiencing weather disasters.

In your shoes, I might block calls on mom's phone and ring them up when you can listen in and control the conversation. If you feel they need/deserve updates, you can create a private Caring Bridge site or sent a group email update from time to time. If people aren't supporting Team Wilted, limit their interactions and access. 

HB

Battlebuddy

   Victoria 2020 , 

  I loved your post about the tropical island . I’ve been comparing our caregiver experience to being in prison , but now I’m going to switch to the tropical island analogy lol.  You gave great advice . 

  I just wanted to add one more voice saying give out as much info/ updates as YOU want. Whatever  works for you.  I no longer give out updates to my husband’s family. Last year at this time my husband was having seizures . The first one was so scary. I posted on a family chat site that my husband had a scary seizure to keep family updated. No one asked me about it , came over to see him , or asked for details. 

   So that was the straw that broke the camels back. Decided I was not going to update anyone on what was going on. I’m not going to accept “ advice” from them either. It is not advice that comes from knowing what’s going on, just Monday morning quarterbacking .

   Sometimes you just have no put a little distance between you and people who make your job harder .  

Wilted Daughter

Thank you ALL for your very helpful responses!

Mom and her siblings have always been a odd posse, and I always remember them as being bullies, gossips, arrogant, fabricators, controllers, etc. (people who it is best to limit contact) as they live in glass houses with tunnel vision and lack of self awareness (Anosognosia). 

I've been trying to deal fairly with the troubled (3) for years, but as they age and limitations are implemented they become more aggressive. They do not listen to me nor respect me but demand high respect in return. It is suspected they too may be experiencing cognitive decline due to their ages and known disabilities, but nobody wants hear that they may have dementia too. 

Things happen for a reason and although it caused considerable hardship to mom and me it  allowed me to draw a hard line in the sand. The (3) troublemakers are blocked from calling our phones, and I will inform them of mom's status, if deemed necessary, through my cousins by text (let them deal with their parents). Since the uncle caused the most damage to date, I notified his wife/children by email with documented facts (copies of emails) and the police regarding his threats. 

I like the "island" analogy instead of "prison" as it relates to caregiving, but my experience feels more like a prison (restriction to freedom, personal space, independence...). Either way you're stuck... I have been planning for my rescue financially, mentally, and spiritually from the start of this journey, at times it seems hard to envision. It is hard to foresee my future and caregiving for my mother (female patriarch) with dementia can have a negative long lasting effect. It's a new year, I've learned from mistakes and cut the ties that bind. 

"The future belongs to those who believe in the beauty of their dreams." - Eleanor Roosevelt 

CanyonGal

 I use email, time and date stamped. Lawyers advice. And you choose to respond to any emails. 

Texting in my experience ended up being merged into group text and I became like an employee of the family, having to meet demands and requests, because they knew best? People who are absent from being involved with my mother’s care, unaware of her medical and mental problems from being uninvolved, have no right to ask you to do more. Instead they need to be supportive. It should be what can I do to help. For me, it became a gang up on the person who is doing all the care.

And that also goes for friends of the dementia person, who think if she just has more stimulation in AL she would not decline! She wasn’t stimulated or doing anything when she was living at home either. It’s a mental disease that is progressive, not fixable.

dayn2nite2

If people are not providing the 2 M-words, namely Money and/or Manpower, then they get no say in care decisions and if they are interfering, they get very little information.

As to the other M, your mother - you can only appease to the point where it makes her safer or keeps you sane.  If staying in the community is a time-suck for you, is a cost for you, or causes you to constantly be on alert for the next disaster, then you need to put yourself first and do what makes sense because your mother has lost the ability to do that.  If that means a facility, then that's what has to be done.

Wilted Daughter

dayn2..

I am a bit regretful that it came to this as they are all elderly and my uncle is a 79/80? years old and a Vet...but a bully.

Regardless they have pushed too far. As stated they do not help my mother stay in the home nor help me with anything without making it worse. They do not want to visit if they have to check with me first (rather show up with a car full/unannounced). 

I have disassociated from them with no regrets. No calls, no visits is fine...mom can call them if she wants, but they can no longer have access to me or expect anything from me. 

This whole situation is a "time suck" and physically, mentally, and spiritually draining. I made that clear to my mother, I cannot take care of her, them and me.