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Littlesistercg Asked April 2021

I have to leave my sibling with dementia - How do I do this and get beyond the guilt?

My older brother, 62 has some form of dementia. He is in firm denial of that. Says he has a head injury although there is none. He is alone. He has never been capable of a long term relationship because he is a borderline narcissist. It is ALWAYS about him. I have been taking care of bills, appointments, being his listening post (he calls me 2 to 10 times a day) and logistical stuff etc for the past 5 years. I have never taken a penny from him. I have done it because I felt I needed to as no one else would. My other brother lives in another country, has married a very young woman there and fathered children and is also a narcissist (I pray I am not one as it does seem to be a trait!). Job changes and Covid have made it so our finances need a boost. My husband and I will be doing a job that requires us to be out of the state about 80% of the time. I am having terrible guilt issues about leaving. It is bad enough that I won't be able to visit my children and grandchildren as often as I do now. I will not ask them to help. He is NOT their problem and frankly he is not nice and very, very difficult to spend time with. I never leave him without feeling exhausted and headachy. I have asked him about hiring someone to come in a couple of times per week, but he refuses. He is still capable of doing most things around the house, but I do not think he can handle appointments, he probably shouldn't be driving and I know he will get depressed. How do I force him to get the care he needs? I am afraid my anxiety from all of this will kill me or lead me down the same path. It is terrifying. When do my duties stop as a sister? How do I get out from under this? How is he my problem? If he had been a better person he most likely would have someone in his life to care for him now (who I would support whole heartedly!). How do you get beyond the guilt of leaving?

AlvaDeer Apr 2021
You are not a felon. So there is no need of guilt.
You are a person with limitations and you just bumped up against them.
The other G word you might try is grief. Grief for your brother and his life and where it has led. He is only 62. Without a diagnosis you cannot know if he truly has dementia. If so he will need to go into care as it is early onset. That is something you will never get him to do. A fight for guardianship will likely see you losing, and if you WIN, then what?
It is time now for him to take care of himself as he likely has another 3 decades of life left. He may have dementia; he may have mental illness. But he is unwilling to seek care. Are you willing to sacrifice yourself and your family for another 30 years? I certainly hope not.
If he isn't doing OK, and this is reported to you by family remaining in the area (you are correct not to involve them in his care) them report him as an adult in danger to your local APS. He may need the guardianship of the state.
I cared for my wonderful brother in his last years to the extent I did POA and Trustee of Trust for him, and supported him in all ways I could, but as I said, cooperative and wonderful to the inth degree his entire life.
I think you need to move on with your life. If your brother needs help then there is the entire state to help him with his ongoing problems.
You have enabled him to call on your to the extent he is monopolizing your time on the phone. This doesn't help HIM and it doesn't help YOU. It is time to gently explain to him the facts of life now. Turn your phone off after being certain your bro knows how to dial 911 in an emergency. Tell him you will check in with him in a.m. or p.m. but as far as HELP, that now is something he must negotiate on his own.
As Beatty here always says "There will be no solutions as long as YOU are the solution."

SoVeryExhausted Apr 2021
I'm probably not quoting this correctly. Someone on this forum once replied *its not necessary to set yourself on fire to keep someone else warm* that statement really hit home for me. If I hadn't got my mother into a NH hours before the lockdown on March 16th 2020 I know I would have had a serious health event. Its not fair to your husband/kids/loved ones for him to take all your time and energy. If he's able he needs to take care of himself. If not he needs to live somewhere that he will be taken care of. I had 3 years of extreme stress from a narcissist mother. The last Christmas with her was a nightmare. I finally took her home and had a mini breakdown. I didn't get to spend time with my oldest son who was a fire captain and had to go back to work. I said I don't know when I will ever get my 3 adult kids together for christmas again!
He was murdered a month later. Don't waste time with guilt. Take care of you ❤
NeedHelpWithMom Apr 2021
I am so very sorry for the pain and grief you have endured.

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funkygrandma59 Apr 2021
You asked a good question when you said, "how is he my problem?" How is he your problem, and why? Your brother has made his bed, and well, now he's going to have to lie in it. You didn't do this to him. He did it to himself.
You have your own family to have to worry about, it's really not fair that you have to adjust your life around his. He's going to have to figure out(for himself)what if any additional care he's going to need while you're out of the state. And honestly I think that will actually be a Godsend you being away, as it will force him to be open to other options for his care.
And as far as him calling all the time, please quit answering. Let his calls go to voicemail, and then you can decide whether or not to respond. He needs to find a life outside of you, as you have your own life to live. You've got nothing to feel guilty about, because you are doing nothing wrong. It's time your brother grows up and starts taking responsibility for his own life. Best wishes on your new job.
Riverdale Apr 2021
These were all exactly my thoughts so I feel my reply would make sense. Not only is he not her responsibility but his manner of behavior doesn't deserve her worn thin time.
Chellyfla Apr 2021
You have enabled your narcissistic brother every step of the way. Despite his supposed dementia, like all narcissists, he will find someone to exploit. Stop
making it easy for him to exploit you. You are doing him no good at all by waiting on him hand and foot. Go about your business and forget about him. He will figure it out on his own, believe me. I have a bipolar narcissist brother in my family. When I finally dropped him on his head, he got treatment and became self sufficient, but unlike your brother, he never asked for help. When he got in enough trouble, someone would call me to get his ox out of the ditch. Now he’s on meds, he’s stable, but I will always wait for the next shoe to drop. You will too...and it will eventually. But in the meantime, live your life for yourself and stop making it worse by treating him like an invalid. What he has probably isn’t dementia. It’s probably just a ruse to get you to do all the work for him. Neglecting your own family to take care of a family member who won’t take care of himself is wrong. I’m sure your husband is pretty tired of the martyr role you are playing by now.

Geaton777 Apr 2021
He has not forced you to help him. You are most likely not a narcissist, should not feel guilty, but are definitely an enabler and possibly co-dependent. He isn't your problem. Isn't isn't isn't. He may not have "been able" to have healthy relationships, but was he able to hold down a job? If so, then he had enough IQ to ponder and prepare for his future. If he didn't do that, that's on him. This is the retirement he chose so let him have it in its fullest. Maybe then he'll rise up to take responsibility for himself.

One of my struggles is that my "love language" is Acts of Service. This can easily translate into enabling and I have a difficult time distinguishing between the 2. You are probably similar. Nonetheless that is now water under the bridge for you as you move on with your lives. You can now lightly "assist" him in replacing what you've been doing for him with other options. He won't like it. Won't won't won't. Nonetheless, you tell him a firm date when you are completely extricated from providing any help. Don't drag it out, make it 30 days which is perfectly reasonable. He is very young for dementia but could have ALZ or something else or maybe he did have a brain injury -- it would be helpful if you provided the details of his symptoms. No matter...if he refuses to go to the doctor, there's nothing to be done. He will try to emotionally blackmail you, manipulate you into continuing on but you must not. Just smile politely and say, "I can't possibly do that" and don't engage in any further arguing or negotiating.

Also, if you are not his durable PoA or legal guardian you won't ever be able to "make" him do anything for his own good. So, there's that. For some problems, there are just no perfect, or even good, solutions. That's just life. There are safety nets for people like him called Social Services and Medicaid. All you can do is warn him of probably outcomes if he doesn't take actions to help himself now. If you do that you should be totally able to go to bed at night with a clear conscience. I don't think what you feel is guilt, but maybe deep concern, fear and sorrow, which is understandable for a sibling you care about. May you gain much wisdom and clarity and have peace in your heart as you make your own family your priority.
disgustedtoo Apr 2021
"...if you are not his durable PoA or legal guardian you won't ever be able to "make" him do anything for his own good."

Clarification - mainly for those who are new or who haven't gotten to this point yet: POA does NOT give anyone the ability to "make" anyone do something they don't want to do, like move, per our EC atty. POA only gives you ability to "act" in their stead for financial and medical issues.

My mother was refusing to consider moving anywhere. Despite having done up POAs many years prior, the atty told me we could NOT force her to move and suggested guardianship. Certainly we would not have "forced" her, aka take her kicking and screaming. I also don't believe her dementia was far enough along to be granted guardianship (but was not an option anyway because facility chosen wouldn't accept a committal.) However, it was not being safe for her to remain in her place alone. There are ways to get some agreement (fibs worked with her!) Even staff in MC told me they weren't allowed to force anything on residents, but rather had to try, coax, whatever worked to get compliance.
Beatty Apr 2021
It would be good to know why the Brother needed all this help going on 5yrs?
But I'll just observe from the info already supplied.

"My older brother, 62 has some form of dementia".
He is in firm denial of that."

**What is his diagnosis?** Can be lack of insight, rather than denial if dementia. Google Anosognosia.

"Says he has a head injury although there is none."
**?? Is this how he understands his problems** Can he explain this? Maybe it IS a brain injury? (Stroke? Accident? Alcohol damage?)

"He is alone."
**There are professional services to help him**

"I have been taking care of bills.....logistical stuff etc for the past 5 years. I have never taken a penny from him. I have done it because I felt I needed to as no one else would".
**This was your choice made at the time.** That is OK!! But also OK to re make a new choice going forward.

I think good communication is what will help here. Clear communication with your brother & his medical team.

I would ask your brother if he wants your ongoing help. If so, tell him you need the FACTS. His actual DX.
If he wants you as POA /MPOA get that done (if not already).

If he cannot or will not, then you cannot preceed. Backup out of caregiving. Hand him over to his medical team instead.

Advice his Doctor in writing of his situation. That you wish to help him but have no legal ability to do so. That he is vulnerable, unable to self-care & needs a social worker & case manager to arrange his care going forward.

How does that sound? Are there barriers to talking to your brother first?

OldAlto Apr 2021
Who wouldn't want someone acting as their personal servant? It doesn't sound like your brother is under any medical care or advice regarding dementia, you say he can take care of himself except for driving. However, it sounds to me as though he IS taking care of himself just fine by having you do all the hard things in life for him. Other than the driving issue - which could put others in jeopardy - he should take responsibility for himself totally. There is Uber and cabs and buses if he needs to go somewhere. The problem is your self-imposed guilt. Only you can find a way out of that. He is taking advantage of your kindness and manipulating you into feeling guilty. Sit down and think about it, realize you have to extricate yourself from this situation and then do it. Neither he nor anyone else is going to or can do it.

JanisLW Apr 2021
I have been reading for some time and decided to put in my 2 cents. Your children (grandchildren) are growing up fast and you are never going to be able to go back in time and give them more of yourself. Your husband is the one who will be there for the rest of your life, if you are there with him. Your brother is not your future. Your husband and kids are. After 5 years there should have been some medical or mental changes that a Dr would be following. You really need to talk to his Dr. You are reacting from emotions and not facts. Exactly what is his diagnoses? What were the Drs recommendations? Who told you he can't take care of himself? Stop listening to your brother. He does not have the answers. Your brother isolated himself. It is not your problem he has no friends. Now, who pointed their finger at you and said "he is your problem? And why are you supporting him financially? I believe you mentioned something about your own finances. Are you spending your families money on your brother who is not grateful at all? When we help someone financially, we should be getting something in return. All you are getting back is guilt. Doesn't your brother have any financial support of his own? He should be adapting his life to be able to live on the money he has. The state and federal government have many sources to help people of low income. I know. I live on SS only. My mom died a few years ago at 98. I learned to turn off the emotional side and face reality and facts occasionally. The results were a shock. Try it. Something you started 5 years ago as a way to help your brother has mushroomed out of control. Little by little you allowed him to manipulate your emotions, taking you away from your family, and getting the rewards himself. He is selfish and you need to stop this cycle. Don't feel guilty. If anything he owes you for all the time and money you have spent on him. Give your husband and kids back the time you lost, feeling guilty you were not giving your brother enough. Focus on your own needs now. Your brother will be fine.

Taarna Apr 2021
You have made a very good case that your brother is taking advantage of you, but not a good case that he has dementia.

Does your brother actually forget to take care of himself or does he "expect" you to handle these tasks? If he actually forgets, he will need an evaluation by a doctor to diagnose dementia. If he is diagnosed with dementia, you can then contact APS to take over his care. If he has been leaning on you all these years, show him how to do all the tasks you have been doing. Then, STOP doing these tasks. He probably has some mental health issues but he will need to want to change in order for psychiatric help to make a difference.

You need to stop feeling guilty about leaving. You are taking care of yourself and your family - which are higher priorities than your self-centered brother.

NeedHelpWithMom Apr 2021
You have given him help from the kindness of your heart.

This doesn’t mean that you have to continue to help him for your entire lifetime.

Clearly this is taking a toll on you but you do not need to feel guilty about anything.

Perhaps, you feel badly for his situation and that is certainly understandable but guilt should not enter the picture because you haven’t done anything to warrant feeling guilty about.

Be at peace. You deserve it. You have helped but there comes a time when it is equally important to let go.

Trust that he will find the help that he needs when you are no longer available.

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