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<p class="userway-s14-active">So you all know by now about my mother, and my brother who lives 350 miles away and has refused to have any part of this nightmare. And everyone has told me he has a right to hold his boundary, etc. The problem is that he was also Unhelpful when my dad was dying in late 2021. I was the sole caregiver for three weeks as my dad became quickly and shockingly ill. It took three ER visits, and trying to juggle multiple outpatient tests before doctors finally admitted him and figured out he was dying of liver failure and probable liver cancer. my brother was willing to come, to appoint. My father kept telling me not to have him come, because he still thought he was going to get better. One of those appointment days during that time we had a difficult discussion with a doctor about a liver transplant. I texted my brother And asked to speak to him in real time, because he normally only wants to text. And his reply was “I’m in the middle of a noisy restaurant. “Another time, after he was here, and dad was in the last stages of hospice, he told me I had a “pathological ability to be negative. “ this was when he had been discharged from the hospital and then hospice told us he really should’ve gotten a port surgically. Installed to drain his extra abdominal fluid. Yes, I was fretting about the logistics of getting this done. I was under the impression we were going to have to transport him to outpatient labs and get him admitted, etc. For a 200+ pound man who could barely walk and stay awake. Given that I had already been through hell with him by myself for three weeks, I felt I was justified in whatever fretting I was doing. It was New Year’s weekend, he been hastily admitted to hospice by just an on-call intake, nurse, and we didn’t have any real information about the plan going forward.<p class="userway-s14-active">
<p class="userway-s14-active">So he’s done it again yesterday with the thoughtless comment. I was telling him all that’s going on with our mother and how difficult it’s been. And of course all the other elders that were requiring assistance in the past couple of weeks. And my brother actually laughed and said dad did us a favor by passing away, relatively quickly, and “why didn’t anyone just pass away in their sleep anymore? “ I do acknowledge that we only had about a month of hell with my father, so we did not have to deal at length with the situation, nursing home, watching him to suffer, etc. But what I cannot stomach is him chuckling about it. I went through so much by myself. The feeling of helplessness as my sweet strong, capable father, deteriorated so rapidly, and we did not know what was wrong with him, and no doctors were really paying attention. I think it’s one of the things making it harder for me now, is the feeling of being alone with this frail, elderly person, depending on me. And it’s complicated in my mothers case, because I don’t even actually like her.

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I can sympathize with you…it’s totally inappropriate to laugh about this tragedy…it just confirms even more that your brother has absolutely no clue what you have been doing for your father…it’s a lonely feeling…but you can’t make him into someone he’s not…I would get annoyed with my brother too because he hasn’t helped with caring for our mother…but he supports me in everything I do for her and helps in other ways…but a hands on caregiver…he’s not …he told me he thinks I’m amazing & don’t know how I do it …as he can’t. Don’t expect to get any understanding and/or sympathy from your brother as he seems clueless. Hugs 🤗
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I guess your brother has disappointed you. You've been good to him and he hasn't been good to you. So, now you know not to bother doing more for him unless you don't mind it being uneven. He might see this whole thing differently than you do which is OK. We all have different perspectives and can't expect others to have the same feelings we do.
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Can I ask you this...
Given the history that you have written what did you expect your brother to do?
It sounds to me, from what you have written, that he did just as you would expect him to do.
If you expected different that is on you.
A leopard does not change his spots.

And your dad is dead, there is no need to bring up the "what happened", the "what if's", or the "coulda or shoulda happened". Cuz you can't change any of that and to agonize over it will up set you and I am sure your brother has put it out of his mind.

Maybe consider a Skilled Nursing facility for mom so you are not an immediate "hands on" caregiver for her, someone that you "don't even actually like". You may do better as a care manager for her. This might be better for you physically, mentally, emotionally.
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Oedgar23 Sep 2023
I think the thing that got me about yesterday’s chat with my brother is him chuckling while talking about dad passing. I’ve introduced the idea of assisted living to mother. For now, she is sort of open but not willing “yet.” And if she’s not declared incompetent, it’s my understanding that I can’t make her, even as POA. And I refuse to be guardian.
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Sorry for the unexpected death of your dad. And that your brother is not that helpful. Don't waste much energy on that one. He is what he is and you are not gong to change this. Expect nothing from him and you won't be disappointed.

How old is your mother? She still lives alone? How often do you need to interact with her? Does she have caregivers? Since you don't like her, cut back as much as possible on the time you spend with her and on coordinating her care, etc. Find others to do what she needs. If she's capable, she can do more. Assuming she's not capable, hire other people to do as much as possible. Have her groceries delivered. Amazon delivery for everything else. Hire a cleaning lady. All with mom's funds of course. Your money is for you.

If she can not live independently, get her to move to where she needs to be.

Best of luck.
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Oedgar23 Sep 2023
Mother is 75. She lives in a house that is almost in a hoarded condition, though we plus the efforts of adult protective services have improved it. She’s a chain smoker, and I can’t stand being in there. She has a little bit of money, just a few thousand above the Medicaid threshold for assets. She had been getting a Medicaid housekeeper in there, but during this last reapplication, they checked her bank account and saw that she had too much money in there. She acquired the Medicaid before I was back in the picture. We have been estranged for 10 years. I have let her know that I was not comfortable with how she handled Medicaid stuff, and I want no part of it. It’s still not enough to hire caregivers on a permanent basis. She will blow right through it. I have to interact with her in person two or three times per week, between taking her to medical appointments and cleaning at her house. I am now involved in most of her medical care, because I need to hear for myself what the doctor says. She had major neck surgery in May, has bad osteoporosis that is being treated by a specialist, low blood pressure, and we are dealing with the aftermath of dental extractions and getting her dentures fitted. So I’m still in person seeing her frequently, and I find that if I don’t call her, she will call me. I get maybe one day off a week from not talking to her at all. she’s being nicer now that she is on Seroquel. But I know it’s just the medication, and I also know she can’t be relied upon to do the right thing, tell the truth, etc. Unless it suits her.
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Albert Einstein supposedly said "Life is like riding a bicycle, to keep your balance, you must keep moving".

For some of our situations, while caregiving, our own lives end up getting put on "pause".

As is often said on this forum, in order to be sustainable, a caregiving situation must work for all parties involved.

NAMI teaches families when they have a family member with mental illness, everyone else's life must keep going, keeping your own life going must be the priority. When we put our own lives on pause, we do lose our balance. One of the ways to recognize that someone is suffering from mental issues is that they stop moving forward. The reverse is also true, stopping the motion of your own life can cause mental distress and that can lead to depression and other mental health issues.

Caregivers have to take care of themselves because no one else will take care of them.
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I always say "Families are great until they aren't".

Sometimes, it's when we are under untenable stress that the traits in us that show who we are, underneath all our 'niceness'.

I'm finding that I am not that nice, as I am living through the hell that is a MIL who fights and fusses and makes her kids' lives miserable. The thoughts I've had--and not spoken, shame me.

A LOT of people 'laugh' when they are stressed. It's a coping mechanism. DOesn't mean your brother thinks this is funny, it's his way of coping. My YB was phenomenally rude to everyone when mom died. We all knew that was his way of handling some really deep, painful emotions.

I am so glad MY mom passed quickly and left no drama behind. every day I thank God for that! Did we 'chuckle' about the way she died? Yes, a little, in sort of a "Mom always got what she wanted" way--no meanness or disrespect intended.

The exhaustion that comes when you care for someone 24/7 for months on end is wearing beyond belief. You're at the end of your rope and your brother is not helping.

My YB also only answers emails or texts, and those only when he's in the mood--so it could be 2-3 weeks before he actually got around to communicating. So annoying that I finally just quit trying. Don't expect your brother to be anything other than what he has shown you he is.

Can you move mom to a NH? Caring for someone you don't even like would be so much worse, in my book. I don't know your backstory--but I sincerely hope she is not living with you.

(And--if it is any consolation about your dad (and I know it probably isn't) he would never have qualified for a liver transplant--due to age alone. You had no control over that-so please don't feel bad or guilty that didn't happen. I'm sure he suffered, but he is now at peace.)

If I were you, I would cease to loop brother into anything. He obviously can't handle it and he's just making life harder for you.

Good Luck in this journey.
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BarbBrooklyn Sep 2023
"NAMI teaches families when they have a family member with mental illness, everyone else's life must keep going, keeping your own life going must be the priority. When we put our own lives on pause, we do lose our balance. One of the ways to recognize that someone is suffering from mental issues is that they stop moving forward.".

This is CRUCIAL to remember!
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I really don't see how you can care for someone you don't particularly don't like. There are options. Compassion does not mean you physically care for them. It means you help in some way. You find them resources. You may buy them groceries. Take them to appts. You can find a nice LTC facility and place them on Medicaid. Be their advocate but not their caregiver.

I do give you a lot of credit. I would never care for someone I did not like. I would definitely have to put a wall up to be able to do it. Your brother, let it go. He has reasons why he does not want to be involved. Your it.
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Oedgar23 Sep 2023
It is very hard. I basically have to treat her as if I were handling a client. That’s the only way my head can get around it.
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Maybe your brother and dad did not have the same close relationship that you had. That could be why he is so much more detached about dad and how quickly he died. Unfortunately he is right it seems that people either die really fast or there is a slow decline that can last for years or even decades.

Your mother will make her own choices. Let her. Otherwise you may very well be killing yourself to take care of her for a very long time.

As it is you are already doing more than you thought you would to help her and now have 4 more elders waiting in the wings to completely envelop your life with even more care giving duties.
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Oedgar23 Sep 2023
The ONE comforting thing about the other relatives is they at least have the resources to pay for care. There will be no medicaid app,etc for them. They are also normal, helpful people.
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I feel your pain. It is a thankless job made worse when siblings cannot recognize the effort you are putting in and the grief. I had a similar situation with my brother, and it unfortunately estranged us in an uncomfortable way. I do read time and again on this forum that caregiving can rip your family apart, and the caregiver is the one who is always scapegoated --and they are right. One sibling ALWAYS takes on the bulk of caregiving, starting out sometimes with one rehab/ hospital stay...and then it escalates into years of caregiving.
And yes while your brother is correct that passing quickly is best, it is the heartlessness of his not recognizing YOUR pain and loss, likely because he has not experienced it yet, that hurts. By distancing himself physically, he can also distance himself from the emotions. He will never empathize--NEVER-- and likely never thank you for what you have done. I myself had to completely work on letting go completely of any expectations from my family (including nieces and nephews) because it only caused me pain. I had to stop reaching out and asking them to call, write , etc.
With your mother I--I am caregiving a very challenging mother who finally got on Xanax and Zoloft and it has been a big help. But I do wish every day for her to pass. For her and for me. It is not a happy place to be in.
And yes everyone wants you to stop but we know it is not always that easy. For me, it was making the decision between could I live with walking away from a suffering person who had no one else nearby to care for her--or would it be better to sacrifice for a short time (which can become a VERY LONG TIME--at your mom's age it could go very long)? It is a question only we can answer for ourselves. Everyone is different. I will say I am beginning to realize after 7 years of remote and 1 year of in-person caregiving a difficult person, that giving up my own life for hers was not the best decision and I need to re-evaluate (my mother is 98 and in hospice but I see no end in sight). But then I ask what I could have done differently and there are no easy answers. Modern medicine is keeping people alive past the point where they have any quality of life, and it's uncharted waters for many (eg: my mother's parents died at 54 and 76 so she has no idea what I am going through taking care of her).
I had a neighbor yesterday who understand what I was going through with my mother: "It erodes your soul slowly". She is correct. It is all we can do to not let it do so.
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Oedgar23 Sep 2023
Your answer was spot on . I relate to everything you’ve said! I also wish my mother would pass, for all the same reasons. And the soul eroding comment… yes very true. Thank you.
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Your last sentence says it all. You don't even like your mother, so why in the world are you the one caring for her? She may be "depending" on you but I hope you know that that doesn't mean that you have to be the one doing the hands on care.
It may be time to be looking into placing your mother into the appropriate facility where she can receive the care she requires and you can get back to just being her child and advocate(if you so choose that roll).
You obviously are overwhelmed and burnt out from the caregiving you've been doing and I'm not exactly clear as to why you feel that it has to be you doing the hands on caregiving.
Your brother(in my opinion)is the smart one here as he's choosing and maintaining the much needed boundaries with you and your mother.
Why do you feel that you don't deserve to set some boundaries as well? It's going to be your health that is suffering if you don't start making some much needed changes in your situation. I hope you're smart enough to realize that.

And I don't think your brother was out of line when he said that your dad did you all a favor by dying quickly because there is truth in that.
I've said about my late husband who had vascular dementia often since his death that I am grateful that he didn't have to suffer with it long, as vascular dementia is the most aggressive of all the dementias with a life expectancy of just 5 years, and he died after about 3 years with it.
And I don't say that to be mean, but to be honest as I've have friends whose loved one had Alzheimer's for over 20 years, so I consider myself and my husband blessed to have had to deal with it for a shorter time period.

And I believe that because you're now in a caregiving situation that you'd rather not be in, that it's coloring your view on things with your brother.
You too can set some much needed boundaries and I hope you will so you can get on with living and enjoying your life. And yes, that's probably going to mean that your mother is placed somewhere, and that's ok.
I wish you well going forward and doing what's best for YOU!
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