Mills Family 5: YouTube Really Is Optional

[SilverBeach]

One thing that experiencing so many of my friends and family dying has done is normalize it. It still seems out of order when children dies before parents, but I know so many that has happened to, including my own mother. Death can be random. Death can be a relief, like when it ended my beloved mother's suffering.

Hospice workers are a wealth of information about the dying and grieving process. For me, knowledge is power. We all cope the best we can.

[Momma's In Charge]

On 1/24/2020 at 8:19 PM, OyHiOh said:

Just saying . . . . the "death and dying are private" thing . . . . well that mentality leads to caregivers, friends/family, and people approaching death feeling incredibly isolated.  Conversation, yes, in public forums like this one, about our experiences of living and death ease our own isolation and make death just a little easier for the next person whether facing their own or that of a loved one.  Not everyone handles that conversation well (looking at you, Tom) but that doesn't mean we should not share details of experience and what we felt.

For an hour after Mr Oy passed, I sat with my arms wrapped around one of his.  I don't think anyone could have pried me away if they'd tried.  A couple people I've told this to have said they thought it was a "weird" reaction.  I tell that story because someone, eventually, is going to sit next to the bed of a loved one who just passed or is close to, and wonder if it's weird to sit the way I did.  No, no it's not weird.  It's only weird because we don't talk about our experiences of death out loud.  

I'm so sorry for your loss. I totally relate to the isolation and get angry at being judged for how I grieve. The woman who made the comment about her husband actually was helpful for me. To know I'm not alone in some of my own thoughts was reasurring.

My sister had a stroke during brain surgery on a tumor, and the doctors couldn't get it all. She may have to go to hospice because she was already in frail health and isn't progressing. She is paralysed on one side and having delusions and hallucinations. We tell her what she is seeing isn't real, and she gets offended and says we think she is crazy. One day she speaks lovingly, and cracks jokes. The next day, she says tells the person caring for her that day is trying to harm her. Or she will say that the person who was there with her the day before is never around and doesn't care about her anymore.  Our family members take turns staying the day and night with her, so we know who comes and goes. Her husband does what he can, but if he loses his job, she can't get medical care. She often says he's not around and doesn't believe she is sick. He's been run ragged helping her.  I trade days with him and my mom so he can have a good night's sleep and keep his job. I also have a husband, kids, and a job. I use vacation to stay with her, but my work piles up if I'm gone. So I work 10 hour days to catch up which means my family barely sees me sometimes. I wouldn't do anything different, but when she thinks you weren't even there or that you don't care for her, it hurts! We know it's the tumor, and stroke talking, but we hurt for her thinking we don't love her, or that all our sacrifices weren't necessary. She is only in her 40s, so it makes it so much harder to see her this way and accept it. 

I agree, way too much is kept out of the everyday conversations when it comes to being a caregiver. It's comments like OMG's that further isolate those that are in so much pain it feels debilitating. I hope the person who made the original comment reads this and feels the love and support. 

[Momma's In Charge]

22 hours ago, can'tstopwatching said:

I was wondering if he saw the comments about his pronunciation on here when I heard this. But this isn’t an excuse, as I said he got multiple word endings totally wrong ? I don’t even know modern Greek so that’s not the issue!

So interesting! I'd love for someone like you to tell him he's wrong, he's just so incredibly arrogant! It's probably not worth the effort, though, and his minions would be sure to attack you. Anyway, I'm glad you shared your knowledge here and I hope you continue to. 

[3splenty]

27 minutes ago, Momma's In Charge said:

I'm so sorry for your loss. I totally relate to the isolation and get angry at being judged for how I grieve. The woman who made the comment about her husband actually was helpful for me. To know I'm not alone in some of my own thoughts was reasurring.

My sister had a stroke during brain surgery on a tumor, and the doctors couldn't get it all. She may have to go to hospice because she was already in frail health and isn't progressing. She is paralysed on one side and having delusions and hallucinations. We tell her what she is seeing isn't real, and she gets offended and says we think she is crazy. One day she speaks lovingly, and cracks jokes. The next day, she says tells the person caring for her that day is trying to harm her. Or she will say that the person who was there with her the day before is never around and doesn't care about her anymore.  Our family members take turns staying the day and night with her, so we know who comes and goes. Her husband does what he can, but if he loses his job, she can't get medical care. She often says he's not around and doesn't believe she is sick. He's been run ragged helping her.  I trade days with him and my mom so he can have a good night's sleep and keep his job. I also have a husband, kids, and a job. I use vacation to stay with her, but my work piles up if I'm gone. So I work 10 hour days to catch up which means my family barely sees me sometimes. I wouldn't do anything different, but when she thinks you weren't even there or that you don't care for her, it hurts! We know it's the tumor, and stroke talking, but we hurt for her thinking we don't love her, or that all our sacrifices weren't necessary. She is only in her 40s, so it makes it so much harder to see her this way and accept it. 

I agree, way too much is kept out of the everyday conversations when it comes to being a caregiver. It's comments like OMG's that further isolate those that are in so much pain it feels debilitating. I hope the person who made the original comment reads this and feels the love and support. 

I was wondering, would your sister qualify for home health or respite care?  I worked for an organization that provided that, and it was a lifesaver for the family.  The parents (patient was a young adult) could leave the house--go to work, go for a walk, take a nap--while someone else helped with their child.  I could be the "bad guy", doing the things that needed to be done, which took some strain off the parents.  

To be a good caregiver, you have to take care of yourself.  Even if it's getting your hair cut/styled, a massage, long bath, work out, anything.  As long as it recharges your batteries.  Asking for outside help is a sign of strength--its not selfish.  Ask her doctor for referrals.

Allow yourself to grieve however you need to.  Grieve as long as you need to.  There's no timeframe for grief, and anyone who tells you otherwise is mistaken.

Edited January 26, 2020 by 3splenty

[SilverBeach]

7 minutes ago, Momma's In Charge said:

the "death and dying are private" thing

As I posted before, for some it is. There are degrees of privacy that work for different people. Some people would rather go to in-person support groups, read books, get individual counseling, and do other private activities to cope with loss. Some cannot stand being the center of attention at elaborate funerals. It doesn't help them. Didn't help me, so I declined to do it for my mother. I have no judgement for those who are helped by these rituals.

9 minutes ago, Momma's In Charge said:

Conversation, yes, in public forums like this one, about our experiences of living and death ease our own isolation and make death just a little easier for the next person

This isn't across the board, but it's good when it works like this for those it works for. I don't know that I've felt isolated, or that anything has made my losses any easier as they have all been different.

I don't judge those who would rather not put their grief front and center, and I don't judge those who want public discussion. We are all different. Those who are helped can participate in death discussions and others can elect not to. It's OK.  No one should be criticized either way. Those who don't aren't trying to make death taboo, they are just doing what works for them. Some don't want to be reminded of their losses all the time. 

Sorry for any misattribution of quotes, quoting a quote can be problematic.

[OyHiOh]

1 hour ago, Momma's In Charge said:

 

I agree, way too much is kept out of the everyday conversations when it comes to being a caregiver. It's comments like OMG's that further isolate those that are in so much pain it feels debilitating. I hope the person who made the original comment reads this and feels the love and support. 

A close friend of mine struggles mightily with the caregiver side of the coin (being a primary caregiver).  It is incredibly difficult work and terribly undervalued made worse because most of us don't talk about it.  Just as with mental health, erasing the stigma begins with talking about our experiences.  

[SilverBeach]

24 minutes ago, OyHiOh said:

A close friend of mine struggles mightily with the caregiver side of the coin (being a primary caregiver).  It is incredibly difficult work and terribly undervalued made worse because most of us don't talk about it.  Just as with mental health, erasing the stigma begins with talking about our experiences.  

I was my elderly mother's caregiver for years. I never felt a stigma, just that society as a whole does not support the needs of the elderly or the people who care for them. It is terribly undervalued work, that if not for the love of my mother, I would not have been able to do. This society worships youth and likes to shove older people into the corner, out of sight out of mind. I worked full time and was raising a child as a single parent while caring for my mom, typical sandwich generation. Hard as hell. I have no problem talking about it. 

Edited January 26, 2020 by SilverBeach

[Palimpsest]

1 hour ago, Momma's In Charge said:

I agree, way too much is kept out of the everyday conversations when it comes to being a caregiver. It's comments like OMG's that further isolate those that are in so much pain it feels debilitating. I hope the person who made the original comment reads this and feels the love and support. 

Agreed.  With your whole post not just this part.  I'm so very sorry about your sister.  That must be incredibly hard for everyone.

Just so you know, we have a club for caregivers.  It's a closed group so it is a much safer place than public FJ.  If an OMG-type unfortunately sneaked in I'm sure they'd be bounced in a second but that has never happened yet!  I'm not actively involved in the group because my caregiving days are over, but I sometimes drop in to see if I can be helpful.  They are a very supportive group of some of our nicest members and there is a wealth of information there.

If you look to the left below my avatar you should see "my clubs."  Look for the second row first left beehive (IIRC) and click the link.  It should take you straight to the caregivers group.  You may have to wait a bit for approval to join but it doesn't usually take long.  

Also, I want to put in my own plug for Hospice.  We used Hospice services for my in-laws and they were incredibly helpful for both the dying person and the whole family.  Practically with huge amounts of information and service provision (including respite) but spiritually too.  They also provide some services and grief therapy groups for the family after the patient is gone.  

I was so impressed by Hospice that I volunteered with them.  I found it incredibly rewarding.  And also life affirming, if that makes sense.   I should get back to it.  

To be eligible for Hospice people have to have a terminal dx and an estimated less than 6 months to live.  My MIL actually outlived the 6 months, but Hospice care continued.  It is also palliative care only (no extraordinary methods).  I'm not sure where your sister would be eligible yet or you want the services yet, but it is an option well worth exploring in advance. 

Take care, and my best wishes to your sister and your whole family.

[SilverBeach]

7 minutes ago, Palimpsest said:

Also, I want to put in my own plug for Hospice. 

I can't speak highly enough about it. Just angels, everyone I met in the program. Support extended one year after my mom died. 

[feministxtian]

Caregiving was one of the hardest things I've ever done. It just plain sucked. Especially when he couldn't be left alone for a minute. Hospice was a godsend. They had the ability to order meds and necessities and they'd be delivered within hours. They also had an inpatient facility where he spent his final 3 days. At the time he was there, they had a low patient census so he pretty much had someone with him all the time when I wasn't there. He was given comfort care, monitored for any sort of pain response (he was in a coma), and at the end when he was struggling to breathe, they gave him meds to relax him. Admittedly, those meds would interfere with respiratory effort but well... He wasn't subjected to any more tests, blood draws, nothing. It was peaceful. I wasn't there when he passed, I had gone home to bed, but by the time I got there, he'd been bathed, had a clean gown on, his bed was freshly changed and he looked like he was asleep. So, the last time I saw him, he looked like he'd fallen asleep. It made it easier for me. By that time I was exhausted and a wreck emotionally. Now, almost 5 months out, I miss him like someone amputated half of me, but it's time to LIVE!!! I will always love him and he will always be my husband. 

I moved my wedding rings to my right hand recently. It just feels right. 

[apandaaries]

My father passed when I was 21, and I still miss him. The most important thing I took from that experience is that we all grieve differently. I hated his funeral and was very much focused on the anger aspects of the grief spectrum. That was my personal response at that time; I’ve experienced many other emotions about his passing since his passing. 
Losing a life is world-cracking (if not braking) experience.
My thanks to all that have shared about the devastating last days with loved ones. Death is guaranteed (even more so than taxes!) but that doesn’t make it any less painful.  Death is where we all kind up, no matter how we lived our lives. 

(I’m also sadly more shocked and saddened by Kobe Bryant’s and daughter’s passing than I thought I’d be. Lots of mortality on the mind today.)
Here’s hoping that we all spend some time with loved ones while we can. I despite clocks, but I love the time I was able to spend with those who loved me and whom I loved in return.

[Momma's In Charge]

5 minutes ago, 3splenty said:

I was wondering, would your sister qualify for home health or respite care?  I worked for an organization that provided that, and it was a lifesaver for the family.  The parents (patient was a young adult) could leave the house--go to work, go for a walk, take a nap--while someone else helped with their child.  I could be the "bad guy", doing the things that needed to be done, which took some strain off the parents.  

To be a good caregiver, you have to take care of yourself.  Even if it's getting your hair cut/styled, a massage, long bath, work out, anything.  As long as it recharges your batteries.  Asking for outside help is a sign of strength--its not selfish.  Ask her doctor for referrals.

Allow yourself to grieve however you need to.  Grieve as long as you need to.  There's no timeframe for grief, and anyone who tells you otherwise is mistaken.

Thank you. I sometimes just lock myself in a room to cry. Overall, I think I'm ok until something triggers me and I just get so upset I feel nauseous. My mother and brother in law have taken on most of the caretaking. I live 2 hours away, so I feel incredible guilt over not being able to help more. My mom thinks it's her duty, even though she is in her 70s with her own health issues, and my brother in law feels guilty for not being able to do it all on his own. 

I've never heard of respite care. I'll look into that. Unfortunately, she's nowhere close to being able to come home, unless a nurse lived with them. My sister needs meds to fight infections, monitoring, and skilled nursing care. Their insurance will only pay for the palliative care at the specialty hospital she's in for a few more days, then she is expected to be able to handle more physical therapy at a skilled nursing facility or she will have to go to Hospice. My brother in law will have to pay for her care out of pocket if he wants to do anything else. No one in our families have near enough money to help him do that for very long, and we've already raised money via a GoFundMe in the past. Our friends and family have already gone above and beyond with their generous financial support. 

She did just get approved for Social Security Disability so we are hoping she will qualify for Medicare or Medicaid (not sure how that works). We hope they will help us with more ideas and options.

Thank you for your kind words!

[3splenty]

Aw, you're welcome!  Another thing--insurance is more apt to cover hospice if its termed as comfort cares instead of hospice.  I learned this from a coworker the other day.  Also check with the social workers.  They have lots of information.

Family and friends have a specific job (in my view as a nurse)--focus on the quality time.  My job is the physical cares, meds, etc.  You be there to reminisce with your loved one and others, support each other.  I'll have your back and be there when you need me.

[Jasmar]

Quote

If you look to the left below my avatar you should see "my clubs."  Look for the second row first left beehive (IIRC) and click the link.  It should take you straight to the caregivers group.  You may have to wait a bit for approval to join but it doesn't usually take long.

Thank you for this. I’m caregiver to my 22-yo daughter, who has several non-curable illnesses, and it’s so freaking isolating, lonely, people don’t understand etc. I just applied to join.

[Palimpsest]

1 hour ago, 3splenty said:

Another thing--insurance is more apt to cover hospice if its termed as comfort cares instead of hospice.  I learned this from a coworker the other day. 

Yowser.  Or holy shit.  That's a new one.  Hospice IS palliative AKA comfort care but with extra bells and whistles for the family.  But health insurance is forever moving the goal posts. Grrr.

You had me googling and reading the fine print on my own health insurance to check whether it covered Hospice.  Luckily it does but I'll keep on a-checking!

Re: Medicare and Medicaid coverage -- it is really confusing for many, 

 I used to know this stuff like the back of my hand but I'm not up-to-date on recent changes so please consult current experts on the fine details. 

That said, Medicare usually = coverage for those over 65 and people under 65 with specific disabilities  who have payed SS benefits for 24 months.  Last time I looked the specific disabilities were only End Stage Renal Failure (ESRH) and ALS (Lou Gehrig's Disease.)   ALS is a motor neuron disease that mostly affects males.   My MIL had Progressive Bulbar Palsy (PBP) a subset of motor neuron disease more common in women but just as disabling as ALS.  If it had hit when she was under 65 it would not have been covered by Medicare.  Sexism in medical care lives on.  Her Hospice was covered by Medicare. 

Medicaid is for low income people of all ages.  Very low income.  Contrary to popular belief, pretty much every single long-term disability or catastrophic illness in a child or parent can potentially put someone in that category.  However good you think your insurance is, and however middle class and upwardly mobile you think you are.  Be warned and never. ever. judge anyone for accepting Medicaid.  It is a safety net.  And never begrudge your tax dollars going there.  Problem is that people with goodish but not great insurance can suffer greatly until their income goes down to the poverty level required for Medicaid.

We had to do a "spend down to Medicaid" (ask a SW) to cover my FIL's very long term NF and final Hospice care.  I'm so glad he was too demented to understand that Medicaid took the house he thought was his inheritance to his children.  His care for 10 years was far more expensive than the house.  Believe me.

He had (best guess) multi-infarct (multiple mini strokes) dementia.  A progressive dementia anyway.  Remember there are more types of dementia identified every year and they don't always progress the same.  Alzheimer's disease was dxed in other family members but my FIL lived longer after the first dx of dementia than most AD patients.

I just realised that I said above that my caregiving years were over!  Nope, not so.   I'm just in a gap.  And it is probably a toss of the coin whether I become Mr P's caregiver or he becomes mine.  Please try to stay healthy, Mr P!  You are high risk for dementia or motor neuron disease with your family history.  We don't know my family history (I was adopted) but I already have a chronic health condition.  Perhaps we can stagger along together until we kick the bucket -- also together -- and not be a burden to others.

Edited January 27, 2020 by Palimpsest

[Momma's In Charge]

1 hour ago, 3splenty said:

Aw, you're welcome!  Another thing--insurance is more apt to cover hospice if its termed as comfort cares instead of hospice.  I learned this from a coworker the other day.  Also check with the social workers.  They have lots of information.

Family and friends have a specific job (in my view as a nurse)--focus on the quality time.  My job is the physical cares, meds, etc.  You be there to reminisce with your loved one and others, support each other.  I'll have your back and be there when you need me.

Thanks. My sister has been sick so long, I think her insurance company is chomping at the bit to get her into hospice and medicate her into her death. Truthfully, if I were her, I'd seriously consider it. However, she is and always has been a fighter. My sister in law is a nurse and she can't believe all my sister has been through and survived. I'm going to join the support group spoken of in this forum, because right now, i don't have time for therapy (I do need it and will get that as soon as I can). For now, I'm looking into the free telephonic therapy I can get through work. My sister has been in a hospital close to me so I've helped more. Monday she moves closer to home and 2 hours away for me. I simply cant help as much then and I feel so bad. I'm so reassured to hear you say what our role is. My mom insists on nursing her and it frustrates me because she needs to relax and enjoy my sister's time left. Maybe she has years, but the reality is that they won't be quality years. Even if she learns to live with her tumor, the neurological pain and her autoimmune diseases make her quality of life hard. She has Crohn's and a form of hepatitis in her liver.

I could write a novel on all she has wrong with her, but I know this isn't the place. Thank you to all who have listened and been so kind. I really needed it and I'm glad said something.  Hugs to you all. 

Edited January 27, 2020 by Momma's In Charge

[HerNameIsBuffy]

There is also a club called In Memorium for discussing losses of loved ones.

I'll be checking these two clubs throughout the day to make sure anyone who subscribes is added without delay.

[Palimpsest]

48 minutes ago, HerNameIsBuffy said:

There is also a club called In Memorium for discussing losses of loved ones.

I'll be checking these two clubs throughout the day to make sure anyone who subscribes is added without delay.

Oh for the love of Rufus!  I'd completely forgotten that Curious made me a back-up leader on the Caregivers Group a few months ago.  I could have been inviting and approving people already.  Sorry!  My brain is still on hiatus. 

I'll be double-checking and making sure that people get approved quickly on the Caregivers Group, @HerNameIsBuffy so you can focus on In Memorium.   Thanks for approving people for me.

[HerNameIsBuffy]

36 minutes ago, Palimpsest said:

Oh for the love of Rufus!  I'd completely forgotten that Curious made me a back-up leader on the Caregivers Group a few months ago.  I could have been inviting and approving people already.  Sorry!  My brain is still on hiatus. 

I'll be double-checking and making sure that people get approved quickly on the Caregivers Group, @HerNameIsBuffy so you can focus on In Memorium.   Thanks for approving people for me.

No problem.  Idk how you have your settings but I set mine to get a notification when someone is pending.

As a general clubs statement, we're in the process of making sure we've got coverage for all of them so people won't have to wait to be approved.  In the meantime I'll make a note to check at least daily.

[Palimpsest]

2 minutes ago, HerNameIsBuffy said:

Idk how you have your settings but I set mine to get a notification when someone is pending.

I just tweaked them and now should get notifications and an email.  But I've been known to screw notifications up. 

Thanks again.

 

[Queen Of Hearts]

No random livestreams from Tom in over a week? Tom must be 'talking to a girl' again for sure.  Creepy super fan Rachel Day must be beside herself.  

[Itsjustme]

36 minutes ago, Queen Of Hearts said:

No random livestreams from Tom in over a week? Tom must be 'talking to a girl' again for sure.  Creepy super fan Rachel Day must be beside herself.  

Or he made up with the one he was talking to .I never heard him say it but someone said that he had said she had a problem with the you tube stuff. Wow, take away attention from 9 grieving kids but yet be mad that he gives attention to his you tube channel? That makes sense!!  

[Olivia Marie]

1 hour ago, Queen Of Hearts said:

No random livestreams from Tom in over a week? Tom must be 'talking to a girl' again for sure.  Creepy super fan Rachel Day must be beside herself.  

Poor precious Rachel,  she’s been on a heck of a roller coaster ride.    Tom gets dumped by #1 girlfriend...Rachel gets her hopes up again.   Tom selects #2 girlfriend from his Live dating line-up.....Rachel is shot down once again.   #2 girlfriend dumps him.....Rachel  is high again.    Now Tom has #3 - or recycling #2.   Poor pitiful Rachel just cannot win.   She shouldn’t have the Sheriff serve divorce papers to 10% hubby until Tommy puts a Cracker Jack ring on her finger.    

I feel so bad for her.   She has invested so much of her valuable time memorizing all of their birthdays, knowing what color they wear on any given day, all of their clothing sizes, favorite foods for each person in the family, what time they go to bed and wake up, what they buy at Walmart/local grocery store, where Andrea had everything stored, what moods all of them are experiencing, blah blah blah.   

[Mom2Bubby]

I see Tom has a Reminder up for bible study on Wednesday night. Maybe we will find out then who he is courting? ? If I can stomach watching him. Edited to add: I swear I saw a reminder for Wednesday night bible study and now it’s gone. Hmm. 

Edited January 28, 2020 by Mom2Bubby
Added info

[FreeFundiesKids]

So Tom had a premiere of a hour long video of assorted things that they did in December 2019.  I took one for the team (I didn't interact with the chat) however as usually Creepy super stalker Rachel D was all over answering questions from newbies/curious onlookers- even she knew where was/is a store that tom went to get milk (!!!) I wish that Tom would realize and recognize that she is a RED flag. The video begins with various school shots. Thomas, Asher and Judah helped out with the filming. There was one moment where Judah was annoying Asher with the camera and he covered his eyes- poor Asher. They showed boys and girls trees in their rooms. Middle of video was Asher's 16th birthday; his body and facial language seemed to be little stoic and emotional. he got a zippo bottle and a computer game also few what to be appear look like gift cards from Tom. all of kids made him homemade cards. Most of video, Hannah was always nearby to Asher. They went to see Grandma Fern (Andrea's grandma) in her assisted care facility. At end of video, girls was paying around tom and he seemed to not interact with the girls.

 

Maybe someone can do this summary in much better way than I did. I fast forwarded most of the homeschool parts so don't ask me what they did in those parts.