Update in #39: My mom is really sick

[AlmiraGulch]

Apparently she went by ambulance to the hospital on Monday.  My dad just called to tell me today.  She's in the ICU and is in complete respiratory failure.  My dad says she has a CPAP 100% of the time, but I don't know if CPAP is correct.  Regardless, she can't breathe without assistance.

 

He said she is more alert today than yesterday, but that if she doesn't get any better they're talking about permanent intubation...which....really?  They do that?  Because I thought if it got to that point they were just waiting for them to die. Could she even go home?  I don't know how that works.

 

Anyway, I have so many emotions about this.  In no particular order:

 

1. She has been really sick before (pneumonia more times than I can count, COPD), and recovered, but it seems more serious this time. 

2. Why are they so messed up about medical stuff?  Why would they wait two days to call their kids?

3. Why did they call two of us yesterday (the oldest two), two of us today, still haven't called one and refuse to call the other (bad relationship with my brother and dad)?  

4. Why is it that the first thing my dad said is that he better not read about any of this on Facebook, because he knows we have such big mouths.  Huh?  Who is he even talking about? 

5. Why, when my sister told him we're driving up tomorrow, did he say "no."  Why did he say "She can't have visitors.  She needs to rest.  Don't come.  We don't need or want you here."  WHAT? 

 

For the record, we're going anyway.  It's not about him.  If this is it for our mother, we're at least going to be in the same city.  We're not asking permission.  

 

I don't know what the rules are about visitors in ICU, but if we can't go, we can't go.  It's assenine, though, if you ask me.  He told the same thing to my Aunt, my mother's sister.  Oh, and today is the five year anniversary of their only brother's death, and this is the day my father tells her she isn't allowed to go see her only living sibling, who could very likely not be living soon.  I don't understand.

 

Anyone have any experience with this?  Do people recover from respiratory failure?  And by "people", I mean elderly (pushing 80) women in not the greatest health anyway, with COPD and asthma.  From what I can ascertain from the internet (which is, of course, as good as a real doctor, haha), odds aren't good.  Someone who knows, please be straight with me.

 

 

[GailV]

I've no clue on the medical issues, but wanted to let you know I'm thinking of you  :grouphug:

[zoobie]

I don't know. I'm so sorry.

 

Is it possible he's having cognitive issues?

[Jean in Newcastle]

Sounds like a lot of family dysfunction is coming to light under pressure.   :grouphug:

[PinkyandtheBrains.]

:grouphug: :grouphug: :grouphug:

[AlmiraGulch]

I don't know. I'm so sorry.

 

Is it possible he's having cognitive issues?

 

I don't think so.  I've thought it through, and I think it's twofold.  First, it's his way of maintaining control.  Second, if all the kids go gathering around the bedside from all corners of the country, it makes it harder to deny that he might be losing his wife of 56 years.  I really need to extend the man some grace.  I was pretty angry.

[AlmiraGulch]

Sounds like a lot of family dysfunction is coming to light under pressure.   :grouphug:

 

This is the understatement of the century. : :D

 

Last year when my dad was sick and in the hospital (he had a heart attack) and we all went there, a bunch of stuff came out and now two of the sisters don't talk to the rest of us.  I wasn't even in the state yet and I got kicked out of their club!  

 

So, yeah....it's interesting.  

[PrincessMommy]

:grouphug: :grouphug:   I'm so sorry.  Yes. go.  Definitely go.  My dad was in denial when my mom was put on a respirator.  This all sounds somewhat familiar.   It is heartbreaking... I'm sorry.

 

My mom went into the hospital for what we thought was a UTI.  I called most days to see how she was doing and THEN called my local sis and aunt.   Over the weekend she went downhill and went on a respirator... I was busy and didn't call.  I assumed she was getting better, like always.  Everyone knew but me.  No one called me!! I was so hurt.  My mom was in her right mind and was adamant that she wanted OFF the respirator.  Nurse told her she would most likely die if she went off.  She okay'd it.   I talked with my dad the day they took her off the respirator.  He said "Nurse says she won't make it, but I think she's going to be fine."   Ugh!!  But see, my mom had been down this road before and she always rallied... so he thought it would just be a few days and she'd be home (just like #1 for you).   That was Saturday night.    We were able to get out there Monday morning (big snow storm hit St. Louis).... and she died on Tues.

 

Call the nurse and see if you can talk with her.

[AlmiraGulch]

:grouphug: :grouphug:   I'm so sorry.  Yes. go.  Definitely go.  My dad was in denial when my mom was put on a respirator.  This all sounds somewhat familiar.   It is heartbreaking... I'm sorry.

 

My mom went into the hospital for what we thought was a UTI.  I called most days to see how she was doing and THEN called my local sis and aunt.   Over the weekend she went downhill and went on a respirator... I was busy and didn't call.  I assumed she was getting better, like always.  Everyone knew but me.  No one called me!! I was so hurt.  My mom was in her right mind and was adamant that she wanted OFF the respirator.  Nurse told her she would most likely die if she went off.  She okay'd it.   I talked with my dad the day they took her off the respirator.  He said "Nurse says she won't make it, but I think she's going to be fine."   Ugh!!  But see, my mom had been down this road before and she always rallied... so he thought it would just be a few days and she'd be home (just like #1 for you).   That was Saturday night.    We were able to get out there Monday morning (big snow storm hit St. Louis).... and she died on Tues.

 

Call the nurse and see if you can talk with her.

 

Thanks for sharing your story.  It's similar.  Mom has always rallied and came back just fine!  I just don't have that feeling about it this time.  Last week I was talking to her and she was telling me that her ankles were pretty swollen. I was worried about congestive heart failure.  I think there's more to this than even my dad is telling.

 

Ironically, she's in St. Louis, too.  Hopefully no snow storm tomorrow (it is St. Louis, after all....)

[Reflections]

Go. Go. Go.

 

I'm sorry. Family stuff during stress can stink!  

 

:grouphug:  :grouphug:  :grouphug:  I'm sorry about your mom

 

I might be prepared to fight your dad, though. Talk to the nurses, and let them know you want to see your mom if you dad refuses.  IF he plays dirty and won't let you see her when you get there, ask for psych and social services.  Be quick about it too, don't try to reason with him.

 

Boy, I hope he crumbles when you get there and just let's go.

 

 

 

[AlmiraGulch]

Go. Go. Go.

 

I'm sorry. Family stuff during stress can stink!  

 

:grouphug:  :grouphug:  :grouphug:  I'm sorry about your mom

 

I might be prepared to fight your dad, though. Talk to the nurses, and let them know you want to see your mom if you dad refuses.  IF he plays dirty and won't let you see her when you get there, ask for psych and social services.  Be quick about it too, don't try to reason with him.

 

Boy, I hope he crumbles when you get there and just let's go.

 

Thanks.  Me, too.  

 

We leave in the morning.  My sister and brother-in-law are coming to pick me up and we're driving.  My sister that we're close to is flying in tomorrow.  We don't know about the two we don't talk to, and my brother can't make it.  

[Suzanne115]

I'm so sorry.  My mom was really sick back in the spring so I have an idea about what you are going through.  We were fortunate and my mom recovered.  I hope and pray the same for your mom.  I'm glad you are going anyway.  Hopefully, your Dad will be glad to see you when you get there.  If not, she is your mom and you have the right to be there.

 

Suzanne

[unsinkable]

I'm sorry, QV. ((((hugs))))

 

I think going is the right thing to do.

[gardenmom5]

You have my condolences.  end of life things can be difficult at the best of times, but your father is being irrational.  perhaps he's developing dementia?  or is in denial and if people come it means it's serious?  generaly death of a spouse is harder on men than on women.

 

My mother had copd and asthma (and a bunch of other things along with repeated tia's.), she didn't recover.

 

yes - go.  no matter the outcome, you will be glad you did.

[Catherine]

The vast majority of people who experience respiratory failure get better and leave the hospital.  It is usually not a permanent condition.  However, you have to usually be pretty sick, often with several serious short and\or long term problems, to have respiratory failure.  

 

I'm so sorry you are going through this and your father is being so...something.  I hope your mom is better soon and it sounds like she is going in that direction.

 

[mamajag]

:grouphug: QV.  

[Dandelion]

I'm glad you're going.   :grouphug:  Don't have any experience with the medical aspect, but I hope your mom recovers quickly.  As for your dad, maybe it's the shock or the stress talking?  Regardless, I'm sorry.   :grouphug:

[Starr]

:grouphug:  :grouphug:  :grouphug: Tough times, I'm sorry.

[Pawz4me]

Anyone have any experience with this?  Do people recover from respiratory failure?  And by "people", I mean elderly (pushing 80) women in not the greatest health anyway, with COPD and asthma.  From what I can ascertain from the internet (which is, of course, as good as a real doctor, haha), odds aren't good.  Someone who knows, please be straight with me.

 

My mom (age 79) was in a traffic accident this past December.  Her injuries seemed relatively minor--she was bruised up and had two broken ribs.  But the ER doc (this was at a Level I trauma center) said he wanted to put her in ICU overnight just in case, because people with broken ribs often don't take good deep breaths because it hurts, and with elderly people pneumonia was a big risk.  The next day she seemed okay in the morning, but the nurses weren't saying anything about moving her to a regular room.  Early that evening mom crashed and had to be put on a ventilator.  Pneumonia was setting in.  Mom had been a heavy smoker for many decades.  We knew she had the classic smoker's cough but it had seemed to be better in the last few years, and her doc had never said anything about it when I was there.  She couldn't walk far w/o getting tired and out of breath, but we thought it was due to RA and osteoporosis.  But with all the MRIs and x-rays they did in ICU it quickly became clear to the docs that she had significant COPD.  Long story short, after 77 days in the hospital (29 days in ICU, the rest in a long-term acute care hospital) we had to make the decision to remove her from the ventilator.  She wasn't getting better and the docs finally admitted she wasn't going to.  It was the hardest thing I've ever been through in my life, and something I wouldn't wish on anyone.  She passed away about two hours after the ventilator support was withdrawn.

 

Hopefully your mom will do better.  I hope things are manageable with your family.  It's incredibly stressful even when everyone gets along.

 

In the ICU my mom was in we could visit anytime, but only two at a time and people who knew our password were allowed in.  I decided on what the password would be when my mom was admitted, and my brother and I were careful about who we gave it out to.  I'm sure all hospitals have somewhat different procedures about ICU visitors and how they're handled, though.

 

[Insertcreativenamehere]

I'm not a medical professional, but I do have a son with airway issues and I know a little bit about this kind of stuff.

 

CPAP is a form of respiratory support, but it doesn't actually breathe for her. It just provides positive pressure to keep her airway open. A ventilator would actually breathe for her. If she needs constant CPAP or vent support, they may give her a tracheostomy, or a tube in her neck that gives her a stable airway. That would be the best way to intubate permanently, as you say. Intubating with a breathing tube down the throat or through the nose is typically not done for long periods of time if it can be avoided. 

 

My 16 month old son has a trach, and has been on a vent and CPAP during hospitalizations. However, at home, he is not on any form of airway support other than just the trach. The trach is a lifesaver, but it can make home care more complicated. In fact, we have 16 hours a day of nursing care in our home for our son, and I suspect that your mom would get some help, too. 

[trulycrabby]

I'm so sorry about your mom. You are doing the right thing by going to her side.

[Stacia]

:grouphug: :grouphug: :grouphug:

[AlmiraGulch]

Thanks to everyone for the kind words, hugs, and support.  

 

For those of you who have shared your personal experiences (Pawz, Suzanne, Poikar, PrincessMommy, and anyone else I forgot!), I really appreciate it (and I'm sorry for your losses and ongoing medical issues).  

 

I don't know if she's going to pull through this or not, but I'm going to be there this week regardless.  My dad is going to have to get over himself.

[J-rap]

I'm really sorry about all the family issues on top of the serious health issue. :(

[datgh]

I have just been through this over the last few weeks except it was my Dad who landed in ICU. One thing I learned through the experience was that Mom quickly became so overwhelmed (my mom is a very organized and together person).  She was more concerned with making sure Dad was being taken care of that calling anyone really fell offer her radar. Plus, she was just plain exhausted from the stress. She called me and once I arrived and Dad slowly stabalized she asked me to call my siblings.  She just didn't want to have to keep explaining it all to everyone and was mentally toast. I soon became the family spokesman and I can tell you it was mentally exhausting plus when your siblings are asking you if they should come and you know it is going to cost big $$$ for them to do so you suddenly have an extra weight to bear. It showed me why people set up Caring Bridge sites when they have a loved one who is really ill. Allow your Dad some grace.  He is probably beyond overwhelmed and exhausted. I know every time I left the ICU after seeing my Dad struggling for every breath I felt like I had been beaten up. 

 

Hopefully this time for your family will be a time for healing and that you get some good time with your Mom.  I know my siblings are closer over the last few weeks then we have been in years.  My dad was only allowed two visitors at a time and only visitors who had the pass code they assigned to the family.  We did have three of us in there when things were quiet.  Most of the time it was better for Dad's health if it was just my Mom.  He relaxed then and didn't feel like he had to try and communicate. At one point my Mom, sister and I just started laughing because we realized we where all just standing around the bed staring at the poor man. How does anyone rest with that happening!  I found it best to leave Mom with Dad and I would breeze in every few hours to check on her otherwise I was just in the way of the nursing staff. The nursing staff might also ask that you appoint one or two people as the family spokesman so they don't get innundated with calls.

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[Melissa in Australia]

_{:grouphug:  :grouphug: :grouphug:} 

 

_{Could it be that your father is in a sort of denial state. and doesn't want anyone to visit etc. because he is telling himself it isn't anything serious?  People can do and say crazy things when they are facing the potential loss of their partner.}

[readinmom]

Our parents are roughly the same age.  :grouphug:

 

It's hard to explain.  He might be feeling "territorial" about your mom.  The only problem I see in visiting is if your dad has power of attorney and refuses to let you visit her.  If not, you are family and have that right to visit her. 

 

You have to go, regardless.  It's your mom.  Call the nurse and have her tell your mom that you and sister are on their way to visit.  It might be that one thing that sparks her spirit. 

[Danestress]

(((((hugs)))))

 

I was just with a group of girl friends tonight, discussing some of the struggles of aging parents.  One had a very similar situation.  Her Dad had a major surgery.  Her Mom didn't want the kids to come.  My friend is still mad about it - and just really hurt.  She wanted to be there for her parents and support them.  They wanted to handle it by themselves and felt that visitors would add to the stress.

 

I can sort of see her parent's point of view.  I would feel like DH and I could tell our parents, in a crisis (or at the birth of a baby, or illness of a child), whether their presence would be a help or add stress.  I would NOT want my Mom to come hover at the hospital, and that has nothing to do with how much I love her.  I suppose her parents feel that with adult children, they have the same right to make decisions about what is best and easiest for them and to deal with things their own way.  

 

As a daughter, though, I can understand why that would hurt.  As a Mom or a daughter, it would be hard to hear, 'Please don't come.  We would rather deal with this by ourselves."  And at a certain point, aging parents may very well NOT deal with it best by themselves, as much as they hate to hear that.  So it's hard to figure out where the boundaries are, and I guess the boundaries change as parents get older.  It's really really tough.  

 

I hope your Mom will recover from this, and that after some time, you can talk to her and your Dad about all the issues surrounding this.

 

[Robin M]

My mom (83) has copd and numerous other issues. She was in the hospital with tia, pneumonia, cracked vertebra and was in immense pain. When my dad said don't come, we all said, we are coming. because he couldn't be with my mom at all times and had to sleep sometimes.  With our experiences and hospitals, we knew we didn't want mom to be left alone at any time while she was in the hospital. So my siblings and I made arrangements for at least two of us to be there at all times to spell him and be with mom. 

 

At that age, they don't like to ask for help and really don't expect it either.  My father is always surprised when he finds out my siblings and I are concerned about them and when we tell him, it's our turn to help take care of them.  

 

I'm glad you all are going and hugs, prayers and wishes for a healthy outcome for your mom.

 

 

[elfgivas]

i am glad you are going. the icu nurses and hospital social workers can be a great help.

 

do the two sisters you're not talking with know what is going on?

if not, a simple email might be kind. something like "just wanted you to know about mom".

 

when my fil was dying, my mil became a gatekeeper. the few who came anyway and refused to leave are the ones she speaks of fondly now. it was a crazy time.

 

hugs,

ann

[Χά�ων]

:grouphug:  :grouphug: :grouphug:  

[fraidycat]

:grouphug:

[AlmiraGulch]

I have just been through this over the last few weeks except it was my Dad who landed in ICU. One thing I learned through the experience was that Mom quickly became so overwhelmed (my mom is a very organized and together person).  She was more concerned with making sure Dad was being taken care of that calling anyone really fell offer her radar. Plus, she was just plain exhausted from the stress. She called me and once I arrived and Dad slowly stabalized she asked me to call my siblings.  She just didn't want to have to keep explaining it all to everyone and was mentally toast. I soon became the family spokesman and I can tell you it was mentally exhausting plus when your siblings are asking you if they should come and you know it is going to cost big $$$ for them to do so you suddenly have an extra weight to bear. It showed me why people set up Caring Bridge sites when they have a loved one who is really ill. Allow your Dad some grace.  He is probably beyond overwhelmed and exhausted. I know every time I left the ICU after seeing my Dad struggling for every breath I felt like I had been beaten up. 

 

Hopefully this time for your family will be a time for healing and that you get some good time with your Mom.  I know my siblings are closer over the last few weeks then we have been in years.  My dad was only allowed two visitors at a time and only visitors who had the pass code they assigned to the family.  We did have three of us in there when things were quiet.  Most of the time it was better for Dad's health if it was just my Mom.  He relaxed then and didn't feel like he had to try and communicate. At one point my Mom, sister and I just started laughing because we realized we where all just standing around the bed staring at the poor man. How does anyone rest with that happening!  I found it best to leave Mom with Dad and I would breeze in every few hours to check on her otherwise I was just in the way of the nursing staff. The nursing staff might also ask that you appoint one or two people as the family spokesman so they don't get innundated with calls.

 

This is great insight.  The three of us (my two sisters and I) spoke last night and decided pretty much what you just said; that they don't want people to go to the expense, and that we certainly don't want our mother to feel like she has to communicate with or even stay awake for any of us.  We're going to go and if my dad wants to see us (which I'm sure he will) then we'll see him.  If he really prefers us not to see mom, then we won't, unless she takes a turn for the worse.  We don't want drama.  We just want to be near each other and our parents. 

[AlmiraGulch]

i am glad you are going. the icu nurses and hospital social workers can be a great help.

 

do the two sisters you're not talking with know what is going on?

if not, a simple email might be kind. something like "just wanted you to know about mom".

 

when my fil was dying, my mil became a gatekeeper. the few who came anyway and refused to leave are the ones she speaks of fondly now. it was a crazy time.

 

hugs,

ann

 

They know. They actually knew first. 

[gracesteacher]

How's mom?

[AlmiraGulch]

She's.....bad.  I'm so glad I went.  I think I'm actually going back later this week.  I don't know how quickly it will progress, but it won't get better.  I'd like to see her and hold her hand again while she still knows I'm there.  That could be another week, or another month (although that's doubtful), or whatever, but we just don't know.

 

I've never seen someone struggle so much just to get air.  She's scared.  It was heartbreaking.  My dad is a wreck, too.  I mean, he's totally holding it together on the outside, but we know him and he's also scared, and exhausted.

 

Thanks again for the advice and well wishes and for sharing your stories.  It helps.  

 

 

[Jean in Newcastle]

I'm glad that you went.   :grouphug:

[sparrow]

:grouphug: I'm just seeing this now. I'm so sorry, but so glad you got a chance to see her.

[Dana]

:grouphug:

[Truscifi]

:grouphug: :grouphug: :grouphug:

[Melissa in Australia]

:grouphug:  :grouphug:

[pdalley]

:grouphug:  :grouphug:  :grouphug:  :grouphug:

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[Reflections]

:grouphug:  :grouphug:  :grouphug:  :grouphug:

 

 

[readinmom]

:grouphug:

[Chelle in MO]

That's wonderful that you were able to be there.  I'm so sorry you're all going through this.  :grouphug:

[Pawz4me]

I'm so sorry.  I know how hard it is.  Are they giving her morphine?  When my mom was on the ventilator it was the drug of choice to help with "air hunger" and the anxiety associated with that.

 

:grouphug: :grouphug:

[creekland]

:grouphug:  No advice, but plenty of :grouphug: .  I'm glad you got to see her.  Take care.  :grouphug:

[Cindy in FL.]

I am so very sorry about your mom! Praying for your whole family.