Advice Wanted

[JR999]

Hello, all.  This is my first post.  I'm so glad I found this site. 

Last Christmas my mother went to the hospital because she was experiencing severe chills and shaking.  These symptoms recurred several times daily for the next few weeks, and each doctor she saw could only tell her they didn't know what was wrong, until on February 1st, when she had a massive stroke and many things became evident.  For several days she was in a local hospital, where her condition appeared to improve slightly except for her frequent sweating.  The sweating, it turned out, was a symptom of an infection that they feared had reached her heart.  Following this analysis, she was immediately flown to Washington Hospital Center, where they soon confirmed she indeed had a heart infection (endocarditis).  For about a week she was there, in desperate need of heart surgery, while we waited and waited to speak with the surgeon.  When finally we met with us he said her case was so grave he was somewhat reluctant to even attempt surgery.  However the next day, he did perform the surgery. 

It was a complicated process. 

Her aortic valve, which she had replaced because of stenosis in 2008, and which they surmise had unfortunately facilitated the infection reaching her heart, had to be replaced again.  Two other valves had to be repaired, as well as a fistula.  She had an aneurysm that had to be removed.  Several of her arteries had to be either repaired or replaced.  The infection, which was determined to be a form of strep, had to be debrided from at least one of her valves.  The surgeon said he had to fashion structures out of her pericardium for some of this work.  What he did is nothing short of amazing.

After the surgery we were relieved beyond description.  For the first time in a long time, there was some light flickering in the darkness.  The feeling lasted briefly, as what was supposed to be a twenty to thirty minute transfer from the OR to the ICU took over two hours.  My mom's oxygen level was low and one of her lungs had partially collapsed.  The doctor we saw in the ICU the next day, who had been there the previous night, said he hadn't been sure she would make it through the night.  It has been a week after surgery, and still she cannot come off the ventilator or the medicine that keeps her blood pressure elevated.  The EP doctor said her heart has no electrical activity and said she would need a pacemaker.  A few days after that, the day they were to implant the pacemaker, they said they had to hold off because once again her white blood cell count was high.  It just seems like poor health is chasing her around like some demented, evil thing.  For every one thing that goes well, three go poorly.  

All of this is crushing my dad, who is every second of the day waiting for the worst possible news.  He refuses medication to help him sleep at night and to feel more calm about this during the day.  As a retired marine who saw in Korea the worst horrors the planet has to offer, and by that I mean bodies stacked football fields long near the 38th parallel, our family is surprised at how he is just unable to handle this new horror on any level.  He often breaks down and cries, and I don't ever remember him crying even once before this, except a few tears when we had to put to sleep our awesome twenty-three-year old cat Tiger back in 1998.  My dad keeps saying that if my mom dies he wants to die.  I tell him I understand, that I truly do, that if my girlfriend where lying close to death I'd want to pass with her.  This helps him relate to me, and that is a good thing, one of the only times I feel like we're on the same wave-length about this terrible situation.  However, I don't know what else to tell him.  I don't know if I should just keep reciting the cliché to "prepare for the worst and hope for the best."  Clichés are of little comfort while staring into the twisted, wretched face of this thing.  I don't know if I should tell him that I'd be okay if he passed soon after mom passed (I wouldn't be at all okay with it).  I don't know if I should tell him he shouldn't think or feel that way.  I'm reading books on the topic of dying now, and it seems one of the underlying themes is that there is no right or wrong to a lot what surrounds death and serious illness.  I wonder about that.  I wonder if I made a terrible mistake when I signed the consent for my mom's surgery.  I wonder if she will be okay living in a wheelchair, unable to do any of the things that give her joy in this life, or if she will even be mentally aware should she ever be well enough to be moved to a rehabilitation center.

The most important thing is for me to help my dad (and sister, who is hanging in there pretty well so far) deal with this in any way I can, and to that end, I would greatly appreciate any and all advice you may have.  I've read several stories on here and I am truly sorry for the terrible losses people on this site have suffered and suffer still.

JR                         

 

[ChinUp54]

Hello JR. Welcome to this forum and please know you've come to the right place. My heart goes out to you and your family during this most difficult time. I truly hope your mother is able to pull through this. I am sure MartyT and others here more experienced than I in counseling will comment as soon as they can. 

[kayc]

JR,

I stop and say a prayer for your mother right now...and your dad...and you.  I am sorry for all your mom and your family has been through.  Is your mom awake and cognizant?  I can't speak for your mom as to whether she'd find quality of life if incapacitated or not, but I can tell you that it's amazing what we can adjust to with time and effort.  My sister was in an accident when she was 25, it killed her three year old son, and her four month old had to be adopted by our parents.  Her life changed forever.  Her fiance high-tailed it out of there after one look at her.  Her brain was damaged, her jaw and pelvis crushed.  She's quadriplegic.  They'd done an emergency tracheotomy on her that wrecked her vocal chords so it's very hard for her to communicate, for us to understand her.  You know what?  She's 74 now and she has adjusted to her life as it is.  That doesn't mean it's her preference.  She went through a period of wanting to die (that's the pits when you want to commit suicide and lack the wherewithal to do so) but after a year or two stopped thinking that way.  She's made the best of a horrific situation.  She's inspiring to me how content she is with life as it is.  We've all tried to be there for her and give her something to look forward to, we've gotten together every month to take her out to lunch and shopping.  Lately as we're all getting older, we can't get together in the winter, we have physical issues that make it difficult (eyesight, balance, etc.) but we still do what we can and get together a few times a year, coming from all over the state to do so.

Your mom having your dad and you I would say would give her much incentive.  If my husband were still alive I think I could bear just about anything...but that's coming from the perspective of having lost him 12 years ago...had that never happened my perspective might be different.

Your dad feels right now that he can't live without your mom...we have all felt that way.  It is in that realm of the unknown right now, and we must keep in mind that the unknown can be frightening...it takes much time and effort to adjust to something as magnanimous as this.  But it can be gotten through.  Some do die closely together...I thought I would be one of those but that was not to be, I guess we don't get to choose how/when.  Death seems a relief to some of us when we're going through the pain...but then, little by little we do adjust, we learn to cope, and somehow through the fog we begin to see a glimmer of life.  First it's fleeting, a tiny feeling of being happy and then it's gone.  But little by little it comes more often, usually not to stay long.  We work on rebuilding our lives and finding purpose for our lives again.  It takes working at it to accomplish this!  Finally we find we have a life we can live with...not a life like before, not the same degree of joy, but we learn to embrace and appreciate what good there IS in life.  Seeing a grandchild.  Love from our dog.  Spending time with a friend.  Small joys, but joys nonetheless.  So while we look forward to joining our spouse again, we continue in faith and hope, knowing the love that always was continues...death can destroy the body, but not the essence of us...not the spirit, not the love that continues on.

This is a dark time for your family, but it won't always stay as it is in this moment.  The intensity will lessen.  Grief continues but it does not stay the same, it is ever evolving.  Thank God!  We could not handle it otherwise.  But you will get through whatever is to come.  For now...I pray for all of you.

You asked how you can help your dad...you are right that cliches are not helpful, in fact, sometimes very hurtful.  The best thing we can do for someone grieving is be there for them.  If you don't know what to say, that's okay.  Some people demonstrate their caring by something tangible, mowing the lawn, fixing dinner.  Some sit next to the person.  Everyone handles grief differently and you're right, all those ways are "normal".  Only two things I caution about, 1) drinking...it's a depressant and a griever does NOT need anything further depressing them!  2) suicide.  It's common to FEEL suicidal but if a person contemplates acting on it I'd urge them to get some help. 

Grief counseling can be a huge benefit to someone grieving as well, although not everyone will give it a try.  

I hope you'll continue to come here as long as you need, we'll be here.

http://www.griefhealing.com/column-helping-another-in-grief.htm

[MartyT]

My friend, I wish you strength and courage at this challenging time for your family. You say you're wondering about some of the decisions you've made, and I hope you'll come to believe that you're doing the best you can under these very trying circumstances. You seek the best advice you can find, you act when a decision is required and you find a way to live with the results. Through all of this, I'm sure you've acted out of love for your parents. That is the best you can do. 

in addition to the article Kay has suggested, you may find this one helpful as well: Helping A Grieving Parent  ♥

[JR999]

Thank you all so much for replying and relaying your experiences to me.  Kay: Your sister's saga is the most inspiring I've ever read.  She went through hell but never gave up and never gave in and ended up having a full life when that seemed impossible.  You're right about the human spirit: unlike the body, it cannot be crushed no matter the weight of darkness put upon it.  My heart goes out to you over the loss of your husband.  Please do know that in the face of your loss you have inspired others to overcome, and I'm sure wherever your husband is, he is proud of you.  I thank you and Marty both for the article links.  The better informed I can be, the more I can help my father.  

We went to see my mom again today, my girlfriend, my dad and I.  Mom was only awake briefly, and during most of that time we showed her family pictures, to which she didn't respond.  It could be that she is suffering a severe brain fog, considering the powerful narcotics she has been until just a few days ago taking.  Her moment of most alertness was when one of the doctors came in to take a lung culture.  Mom's face went red and contorted in pain.  That was horrific to witness.  It seems she can only feel pain now.  I'm reminding myself daily that it's only been a week since her surgery, and that her recovery process will take time, but oh how the days seem so long.

Thank you all for the kind words, suggestions, thoughts and prayers.  I can't express how much they mean to me in these dark hours. 

JR

[kayc]

It's the hardest when you're going through it...but nothing stays the same and it does not go on forever.  Your poor mom, pray for her for strength for the moment.  Sometimes I think it's even harder to watch our loved one go through it and we feel like we're standing helplessly by.