Feeling lost

[rjrogers]

I'm not even sure where to start. I've been a firefighter for 35 years, paramedic for 30 years, RN for almost 24 years and I just became a NP; I've been in health care and Emergency Medical Services for a long time. I've seen a lot of tragedy and loss. I have helped an unknown number of families and loved ones during the moments of tragedy. I've personally suffered the loss of my older brother when I was 13, then my father when I was 36. I've experienced losing friends and co-workers through the years. None of this compares to what I've felt since losing my better half a few months ago.

Lisa was my better half; we dated a long time ago when we were both in our teens.  She was innocent, me not so much; I didn't want to "tarnish" her, so I moved on. There is more to that story, but it isn't pertinent at this point. Several years later, roughly 13 years ago we ended up meeting again and our relationship took off from where we had left it and we were together ever since. I had recently had a bad experience with marriage and thus vowed never to marry again, thus Lisa and I never officially got married. If I ever would marry again, it would have been her.  She was definitely my better half, soul mate, partner in this thing called life, my lover, and my best friend. We had a great relationship, not perfect, but I don't think there is anything out there which is perfect.  In our minds we were each other's partner and probably as close to being married without the official legal document.

About 5 years ago she was diagnosed with Stage IIIb cervical cancer. Just to get that diagnosis, she became my hero. To see all that she had to go through, all of the pain of the exams and diagnostic tests. I was right there next to her, but she was the one having figures shoved various places, large hollow bore needles stuck into extremely tender places without anything to numb it. I have no idea how she endured it. It was horrible to watch and see her go through all of it, but I wouldn't have been anywhere else. It was my job to help her, to protect her, to attempt to ease any pain or suffering or even prevent any of that to happen.

She endured Chemo and radiation treatments. I worked nights, so when I would get off work I would pick her up and take her to her treatments, crawl in bed next to her and nap while she was getting her treatment.  We would then go home and both go back to bed. It was hard, but I had to do it for her. She had the hard part, she had to endure all of those treatments and what it was doing to her physically and mentally. She continued with such a strong will. Again, I have no clue how.

As a nurse, I watched everyone like a momma bear. I'm not proud of it, but I lashed out at those who I didn't feel was giving her the absolute best care or who I felt didn't have her best interests in mind. I saw stupid stuff being done; stuff which isn't acceptable. I fought for her on numerous occasions. There were many times the medical staff were the cause for her suffering. The caused her to have increased injury to her kidneys by giving her medications she didn't need, cause her to have kidney infection by performing an unnecessary procedure which was done for convenience. They ruptured her bladder during one procedure, then attempted to cover it up...because of this she coded...lost her pulse and stopped breathing.  She was resuscitated and taken to the ICU.  They refused to allow me to be where I could see what they were doing to her in order to cover up their accident.  Then they told security to remove me from the hospital. I was fortunate and one of the security officers refused stating I had done nothing to give him cause to remove me. Then when I demanded they transfer her back to her home hospital, they refused. Then again called for a Social Work consult because I was coercing her to leave. The outcome was I wasn't coercing her. Then they began telling her if she left it would have to be AMA and if she signed out AMA then none of her hospital bills would be paid. I asked who was coercing who? Their threat wasn't true, I had already spoke with our insurance company and was told everything would be paid, including the ambulance transport back to our hospital.

Six months after diagnosis she was determined cancer-free, but we always had that feeling she was never free, because she had to go back monthly at first, then every 3 months, then 6 months. Two years later she developed a brain tumor. She had brain surgery and it was determined the cancer had returned and had metastasized to her brain and lung. They stated because the cancer returned, it was now determined not curable, but rather it would be a continued fight to attempt to try to hold it at bay, but it was considered terminal. They suggested a different chemo treatment which she would have to endure every other week indefinitely with radiation treatments here and there. Lisa had some initial radiation treatments on her brain where they removed the tumor, but she decided she didn't want to go through the chemo again. She stated what she had endured the first time almost killed her and this chemo they were suggesting had a lot more possible side effects which could create a life threat.  She decided she wanted quality of life versus quantity of life; she wanted to work, spend time with her grand kids, her kids, and myself. She wanted to enjoy all which nature had to offer. If she were to do the chemo she wouldn't be able to do any of these things and would mainly live either at the hospital or our home. They told her she would be luck to live a year without the chemo and radiation. With the chemo and radiation she might live 2 maybe 3 years.

A little over a year after her brain surgery, another tumor developed, almost in the same place. Lisa decided not to endure another brain surgery.  We had been advised the tumor in her chest had grown over 10 times as well.  She was being followed by the Palliative Care team and was receiving great care from them. The next Spring she was admitted into our local Hospice program. In July I thought we were going to lose her, but she bounced back, not to where she was, but she was awake and alert, but now essentially bed bound.  Then in October she passed.

I was her primary and essentially her only care giver.  She has 2 sisters, a brother, and 3 boys.  All of them live about 80 miles away.  I've got an older boy who also lives about 80 miles away, then I have a couple of ex-step-daughters who I raised for about 15 years of their lives, they live roughly 15 miles away. No one would lift a finger to come help Lisa. There would be a lot of talk and demand to be kept informed, but essentially no help.  Lisa asked a number of times, I asked...just so frustrating.  Lisa and I had always depended on each other for everything.  This was huge, but I was determined to be there for Lisa for whatever she needed; I was going to find a way to make it work...somehow. So we just plugged along. Four of her former co-workers came to help for several days in July, then would pop in and out every other week or so, then a couple of my former co-workers came a couple of times. I can't express how much it meant to me and to Lisa to have that help, especially from my former co-workers who didn't even know Lisa but was willing to do it to help me out. The last month or maybe 2 we were able to sign up for a program and was able to hire some outside help which would come on the days I had to work and they would stay with her. We had some issues with the help that was sent to us and the week before she passed I was able to get that worked out and had someone here who was going to be awesome.  She really only worked about 4 or 5 days before Lisa passed.

Since Lisa's passing I've been lost. I don't even know how many days I have spent sitting in my recliner, just sitting there.  Sometimes watching stuff on TV; sometimes just messing on the computer browsing...not really doing anything, at least that I can remember.  Memory...I don't have any.  I've having such a hard time remembering anything.  I'll be up and think of something I want to do or get done and then a couple of minutes later I'll either sit down to do it or want to write it down so I can do it later and I cannot for the life of me remember what it was.  It's like my brain has stopped working.  It seems I only can get any thing done when I force myself to do it, and then it is only little things.  I'll have big plans to get this and that done and none of it has gotten done.  It has been almost 4 months and I'm still stuck in this chair!!!

I've got laundry to do; some I just need to put away; some I need to fold and put away; now I have some which needs washed, dried, folded and put away, but I'm not getting any of it done.  I've got dishes to put away and dishes to wash. I've got a garage which needs cleaned and organized.  My office needs cleaned and organized.  Then just general house cleaning.  My yard needs cleaned and various items taken care of.

For the past 3 years I had been in grad school obtaining my Master's Degree and becoming a Nurse Practitioner. Lisa so wanted me to continue my schooling and finish it.  She was able to go to my graduation ceremony last April, but I wasn't done until July. She got to see me get my Diploma in August.  In September I took my boards and became a certified Nurse Practitioner and she was so excited. Finally in December I applied for my state License which I just got a few weeks ago.  I have started looking for a job as a nurse practitioner, but it took me a long time to get there.  When I finished school I didn't want to start looking for a job for a couple of reasons 1) I wanted to spend my extra free time with Lisa and 2) I didn't believe it would be fair to a new employer for me to start a new job, then have to take time off whenever Lisa passed, so I just put that on hold.  Then after Lisa passed, I didn't have a desire to do much of anything.

I can't find joy in much. I can't say I'm happy to be done with school, although I am glad I don't have to go do anything like that right now. I can't say I feel happy about having my Master's or being  Nurse Practitioner. I did feel some joy when I got my license but it was short lived because I had no one to celebrate it with. Lisa always helped keep me steady. When I was sad, she was there to talk to, give me a hug, or I could just snuggle up to her or lay my head in her lap.  When I was happy, she wanted to celebrate with me or even just talk. She kept me grounded. I'm lost without her.

Friends, co-workers, my doctor everyone had told me this is normal and just takes time, but how do you cope, how do you get through it? At work I can and do take care of anyone. We have a psychiatric unit so we get all kinds of behavioral health patients with various complaints and I think I do a good job taking care of them...mainly because I get it, I understand what they are either saying or trying to say. But I can't help myself. LOL  Many probably wonder if I'm suicidal, not really. I can't say I want to hurt myself; I don't have any desire for that. I can't say I really have a desire to live either, but those two I distinctly different. At this point I don't think I want to live, but if my life were threatened I'm thinking I would fight to save it versus just welcoming the death. I don't really waste much brain power thinking about that stuff; I tend to waste my brain power trying to remember what all I need to do and not doing it.  I believe I am the master of procrastination currently.  With all of the free time I've had since Lisa has passed my office should be spot on and perfect, my garage should be organized and ready for all of the projects roaming around in my head. My home should be clean and kept up.  I can no longer use the excuse that I don't have time like I have the last 3 years.  Actually, back then, I didn't have any free time and what free time I did have I spent with Lisa.  I have none of those excuses now and I am still unable to do any more than I did back then.   This is so frustrating to me

I probably should get up and get my dishes done at least. If anyone is still reading, I apologize for how long this is. I didn't intent to write a book, but maybe it will help getting some of this out. If anyone has any advice I would appreciate it. I kind of feel like I'm going nuts.  I feel like a ship out in space with no propulsion, just being tossed here and there and unable to find my course or direction.

Thanks again, Rick

[Heart&Soul]

I am so sorry for your loss.  Your relationship with Lisa sounds amazing like most of our relationships here on this site.  I also lost my husband and soul mate in October and I also have days when I don't know how I will go on living - but I do.  Just take one day at a time even one hour at a time.  Don't beat yourself up about getting things done - there is no rush.  Just make sure to take care of you - eat well & try and get some good sleep.  The thought that feels like a bullet to my heart is when I think he will never be here again with me.  

My husband endured 2 years of chronic pain and finally the cancer took him.  I feel so bad for all the suffering he had to go through and I too was his sole caregiver.  I hope you have family and friends that you can lean on for support.  This site is a great place and you should come here often.

Sending you a big hug.  Take care.

[Billie Rae]

Rick,I'm so sorry you lost your wife(not paper wife but heart wife)I lost my husband January 16 2019 Also to cancer.There were a lot of medical mistakes that led to Charlie suffering way more than was necessary,the first was he had a stent put in in 2017 and when he started losing weight rapidly and I told the cardiologist something was very wrong he wouldn't take Charlie off the blood thinners so he could do the tests the gastroenterologist wanted to do so no one did anything until I really screamed about him dropping 90 lbs.Next test showed advanced stage 4 metastatic pancreatic cancer with a.40 cm tumor and lower stomach blocked due to hardening from cancer.Then they asked him if he wanted chemo but I said no because his blood numbers were way too low but Charlie told me the doctors would not have offered if he couldn't handle it and he did chemo.Charlie got so sick he never left out house again except to go to the er.He was in horrible agony for 3 months before his violent death.if they had let him do the tests earlier maybe....and I know if he hadn't done the chemo he wouldn't have suffered so horribly.So I understand your pain,I too am in healthcare.Hang on and stay here,there are people here at different stages of this journey and a lot of wisdom and comfort.It will help you feel less alone.We all have the confusion,lack of energy and plain misery in common.Much sympathy and love to you.Kayc please send this dear man your comfort(Kayc is our wise woman she is 14 years into this journey)

 

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[rjrogers]

3 hours ago, Heart&Soul said:

  I hope you have family and friends that you can lean on for support.  This site is a great place and you should come here often.

Sending you a big hug.  Take care.

No friends or family to lean on really. Most of my friends I try to talk with basically shy away, I figure this is because they don't know what to say or do, so they avoid the conversations. I don't really hear much from my family unless I make contact, then they act basically the same as my friends. Her close friends are better, we can talk and do at times, but they are suffering as well, plus they have their own spouses. So it's just me and Toby (Lisa's Yorkie).  

[JES]

@rjrogers  I'm very sorry for the loss of your beloved Lisa.  You both went thru so much with her illness.  I understand how you feel.  I lost my beloved Kevin, 9/23/18 after many surgeries, losing weight, too many antibiotics, heart disease, kidney disease, diabetes etc.  In the end it was his gall bladder. I also had to be his voice in hospital situations, but still have my frustrations over care at times. I can't even look at my local hospital as I ride by... I hope to never have to go there again but what are those odds?   I too have the memory issues which seem to be a part of this journey...and the low energy levels. I sit in my recliner alot... and let things go...and do when I want too/ or feel I need too.  In the beginning I tried to do one task aday,  I do feel improvement since first months so I have hope that time will help us in this unwanted journey. Hugs to you and Toby.

[SSC]

@rjrogers I am so very sorry for your loss.  I hope you are able to come to this forum, post, read and feel like your feelings are understood.  This is a place where we look for hope or just a listening ear.  I lost my husband 4 months ago and am dealing with some of the same feelings (or lack there of) that you are.  I have no motivation to get things done.  I have boxes of Steve’s things from his office and from the funeral that I  put in our spare room and just shut the door.  I cannot bring myself to go through the boxes.  I pulled out his most recent pocket organizer from one box, started crying, then walked out and shut the door.  I need to have this room cleaned by Saturday for my daughter to live in for a few months.  I don’t know what to do.  I just might ask her to pack it up for me.  So ridiculous.  But I literally feel like I’m moving through quicksand most Of the time.  Thing is, I don’t even care.  

Heres what I do know.  Others here (KayC). Have shown us that slowly, we will find a new normal.  We will eventually pick ourselves up and do something.  It will never be the same.  That is the horrible thing we need to accept.  Who knows how long that will take?  Right now it’s just important to take care of yourself, physically and mentally.  If there is one huge thing I’ve learned through all this is our mental health is just as important as our physical health.

I also had a Yorkie.  Her name was Daisy.  I had her for 14 years and she died 4 months before my husband. She was like our baby.  I hope your pup Toby will give you lots of love, I’m sure he’s taking advantage of your chair time  

[rjrogers]

@SSC We got Toby a few months before Lisa's first brain tumor showed up. She had been wanting a companion dog, lap dog.  We had Rottweilers previously and the rotty which had attached himself to her had died earlier that year. We still had one, but she was attached to me. We ended up having to put her down a couple of years ago, so then all we had was Toby. He was such a companion for her...especially when she was having a hard day or not feeling well. When she was like that he was attached to her and wouldn't leave.

Since Lisa's passing, Toby has been my best friend and companion. He is always there to welcome me home and goes to bed when I go to bed. He tries to get me to stay home each day I get ready for work. I think she knew what she was doing when she got him.  He has such a personality.

[foreverhis]

6 hours ago, rjrogers said:

Most of my friends I try to talk with basically shy away, I figure this is because they don't know what to say or do, so they avoid the conversations. I don't really hear much from my family unless I make contact, then they act basically the same as my friends.

I have found this to be true as well.  Even a few of the people who I expected would be there for me have vanished.  I've decided that sometimes people don't know what to say and so they say nothing at all.  They don't realize that a simple acknowledgement of "I'm so sorry" would be enough for a start.  I swear, sometimes people shy away as if our loss is contagious.

For someone like me in late middle age, I am a nasty reminder that "This could happen to you."  People my age (60) and a little older like my husband was (71) do not want to face that.  Oh heck, no one at any age wants to admit this could happen to them.  The fact is that our society sucks at handling grief and death.  People need to feel that things are back to "normal" as soon as possible because our grief makes them uncomfortable.  They want to believe that grief can be put into tidy little packages.  Unless someone has experienced this, losing our soulmates and our better selves, they have no idea what it is like.  They don't know that there will be no "normal" for us now.

I am so sorry you lost your beloved wife (yes, wife, do not let anyone tell you otherwise).  I know what it's like to watch the person you love more than life itself fade away while you do everything you can to save him or her.  I know what it is to see that soulmate leave you bit by bit while are helpless to stop it.  I know what it's like to be exhausted from day after day of caregiving, knowing that there is nowhere else you would be.  I spent countless days and nights at home, at the hospital (sleeping off and on in a recliner), or with him at rehab.  I know what it's like when you have those times it becomes too much and you're too exhausted, so you lash out in anger at the unfairness of it all.  And I know the absolute despair and depth of pain when you realize that you are going to lose your soulmate.

What I cannot and will not say is that I "know" how you feel because each of us is unique in our grief and feelings.  I can only say that I know how I feel and that my own grief allows me to say I empathize deeply with what you are going through now.

As for how we get through it.  It seemed a cliche to me at first, but I have found it to be true:  One day, one hour, even one moment at a time.  I urge you to find some of KayC's posts.  She lost her soulmate nearly 14 years ago now and has some really good and sympathetic advice gleaned from her own experiences.  She's really an angel on earth, at least for us here.  (She would say otherwise and that she's simply one of us who tries to help because she has the benefit of time.)

I will tell some things I believe to be true.  One is that you should ignore anyone who tells you what you should or should not think, do, or feel. Your grief is yours alone and what someone else thinks or what their grandpa/aunt/friend went through is immaterial.  Another is that crying is necessary; any time, any place, and the heck with what anyone thinks.  A third is that it is a great benefit to talk to our soulmates.  I do it all the time and probably always will.  It helps me center the chaos in my mind sometimes.  Other times it just makes me feel connected to my love.  Still other times, it's a way to express my pain.  (Plus, I've always been one of those people who "talks to" herself when alone.)

If I may offer some completely unprofessional advice:  Take care of yourself as best you can.  Eat regularly, even if you have force yourself.  Find foods that are easy to prepare and easy to eat.  Sleep when you can and, if appropriate, take any medications your doctor(s) prescribe to help with that.  Ditto for anti-depressants if you and your doctor believe they are necessary and will help.  There is absolutely no shame in admitting your life is shattered, body and soul.  No one can be expected to be strong in the face of this loss.  No one.  If you're like me, you ignored your own health because your spouse's needs came first.  It's time to refocus that onto yourself.  My doctors understand and are trying to help me tackle my own long-term health conditions one at a time.  I find that exercise helps a little.  I'm back to doing my physical therapy daily, even on my very worst days and it may be the only productive thing I do all day.  It is helping me get my moderately severe pain down to a lower level and helping my overall physical symptoms.

One final thought for now.  When your grief is at its worst and when it threatens to drown you, remember that you did your very best for Lisa, that your lives together were special, and that you have a great and lasting love.  I have no idea what your beliefs are, but my husband and I always believed that there are things we cannot know, things beyond the here and now.  Our "faith" was in each other, in people in general, and in the idea that there is a unifying force (if you will) connecting us all.  So I hold onto the faith that someday, when it is my time, my love and I will be together again.

I am so sorry that you find yourself here with us.  But I am glad that you found this forum.  The members here helped me when I was floundering around, hopeless and helpless.  I still feel that way much of the time, but knowing I can come and talk to people who understand has been enormously beneficial.

[foreverhis]

41 minutes ago, rjrogers said:

He was such a companion for her...especially when she was having a hard day or not feeling well. When she was like that he was attached to her and wouldn't leave.

Isn't it amazing and wonderful how our furry companions are so intuitive that way?  Our Keeshond was like that.  If one of the family was ill or having a bad day, he'd be there full of love and care.  Our tiny tabby Persian cat was the same way.  They sense we need them and so there they are.

[SSC]

Rick, Im so happy you and Toby are there for each other in your grief.  I miss my pup terribly as I know she would help comfort my sad heart.  Yorkies are such cuddly lap dogs.  Most of the time I felt our dog was stalking us, waiting for the moment we sat down so she could jump up and sit right by us or on our lap.  I swore up and down I would never get another dog.  Even told my husband no a couple times because I didn’t want to be tied down.  I wanted us to be able to go when we wanted.  I wanted to focus on each other and not have to worry about caring for an animal.  Not to mention her death was so difficult for the both of us.  Now...I can see how the unconditional love of a dog would be so wonderful right now.  It would be nice to come home to a loving dog instead of an empty house. 

[KayC]

21 hours ago, rjrogers said:

It's like my brain has stopped working.

Pretty common in grief.  I'm not sure my brain every fully returned to its previous state, but the focus did improve.

https://www.refugeingrief.com/2018/04/10/grief-crazy/
http://mikeunkelhaeuser.weebly.com/blog/widows-brain

I am so sorry for your loss.  Lisa was fortunate to have you, but then that's how it is in a good relationship.  That's how it was with us.  I'm glad you were there to fight for Lisa, she needed your advocacy with the medical community.

I'm also glad you have Toby.  I lost our animals within the first three years after George's death, but have adopted others, and my dog, Arlie, makes a huge difference to my life.

21 hours ago, rjrogers said:

maybe it will help getting some of this out

It DOES help to express yourself, especially to those who get it.

I wrote this article at about ten years out of what I learned on my journey and hope something in it will be helpful to you.
 

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

• Take one day at a time.  The Bible says each day has enough trouble of it's own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
• Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
• Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
• Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255
• Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
• Try not to isolate too much.  
• There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
• Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
• Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
• In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
• Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
• Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
• Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
• Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
• Keep coming here.  We've been through it and we're all going through this together.
• Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
• Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs))) Praying for you today.