Trying to find a new normal

[ForgetMeNot150]

My husband died 4 weeks ago on 17 September 2018 after battling motor neurone disease in his lungs and throat for nearly 2 years. Whilst I miss him terribly, it is a huge relief for him to be at peace as he had struggled daily just to have the energy to move around the house. He had gradually been able to do less and less, but always remained positive and cheerful no matter what. He was able to shower himself and eat normally the day before he had a sudden panic attack and was struggling to breathe. He was admitted to the hospice to help calm him down but died four days later after not being able to get out of bed or eat or drink anything.

In the end the two of us decided together to dose him up on morphine and remove his breathing machine and let him go. He was fully aware when the nurse gave him the morphine and waved to us to say goodbye. Our two girls, aged 11 and 14 were with us and I held him and sang to him as he slowly stopped breathing. It was truly an amazingly beautiful experience and I feel incredibly lucky to have been able to say goodbye in the way I did having read what others in this forum have gone through when they lost their loved ones. We had imagined horrible ways for this to end, with him choking to death or collapsing alone at home. We also had months of grieving together as his energy and speech deteriorated and used to cry and tell each other how much we missed each other as we went off to bed in separate rooms (the machine he needed to keep him breathing over night was too noisy for me to sleep next to and I still needed to get up for work each day).

Today I returned to work after taking the past two weeks off to spend with the girls as they had school holidays (we are in New Zealand) and I didn't want to leave them alone so soon. Getting back into a "normal" routine has been harder than I expected and I am struggling with it. Not only am I grieving the loss of my beautiful husband and soul mate, who would always ask me how my day was when I got home from work (even when he couldn't speak), but I am also grieving the past two years of watching him slowly lose his battle with this horrible and incurable disease and feeling so useless that I couldn't do anything to help him. I used to go home at lunchtime each day so I could make him something to eat and we could spend a bit of time without the kids around. Lunchtime today felt empty and lonely.

I now need to try to rebuild myself and find a new normal to start again from, as well as staying strong for the girls. Whilst it is difficult, I can now start living again having put my life on hold for so long waiting for this inevitable conclusion.

I know in time it will gradually get easier, but if anyone has been through something similar and could let me know how they got through it, I would really appreciate it and it might help me feel a little less lonely.

[blackflag]

I'm sorry for your loss and I bet it must have been rough going through terminal illness. I don't think either sudden or expected death is better or worse, just different. I'm glad to hear you got to say goodbye in such a peaceful way with togetherness as a family.

 

[KayC]

@ForgetMeNot150  I am sorry for your loss...it's very different from sudden death where you're in shock, but this presents its own unique things, you've been his caregiver for the last couple of years and it's hard to deal with all of that changing so suddenly.  I went through that when I took care of my MIL who was bedridden with cancer the last three years of her life, she was my best friend and one of the most wonderful people I've ever known.  I was relieved she was out of her suffering, I wanted that, but I missed her, missed being able to talk to her, and my sense of purpose was altered so abruptly, I didn't know how to handle it.  It takes time.  You have kids and a job, that will keep you busy, but it's different from getting to be with your Love, and being able to talk with him.  We know they continue to love and care for us, even from their other world/dimension, whatever you want to call what they've gone to.  I feel like they're still with us, just in a different way.

blackflag puts it right: 

57 minutes ago, blackflag said:

I don't think either sudden or expected death is better or worse, just different.

My heart goes out to you, this is the hardest journey I've ever been on but I've learned a lot along the way.  I wrote this article on what has helped me, and hope something in it will be of help 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.