My husband and I were together 32 years. He died in July. 13 months before he died he was diagnosed with MND. He was always very active and fit. and then started with a bad shoulder about 6 months before his diagnosis. It didn’t get better. Then he had a drop foot and problems walking. Ultimately after many tests and progressive symptoms he was diagnosed. The day he was diagnosed the bottom fell out of our world. There was no hope any longer. Within a month of diagnosis, he needed a stairlift, a month after that a wheelchair, a month after that non invasive ventilation. Then a RIG to feed through his tummy. He fought and fought. 3 or 4 times over the last year we were told he had hours or days to live, and each time he fought back and we fought with him, until the last time 2 months ago. I have spent the last year feeling like we are on the edge of a crumbling cliff and never knowing when it would give way. I have had to be on hyper alert for my husband, watched for each change in his health and fighting his corner. Through it all his mantra was ‘it is what it is’ . He never felt sorry for himself and held on in hope of a cure. I could only live one day at a time, I couldn’t control events, but I could control my reaction to them. My life was sleep, work, spend time with my husband, repeat. He was living in a nursing home for the last 10 months (when he wasn’t in hospital) because of his complex needs. When I wasn’t working or sleeping i was there with him. Now the funeral is over, much of the paperwork is done, I’ve had to go back to work. I feel alot of my grieving was done in the last year before his death. I was obviously upset when he died, then a weird calm settled over me. However, in recent weeks I feel like there is a volcano of emotion in the pit of my stomach and there are occasional tremors where some of the emotions come out, and instead of subsiding each time they are getting worse. I am trying to live my life, working and joined a gym to fill some of the gap. Of course this works only from a time perspective, the gap emotionally can never be filled. I am worried that my emotions seem to be getting worse not better. I’m trying to apply my philosophy of managing how I react to this event, but I’m not sure its working. I know my situation is different from an unexpected loss, but I also feel traumatised by seeing and experiencing what my husband endured in the last year. It was a living hell, for him and us. Anyone with similar experiences, or advice?
@Bonnies29
I’m very sorry for your loss and the harsh circumstances.
Unfortunately I don’t think anticipatory grief is a down payment on the final thing. It’s really hard in its own way but it’s different.
My husband had an incurable remitting relapsing cancer with 7 relapses in 10.5 years. The final relapse we got told 4 to 6 months then he reacted well to the final chemo and lasted 18 months. It’s an emotional ringer, but you survive in project stay alive mode. In the end my husband got an infection which took him in 5 days. Although I’d had a decade knowing it would happen it was still a shock.
But then I had often said I wasn’t prepared to think about afterwards until it was afterwards.
After he died I went into autopilot for a couple of months, getting stuff done. But then I fell apart. I felt like I was catapulted back to the start of it all… the why him, why us, the anger that he had to suffer so much. And the realisation of the permanence of the change in my future.
So I think your emotional turmoil now is normal and needs to be allowed out. Be gentle on yourself and don’t expect too much of yourself. Grief is not a linear process.
Bonnie, my husband was also very ill for a very long time and then, at the last diagnosis, I fell apart. I died inside as I knew it was terminal and there was nothing anyone could do to prevent his death. We were given 2-5 years.
His illness changed our lives long before the diagnosis.
My husband recovered from so many near death illnesses and accidents that I was sure he would, once again, beat the odds. I watched him wither away. From a big, strong man, to a thin, very ill man. 3 years.
I was still thrown into shock, trauma, chaos, fog.
The first few months are auto-pilot. I can’t remember them. All a blur. Somewhere in there you run into reality and the thought of gone forever smacks you in the head.
There is so much going on in the first months that you block out everything but the tasks at hand.
I commend you for going to the gym. I couldn’t leave the house for months.
Yes, you are traumatized. It is very traumatic to watch your loved one fade away and then leave, never to return. Your whole life changed and now you have to create a new one. No one understands what you are going through unless they have been in your shoes. It’s lonely.
My advice, as I near the one year anniversary, is to make no decisions for a while. Take each day hour by hour. Pay the bills, eat nutritious food and give yourself the luxury of rest. Grief affects the body too. Give it time to heal.
You must be exhausted from the care of your husband. I know how hard that was. It is time for you to rest. This path is full of ups, downs, lefts, rights, circles and figure eights.
You are okay. It is normal. However you handle your grief is normal.
Much love.