Deb S ... Thank you for the kind words. Yes, I agree some people with terminal illness' choose to pass away alone. Throughout Ernie's battle he distanced me from him little by little and I believe because he just couldn't cope with leaving me behind. First it started out when he told me every other day to go home and rest, but I refused and then it was asking me not to bring the dogs up to the hospital (he so enjoyed that) and finally he wanted me to take the cell phone home and keep it there. I knew in my heart he was giving up. I am always haunted when teary-eyed he'd tell me he just wanted to come home and believe me I was fighting with everything I had to get him home, but time was not on our side. He was so drugged near the end I often wonder to this day if he even recognized me, thought of me or what was going through his mind. I found the doctors at the hospital callous and absolutely no empathy. I hope and pray Ernie knew how much I loved him and how others loved him to. I think most of us to some degree have some guilt attached to the horrendous journey of seeing our spouses pass away a little at a time.
Marsha, I had tremendous guilt and it resurfaces to this day. For whatever reason, today has been a very difficult day for me with tears ready to erupt at every moment. I've decided to re-style my house. My husband and I retired here four and a half years ago. I'm concentrating on the upstairs loft (a builder converted attic space). This area contained several boxes that had not been opened since the move. Yesterday, I opened a box that contained keepsakes we had gathered from our many travels. As I unwrapped each, memories flooded back and longing for my husband by my side accelerated. I hate the situation each of us are in. I find myself asking myself: "(w)hy bother?". We bought this house to grow old in together and that reality can no longer come to fruition. I try to stay positive and count my blessings that I was able to spend so many years married to this wonderful man. Yet, my heart continues to reject reality and pine for a different outcome.
I am so sorry that you found Ernie's doctors to be callous and heartless. I know in my heart that Ernie did know how much you and others loved him and hope that you realize how much you were loved. Hugs dear friend, Debbie
Sara ... I am so sorry Ken had to suffer so much and when the doctors fight to find what is causing their health to fail there is always hope, but yes, I can see where you would think it was a curse. You are also right that family or friends who may have come to visit and only got a partial idea of what our spouses and ourselves were going through will never know the heartbreak we endured and I couldn't stand the helplessness I felt that I couldn't 'fix him one more time.' Ernie always looked to me to get him through such things and this time it was out of my control.
After 5 1/2 years it has dawned on me that most of our spouses knew they were going to pass away, but didn't want to let us know. Ernie just was 'soul weary' and the hardest thing I had to do was give him permission to die. I know that sounds odd, but he was fighting to stay alive for me and worried about how I would continue on without him. He did ask his close male friend to look out for me and for half a year he did after Ernie passed, but then he stopped helping. Family and friends sure tend to forget and I think it's because they are facing their own mortality.
Yes, all of us have our own stories to tell and in many ways they are similar because all spouses passed away in the end. I wish I had a magic wand to wave over us all and have our spouses back.
Marsha, I was reading the details of your story and it was equally heartbreaking. I knew some of your circumstances but not all of it. I think you also had to deal with what I consider poor quality care. For you to have to fight just for Ernie to be hospitalized, that's not something you should have had to worry about. You had enough to worry about. I do agree that our spouses knew they were going to pass. Ken had begun a conversation with me about 2 weeks before he passed. I'm not sure how it began but we were sitting on the side of his bed and he said with tears in his eyes that he was fighting to stay here with me but would always watch over me. I started to respond but only got out one sentence before transport came to bring him to a test, probably a CAT scan. When he came back I debated bringing it up again but he was in a better mood and I was afraid to bring him down again. Of course now I wish I had. Another one of my regrets that I wish I had a do-over for.
There's no doubt Ernie knew how much you loved him. The pain meds didn't erase 45 (?)years of love.
Sara ... thank you for the kind words and no, Ernie did not get good medical care and I had to fight 24/7 for it. At one point when he was failing badly they took him out his private room to give to another patient who could use the washroom (Ernie couldn't) and I thankfully was up there to realize that they were going to put Ernie into a small office that was gutted; no windows, nothing and I was horrified the room number was 666. I went ballistic and told them if they moved him into that vacant office all hell would break loose and thankfully he was moved in with one other patient. I could tell you all much more, but don't want to depress you.
I know your Ken told you all he needed to tell you that he was fighting the best he could to stay with you, but I believe he knew he wasn't going to make it and wanted you to know he would watch over you and I believe he does so please take comfort in that and our spouses knew how much we fought for them and how much we loved them and they do watch over us.
Deb S ... I can certainly understand the tears you shed and the heartache. On Tuesday as you know it was Ernie's birthday (would have been 71 years old.) Like you for some reason I woke up crying and cried all day and into the evening. I took the dogs for a walk and put on my faithful sunglasses to hide my tears and when I got home I sobbed my heart out. I have no idea what happened and shocked myself.
I have no doubt that when you went through the boxes of memories you and your husband had it opens up our wounds of losing them and we long to have them back with us. We all seemed to have a very special marriage and a lot of wonderful memories, but those memories can sometimes hurt more than if we moved forward into a new future (whatever that is.) I feel blessed that Ernie and I had almost 40 years of marriage (knew him for 45 years) but it still doesn't take that pain away for any of us. Yes, time is a factor as we go through the journey of grief and eventually we do get stronger and the heartaches not quite so intense, but every so often out of nowhere something triggers in us and we have a good cry and miss them all the more.
I understand the 'whatever, why bother' because I've said that for 5 1/2 years, yet something pushes me on. I know that our spouses wouldn't want us to be unhappy and to try and find a happy life for ourselves.
Thank you so much for saying Ernie loved me to the end. The reason I wondered was a few months before he had to have surgery they put him on medications that totally changed this once gentle giant into someone I didn't know. He was still gentle and kind to a point, but of course edgy and irritable and from the stress of it all sometimes I would get angry at him and for that I feel guilt to this day. I realize now because of those medications and the stress on him of probably not making it through surgery was so hard to accept that he withdrew from me and it was difficult t know what he felt because he wasn't who he use to be closer to the end.
We all have 'what if's'; or 'I should have' throughout our grief, but one thing I've learned is we did the best we could and were thrown into unchartered territory when they became so ill and eventually passed. I do know all of us were loved by our spouses.
Marsha, You were in my thoughts on the day of Ernie's birthday. I understand how you could easily be in tears the entire day. Birthdays are one of those days when memories flood back and self-questioning returns. I also agree that every so often something comes out of nowhere and all of our sadness and heartache arises again to the surface. Since my husband passed away, I've had to focus a lot of mental energy to many time consuming events. My needed attention to these matters likely allowed me to repress some of the pain. Now that the majority of these matters are resolved, my mind has the opportunity to wander. I continue to think of my husband 24/7. That has never changed. I've gotten this far through baby steps. It is difficult some days to recognize that a year has passed and this is the real deal. Despite my protestations to the contrary, despite my hopes and dreams, my husband is no longer physically by my side. My children are supportive while my lifelong friends have never experienced the loss of a spouse, Thankfully, my friends here understand as we are all going through the same thing.
My 60th birthday is fast approaching. Bob and I had plans to celebrate in high style. I now review options and find nothing that appeals to me. I hope to change my attitude as I think it important to celebrate life.
I've thought often of Sarah's comment that she doesn't want a "seat filler" by her side. I love this concept. I feel the same way. At the same time, I don't want to turn into a "seat filler" in my own life.
Bob lived a full life and he and I did so much together. We worked hard and we played hard. He loved sports. He had season tickets to our much loved Washington Redskins for 50 years. We expanded the number of tickets so that our children could also enjoy attending the games. He went to Super Bowls, NBA All Star games, World Series, the US Open, etc. We travelled often. We visited Vegas on more than 40 occasions and NYC two to 3 times a year. We took cruises and extended vacations throughout the U.S. We loved fine dining and getting away for long weekends. It was a great life.
I am well aware that my family history suggests longevity. My parents passed away at 93 and 94. The majority of their siblings reached 90 and beyond. The probability is that I have another 25 to 35 years. Yikes!
I have been battling the "what is the point" question a lot recently. I am consciously frequently giving myself pep talks. As I see it, there are only two options. I can be a seat filler for the rest of my life or I can engage and enjoy my remaining time here. I am trying with all of my strength to do the latter.
Thanks for letting me share my internal pep talk. Hopefully, others will relate to my internal debate.
How are you doing today? Debbie
I am home from my sojourn (and back at my own computer now hoping you all accept my apology for the confusion - I never considered that Steve's computer would pop up as the source of my post!) and as I slowly try to catch up with mail, shopping, and of course my loving family here, I want to start with a belated birthday remembrance for your dear Ernie. You know without my repeating it that he loves you and watches over you every moment, never wavering in his devotions despite medication induced moods or ramblings. Larry actually had the similar situation in reverse - while I was in delirium during my hospitalization poor Larry had to witness me pull my hand away from his repeatedly (so I am told), and heard me rant about being plotted against and betrayed. I can only guess the heartache that must have caused him.
Today, a little late, I post a birthday cake for Ernie sending him, and you dearest friend, my prayers and deepest love possible ... (don't eat it all at once) -
I'm hoping you are having a pleasant day today Marsha, and am thinking of you and sending a big hug -
Chuck, I hope you enjoyed a wonderful sojourn. How are you doing? Debbie
Thank you, I had what was for me a life-changing experience...I hadn't flown in over 25 years, let alone doing it by myself for over 40 years! Going to a place I had never been, a big city no less, and navigating plane changes successfully (very narrowly averting a missed flight on my way to Dallas), I felt not the expected anxiety and fear which I anticipated, but an unfamiliar calm surrounding me every step of the journey, and throughout my stay with Steve. I have never ever been someone who was considered calm in times of uncertainty or in unfamiliar surroundings. I can chalk it up to one thing and one thing only - this was what I was supposed to do, and where I was supposed to be, and God, and Larry, and all Steve's and my guardian angels were surrounding us with their protection, their love, and their assurance that we were going to be able to help each other in a way going beyond the confines of online posts and phone calls.
As I said to the lovely friend who graciously met my plane upon my return, I left Bloomsbury a resident of a small town who was still nervous about where he fit in to the world (sound familiar my dear friend?), and returned a citizen of the world with the knowledge that home is not an address but a state of mind, and exists truly only in our hearts, for where love and peace are, there you will find your home.
I have a few posts I wrote during both travel layovers, and as soon as I can make sense of my scribalings - yes, I wrote with a pen in a small notebook, and boy did I get stares from people who considered that quite a novel sight - I will share them, because I encountered angels and dawning realizations of life and it's complexities and wonders all along the way.
My closing thought to you now is this - Debbie, you are far too special to be a seat-saver...we all are - so as quoted from the Bette Davis movie : "Now voyager, sail thou forth to seek and find...".
See, I haven't changed too much - I'm still quoting old movies!
Peace to you today Debbie, and to the whole family who are ever present in my thoughts and prayers -
Chuck, Thank you for this incredible post. I am so glad that you stepped out of your comfort zone and enjoyed a life changing experience while away. You are a remarkable man and your post made me smile. I look forward to hearing more about your trip when time allows. Love, Debbie