6 months out-afraid of what's coming emotionally

[Moment2moment]

I am at this place now where I am only talking with any depth about the loss of my partner to my grief counselor.

I have had some strong emotional support from a few people, but now I am at this point where the raw emotion is starting to come out after 6 months.

Thanksgiving also marks the beginning of my partner's marked physical decline after a 2 year illness. She ate her last full meal on Thanksgiving. From that time on her ability to eat declined and she eventually went to hospice in January. She passed in May after prolonged and horrific suffering that tore my heart out in ways I cannot describe.

I was her sole caregiver at home for all those months. I am already starting to relive all the steps and phases of her illness from this time to the end. I have vivid memories of all of it and am terrified of reliving all that pain and sadness again and now my emotions are raw like they never were before when I was trying to "hold it together" day to day, hour to hour last year.

So I am going to be reliving all that again and it terrifies me, frankly. I know that the weekly counseling will help but man oh man, how to get through these horrific and painful memories as the coming months roll by?

So far my grief emotions have spun me around something fierce and I guess it is only going to get worse before it gets better. How did you cope with times like these?

[ForgetMeNot150]

I have spent a lot of time lately looking at photos and watching videos I'd taken of my hubby before he got sick. At first, these were really hard to get through, but lately I can sit and watch them and smile and I feel a lot better for it. 

At first I really struggled to remember Craig as he was before his illness as he had slowly deteriorated over 18 months. Whilst he was always positive and smiling throughout it, no matter how much pain and frustration he was in, I didn't want to remember him as the frail old man he was at the end. He had been so big and energetic before the motor neurone disease took over. I was having panic attacks and often just struggling to breathe for a while. I think a lot of that was understanding just what I had gone through before he died. Every day it got a bit worse, but I just kept getting up each morning and dealing with it as I had no choice and had to be there for him. The day we got the diagnosis I think I went onto autopilot and just focused on doing whatever I could to make life easier for him - closing down our business, finishing the house renovations, researching ways to help with his symptoms and just being there for him when he was down. When he went and I got to stop and breathe, everything just caught up with me and hit me at once. But I realised I could control it and knew that he wouldn't want me to be that way - he was always so positive. So I know I have to keep going and push through it for him and our two girls.

I don't know if it will work for you, but trying to remember the good times instead of dwelling on the struggles and horrible reality we had to deal with before he passed has definitely helped me. The weather here has been beautiful this week, which might have helped too, but I have had an immense sense of peace this week. I don't know how long it will last, but now that I know it is possible at least for a short while, I will have the strength to bail myself out after the next wave hits and soaks me!

Thinking of you and here if you need to talk. ♥ 

[KayC]

Around six months is when it hits full force because that's when our support seems to dry up and shock wears off.  If you have anyone you're close to, don't feel you have to hold back, you can talk with them about what you're going through.  I know, we never tell them full bore what we're going through, we don't want to drive them off or scare them, but it's okay to let them know everything is not hunky dory, you are still grieving, you still miss her.

How did I cope?  One day at a time.  I was frantic, anxious, had a hard time sleeping.  It's okay to go to the doctor and get sleep aids if needed, it's pretty hard to function without it.  At the time I was working and needed to function, soon after I lost my job and that brought a whole new realm of anxiety without my husband to cheer me on.  But somehow I got through it.  Yes it was tough, but one day at a time was the best advice I ever got.  It's also important to reach out for help when you need it.  I'm glad you're seeing a grief counselor.  At some point you might want to consider a grief support group.  There were none in my small country town.  I always knew I wanted to start one and I've been leading one for about two years now but I'm glad I didn't try to start one then, it was too soon, it's taken me years and years to learn and glean information on grief, I'm more ready now for it.  But if there's one in your area it might be good to try, they're all different.  You can check with hospice for information.

[KayC]

8 hours ago, ForgetMeNot150 said:

I don't know if it will work for you, but trying to remember the good times instead of dwelling on the struggles and horrible reality we had to deal with before he passed has definitely helped me.

Good advice!

[Sunshine247]

@ForgetMeNot150 You have just written exactly my story for the last few months. Bob was going great until May and was still doing pretty well and was strong enough to do things for himself until August. His decline was rapid - about a month - and it was hell to watch and torture not to be able to do anything. I too, spent the first week or so remembering and reliving the last horrible week or so that he was in really bad condition, in hospital, remembering praying that if he had to go up, to please let him just go to sleep and drift away. And that prayer was answered. I would have rather had that one about please heal him and make him completely healthy again answered, but sometimes we just have to accept what is God's plan or whatever you believe in and stop trying to fight it - we're not going to win and it doesn't make anything better or easier or help. Thank you for sharing your journey and thoughts. It is comforting to know that there are others who have gone through what I have and who are managing to slowly heal. Craig passed away just about two weeks before Bob so maybe in two weeks I will have progressed a bit more too. Being here certainly helps. I also started putting together an album of photos from when Bob was healthy and we were so happy, living out our dream on the beach in Mexico, and at first it made me cry, but now it brings me comfort and happiness and smiles and fills my heart with love and a bit of a sense of peace. We did manage to live our life with no regrets - except that we didn't get enough time together - and that also brings me some peace of mind and heart. Love and blesssing to you and your girls. Have a good week end.

[ForgetMeNot150]

@Sunshine247 I love reading your posts. Whilst I know you are finding it tough too, you always have something positive to add or a lovely quote or poem. Thank you. 

Like me, you would already have started grieving whilst Bob was still with you. Craig and I often talked about what he was going through and he was so over everything towards the end as he couldn't do much at all. We would cry together and hope that it ended well. And we were lucky that it did. We made the decision together to give him a larger dose of morphine to relax him and to take off his bipap breathing machine which he had been on constantly since going into the hospice (he was only in there for 4 days). He made me go home and get the girls and his uncle and aunty (the only family he talked to) who were looking after them. As we were waiting for them to draw up the dose, I told my daughter to put on some music so it wouldn't be so quiet. We started with Pink Floyd's "Money", Craig's favourite and then just kept adding songs as we went along, including "Sand and Water" that I have posted in a separate post. It was beautiful and I got to hold him and sing to him as he gently passed away. 

Tears are streaming down my face now as I remember it, but knowing I had the strength to do the right thing for him when he needed it and to let him go helps me. There will always be things I wish I'd done or said differently but I have to focus on the positives and just be thankful for the time I did have with him. 

I still don't feel like he has gone though! The girls and I went to the cinema a couple of days ago to see Bohemian Rhapsody, the film about the band Queen. Craig and I had seen a trailer for it before he passed and were looking forward to watching it together. He would have loved it. But whilst I was watching it, it felt like he was there with me. I imagined him looking over at me and smiling when the girls were singing along with the songs. We always had music at the workshop or in the car. He loved to hear them singing along and would have this proud look on his face as he watched them.

This post is a bit all over the place, but obviously something that I needed to let out! Having a proper cry for the first time in a week whilst writing it, but feeling better already.  

Thanks to everyone on this forum as reading all your posts helps me more than you will ever know!

[KayC]

17 hours ago, ForgetMeNot150 said:

But whilst I was watching it, it felt like he was there with me. I imagined him looking over at me and smiling when the girls were singing along with the songs.

That's how I often feel.  It helps to think of them being here with us in spirit so that even though I can't physically be held by him, he can wrap his spirit arms around me.

[Spengler]

Yes, I'm at 6 months, too. Great gushes of emotion. Sometimes I want to sit with my head in my hands and cry for hours. Sometimes I feel like punching a hole through the wall with my fist. How to cope? Ride with it. Exercise to exhaustion. Keep busy. Get out of the house and interact with people. Try not to think too much.

 

Sympathy and prayers to you, Moment2moment.

[Sunshine247]

@ForgetMeNot150 a friend of mine's husband passed away about six years ago to throat cancer. She was very helpful, especially when I would go down the "what if" rabbit hole while Bob was still fighting. He never gave up, not even his last day - he was working with the physical therapist to get his strength back and be able to walk - he had been bedridden for the last week before he went up. His body just gave out. My friend told me to research "anticipatory grief" and I did - I don't know that it will help you now, but you might want to read an article on it. I found this and it helped me.

https://www.verywellhealth.com/coping-with-anticipatory-grief-2248856

I also ordered a book on it - it was delivered the day after Bob passed away. I kept it anyway. It might help me down the road. So for us, this grieving is almost like reliving the grief that we went through watching our husbands decline, and the sense of helplessness then for me was the most overwhelming - because you cannot truly imagine losing the person you love most in the world until it happens. You think you can - you can't. (And if I hear one more person tell me "I can't imagine," I'm going to scream. Nope - you're right. You can't.) 

I'm glad that you were able to be with your husband and to hold him as he went up. I wanted to do that too - have Bob pass here, with me beside him, listening to a playlist that I had put together - Bob loved Pink Floyd too  - and to be able to say goodbye to each other. Bob had other plans. He didn't want to pass away at home - he wanted to be in a nursing facility. He had been hospitalized for six days and then transferred to the facility on Tuesday. On Wednesday, he was in a lot of pain, especially following the visit with the physical therapist - and they had given him pain medication. He was very tired and getting agitated - he finally told me to go home, he just wanted to go to sleep. I told him I love you, he told me I love you and we kissed each other and I left. That was around 5:00. The nurse called me around 8:00 to let me know he had eaten his dinner, he was given more pain medication and he was resting comfortably. I was making plans on going to visit him the next day, completely expecting him to be ok. The nursing facility called me at 7:30 on Thursday - he had passed in his sleep, peacefully and painlessly. He had a roommate who told me that he hadn't even known that Bob had passed - he thought he was still sleeping. That he hadn't made any noise during the night and hadn't been in pain. So that was a relief to me. At first I was really upset that we hadn't been able to say goodbye to each other, but now I take that as a sign tht it's not goodbye - it's see you later. He is waiting for me over the rainbow and sending me love and strength and comfort when I need it. I still talk to him every day and there are times that I see him sitting in his favorite chair, listening to music - he loved music, especially the blues - or watching TV with me at night. 

Now I am the one wandering off. Sorry. Hold him close in your heart - he is always right there with you. I'm glad that you have your girls to comfort you too. How old are they? Coming here has been such a huge help to me and I hope it is to you too. Sending you love and strength and comfort and healing from not-so-sunny-today California - but we need RAIN so badly, I don't care!

[ForgetMeNot150]

12 hours ago, Sunshine247 said:

because you cannot truly imagine losing the person you love most in the world until it happens

Hi @Sunshine247

I totally agree. I knew it was coming and the two of us had talked about it, but I wasn't prepared for the big hole that appeared when he went. The house seems so quiet, even though I have two kids! When he was sick I had to step up and do so many more things myself, so I was ready for that, but I always had him to ask for an opinion and losing that has been the hardest of all. I have to have more confidence in myself now as I can't rely on him to pull me up and tell me I'm being stupid or to go easy on the girls! He was always the soft one with them, so now I have to stop myself and try to think what he would do and then compromise in the middle as we used to do!

My girls are 11 and 14 and are honestly coping with the whole thing better than me. The 11 year old has been amazing and if she sees me sad or crying will give me a big hug. A few weeks before Craig died she chose to do her school speech about living with motor neurone disease as she wanted all her classmates to understand what she was going through. Today she had a test for placement in the new school she will start after Christmas and had to write about a time she had spent at the beach or river. She wrote about the week before Craig went into the hospice (less than two weeks before he died) when we went away for a few days to a house by the sea and pushed Craig in his wheelchair along the waterfront to the shop to get cream for his banana muffins! Her final line was apparently that "She wished that she could do it all again". That will be a tear jerker for whoever is marking it! The 14 year old has also been amazing and has stepped up to help me around the house (with a bit of bribery of pocket money) and hasn't been anywhere near as grumpy and "teenagery" as she used to be. She has also gained confidence and is turning into a beautiful and strong woman.

Throughout everything we have been through, we have included them and explained what's happening and we openly talked about how we're feeling, which I definitely think has helped them. We encourage them to confront their feelings and to let them out as when they keep them in they tend to get sick (the little one gets bad migraines if she has something on her mind). I didn't like to fall apart in front of them so wasn't too great at talking after Craig died as I didn't really have anyone to talk to, but now that I have found this forum, I have somewhere to release all the emotions and try to make sense of what I'm feeling. Just writing them out helps immensely and if anyone actually reads and responds to them that is an amazing bonus!

I am so glad that Bob went peacefully. After all the "what-ifs" that we go through, that is all we can hope for in the end. I love the thought of them waiting for us over the rainbow! It will always be "See you later" not Goodbye for me too - he's just gone to sleep to get some much-needed rest.

And thank you so much for the link. Reading that brought back so many emotions, but that is another whole conversation that I won't go into now!

Thinking of you and sending you a big hug of thanks for all your lovely posts.

[Sunshine247]

@forgetmenot - we are half a world apart but I feel so close to you. Having someone who understands EXACTLY what I went through, and am going through, helps so much. Your girls sound wonderful and you and Craig should be extremely proud. My mother's father passed away when she was 16 and she has managed to think of no one but herself since then.But that's another rant for another time, maybe even for a different forum  I am trying not to let my family's negativity take any more of my time, energy, effort, or emotion. I'm glad your girls are staying strong and finding ways to manage their loss. Don't be afraid to grieve together - sit and have a group hug and cry or scream or laugh or whatever you need to do. Our society has been conditioned to ignore death, to avoid it, to pretend that it didn't happen. Elephants mourn. Dolphins mourn. Whales mourn. My dogs are mourning Bob's loss. But, people don't mourn. We (collectively and individually) need to learn how to do that and society needs to recognize it as important to the human experience of life as any other milestone.

My niece did her student teaching in New Zealand and loved it. My favorite wine is Kim Crawford (who I just found out is a guy!). So maybe I will have to hop over there one day and we can meet in person and share a hug, a smile, a glass of wine and stories of Bob and Craig. Because I am SURE that they have met on the Big Beach in the Sky and have become great friends. (I hope Craig likes dogs because there are a bunch up there with Bob!)

If you and your girls ever want to visit California, you have a home here. I'm an hour from Disneyland, half an hour from Legoland and there is plenty of room. Halfway between LA and San Diego.

Thanks for your posts and kind words too. 

[KayC]

@ForgetMeNot150 Your girls sound amazing and I'm glad you have each other.  It does help to let it all out in writing and know that others are reading and understand, it's validating to our feelings.

This early time of grief is hard, but I hope it will also be a special bonding with your girls.  My daughter came back home for a while when George died, she was already visiting, so just stayed with me for a while, and I look back at that time between us a very special.  My son was in the Air Force so just got a short time off and had to go back, that was very hard for him.

[ForgetMeNot150]

Hi @Sunshine247

The Kim Crawford vineyard is in Blenheim, only an hour away from where we live in Nelson, so you might just have to pop over and I'll take you over to sample some!  You are more than welcome any time you want to.

I have made a point of "actively mourning" as I knew I needed to acknowledge it. The week Craig died, the girls and I went to the cafe where we'd had lunch after our wedding (which was very low-key with 4 guests and the girls who were 5 and 2 at the time) and had a piece of their carrot cake - our wedding cake. We went there regularly and the owners had become good friends of ours over the years. The cafe is right next to the beach, so we walked onto the beach once we'd finished and wrote his name in the sand and spent an hour decorating it with shells and love hearts. It was very therapeutic and I totally recommend it to anyone who lives by the beach.

I can totally picture Bob and Craig on the beach chilling out with a beer. Craig was an upholsterer, so he would be able to make some comfy seats and a sun-shade for them, while Bob makes the beer and the dogs run about in the sand! Ahhhh, what a lovely thought - one day we'll get to join them, just not yet, as there is more for us to do here first.

My Mum's mother also died when she was young - in her late teens. Her father was incredibly old-fashioned and didn't believe in showing emotion. He told her that crying when someone died was just feeling sorry for yourself and shouldn't be done - what a *#@$ (sorry - but I can't think of a nice way to put it). He died when she was in her early 20's, so she didn't really have much support other than her brothers and sisters and surprisingly enough, she doesn't show her emotions either. We have had a very difficult relationship at times as she never opens up and talks about how she's feeling which makes communicating really hard. I am the opposite, as I wear my heart on my sleeve and don't believe in hiding my emotions. If I'm upset, I show it and don't try to pretend that I'm not. Since Craig died, she seems to have opened up a bit more, so hopefully when she comes out here in January (which she does every year to escape the UK winter) it will be a bit easier - fingers crossed!! 

When my Dad died in 2011, all my Mum could think about was herself, even though the two of them had been divorced for over 20 years. I had to deal with her complaining about feeling left out whilst trying to console my step-mum who was understandably completely devastated and had been with him since he left my Mum (which he did for her). I also stopped talking to one of my brothers after the funeral as again, he was so selfish and didn't help out at all with organising anything and just kept sticking up for mum all the time. And this was all on the back of a 24 hour flight with 2 small children in tow (Craig stayed in NZ). So I totally understand how families are at times like this and it is ok to walk away. You need to focus on yourself and if they are not going to support you, you don't need to be around them. If they truly care, then things will work out between you eventually.

Thanks to both you & @KayC for your lovely messages. I had an unexpectedly tough day today and you have helped to cheer me up. I just felt like I wanted to scream all day, but not really angry - just melancholy and frustrated with all the emotions running through my mind. I think I am just tired though, which always makes it harder to get through the day, so I'd better go to bed soon and get an early night so I have a better day tomorrow.

Thanks again. Even though it is sad reading others' posts sometimes, I look forward to checking in here each day and it gives me strength to know that I am not alone in this horrible reality we have to deal with. I really wish I could meet you all in person and share a hug and cup of coffee (or something stronger)!

[KayC]

Wow, sharing your backstory, it must have been so hard for her to not be able to show emotion.  I know a young man (18) on another site that lost his mom and his dad doesn't allow him and his brother to talk about it, show emotion, have pictures of her, etc.  So hard!

I hope your mom will be understanding when she comes so that she will be a comfort and not the opposite.  I totally agree that we must focus on ourselves and our own needs when newly grieving, it takes everything within you to get through this!  We can leave the future open for our family/friends but honestly, right now you need to be about yourself and your children.

[Sunshine247]

My mother was told not to show emotion when her father died too - her grandmother told her that she had to stay strong for my grandmother and couldn't cry in front of her. My mother has never been demonstrative. I don't remember getting hugs from her as a child - I remember getting BIG bear hugs from my dad. My mom and dad were dating when her father passed and I think she just leaned on my dad. She is a very co-dependent person. (The things you learn in therapy!) My mother has somehow managed to make Bob's passing all about HER - it's amazing in a very perverse way. I am following the advice from others on this forum, as well as a close group of my friends, to just STEP AWAY from my family. I know now is not the time to make ANY decisions and that I shouldn't say something that I might regret later (I doubt I would, because I've been wanting to tell them off for over 30 years, but you never know. A meteor might hit them and knock some knowledge or something into them.) Tomorrow is Thanksgiving here in the US and I am dreading it - not because it will bring back a flood of memories - Bob and I never really got into that much - for us, it was more of a day off work and let's have a nice dinner together. Our Thanksgiving tradition had turned into going to our friends' restaurant in Akumal - we always had the First Reservation. My friend emailed me and told me that we will ALWAYS be the First Reservation  And we would be joined by our Akumal Framily (friends that are family) and it was always just the BEST - but I'm not there so it won't be making me sad, being there alone. My friends wanted me to come down for it but it is just too soon for me to go back there yet. Anyway, I am dreading tomorrow because I know the phone will not ring. And even though I say and tell myself - walk away - there is still that stupid 6 year old part of me that REALLY wants my family to give a damn about me and check in on me and ask how I am doing and if there is anything that they can do for me. Right now, that answer would be "go to hell"  I have already unplugged my house phone. I think I will just turn my cell phone off tomorrow. As Jimmy Buffett says - if the phone doesn't ring, it's me!

@ForgetMeNot150- Bob worked as a carpenter for many years and loved working with his hands and woodworking. So between the two of them, I'm sure he and Craig are dreaming up some beautiful pieces for us and we are all going to have the absolute most magnificent Beach House in the Sky!  I like your vision and I am going to keep that with me. And thanks for the invite - I AM going to show up there one day! I have always wanted to visit New Zealand and that is one thing that Bob and I did talk about before he went up - he wanted me to go somewhere or do something that I always wanted to do. It won't be as fun or good without him but I know he will be with me in my heart. We never really talked about Life After Bob, we never took care of some things that we knew that we needed to - like financial stuff, log ons and passwords, what bills are due when - Bob took care of ALL of the financial stuff, I just spent the money  because we both thought we had more time together. I've managed to figure most of that stuff out - thankfully - and there are times when I will sit there in tears, asking Bob to PLEASE let me know the password or whatever - and it will just pop into my head. So I know he's hearing me and talking to me. I was outside with the dogs this morning and I was doing my Gratitude Practice - I still have SO MUCH to be grateful for and I have to remember that - and I asked Bob for a sign and a hummingbird flew up to me again. Taking care of the financial stuff has been a HUGE relief for me - it was really stressing me out. And I sat down with our accountant and figured out finances and I will be ok financially for at least 20 years unless I start flying in private jets and hire Jimmy Buffett for my birthday party  

Fun story - Bob's second cousin is Michael Utley, who is the keyboard player for Jimmy Buffett - has played with him for almost 40 years. Their grandfathers were brothers. Bob told me this early on when we had just met - we were talking about what kind of music we liked, which artists - he LOVED the blues and HATED Jimmy Buffett. I would drag him to JB concerts - I was in a Parrothead Club in SF - I had joined to meet people after I had moved there and I made some wonderful lifelong friends - and Bob even ended up being close friends with a couple of the men in the club. One year, Michael Utley was playing outside the concert venue and meeting fans and signing autographs and getting photos taken with people - so I went up to him and said - my husband is your second cousin. Michael was like - oh really? I'm sure that he had heard just about every line on earth in an attempt by someone to get backstage to meet Jimmy. So I told him - yes, your grandfathers are brothers. Again, he wasn't impressed. I went on - your grandfather's name was Jasper - which was his nickname, not his given name which is something really weird that I can't remember right now. At that, I got a little more interest. So, I pulled out the trump card - I told him - when you were 16 years old, you played at the Lotus Club in Helena, AR and there was a huge storm that came through and your mother called Bob's mother and you went and spent the nigth with them because you couldn't get back home that night. Michael looked at me, grabbed my arm and said - where's your husband? So the two of them connected, and Michael even called Bob a couple of times when the band came to SF - invited us down to the hotel that they were staying at for drinks one year - about an hour before we were going to meet him, he called Bob and told him that plans had changed - Jimmy's mother had passed away, and the entire band was leaving that night to head back for her services. I nagged Bob about getting me a meet and greet and he always told me - I don't want to impose on Michael.  He'd rather listen to me nag for 24 years? About two months before he went up, I reminded him that I had never gotten to meet Jimmy yet, so he couldn't leave - and asked him - why wouldn't you ever just ask Michael to see if I could meet Jimmy? He could have always said no. And Bob told me - because I was afraid that if you got to meet Jimmy, you wouldn't need me any more. AS IF. I think it was part joke, but I think part of him just dreaded losing me so much. His first wife had left him for his best friend, who was also his boss - another story for another time - and that was the ONLY rule that we had - if we're not happy, let the other one know. I miss him so much but sharing that story made me smile. 

I hope your mind is filled with peace, your hearts with love, your bodies with strength, your souls with courage and your life with joy. That is my daily prayer that I say each morning and any time I am not feeling very strong. Have a good day. The worst day of our lives has already passed - it can only get better from here. And our loved ones would want us to stay strong for them. Let's make them proud. <3

[KayC]

Sunshine,

I am sitting here crying as I read your post...it is so moving.  It could be written by any of us, change some of the details, but it was written by you...your story, your family history, your traditions, your Bob.  You know, for someone coming from the family dynamics you did, you've made a good life for yourself, you and Bob.  I know it's changed now, but I also know you will do your best with it, because that's how you are.  Yes, I've had to have the therapy too...if you knew my back story, well let's just say it's amazing us kids turned out as we did, but thankfully we had each other.

I smile as I picture you trying to figure out passwords and Bob coming to your aid.  Thankfully I was the one with the budget & bills, if it'd been me dying, George would have been in your shoes, but I forced him to sit down with me every month and look at this stuff, not sure how much he retained though. 

21 hours ago, Sunshine247 said:

The worst day of our lives has already passed - it can only get better from here.

So true, a thought that has occurred to me many a time.  People say it doesn't get any better...well "better" is a relative term.  Maybe not "better" as in "well", maybe not "better" as in like it was, but definitely it's never like that first day or week either!  We often don't see things improve until we look back and compare to that moment.  Then we see how far we've come, that we're doing it.

Thank you for sharing your Jimmy Buffet story too, your Bob sounds like such a precious soul!