Losing my Wife

Looking to the future
1

Hi to everyone here, This is my first post here.
My Wife passed away, on 6th December 2016. My Wife had MS, which she had for 40years. Janice , my Wife, used to get MS seizures, these would normally last for about 10-15 minutes, then she would sleep and come round after about half an hour of sleeping it off. On the Friday 2nd December, Janice, started to have a seizure, but it just went on and on, one after another, I tried calling the out of hours GP, but got no reply, I called for an ambulance, a paramedic arrived and said that it looked like she had an infection, which could have started the seizures, the paramedic, then called for an ambulance, they put Janice on Oxygen and took her to hospital.
At the hospital, Janice was given Oxygen and antibiotics. There was no improvement on the Friday night / Saturday morning.
I returned to the hospital, on the Saturday afternoon, there was some improvement, Janice was coming round for brief periods, which continued throughout the day.

When I went in to the hospital on the Sunday, I was amazed, Janice, was talking and laughing, although still a bit dazed, so I said that how well she was doing, that she would probably be home in a couple of days.

On the Monday morning, I phoned the hospital, to see what sort of night Janice had, I was told, that she had not had a good night, as she was struggling to breathe, they had physiotherapists helping with her breathing, I went to the hospital straight away, and could not believe the change from the day before. even though Janice was on oxygen, she was still struggling to breath, this went on all day , with the physios doing the best they could.
On the Tuesday morning. I phoned the hospital, they told me that Janice’s breathing was getting worse and that I should get there as soon as I could. They told me that the infection was now pneumonia, which at that point, her left lung was completely blocked. They said they were waiting for the I.C.U team, to come and assess her.

At 4 o’clock, we were taken into the relatives room, we were told, that they were going to try one more dose of antibiotics, if this doesn’t have any effect, then they will be withdrawing the antibiotics, and just leave her on the Oygen, as they said that it would be to painful for Janice, if they tried to resuscitate her. At 5 o’clock, the antibiotics stopped, Janice passed away at six minutes past six.

Ever since that day, I struggle without her, every second of the day, Janice is a Spiritualist, so I know that she is around me, I talk to her all the time, I tell her, how much I love her and how much I miss her and I feel that at times, that I should be with her.
My life now, is completely empty, I hate having to go out, as I can’t stand the silence and the emptiness when I come back. Although I was Janice 's main carer, we had nurses and other carers in and out most days, so there was always someone here, as we used to say it was like Piccadilly Circus, but now there is not anybody and I feel totally useless, as there was always something for me to do, like get her breakfast, get her medication, make a drink, make her dinner, do the washing, all these things stopped immediately.

Never had a phone call from the GP, the Nurses or the Carers company, its like we never existed, one thing that really hurt, was on the day of the funeral, the 30th December, I walked in the front door, there was a letter on the mat, I opened it, it was the final bill, from the carers company, for Janices care, I couldn’t believe it, this is how callous some people are, I thought , couldn’t this have waited until the new year, they knew when the funeral was, I was disgusted, not even a card.

Also I was fed up with all the letters from various departments, which all started with " Very sorry for your loss … but, we want this equipment back or sorry you are no longer entitled to that, there just does not seem to be any compassion anymore. I was on the phone for over an hour trying to get Janice’s mobile phone contract cancelled, it’s just crazy.
At this moment in time, I just don’t know what to do, I just miss her so much.
I apologise for this being so long and I appreciate anyone who took the time to read it thank you all

2

Urgh, what a barrage of utter insensitivity you have had to deal with. I can’t even find the words to sum up how angry this has made me. Sorry, that’s really not helping, is it?

I don’t think any of us know what to do. We just tend to go through each day with our emotions. What i have found though is, being honest about my feelings is better in the long run. I spent a lot of time covering them up, to make other people feel ok. And far too much effort was spent on appeasing others. When I don’t like something or want to do something I will say.

My dad’s partner and I wrote a letter of complaint about the appalling care he received in the final few months of his life. And yep, it was a case of sorry for your loss but…
I had a far more compassionate email from the water company than the one we received from the medical profession. The fact that they addressed the letter to the deceased showed that absolutely no consideration had gone into it.

3

Hi LoftheM,
Thank you very much for your reply. I think the medical profession always close ranks.
I forgot to add, that when my Wife was in hospital two years ago, a nursing assistant broke her leg, the nursing assistant, wanted to hoist Janice up to weigh her, Janice said I need my painkillers and muscle relaxants before you do this, she no you will be fine, Janice also said to her, shouldn’t there be two of you to hoist people up, her reply was, " No it will be fine there is no one else, they are all busy " as she started to hoist Janice up, she screamed for her to stop as her leg had gone into spasm, she lowered the hoist down, but this had resulted in her breaking Janices leg, behind the knee, they called the consultant and Orthopedic surgeon, when they came, they requested the hospital photographer to come and take pictures of her leg.
When I enquirerd how this happened, all the nurse on the ward had the same story " it was an old break , an old injury " I was not at all happy with this, so saw the Orthopedic surgeon, I said what’s this about it being an old break, he said, " Who told you that " I said that is what all the nurses are saying, he said " Definitely not, this is a fresh break , that has just happened " This conversation, was written down, by one of his Entourage, so I thought, that’s good, they have admitted that it happened here and it’s in writing.
Well, Janice did not want to make an official complaint against the person that caused it, while she was still in there, in case of repercussions, so when Janice came out of hospital, we lodged an official complaint, with the Chief nursing officer at the hospital, I told her, that we are not looking for compensation, we just want an apology and want the person responsible to be dismissed, as it was gross misconduct. We were told, that the inquiry could take 8 or 9 weeks, I said that’s fine, we just want an apology in writing, saying it was the nursing assistants fault.
Well, 9 weeks later, we could not believe the letter, that we received , they completely denied, that Janice asked for painkillers and muscle relaxants, or that there was only one person hoisting her up, they said that they know, where every member of their staff was at that time and what they were doing, we found this totally unbelievable, as how could they possibly know, what every one , on a busy hospital ward was doing at that time on that day 10 weeks ago, they had all joined ranks and come up with this cover up, at the end of the letter, they just said said " we are sorry for your Wife’s injury, which happened while she was in our care. Apparently, the person who caused it, was sent for further training. As I said, we just wanted a written apology from the person who caused it and admitting doing it, but this major cover up, looked like they thought we were going to take it to court, but what chance would we have stood, if we had, we would have had no chance

4

Hello Woody - I have just poured my heart out in an earlier post as I feel so much more shocking recently following the loss of my Husband nearly 9 months ago, but now I feel so selfish having read a couple of your posts and what you yourself have endured. I’m so understanding of your anguish regarding the hospital malpractice and I know how searing the pain is on your soul. Like as with your Janice mistakes were made with my Husband, things happened that shouldn’t have and all I now think about were the times when there were things going on that I DIDN’T know about and my Husband would not have caused a fuss. Like you my Husband was up and down but we didn’t think the worse would happen. He was displaying EOL symptoms but drs never explained what these were or I would have acted differently. I remember urging him to eat so he’d be strong enough to come home and one night I left his bedside to sleep in the relatives room as I thought my presence was making him unsettled but I found out later about agitation being an End Of Life Symptom. There was other stuff that I won’t bore you with but on the same ward some months previous a lady patient passed away having not been seen by a doctor for three days. Her family is suing but I no longer see hospitals as a safe haven and was brought up in an age where questioning medics was just not done - I would now, and wish I had then and this is a source of torment for me. I get what you mean about formal stuff, it’s shocking. So now it’s all we can do to get through the day in one piece and it hurts so much doesn’t it. I am not asking for happiness, just some periods of respite now and again. People will say to try Counselling and it’s ok if it works for you but both my cruse and NHS sessions were suspended after just two sessions as I was in too much emotional pain to take part. Apparently you have to be in a “reasonable” place emotionally to have counselling. I then asked a doctor at the practice where do I go from here - I’m broken and don’t know how to fix myself. To which the stony cold Dr said that was the only thing on offer so I now have nothing really. I wish I could say something positive for you, I truly do but words are just wholly inadequate aren’t they. All I can do is send heartfelt empathy and compassion and that I hope we all find some peace of mind and calmness soon. Warmest regards Woody.

5

Hi Tina,
Thank you very much, for your reply and your thoughts and very kind words.
Like you, I have no faith in hospitals or the medical profession.
I keep going over it in my head and it is haunting me, as to why Janice, was so well on the Sunday, she was laughing and talking and very happy , there were no signs whatsoever, that she was having breathing problems on the Sunday, yet on the Monday morning, that had all changed, Janice could not breath and then on the Tuesday she had gone. I keep asking myself, how did this happen to someone, that had improved and the antibiotics had worked, I Really did think that in a couple of days , that Janice would have been home, I even said this to her, as I could not believe how well she was.
But then, I thought, there is no point in trying to get answers from them, as they will make something up and fib me off.
I keep telling myself, that I should have stayed with her on the Sunday night, as I am convinced something happened that night.
I feel so guilty, that I feel I should have done more and there is nothing I can do now, it just s haunts me all the time. Sorry that I have gone on and in Tina, the thing I always say to people is, that grief does not come with a user manual and we are just put into this horrendous situation, without any idea of what we are going to do or how we are going to get through it.
I did not know that about the conditions for councilling with Cruse, I am on the waiting list, but I have a feeling that it will not work for me, I have also been thinking about taking antidepressants, but I am so worried that I would not be able to stop taking them, as you HERE the stories of people that get hooked on them.
Tina, this is such a cruel world, I am really greatfully sorry for your loss, I am really sorry that I have upset you, but at least being here, we are with people in the same situation, who will not judge us, how ever we may feel.
Take care, my thoughts are with you

6

Hi Tina,
Just read through what I had written and I hate the predictive text as that should have read Hear and not HERE, sorry this makes us look so stupid sometimes, I wish there was a way of turning it off, I hate a machine, trying to anticipate what I am going to write, so sorry for my stupid machine making the spelling mistake

7

You’re so right. They do close ranks and sadly in the age of litigation this is the norm. My dad went to a doctor and a specialist who both fobbed him off for months, saying the pain in his leg was muscle wastage.utter BS, he was an active man. Turned out he had secondary cancer in his bones. Now I don’t think for a minute that had this been realised months previously, it would have made any difference to the inevitable outcome, as he had cancer in several places, it kills me to think that this wonderful man was fobbed off with ibuprofen and several wrong diagnosis, probably because of his age and not wanting to make a fuss. Due to logistics of having to fly from a small island to a bigger one for MRI and cat scans, biopsy and of course that meeting with the oncologist to deliver the news, we felt that he had been given no thought to how all these individual trips affected him. Their response was, “we weren’t made aware he was in any pain”. I mean, really?

All we asked for, is that they review their processes and take into consideration that some of their patients do have to get on a plane. To make an appointment with an oncologist at a time, when the patient isn’t looking at their watch, worrying about having to get back to the airport to catch a flight home.

I don’t want to generalise, as I know from my own experiences that there are lots of incredibly caring people in the medical profession. It just saddens me that my dad, who gave so much of his time to help raise money for cancer charirites, died from the wretched disease and received such little care from those he put his trust in.

My anger is gradually fading, but it will never go away completely. The fact that he didn’t suffer for long is small consolation, but it’s better than nothing.

We can only hope that lessons have been learnt.

My thoughts are with everyone on here, going through such difficult times x

8

Hello again both Woody and LoftheM
What you both say is so very, very unsettling and makes an horrendous loss even worse - should that be possible. It still haunts me as it does you Woody as my Husband looked like he’d be ok, not fixed, but ok and we were told he would have a couple more years then when I went back later in the day things were completely different and as much as I wish I knew why I don’t think I could take it. LoftheM, you have come a long way for your anger to be fading somewhat, anger is such a painful emotion isn’t it. Woody, don’t let me put you off Cruse, you can resume if you feel you need a break but my volunteer wouldn’t resume as she said I was negative and repeating my story - which I was but when I rang her back asking if I could pick up as I thought I was now experiencing complicated grief several months later, she didn’t agree. Some have positive experiences with Cruse and I have heard a few on here that have had bad ones and then of course, I believe personalities may play a part. I wish you well, I can’t think for one minute it’s an easy option but some seem to take to it. I have been given many times different Anti-depressants but always refused, I’m not being brave simply I am very scared of the effects. Take care and kindest regards. Oh yes Woody, I think many of us have fallen foul of autocorrect only I don’t know how to turn mins off either.

9

Hi Tina,
I am really sorry if I have upset you, it was not my intention to upset anyone, I am just trying to make sense of tings and so far, I cannot get it to make sense, no matter how many times I go over those couple of days.
I am really deeply sorry, I do not mean to upset anyone please accept my apologies

10

Surprisingly, the anger can be more consuming than grief and bizarrely it was that anger that kept me driven and together for quite some time, before and after.

Tina, i daresay you’ve heard all the downsides of anti depressants so i thought I’d give you a positive spin on them. I took them after I had my second child. I didn’t cope at all and as she was my second I felt like an utter failure. I was fine with the first so why was I falling to pieces and wishing that i didn’t wake up second time around? Anyhow, i went on mild anti d’s and, although I wasn’t suddenly filled with elation or devoid of any feelings, i felt that i could handle my emotions as i would have in normal circumstances . I’m not saying that they are the magic solution for everyone, just that they aren’t necessarily the devil incarnate.

I truly hope you both find some level of peace. Even if it’s a teeny tiny slither.

11

Woody - I’m terribly sorry if I made you think you had upset me, honestly you didnt. In a clumsy way I was just trying to say for both of ys, and all of us that have experienced these circumstances on top of our loss it just adds a whole complete extra layer to our sorrow. There is definitely no apology to be made whatsoever. What I mean by unsettling is that it’s harder for us as Grievers to accept things when we are thinking things could have been prevented. I just keep going over everything repeatedly ( the professionals call it “rumination” I believe ) but I, like you can make no sense of things whatsoever. I don’t know if in our mind we subconsciously do this to try to create an alternative outcome. Please, please don’t think there is anything to say sorry for. I was struck by how similar your circumstances were to mine regarding our hospital experience and I understand how hard it is to have seen your loved one improve and then everything going so inexplicably wrong. It’s a bit like PTSD in a way I’m sure. Once again, please don’t feel any apology is needed or you have caused any upset. Take great care and keep posting, kindest wishes.

12

Hi Tina,
Thank you very much for your reply, I mis understood you and really thought that I had upset you. I am pleased that I did not, so I am very relieved, as it certainly was not my intention.
I can only relate this to what I call " Groundhog week" as it is not on just one day, I just go over and over it, as you say, similar to PTSD, as we are reliving it all the time and it’s very hard to explain this to people.
My Daughter has said to me, you have got to snap out of this, that upset me quite a lot, as I can’t just turn it off, how can I all of a sudden, just stop the grief I feel for the loss of my Wife .
There are so many different stages we go through on this horrendous journey and we have no control over any of it, it’s like being in a car with no brakes, never knowing how or when you are going to stop.
I am just so glad, that there are groups like this, where people can really understand us, because I have found, that most people, try to avoid us, as they think, Oh, not that again, I don’t want to hear that again, so you become isolated from people, as their attitude is, " Haven’t you got over that yet " and I think wait until it’s your turn to go through this, then say that to me.
Tina, take care, my thoughts and prayers are with you

13

Thanks LofteM I do appreciate you telling me that. All my family say I should have been on them long since. Who knows, I may well have been much better by now instead of struggling and having to take them in the end but we think we are doing the best thing at the time. Thanks for your kindness.

14

Hello Woody again, thanks for replying. You are quite right about Groundhog Week. If we can’t let something go, we simply can’t let it go and I can see why you would have been upset with your Daughter’s reaction. It’s not a conscious decision by us to be dwelling and dissecting everything it’s the ongoing inability to reconcile what happened and it’s a living purgatory to be frank. the “what if/if only/the unanswerable/unanswered” scenarios are very difficult aren’t they and if we are unable to outwardly verbalise our worries we internalise them, causing us (at least me) to become quite hard to live with. Don’t let anyone rush your grief Woody. If you do decide to do Counselling I hope it all goes well and I hope you get a good volunteer. Don’t worry too much about those who try to dismiss your feelings, especially those with their life partners as sadly, they know not the magnitude of devastation they too will have to endure. Well, I have certainly chewed your ear off today Woody so I’ll leave you in peace and send you compassionate thoughts.

15

Hi woody, my wife TINA passed 10 months ago 1st September . I took her to hospital with stomach pains on our 28th wedding anniversary thinking they would give her antibiotics. But no they kept her in and she passed away 4 weeks later. But in you earlier post you say your wife was a spiritualist . Take comfort that she is with you and keep talking to her . I talk all the time to Tina . Believe me our wives are with us. A few weeks back I took a random photo of our dog and thought nothing of it . Then a few days later when I looked closely at it I could see my wife behind the dog. I since shown others the picture and asked what they see and they all see her . Then my son in the house on his own (23 years old) was standing in the same place as I had taken the photo and he hear a voice say hello hello hello. It scared him but he knows it was tina… so belive me your wife is with you. Although I do feel so lonely even when in groups and so dead inside . This is the only thing that helps the pain. Sorry to witter on my thoughts are with you all . I hope we all find our own way to come to terms with our losses