I don't know where you are, or even IF you are. Probably not. I am still here 6 months on. Sometimes barely living. Other times I think I am ok. But I will never again be as OK as I was with you. I miss you.
In a couple of days it will be 6 months since Jane died. In those six months I have come to terms with many of the things that have happened before and after her death. Now that I work in the home care sector myself, I am acutely aware of some things people (including myself) did wrong when caring for Jane. I don't blame myself for any of it because I did the best I could. But some things make me very sad when thinking about how awfully exposed and vulnerable Jane must have felt. And she was not able to tell me. Not able to tell me that perhaps she wanted people to knock before they entered the bedroom etc. Just because I did not mind, did not mean she did not mind. But I never asked. And she could never tell.
Once, Jane had a male carer coming in and her face changed. I asked her if she felt uncomfortable with him washing her. She managed to indicate that she was and so I sorted it so that she would no longer have male carers. Maybe that is being picky or unfair to those carers that want to help but no man had ever seen Jane's private parts and a few weeks before her death did not strike me as a good time to change that habit.
In my recent training, a lot of time was spent on how to preserve the dignity of the patients by doing really simple things. For example, sometimes Jane would be on the commode in the bedroom and I would be making the bed. Since we were so close, it never occurred to me that it would be nice of me to leave Jane alone for a few moments, even if I just hovered outside the bedroom door. Instead of being around when she was doing her private business. The fact that Jane had lost some of her inhibitions due to the tumour did not mean I should not observe them. But I didn't. I just did not think about it. I did nothing to embarrass her or anything like that. But when you are together for so long, you get quite comfortable around each other and stuff we used to do kind of got pushed to the side for the sake of practicality. We never used to share the bathroom. So why did the fact that Jane could no longer go on her own mean that I had to stay in there with her?
I don't know, but I did.
I did not once consider that hoisting her in and out of the bed might be making her feel very undignified and upset. I was thinking in such a practical way that all I could see was how useful the hoist was in getting her in and out of bed, enabling Jane to be in the living room with me and her visitors. I did not think to consider that even if Jane would appreciate the practical use of the hoist, it might still be extremely upsetting for her to have to even need one in the first place. Why did this not occur to me?
I don't know, but it didn't.
When I think about this, it makes me cry. (I am crying as I type this). It just makes me so incredibly sad to think she must have felt like an object, rather than a person at times. People talking about her, (including me and the carers) over her head, at her bedside as if she wasn't there. Nothing delicate, nasty or gossipy as such, but just stuff like: what does Jane want for breakfast, does she need the toilet, etc. Just because we already knew Jane was unable to answer does not mean we should not have addressed her FIRST with those questions and then only come to a decision if she was unable to answer. That would at least have given Jane the feeling of having some say in what was happening to her.
Mind you, it wasn't always like that. Just that we all slipped up sometimes and we should all have spent a little more time on making sure Jane's dignity, both in choices and in personal care, was the highest priority.
Two examples stand out that are very upsetting for me when I think about it. So I can only imagine how upsetting it must have been for Jane. In both cases, in retrospect, I failed to put Jane's feelings and well-being first.
The first one is related to the use of the hoist to put Jane in a chair in the living room. I posted about the nightmare we had when we first tried to use it in this blog post: Difficult Weekend.. My current training emphasises over and over again that all staff must be trained to use equipment and if you are not trained, you must not use it, no matter how much the patient/family would like you to. The carers did not know how to use the sling Jane was given when they delivered the hoist. They should have said: sorry, we can't do it.
But they didn't. Because they knew how much I liked for Jane to be in the living room. And because they thought: How hard can this be?
This was a big mistake. They had no idea of what to do. We all faffed around the bed, rolling Jane around to get the sling around her body, lifting her, putting her back down again when we weren't sure. Finally we decided to try it and hoisted Jane off the bed. Immediately she began to slip out of the sling and it was obvious she was going to fall out of it, on to the floor. I panicked and thought I noticed Jane had wet herself as well. So we quickly put her back on the bed and decided to leave her in bed for the day since we clearly did not know how to use the hoist.
I cried. I apologised to Jane. But the tears in her eyes broke my heart. She must have felt like a piece of meat on a butcher's hook. Suffer the indignity of being a Guinea pig.
The next day, the carers tried again. This time it almost went right but when putting Jane back in to bed, she once again slipped out of the sling and we had to grab her by the arms and legs and throw her on the bed to avoid a fall. Once again I cried. Once again, Jane had tears in her eyes.
It turned out that the sling we used was only suitable for people with good upper body strength. Something which Jane obviously did not have. Secondly, the carers were not trained to use that sling, even if it had been the correct one. And thirdly, I was so keen to get Jane in the chair that I did not realise the benefits of being in the chair might not weigh up against the terrible indignity Jane suffered by being in the sling.
Someone should have said: we can not do this. I know that person wasn't me since I was not a professional carer then. I know the carers were at fault. But if I wasn't looking out for Jane, then who was going to? Why did I not stop them? Why was it so important for me to do this hoisting? The carers should have said: Sorry but you will have to wait until Monday when our supervisor can give us training or come to Jane and give her the correct sling.
Or what about the two district nurses who came in one night to put in a catheter? They took the duvet covers off, propped Jane's legs up and proceeded to spend half an hour prodding the catheter in to different holes, talking to each other about how difficult it was to see, shining a torch on Jane's private parts. I held Jane's hand as she winced in pain a couple of times. A tear rolled down her cheek. It never occurred to me to cover her up with the duvet as much as possible. After all, she had a t-shirt on. It never occurred to the nurses to talk to Jane about what they were doing to her. After all, she was unable to understand. So they talked to me, I talked to them and other than me soothing Jane, nobody made her feel part of what they were doing to her body.
I know better now. And that is what makes this so upsetting. I *know* I did what I could. I *know* the carers should have done a better job at times. But even so. Some of this seems so obvious to me now. Why did I not think about it back then. Just a small things I could have done to make things a little more dignified for Jane.
I cry when I think about this. I am determined to make sure the people I care for will never have to feel like their dignity is just an afterthought.
Jane was a wizard with Microsoft Excel. If you were a friend of Jane, it is VERY likely that at some point you asked her for advise on a spreadhseet related matter.
Complicated formulas? Ask Jane.
Making a budget spreadhseet with automated formulas that automatically calculates stuff? Ask Jane.
A Gantt chart that automatically updates itself when you change a detail? Ask Jane.
She did not know this because she knew Excel in detail. She knew this because her mathematical brain realised that there must be a way to capture your requirement in a formula. She would think of that formula and then seek a way to implement that formula in to Excel.
Many times I would ring her from work with a quick question about a problem I was having. She would usually solve the problem for me whilst I was still on the phone. In exceptional circumstances, she would call me back a few minutes later with the answer.
This evening, I am trying to put together a cleaning rota for my shared house. There are 5 tasks and 5 rooms/occupants. Easy enough I hear you say.
However, there are 2 bathrooms. Bathroom 1 is only used by rooms 1 and 2. Bathroom 2 is only used by rooms 3, 4 and 5. So those cleaning tasks are fixed. Leaving the other 3 jobs to be allocated fairly. Obviously the problem is that bathroom 1 only has 2 people cleaning it and bathroom 3 is on a 3-person cycle.
Jane would know how to do this. She would first think of a formula that would fit this pattern. Then she would look at how to implement this formula in Excel. She would have scoffed at my method of doing it by hand.
Never thought a spreadsheet would break my heart.....
Warning: Long self-indulgent post. Written more to get stuff off my chest than to inform the world... If you can be bothered to read until the end, you are impressive.
Losing your partner is like nothing else. It is not like losing your child, parent or dear pet. And it is certainly nothing like divorce. It is unique. Not worse. Different.
Since I don't know any other widows, I went online to look for support and understanding from those who experienced the same kind of pain of losing your spouse at a young age. My first impression of the messageboard was that many people were just so....angry.
I have had a lot of emotions about Jane's death but anger is not really one of them. Nobody is to blame for her death. The doctors did the best they could. There is no God so nobody to blame. So who am I supposed to be angry at?
Much of the anger of the people on the messageboard seems to be directed at those people they refer to as a DGI: Don't Get It. Cruel remarks, ignorant invitations and evil utterances from people that are supposed to be friends.
Things such as: Now he is dead, it enables you to travel. Are you not a little glad he is gone?
Or: She's been gone for 3 months and you are still not ready to date again?
Or: I know exactly how you feel because my cat died last month and I am very sad about that.
People really say that? What kind of friends and family do these people have? No wonder they are angry. No wonder they flock to a messageboard to vent. However, there was also a lot of anger that I did not understand. Anger about totally innocent remarks that I just could not interpret they way they did. Quite apart from the fact that I don't like the idea of dividing the world in to Good People (Widows) and Bad People (DGIs who have to prove they are wiling to try and understand before they are allowed in to the Understands category, although they will never really be accepted there).
Like the woman who was angry at her friends for inviting her to a dinner party. How dare these people think she would enjoy spending the evening with a married couple, having to watch them be happy together and pretend all was fine when she had just lost her future. How insensitive of these friends. Very DGI.
Or the woman who felt incredibly annoyed when her neighbour invited her to the neighbourhood BBQ. How dare this woman think she would just be able to enjoy herself? Spend the afternoon with happy families around her, talking to people who really don't give a toss about how devastated she is feeling and most certainly don't want to hear about her grief. How insensitive! Typical DGI.
Pardon? I might be missing something but how did these people even make that leap? How can an invitation, probably extended by people who care and wish to give you a chance to be amongst other people be turned around into something that is apparently deliberately nasty? What is wrong with thinking: They mean well but I am not ready for that. Why is it their fault for even asking?
At times I would point out that these people most likely had good intentions and that I was at a loss as to understand why this was an example of 'DGI behaviour'. Surely by thinking like this, these people (mostly women) would push away people who might be able to offer support, thus prolonging their loneliness and increasing their anger? Wasn't gentle education the better way, instead of dismissive anger? I was told a few times that I was wrong.
I then committed a cardinal sin. I wrote a long post about seeking common ground with those who have not lost their spouses but may be able to understand parts of our pain.
The woman whose husband left her suddenly might understand the darkness and loneliness of spending Friday nights on her own with no company to look forward to at the weekend. She might understand how her future has been destroyed in the space of a few minutes. How all her hopes and dreams have to be re-evaluated. If she said: I understand how you feel because I am divorced, I would punch her on the nose. However, if she said: "I can imagine what those empty, cold evenings are like because I too feel like that some times." then we can talk about our shared pain and find understanding.
Or the guy who lost his dog. He should not say he understands my loss because he lost his dog. I will slap him. But he might say he understands how the house is suddenly so empty, so devoid of life, no joy.
I explained how this felt like a good way to get support from people you may initially think have 'nothing to offer'. And by actually mentioning this to your friends, it might break down their barriers. Because they might think: I have 'only' lost my grandmother so I should probably not talk about my loss to her. By doing this, you might open up a whole new avenue of support and dialogue with your friends.
It did not take long for the backlash to start. A few people wrote to say they agreed with me. Then a few people started telling me I should not tell other people how to grieve. That I was wrong. That I was being a DGI myself. They said that I was asking them to smile at people who compared their loss to the loss of a pet. That I was saying their spouse was worth no more than a dog. Or a goldfish.
One widow wrote a long message explaining how she was extremely worried about me and my grieving. That it was obvious that I was not doing it right. That I was clearly consumed by anger and jealousy and that I was lashing out at the other widows on this board by telling them they were doing it wrong. She even sent me her phone number and urged me to contact her when I got to the USA. When I kindly rebutted her, others came out of the dark, telling me I was entitled to my opinion, even if I was clearly wrong. That I was deliberately hurting and attacking people. That I should realise that my posts can be hurtful for people who are only recently widowed and that I should give people time to come to this kind of rationalisation on their own. Clearly the fact that I realised all this after only being a widow for 6 months made no difference.
For a couple of posts, I tried to explain they were misinterpreting my words. This was followed only by more accusations of 'not being open to other people's opinions'. My anger and pain were clearly hidden under a blanket of detached rationalisation.....
I gave up. I told people I no longer wished to be part of the messageboard if the only 'correct' way of grieving was to be angry at people and demand the world revolves around you at all times, no matter what other people around you might have gone through or have to offer. Apparently, this too was a sign of my thinly veiled anger and jealousy (at who was not quite clear, but they were all convinced I was angry). My departure was greeted with: Don't let the door hit your ass on the way out...
Wow....I mean.... really?
Needless to say none of these people has ever read my blog or they would have known I am a lot of things but not angry or close-minded. It does not bother me really. No really. It does not anger me. It has just completely confused me. I can not for the life of me understand why I have offended people so much. I hate offending people and if I did say something offensive, I would like to know what it is exactly so that maybe I can adjust my words for next time. But my repeated asking for the exact offending words was greeted by: I am not even going to bother because you are clearly not willing to listen....
I find human emotions often very confusing. I like people to explain why something upsets them so I can learn and understand them better. It is just incredibly sad that even in a place that is supposed to offer support to people in a similar situation, there is a strict rule on how you are supposed to behave and disagreeing is not allowed.
I guess I will just stick to me real life friends. Because although none of them have lost their partners, most of them understand me perfectly fine.
I miss Jane. But when I think of Jane, I think of Jane the way she was the last 10 months of her life. When I see pictures or watch footage of the last 10 months, I get a lot more emotional than when thinking of the Jane I married years ago. That Jane seems so far away. Almost a different person that needs to be mourned separately.
Why? I don't really know. The last year we had together was so incredibly intense. It was filed with nothing but love. My love for her reached a depth I never thought possible. The feeling of being responsible for her, that it was up to me to make her as happy as possible and to keep her safe was rewarding. Yes, in a selfish way, it gave me a purpose. The feeling of being needed by someone you love so much is a very powerful stimulant. It keeps you going when you would otherwise have given up.
And frankly, Jane was just very endearing and cute when she was ill. Yes, it was sad to see her mental capacity decline but on the other hand, she also became more 'cute': she wanted to cuddle all the time, wanted to hold my hand whenever we stepped outside, told me she loved me all the time, trusted me, smiled at me. All the things we sometimes forget to do when we are living busy lives.
This Jane was only Here and Now.
She was not our past and not our future.
I miss caring for Jane. I miss my hand being held. I miss the smile she gave me when we were watching Doc Martin. I miss her. But......
That Jane was ill. I miss that Jane immensely. But to a certain extend, I can accept that she died. That Jane was a different version of my Jane. That Jane was ill. That Jane was dying. The outcome was inevitable. That Jane was always going to be temporary. That Jane was suffering and is no longer suffering now. So I can more or less accept that without anger. Just sadness.
Recently, when thinking of Jane, I have started to think of the healthy, happy Jane I knew for so many years. The vibrant, beautiful, witty, funny and fiercely intelligent woman who stole my heart. And I think of the good times we had. Of the future we had planned. Of all she had to offer to the world. Of what we had together.
This Jane had a future and a past. With me.
This Jane was my life. My future.
Of what we will never have.
And I cry. And cry. And cry.
And the feeling of incredulity has arrived. I constantly wonder: How the FUCK did this happen to her. To me. To us? What happened?
But mostly: I miss her so much. The future looks so empty. I am not saying I will never meet anyone else. I probably will. But the idea of never having Jane in my future is beyond words.
And I cry. And cry. Last week was absolutely terrible. I was unable to function. I just cried and cried. Did not go to college. I just cried.
I have massive pictures of Jane on my wall. They gave me comfort when I was mourning the ill Jane. Because they reminded me of what she used to look like. They helped me remember the happy, healthy Jane. Now these same pictures make me cry. Because they are not just pictures of Jane anymore. They have become knives of memories that cut so deep. Like they are actively trying to say: LOOK AT THE LIFE YOU ARE MISSING! The pictures are rubbing in the fact that I will never have that again with Jane.
I am worried that this phase of mourning will be much harder to overcome. Much harder to live with. It is easier to accept a sick woman has died than a healthy one.
I am so incredibly lost. So incredibly sad. So incredibly empty.
Fijn dat je de moeite hebt genomen mijn website te bezoeken. Het doet me veel dat mensen die ik helemaal niet ken interesse tonen in Jane's verhaal.
Laat een reactie achter als je dat wilt. Ik vind het altijd fijn om te weten wat mensen denken. Of het nou gaat over mijn website, over wat ik schrijf, over je eigen ervaringen met een overleden partner, kanker, hersentumor etc. Nou ja, wat je ook maar kwijt wilt.
Je kunt me ook emailen als je dat prettiger vindt: msvink apestaart gmail.com.
Ten slotte wil ik je nog graag wijzen op Jane's website waar je onze reis van 6 jaar kunt volgen. Ik heb de hele tijd een weblog bijgehouden, vanaf de diagnose tot aan haar dood.
Ik zou het heel erg fijn vinden als je een donatie kunt maken aan het hospice dat zo ongeloofelijk goed voor Jane heeft gezorgd. Wij zijn daar allebei met zo veel respect en liefde behandeld dat ik dat nooit terug kan betalen met geld. Maar ik kan het wel proberen. Met jullie hulp. Of het nou 1 euro is of 100 euro. Elke cent helpt.
Klink de link voor Just Giving en dan kun je met je credit card of via PayPal doneren. Mocht je dat liever niet doen, geeft niks. Maar misschien kun je dan kijken of je iets voor je eigen lokale hospice kunt doen. Ze zijn altijd op zoek naar vrijwilligers.
In elk geval heel erg bedankt voor je bezoek en interesse.
Going through files on Jane's laptop, I found this unfinished blogpost she wrote about her radiotherapy. It dates back to 19th March 2009. The radiotherapy had finished a month earlier and Jane was suffering with severe side effects from the treatment.
I am going to try to convey what it is like to have finished radiotherapy and the side effects that go along with it. Whilst it hasn't all been plain sailing, the side effects to report at present (my treatment lasted for six weeks from 05/01/09 to 18/03/09) are tiredness, forgetfulness, stupidity and generally feeling like my brain is wrapped in cling film. I feel like I am totally unable to function.
Also, I am still on the steroids (tapering them off slowly) which means that I am quite hungry and need food. I try to eat fruit and healthy cereal. Thank the lord for cornflakes with raisins.
The tiredness is a direct effect of the treatment but it is not really known why this happens. If you are taking steroids these can also cause tiredness - particularly when you stop taking them. Travelling to the hospital for treatment can also be a cause of tiredness. Unfortunately, the tiredness does not go away immediately when the treatment ends, but usually carries on for at least six weeks. Getting better is a slow process. The steroids cause havoc with my appetite. I feel hungry all the time so I EAT EAT EAT. It's difficult to have any control but I must otherwise i'll just get bigger and bigger.
I don't fit into any of my jeans anymore so my wardrobe is limited to tracky Bs and PJ trousers. Both very comfy but not suitable for leaving the house. And i'm developing some shocking stretch marks which is probably the most upsetting part. I am losing weight slowly (too slowly) by eating sensible things - bleugh - and limiting portion sizes and going to the gym regularly. UGH. I have a scan in a couple of months to see what effect the radiotherapy has had. There's no point in doing it sooner because it will all look abnormal and will worry the radiographers. I will keep everyone updated with the results. I spoke to my consultant the other day who said I was looking well, which was nice. Made me feel less blimp-like.
With Jane's death, I grieve the loss of so much more than someone I merely loved or was close to. I grieve instead the loss of the one I loved most deeply, cherished and felt the very closest to. The one I swore commitment to when we married. The one I shared the ultimate partnership with to live as one.
The one who embodied my true sense of home. The one who was my best friend and who was to be my companion for life. The one I confided in, depended on and trusted most. The one who really knew, understood and accepted me as I am. The one I felt safe and protected with. The one I shared private moments and intimate feelings with. The one I mated souls with.
But it is not just that this most precious person has been torn from my life, as unbearably heartbreaking as that alone is. With Jane's death came other losses I am grieving for:
The loss of who I was when I was with her.
The loss of the couple I was once half of.
The loss of the life partnership we once formed.
The loss of the 'wife' role I once embraced.
The loss of the life I once lived.
The loss of the plans we once made.
The loss of the dreams we once shared.
The loss of the future I once envisioned.
Amidst all this, I am also suddenly confronted with many hardships I never expected to face at this point in my life. Additional challenges less apparent to others but all too real and terrifying to me. I must now find it within myself:
To create a new identity.
To redefine my role in life.
To establish a new connection to the world.
To build a new network of social relationships.
To discover a new sense of purpose.
To formulate a new set of goals.
To decide on a new direction for my future.
And I have to do this without dishonouring my former life, but while suppressing bittersweet memories of that life, so that they not hold me back. Memories of happier times mostly, but also those of Jane's illness and death. I have to deal with the feelings of guilt and disloyalty as I attempt to forget and move forward, but with my heart still tied so tightly to the past.
And I have to do all these things at the lowest possible point of my life in the worst state imaginable. When I am the weakest, most vulnerable, most insecure, most isolated, most heartbroken and most emotionally exhausted I have ever been. Without that one person I am so used to relying on to help get me through life's greatest challenges. The one who, just by being there, would have provided me emotional comfort and support to draw upon, as well as the strength and confidence I need to complete those tasks and so much more.
It is now 5 months since Jane died. How am I doing? Am I healing? Are things easier now?
When Elisabeth Kubler-Ross introduced her 5 stages of grief (Denial, Anger, Bargaining, Depression and Acceptance), she meant well but in a way did a lot of damage. Those who have not experienced grief more or less expect us to go through these stages in a linear fashion, one after the other. That means that after a while, we should have reached stage 5: Acceptance.
Well let me tell you: the 5 stages are bullshit. I was never in denial or angry. Nor did I ever bargain with death. I never felt guilty. I feel regret about things I said or stuff we did not do. But not guilt. I accepted Jane's death from the moment she died.
So the only 'stage' left is depression. Well yes. The love of my life, my past, present and future has been taken away. Nothing left but darkness, loss and sadness. So I am depressed. Not suffering from depression. But I am depressed at the moment.
I have good times with people. I have no good times on my own. Ever. But why is it harder now than it was 3 months ago?
Healing happens when you encounter situations in life that you would have faced with your partner and suddenly you are alone facing them. And then you find you CAN live through those situations. And the second time that situation comes around, you will find you can cope better.
I believe this is why I, like so many widows, I found the first few months after Jane's death 'easier'. Those first few weeks and months, I was so engrossed in my loss that I did not really experience life. So I could not heal. Once I started to get back to life suddenly I was shopping and cooking for one, out with friends for whom life has more or less gone on as normal whilst my entire life and future lies in ruins before me. Bit by bit, I came across bits of life that used to include Jane but no longer do.
So instead of an all-covering grey blanket of loss and depression, it has now changed in to a daily parade of sharp moments of shock and loss. In the early days, I expected, and was expected, to cry all the time. These days, I can be 'perfectly fine', actually feeling ok and enjoying something when suddenly, out of the blue, something triggers a memory or emotion. And then I just crumble. And then it passes and I get up again. Until the next moment.
My pain has nothing to do with how long it has been since I last spoke to Jane or how long since I last touched her. Grief is about that one moment, no matter how long after her death, that one moment when I really need her and she's not there.
It is like walking around town, knowing there is a sniper waiting for you. You KNOW he will shoot but you don't know where he is or when he will strike. So you don't know what to avoid, where is safe.
This gives me two choices: I hide from my Grief Sniper by curling up in a ball in my house and never participate in life. This will mean more prolonged but more shallow grief. Or, I go on as normal as possible, knowing I will get hit and that there will be moments of very intense pain.
I choose life.
But please don't expect me to enjoy it yet.
PS: I took our wedding rings to a jeweler and asked them to create this necklace. I love it.