After having lost the love of my life to cancer in spring of 2018, I want to share some reflections on what I have learned in the role as his carer, and on my grieving process. I hope this blog will be of help to some.
In my previous blog posts, I have told you about the time when my man was sick, our journey through this very difficult time and the end of his life. In this blog post, I would like to tell you what I feel I have learned from the time when I cared for him. My hope is that some of the things I am going to write will help some of you who are still in the role of a carer and make some things a little easier for you. But, before I tell you what I have learned, I want to emphasise that I am not medically trained but someone with a keen interest in end of life and palliative care and (I hope this doesn't sound arrogant) a good understanding of the cancer my husband had and the impact it had on him and both of us physically, emotionally and mentally. I am writing here about my own experience but, since Paul died, I have been reading and talking with experts and so when I say "we as carers" or "many of us" it is because I know now that what I experienced is experienced by many carers.
1. What I have learned is that, in emotionally challenging situations, I become a "doer". What got me through the very difficult months from the diagnosis of Paul's liver secondaries to Paul's death, and even a little beyond it, was to be a "doer". I attended every single consultant appointment with him; and, later on, I even went along to every scan and every blood test. I spent hours in front of the computer researching alternative treatment options and on prostate cancer and caregiver fora where I was hoping to learn a lot that would be of help to us some time. When I was not trying to work out some way to beat this horrible disease, I was making sure Paul had his medication on time, I made sure he ate and drank enough, I made sure he got a little bit of exercise every day, I made sure that our closest relatives rang him on a regular basis to distract him from his discomforts, I did most of the house work, I did most of the cooking, I paid our bills, I went to the bank, I did most of our shopping and I was tryint to hold down my job as therapist. I am not telling you all of this to say, "Look, how wonderful I was! I did all of those things!" The reason I am telling you all of this is to show you the extent to which the "doer" had taken hold of my life. And, even when Paul took his last breath, when I felt his heart stop under my hand, my default reaction was not to sit quietly and say a final goodbye, my reaction was to get up and say, "I need to get the nurse to take note of Paul's death." What I never did during all those months when the "doer" had such a firm hold of my life was to let the knowledge that we were on the final stretch of this journey come to the surfice.
The "doer" is good in one sense because it is one of many coping mechanisms. We don't allow ourselves to stop and think because, if we did, we would become very sad, maybe desperate, we would feel our pain so much that we don't know how we can cope. So in a way this "doer"-mechanism is a protective mechanism. It allows us to keep going, it motivates us to keep going, it keeps us strong, it maybe even helps us not to give up hope.
However, the disadvantage of the "doer" is that we actually never stop to take a minute to familiarise ourselves with the IS-situation. The "doer" says, "Don't think don't look! Keep going. Do, do, do. Put in as much effort as you can. Do as much as possible in the shortest time possible!" and it doesn't give us access to our deep inner knowing that we have come to the final stretch of this journey whereas, when we are in what IS, we say, "Ah this is so so sad! I see your suffering! I see your pain and I see my pain and there is not much I can do to make it better!"Living in the What-Is is certainly sadder, harder, much more difficult, and if we were in it all of the time we wouldn't be able to do half the things we do as carers for our loved ones. But we have to be in the What-Is occasionally in order to see things for what they really are both in ourselves and in our loved ones.
I know that, if I had been able to calm the "doer" down a little bit during the final months of this journey, Paul and I would have had more quality time with less strain and struggle but with the ability to see life for what it was at that very moment.
And, after Paul's death, it took me weeks or even months to feel less stressed and less agitated. My body and emotions and mind really had to get used to having less stress and pressure all the time and it was then that I was able to feel the extent of my exhaustion and tiredness, something the "doer" had never wanted me to acknowledge.
So what I am suggesting is: Now that you have read this, perhaps you can try and slow down a little, perhaps you can try not to be 200 % at everything, and perhaps you can find more emotional and mental space that allows you to spend the last couple of months or weeks with your loved one in more of a shared sadness but also shared joy that, today, in this moment, you are still here and you are making things as good as they can be. Don't let the "doer" direct all of your life.
2. What I have learned is that it is very important to have the conversation about death while you are both well enough to do so.
When Paul had already been on Chemo for a number of months, we decided to sit down and have the talk. He said, "You need to know what to do when I am gone. And now that I am still well we can have this conversation and make this list." We spoke about whom I would have to contact first, and we got stuck on talking about whether he would die at home or in a hospital and what we thought would be best. Then we proceeded to talking about which funeral home to use. He found the one closest to us and I took down email address and phone number. And then my tears came. "I don't want to talk about your death! It's so very sad!" I sobbed. And Paul started looking up videos of ducks on Youtube. I felt so offended: How could he do this while I was in tears?! I ran downstairs and told him that, if he couldn't be more serious, there was no point in us talking about this now. (I totally did not see that perhaps this was Paul's coping mechanism for that moment.) So that was the end of that. We never had another conversation about what should happen during and after his death.And, by the time it was clear that he didn't have long to live, he was too weak and too disoriented and too eager to protect me to have this conversation, and I was too tense and tight and the "doer" was too much controling my life to have this conversation.
I regret that very much. I would have loved to know what Paul's wishes were. And it would have made organising the funeral and the spreading of his ashes so much easier for me. And, above all else, having this talk would have given us another level of intimacy. Paul and I used to talk about everything - it would have been good to talk about this aspect of life too.
So what I am suggesting to you is that, even though it is difficult, and even though you find that perhaps the time has not yet come, and even though there may even be a kind of superstition that, once you talk about it, it may become more true, have the conversation. Sit down with a cup of tea or a glass of wine, go for a drive or a walk in nature, do whatever helps you to be comfortable, and have the conversation about death.
I would also like to recommend the book "With The End In Mind" by Dr. Kathryn Mannix to you which is a real help.
3. What I have learned is that there comes a point when the person's comfort is more important than what they do or don't do.
I think many of us as carers think all the time of what our partners need to do to keep reasonably well. I remember I was constantly at Paul asking him to drink his Fortisips and to eat his dinner and, when I was very much into natural stuff, that he would take his vitamins and his do TERRA essential oil complex to support healthy cell growth. And the sicker he became the more desperately I wanted him to do those things of which I was hoping that they would help him. What I didn't hear and see enough was that, above all else, particularly in the final days, it was important to him to be comfortable. Even on the last day at home, I made him drink the Fortisip because he wasn't eating anything else and I wanted "to keep his strength up". But Paul didn't want "to keep his strength up". In fact, he had become far too weak to even be able to drink the thing.
So for all of you looking after someone at the end of their life: try and find the balance between, one one hand, wanting the best and encouraging your loved one to do the things that are necessary and, on the other, focusing on comfort and compassion. Rather than making Paul drink the Fortisip, I should have made sure that he was comfortable on the couch or in bed. Rather than arguing with him that Paracetamol was not the right painkiller for him to take right now because his liver was already struggling so much, I should have let him take it knowing that it really did no longer make a difference.
4. What I have learned is that when our loved ones withdraw from us at the end of their life, we shouldn't take it personally.
Some of us carers feel, particularly as the illness progresses, that our partners become withdrawn. And sometimes we take that personally and are disappointed and frustrated. That was certainly the case for me at first when Paul became more withdrawn. I thought: Why are you doing this? Isn't it now more important than ever that we are close and hug and kiss before going to sleep or cuddle up on the couch while watching a TV programm? And there was also hurt that went kind of like: I am doing things 24/7 for you, I am completely exhausted, and when I just occasionally need a hug or a kiss or a cuddle you can't give that to me?! But what I began to see was that Paul's withdrawing from me was not because he didn't care or he was no longer interested in closeness. It was simply a sign of lack of energy: He didn't hug or kiss or cuddle me because he didn't have the energy to do so. And he didn't want to become emotionally involved because, for one thing, it would have taken way too much of his already very low energy which he needed for survival and nothing else but also, if he had become closer with me, he would have been only all the more reminded of the fact that, very soon, we would no longer be together.
So what I am suggesting to you is: If your loved one becomes withdrawn, particularly as he/she is nearing the end of their life, remember that it is very likely that this is happening because they do no longer have the energy to give and/or they cannot bear to get emotionally involved because that would remind them too much of what will soon be gone forever.
I am sure I could think of more things I have learned through caring for Paul. But the above are the main things that come to mind and that I want to talk about when people ask me, "What have you learned?" May some of it be helpful to you.
First of all, thank you so very much for sharing your thoughts with us. I am sure there will be many people, carers and sufferers alike, who will learn things from your journey and Paul's too. You write very well and clearly express your feelings and reactions. The "doer" you, did so very much, for so many months/years, to help keep Paul strong and to help him maintain the best quality of life possible, given his conditions. I don't know if he expressed it, but I am confident that your care gave Paul a sense of security, support and calm that he would not have had without you the "doer".
The "should haves" list. No, no, no. This has to go. I can tell that you were the sort of person who at every moment acted selflessly, in the hope that Paul would be as well as he could be, always. Hindsight is 20/20, but hindsight is not available to us while we are acting in the present. You acted always out of love, concern and kindness. You did what you thought was best at the moment you were living it. I bet Paul minded very little, if at all, that certain things were left unsaid. His energy was diminishing. He knew in his heart that your love was broad, deep and real. That would have been so so comforting for Paul. He knew that without words being said. And though discussions of his wishes for his funeral might have made decisions and choices easier for you, maybe these things mattered not to him. He was so ill, and so tired. He was in the process of letting go, of letting you go, and perhaps, too, of helping you to let go of him.
I will take your advice and remember your words. And it is wonderful that you have shared them with us all. But do not beat yourself up, saying your should have done this or that differently. Erase the "should haves" from your vocabulary. Shake your hands while swinging your arms, and release the "should haves" up into the ether. Forgive yourself these things you saw as mistakes or lapses or something "missed". Give yourself a hug and appreciate all you did to help Paul live a good life for as long as that was possible. Your love of one another is something to treasure always. Grieve. But do not punish yourself. You must miss him so. Your were his friend until the end, and you let him guide you, in a way and I believe you were and acted the way that Paul wished. I feel you let him talk when he needed or wanted to, and when he couldn't anymore, you let go. Now, forgive yourself your imagined flaws. You were loving in the way he required and wished, until the end. I am sorry for your loss. We are human. We may err. But love was your motivation every moment of every day. Love that about yourself, ok? Kathleen (in the US)
Dear melaniel, as the patient in this scenario I found you testimony fascinating, I now realise how lucky I am that my husband and I are on the same page regarding my illness, we have discussed at length my wishes for end of life care, and have put into place all necessary arrangements, because of this we have relieved ourselves of an enormous amount of stress and have been living a happy life together. I agree with all your advice as painful as it might be to implement in the midst of a very emotional situation, it may cause fellow carers to take a moment to think about their approach to caring for someone in the final stages if life. I think when you’ve been surviving on adrenaline it must be hard to move into a more contemplative frame of mind but I think it’s the best thing to do. thank you for writing this blog it will help many people I’m sure.
best wishes jane
Thank you for taking the time and making the effort to share your experience, thoughts and reflections. Your words have been incredibly helpful to me.
When my husband was diagnosed with brain cancer 2 years ago, my way of coping was to immediately go into “Doer” mode and I have been in that mode ever since. In my mind, as long as I was doing stuff (the more the better) then I was showing to the world and to myself that I was coping just fine, and completely on top of everything. Of course, in reality, deep down I’m in pieces and struggling now to keep all the plates spinning. I’m exhausted both physically and emotionally which is no good for either of us. Reading your post has been a wake up call as I now realise that “caring” isn’t all about “doing” and that getting caught up in all the doing leaves us little or no time or energy to focus on the other things that really matter.
Sending you heartfelt thanks on behalf of all of us who come to this site looking for help and support. You are an inspiration.
You post does indeed give a real insight of what it feels like to care in such circumstances. I was diagnosed for a second time with Triple Negative Breast Cancer 2 years ago and my husband with Advanced Prostate Cancer 6 months later. Heyhoe, lets just get on with this we thought. I was not very tolerant of chemotherapy or the bisphosphonates for my bones so the following year was one of extremes of pain, fatigue and lack of stamina, exacerbated by the fact I had ME for 30 years. But we are a resilient lot by all accounts and soldiered on, me having a Mastectomy and Dave having injections to treat but not cure his cancer. On the whole we were muddling along quite nicely. Dave, a musician revelled in his Bluegrass Band, practising and having a few gigs and festivals. We were having a reasonable life by all accounts, quite young for our years - emotionally anyway.
Life took a turn when our son in law became ill suddenly from a sub dural haematoma, a young man of 54, while on holiday in Italy. This was a stressful time for the family as my daughter and her children struggled with him lapsing into a coma and dying on return to the UK. We had to become more resilient than ever in this situation and his funeral was a joyful one, although the twins aged 19 are suffering one year on with the trauma of it all. Nevertheless we loved and supported one another.
There was another turning point in January this year when our youngest daughter was diagnosed with the same cancer as me, triple negative. We thought, okay lets just get on with it. Both she and Dave went down with a viral illness early in the year but they made a decent recovery and our daughter embarked on her neo adjuvant chemo. Things weren't too straightforward since she developed a couple of infections and was admitted to hospital following an insect bite on her leg. It looked awful but we were assured it was surface following a scan and she soon recovered with IV antibiotics.
Meanwhile Dave played a gig in March, and although still a bit tired from the virus seemed on the whole to be on the mend. That lasted until the end of March when fairly persistent fatigue, shoulder pain and a cough had developed. Despite 3 admissions to hospital, with various scans, MRI, IV antiibiotics, nothing conclusive could be found and on returning home after a few days he would relapse again and we decided he should stay put from then on. I had been given steroids from the doctor on another front and I guess this gave me the energy and freedom from pain I craved to deal with what was going to be a difficult situation. No one mentioned death and dying and various attempts were made to get Dave eating and mobile, some helped and some didn 't. We had various visitors, GPs, Palliative Pain Doctor, Occupational Therapist, Dietician etc etc. But terrific help from Marie Curie because of my failing energy and attempts to accompany my daughter for her chemo trips and another infection which followed in her tooth which had to be extracted. But that is another story.
Dave was becoming frail, not eating, and in various stage of pain but we took great care of him and visitors came I was also a Doer until I developed ME and then I regularly practised Mindfulness which is a bit of a life saver. But there wasn't much time for that during Dave's illness although I acted mindfully in everything I did so as not to overdo it. He was particularly glad to see the band boys, who were a terrific bunch. I also sat on the bed an played his favourite bands and you could see his foot still tapping to the music. But life narrowed and slowed although there were occasions he was much brighter and after 5 weeks of our care they suggested he go to the Hospice for assessment to see if they could improve his situation. We were certainly up for that and hoped he would be back home with us within a week. That was the plan anyway as far as we could ascertain.
So at the beginning of June, 3 months after his initial referral to hospital, he went to the hospice where the doctor asked what Dave expected to which his reply "I want to get up out of here". They said they would do their best and I suspect they did. He asked what was wrong with him and at that point they said it was a progression of his prostate cancer. Asked how long he had, they said that was a difficult question to answer with prostate cancer. We hoped for the best however but within a week he had deteriorated to the point where we were called to the hospital. That was some weekend. Our daughter was in hospital having IV antibiotics again and desperately wanting to get out to see her dad. Monday came and things deteriorated, even the dog became unwell and had to be rushed for surgery (on the same day my husband died as it happens), I was attending my check up for cancer so it was one of those days and we were doing our utmost to keep my daughter's 11 year old upbeat, happy, watered and fed. On the Tuesday we were all summoned to the hospital where Dave died very peacefully in loving care.
I suspect we were all in overdrive from then on. Pretty devastated to lose such a lively, once robust, young for his age, lively, liked, humourous man. A husband, lover, dad, grandad, uncle, friend, colleague - the list is endless. He was outgoing and gregarious. The pain we felt was deep. Despite that we soldiered on with the funeral arrangements. I had sat on the bed beside Dave filling in the gaps of his story on the laptop while he was unsuspecting. He didn't like discussing death and dying but I had organised my funeral several years before and he knew I had written my story and not left it to someone else. People talk about battling and fighting cancer as if they are attacking their own body but rarely think about a different outcome and prepare for it.
The funeral was amazing. We dressed in colourful clothes my 3 daughters, 4 granddaughters and one grandson. His coffin was a flight case (Dave played the pedal steel guitar which was carried around in a big flight case), we had the mandatory floral guitar and of course we played his music. Intro by his band Grass Routes playing Hickory Wind. The Humanist gott his story perfectly and I am so glad we had done lots of the preparation for that. Then the Reflection with Dave on pedal steel guitar playing The Breeze and I and finally his favourite blue grass band The Cleverlys singing I'm Gonna Be 500 miles. Back at the hotel the singer of the band and I had put together a music video of his music career and family and several excerpts from TV gigs. Everyone was upbeat despite feeling the sadness and disbelief of Dave's departure. Yes life had definitely slowed and narrowed.
Of course we are all having very sad days but that is only to be expected coming to this holiday season, especially when there has been so much joy in life. You wouldn't expect one without the other. It is very hard some days but we had a wonderful life with many holidays and family celebrations and a marriage which lasted 56 years. Thank god for all that we did.
We are all just supporting one another with my daughter and her family coming to terms with the loss of 2 granddads and a father in a short space of time and Sam now back working following her cancer treatment. As to me, well, so far so good as far as my cancer results go but who knows. Just making the most of life and doing what I can. Grief is one of the hardest things I have ever experienced despite my mother dying when I was just 15 and who was my very best friend. I had known Dave a long, long time though. So grateful for a life well lived.
All the best to everyone. Its good to talk. x
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