Don't Lose Heart

For me in taking care of Bill the roughest time was the last two years before he died as his cancer had metastasized widely throughout his bones and between that and the issues from the ongoing growth of the original prostatic tumor he struggled HARD.

I was his sole caregiver – I was the only person who was here. Neither of us had any relatives in the area who were involved enough with us to offer help (both our parents were long gone and his adult children from a first marriage were too busy to be interested in helping out or being involved) so I was the one who was here for it all. Bill had, ever since his diagnosis needed help doing the many things that were necessary as a result of having the prostate cancer but as we got to the last two years of his life – what had been things he needed daily became needed more often and for the last nine months – became just about hourly. In those last nine months we were in the hospital probably 12 times – each time during which I got there by 6:30 and left around 11:00 except on nights that I stayed all night – perhaps 50% of the time he was inpatient. I continued to work full time (using up many days worth of accumulated vacation and sick leave for his hospitalizations and doctor’s appointments I had not used earlier because I knew this time would come) up until July 6th when I went out on family leave (FMLA act mandated leave) after he became too weak to be left alone without being in danger.

As the disease spread and his bone mets became even worse (at the end there was no part of his skeleton where he didn’t have mets – from his toes and fingers to his jaw to his spine to just everywhere) he began to accumulate ammonia in his blood stream. I struggled with his confusion, dementia, anger, paranoia, and distrust – through August and September which made an already bad situation worse – how difficult it is to physically care for someone – to tend to their bodily needs as they are accusing you of hurtful things that you could never do. Finally – by some miracle I will be ever grateful for – by the end of September he at least got over his paranoia that I was going to hurt or betray him. He still was untrusting about doctors and hospitals and what was happening there and to him, but at least he trusted my motives. He never got over the mental impairment caused by the ammonia and actually died not from the cancer but from the ammonia buildup that was a result of cachexia.

During those last months down to days I did everything from bathing, dressing, toileting (then diapering) lifting, turning, picking him up when he fell (Thank heaven he wasn’t much bigger than I and with the cancer lost as much weight and height as he did – had he been larger I couldn’t have done it – and I still have major back problems from it.) feeding, loving, reassuring, hugging and holding him, massaging him, meds administration, and finally – holding him in my arms while he died in our double bed – where he wanted to be when he died. Then – after he died – I bathed him and dressed him and prepared him for his cremation. I also assisted in that cremation. Both of these two final things – after his death, were important to me – as a continuation of the care I had given him and the love I shared with him, and the natural end to that physical part of our life together was for me to take care of him all the way through to the absolute final moment when there was nothing more that he needed for me to do for him. I then knew I had done everything that I could do.

During the last couple of months I also made sure that his kids had a chance to finish their relationship with him – that they had time and opportunities to be with him and be as much a part of what was happening as could be. Because of their baggage this made my job WAY more difficult and also made his dying much more difficult as there was history between him and them (he had been the custodial parent and was taken for granted). If I had that to do over again I think I would have been much harder and slower about what they were permitted to be involved with and limited their access far more to protect him. I have not seen or spoken to any of them since two days after he died and was not a part of the funeral service that they held (against his very strong and specific wishes) nor was I told about it – I found out by accident. I can’t remember when I had a full night’s sleep or a decent meal.

I can’t remember what I did for me other than read or silently surf the net on my laptop while either in bed next to Bill or in the same room with him. For the last two weeks I didn’t bathe or change my clothes more than once or twice or eat a meal that wasn’t directly out of a can or box or wrapper. I had already become isolated over the years prior to this as we lived with the cancer and its’ daily demands and his resulting needs so what had at least been a trip down a road with the two of us being there for each other became a hike down a road where I carried him with no help from anyone other than my best friend who supported me long distance by phone and from our primary care physician – who was amazingly supportive through the whole thing. As already said elsewhere on this site – my physical health got badly hit. I have M.S. – relatively mildly – but during that period I clearly saw effects from it I had not seen in years. I also have PolyCystic Ovarian Syndrome and as a result am a Type II Diabetic and saw my numbers going completely out of whack as of course all my cholesterol levels and my blood pressure. I got bronchitis and didn’t fully get rid of it until weeks after his death. My weight yo-yoed depending on what I got to eat or whether I ate to make up for not sleeping. (The things I can tell you about not just bad hospital food but about bad vending machine food would curl your hair!)

As time went on and it was extremely clear he was coming to the end – my job began to give me great difficulty and refused to extend my family leave (which under our union contract they could) and terminated my employment on Oct. 30 while Bill was in the hospital. Bill died Nov. 14. Of course with the termination I lost my health insurance and had to pick up COBRA at over $1800 per month as well as losing my prescription benefits and I then had to pay for all his needed prescriptions out of pocket until he went on hospice two days before he died. (The delay being due to the health insurance fiasco – as no one would touch him until they knew he had coverage and what kind of coverage he had.) I am now fighting with the insurance company to discontinue the COBRA coverage as I can’t afford it for myself and don’t need it for him anymore. I am also getting the bills starting to come in for what the insurance did not cover and face a LOT of debt that I must figure out what I am responsible for and what I am not. Just one more lovely stress! I have finally gotten a job – after 3 months of not working but it only pays $11.49 an hour – not enough to live off of, pay the bills from his illness and save for retirement (as any savings we had was used up years ago and life insurance cashed in before that) so I am taking the job (at least there is health insurance) and will stay there long enough to figure out what else I can do and how I can do it to earn enough to pay off the debts, support myself, and save enough to eventually (perhaps at age 90?) to retire. One thing that strikes me very hard about being a caregiver is how much it costs us financially and professionally as well as time, health and energy-wise to actually care give.

Would I do it again? In a heartbeat. If I had known then what I know now – famous last words – I would do some things differently. I would have eaten better. I would send out for real food and get it delivered. I would have made sure I got better care physically – taken my meds more regularly and start demanding more from Hospice earlier. (Once we got them on board they were good but – too little way too late!) I would have started fighting my job for a commitment as to what I was going to get for leave the second I knew I needed it – rather than assumed that because it was in my contract I was going to get it. I would have stood my ground and protected him from his kids who couldn’t see his needs for their wants. I would have sought out websites like this and gotten the support I needed and wanted – and been able to get it without disturbing him by doing it on the laptop when he was resting. I would have simply sat and just “been” with him and I would have taken the time to just breath more.

I do know one thing for sure – I have no regrets other than the issues with his kids. I loved him utterly and cared for him as best I could. I miss him terribly but I am blessed in that I left nothing unsaid and and nothing I needed to do undone. Could we have had the chance there were of course a thousand things I would have liked to do – but all of those things were nice – but wouldn’t have changed anything about our love or life together or marriage – they would have added a time of enjoyment but wouldn’t have changed the basis on which we built our lives together – so while I am sorry we didn’t get to take the train trip we wanted to or to move to the place we wanted to, none of that changes my feelings of no regrets because none of that changes how we felt about each other, or how we communicated. I love my beautiful, funny, brave, brainy, sexy mischievous William and I know he has loved and loves me still me and is with me even though no longer here in a way that I can perceive him. I wait until I can perceive him again and meanwhile – live what I am given as best as I can knowing I did the best I could for him.

- Meg HG
Update August 18, 2011

I still miss my dearest heart – my Bill, daily but I am building a life as a woman alone. I had the physical reaction from all the caregiving in the year following his death – ended up hospitalized twice with M.S. exacerbations, and had surgery which resulted from my PCOS being exascerbated from the stress. I am now recovered and actually in better shape than I had been for several years prior to losing Bill since I am taking the time to care for myself. I have a different job (set of jobs) then when I wrote this essay, working with friends to do good in my community (working with and protecting the rights of the elderly and handicapped) which I LOVE!!!

It has been a long trip to get some measure of equilibrium. I am coping better but I still have a huge part of me gone – I am like someone with a leg amputated – trying to relearn life without my leg and hoping to become like John Bradshaw’s description of the one -legged skater – changed – unable to regrow the amputated leg but still graceful and purposeful in spite of my loss. My love for and from Bill and the grounding that it has given me makes this task doable – just very hard sometimes!

The greatest irony in my life after my loss is that the person who has become my dearest friend since I lost Bill also has Prostate Cancer. It gave me pause to have someone else in my life with this damn disease but only a short pause. I won’t let Prostate Cancer stop me from having this wonderful, wise, loving, funny friend in my life simply because I may sometime lose him sooner because he has it. Meanwhile – I bug everyone to get tested early and often and I continue to learn how to be a one-legged skater with grace!
Update August 29, 2011

I wanted to send something along for you all to take a look at that I  wrote to explain what we go through as the caregiver left behind. I  thought perhaps bits of it might be useful for others. I had written  it for a dear friend whose sister had lost her husband after a fight  with pancreatic cancer. He had no clue what she was going through and  came to me since I had been down the road. He found it helpful and  passed it to other family members who were grateful so I thought  perhaps someone else might get some good from it or snippets of it.

Thanks for everything I have been given here. I am back  regularly now and recommending this site to others. For a long time I  couldn’t bear to be here – it was too close and fresh – now time has given me the gift of allowing me to return. – Meg

“John, I was thinking since we talked last night, and wanted to give you a couple more thoughts – Don’t hesitate to talk to her of him – hearing about him – anything at all – even silly things means so much! It is far more painful to have people not mention him to avoid making her feel bad or be reminded of him. To hear that someone else misses him and loved him or remembered things or told her things about him she didn’t know will mean so much to her! To simply hear of him even if nothing more than saying ‘I miss him too.’ will help.

Also – hug her, touch her, hold her hand. I can’t tell you how incredibly hungry for touch one becomes in grief after losing a spouse.This person you shared your heart and life and bed and board and most of all, your body in love with, is gone and you go from taking a human’s touch for granted – because hugging and bumping into each other while asleep and crowding around each other to get to the refrigerator and climbing over one another to reach the phone and sitting against each other on the couch to read or watch a game or driving in the car together and all the silly everyday stupid things involving touching and being touched while being married are gone and all of a sudden it is as if you are invisible – both to touch and to other’s sight. Touch validates in a way nothing else does. Without it, you feel as if you walk through the world invisible and unacknowledged. Alone all of a sudden, you can go months without even someone touching you on the hand or shoulder or back and you want it so desperately and dare not ask for it or touch someone else lest they think you forward or fresh.

You are no longer seen by anyone as the person they love and the person who they need to love them. That person who is your equal and peer, your partner and chosen companion is gone. There is no one to love and serve and be loved by and to receive from. There is no one to touch and be touched by. There is no one who looks at you the way your spouse does – with a bond of love and joy and sorrow and laughter and friendship and knowledge that only they have from years spent with you in partnership. There is no one who shares with you all the experiences, thoughts, beliefs, dreams and life anymore the way the two of you did. All of the sudden the world has taken this insane cosmic shift off its’ axis and down is up and left is right and nothing is the same. I don’t care how expected it is. I don’t care how prepared you think you are – you aren’t! Especially if you have been the caregiver – because you have lost your beloved and you are exhausted. Your purpose, the one who needs you, the one you want to make things right for is gone. You are empty and stunned and the world is flat and life stretches before you and you wonder why it goes forward when you don’t want to. There is a poem by W.H. Auden – all of which fits but the last two stanzas of which fit best of all so I’ll quote it here:

He was my North, my South, my East and West, 
My working week and my Sunday rest, 
My noon, my midnight, my talk, my song; 
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one; 
Pack up the moon and dismantle the sun; 
Pour away the ocean and sweep up the wood. 
For nothing now can ever come to any good. 

I don’t know if it will help yet – I doubt it, but time will heal her heart. She’ll not be the same again – one isn’t after a love or the loss of a love – but she will begin to finally break out of the shell of her grief – much like a bird breaking out of an egg and learning to do the everyday things all over again – but in a new way. John Bradshaw’s image of the one legged skater works so well – one is never whole again – like someone who has had a leg amputated, one can never get the past back anymore than someone who has had their leg removed can have it returned, but one can learn to live again and even to thrive again – to become that one legged skater! It takes time and a will and willpower to go forward. The road isn’t straight, easy or clear – I know only too well. It is worth it I think though – and I suspect if her beloved were asked – he would want her to make the effort. If you think anything here is something that she might find useful please give it to her, and if you tell her where it came from – please let her know that I didn’t mean to intrude – just that I meant to offer a touch in comfort. I needed this myself and had to find out on my own – something I wouldn’t wish on anyone. – Meg”