Hospice at Home

My mom wanted to die at home. It was important for her to be in her own environment, surrounded by her children and grandchildren. We obliged because we wanted the end of her life to be meaningful and to end on her terms. From the time she was diagnosed with terminal lung cancer to her death was three weeks. This was a very demanding and intense time for our family. Although we are open-minded and strong individuals, our family was subject to the same drama and emotional outbursts that other families encounter.

Our mom had faith in us that we could do what she asked of us. For us though, the saving grace was that one of her best friends was a hospice nurse.  As well, our local hospice was phenomenal in supporting us in whatever way they could. Mom’s friend, and my daughter Dale, who is also a nurse, provided plenty of support for the medical details, answered numerous questions, and assured us that we were doing all we could – and we were handling things just fine.

Although there was myself and three sisters staying with Mom in her home and our brother who lived only a few blocks away came over daily, the process of providing her end-of-life care was exhausting. She was in pain. She had a plethora of emotions to work through herself. She needed medical care. She had a host of fears to process. And each one of us had a heart that broke a little more every day. Goodbye, like a runaway train, was approaching fast and there was nothing we could do to slow it down. It left us feeling hopeless, overwhelmed, and desperate to make as many precious memories as possible.

We did many things to facilitate Mom being able to say goodbye to us and us to her. I have written about the Farewell Journal in a previous blog, and I will share other things in future blogs, but this blog is intended to shed light on the importance of a family being equipped to do the work of providing end-of-life care.

Not everyone can do it. And it is a very difficult situation when your loved one pleads with you to stay at home. My best advice is to seek support from your local hospice; they will comfort you and work with you to let your loved know that this is not something that you feel you can do. There is no shame in that. It’s best to know your limitations and to honour yourself first.

If the family does feel they can provide end-of-life care, it is important to seek the support of the local hospice, a minister or pastor for spiritual counsel, a social worker or counsellor to work individually with the family members so they can express their sorrow and to enlist the help of extended family and friends so the caregivers can take a break.

Remember the “family pressure cooker.” It does not matter how close a family is, tension and emotions build and even the calmest of calm can explode.

Sometimes, one or more family members will try to “take control” of the situation and attempt to orchestrate everyone’s move. They tell you what you can say. They tell you what you can do. They tell you how much time you can spend with the dying person.  All of this can lead to tension, hurt feelings and ultimately a blow-up. First of all, they don’t have the right to control this. Everyone in the family has a right to be with and to say goodbye to their loved one. Again, a local hospice will be of tremendous benefit to help families work through these dynamics and to keep the focus on what is important… the dying person and their wishes.

Finally when death arrives, don’t force yourself to “rush” back into the normal routine of daily living. It’s impossible. I remember after I returned home from Mom’s funeral and calling one of my sister and saying, “This must be how it feels to return home from war. We saw horrible things. We never want to repeat this. We lost a precious life and watched her take her last breath. And yet, there was something so beautiful about the process…something that we can never replicate. We bonded in a deeper way than one could ever imagine possible. And all of it is mixed with the joy of returning home to our spouses and children.”

Providing end-of-life care for a loved one is truly a unique experience. No one person in the family should be responsible for it. There are many factors to be considered. The best part is there is help through hospice and it’s available to everyone. You can locate a hospice and palliative care organization in Canada, the United States or worldwide by visiting www.hospiceinternational.com.

Healthy Helpers

People naturally want to help others. To be an effective helper, you have to be a “healthy” helper. As mentioned in the blog on Caregiver Grief, the tendency when helping others is that we put 150% into it. This means that not only is there nothing to give to our family and friends, it also means there is nothing left for us. This leads to major burnout!

Helping others who are bereaved or working through loss brings added stress to the helper. It’s important to be aware of your stress level and to find ways that help you to obliterate or lower the stress. Do you like to exercise? Play sports? Dance? Sing? Paint? Whatever it is, build it into your daily routine to maintain a balance.

Helping is a demanding personal process. Helpers need to be aware of the responses they may have about the person they are helping. You may become frustrated because the mourner doesn’t seem to care or because you feel ineffective in motivating them to do the work. When this happens… you need to own it. You have turned it into your needs… not theirs. It’s a delicate balance. If you feel you are becoming ineffective, trust that it is time to take a step back and allow others to take over for a while. Be sure to debrief with a trusted colleague so that you can obtain some feedback on what you are feeling and to release those feelings.

Helpers/caregivers must often confront their own losses, fears, hopes, and dreams surrounding both life and death. The role of a helper requires energy, focus, and a desire to understand. The emotional involvement adds stress as well. It is always wise and beneficial to seek the counsel of a colleague or therapist to work through the residual effects of being a helper.

Photo Credit: renjith krishnan / FreeDigitalPhotos.net http://www.freedigitalphotos.net/images/view_photog.php?photogid=721

When the Monster is Your Son

Timothy McVeigh

  

On April 19, 1995, Timothy McVeigh – forever known as the Oklahoma City Bomber – set off an explosion in front of the Alfred P. Murrah federal building. This senseless act killed 168 people – nineteen of them children under the age of 6. Hundreds of innocent people were injured and over $652 million dollars in damage done to buildings and cars that spanned a sixteen-block radius. McVeigh was arrested on a firearms charge 90 minutes after the bombing. His friend Terry Nichols was charged on May 10^th. McVeigh was executed for this crime on June 11, 2001.

There is a plethora of information on the worldwide web about this case to facilitate debates on his motive and whether he should or should not have been executed. This writing has nothing to do with either topic. Instead, my intent is hold up to the light the grief journey of those who knew and loved him, but had no conceivable notion that he was capable of such a henious crime.

Regardless of what you or I think, McVeigh was born into this world as someone’s son, brother, and grandson. They knew the boy that the rest of the world would not. They loved him for who he was and for the pure soul they believed him to be. This is not unlike the rest of us. We are born to people who love us, have faith in us, and wouldn’t believe we are capable of doing anything but good in this world. I don’t know what went wrong for McVeigh. I don’t know – or even profess to understand – how he could do what he did. Nor do I understand how or why The Green River Killer, Ted Bundy, or Jack the Ripper did what they did. What I do understand is that as a mother, to endure the painful reality that my son was capable of any of these actions would be devestating.

When someone dies we are encouraged to celebrate their life. We have people rally around us to share stories of our loved one, to support us, and to be there for us in our time of need. Society acknowledges and accepts our need to express our grief. Do you think the McVeighs were afforded the same when their son was executed? I highly doubt the public even thought about their pain. Thousands and thousands rejoiced in justice being served in the way they thought it should. The McVeighs would not have been invited to publicly mourn the loss of their son, brother and grandson – the man who was not the McVeigh the world thought they knew.

The next time you read about a convicted killer, go ahead and celebrate that justice was served if you believe it to be so. But take one second and send a little prayer and love to the family behind the scenes whose hearts are broken and forever shattered. Understand that for all moms and dads, it truly is “but for the grace of God, go I.”

One of my favorite poems ~ may it bring you comfort

Desiderata

Go placidly amid the noise and haste, and remember what peace there may be in silence.

As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexations to the spirit. If you compare yourself with others, you may become vain and bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans.

Keep interested in your career, however humble; it is a real possession in the changing fortunes of time. Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.

You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery and broken dreams, it is still a beautiful world..

Be cheerful.

Strive to be happy
                                                 ~Max Ehrmann (1872-1945).

Violent Deaths

When a loved one dies at the hand of another, the grief journey becomes very complex. In essence, it heightens the experience to immeasurable sorrow. Often the family cannot even get on with the process of grieving the death of their loved one because their time is consumed with dealing with the legalities and sometimes, absurdities of the criminal justice system.

My 23 year old brother-in-law was murdered by his best friend. He shot him in the head while he was sleeping. There were others asleep in the house at the time.  The person who killed him asked for the police to be called and waited patiently for them. The body, the killer and the gun were all there. The missing piece was the motive.

Unlike other sudden deaths, our world crashed. We experienced the normal responses of shock, confusion, and disbelief; however, everything seemed to be tenfold. Mixed with these responses was an overwhelming sadness and profound anger. An interesting twist was that my husband was a police officer who handled complex investigations like this and suddenly, we had been catapulted onto the side of “victim.” Nothing could prepare us for the roller coaster we would ride for the next seven months while the legalities were worked through. This frustrating process resulted in delaying our grief and our ability to do the work of mourning. My brother-in-law’s funeral provided some opportunity to explore our pain, but after that was over we were immersed in the investigation and trial. The wound was ripped open, time and time again.

Our experience mirrored that of countless families whose loved is taken violently. Life became fraught with feeling vulnerable and unsafe. We felt as though our rights were less important than that of the killer and that was incredibly difficult to cope with. At the time – 31 years ago –- the police force didn’t offer or even suggest counselling for my husband. Their answer was to get back to work as soon as possible and establish a routine. This, in itself, complicated the grief journey for him. He didn’t deal with his feelings and ultimately, it left him – and our marriage – with some deeply etched scars.

I always encourage people to seek counselling to help them work through the process of grief; however, when it comes to violent deaths, I move from encouraging to insisting. It’s extremely important to “shop around” and find a therapist who has experience with bereavement of this nature. As well, finding a support group with peers who have experienced a similar loss can be beneficial.

Sudden & Unexpected Deaths

In healing my broken heart, I came to understand that we don’t get to choose who will die, how they will die, or when they will die. A sudden and unexpected death affirms this in a way that nothing else can.

My brother was 39 years old when he died of a subarachnoid hemorrhage. My husband was 37 when he died of a heart attack. My brother-in-law was 23 when he was murdered. My father was 54 when he was killed in truck crash. Their deaths were not expected. They were sudden and cruel proof that death pays no heed to status, social connections, education, or family responsibilities. It is there to claim us all… and on its terms, not ours.

What we do get to choose is how we cope and respond to the tragedy. It’s not uncommon to feel as though you want to die too. More often than not, this is temporary and if given time to do the work of mourning, you will experience a shift in thinking. For others, while physical death may elude them, they allow themselves to die inside. They shut down to life and become stuck in their grief. There are gifted counsellors who can help when this happens. However, the person must choose to do the work.

It takes a long time to recover from the experience of losing a loved one suddenly and unexpectedly. It is important that you:

• Acknowledge your loss
• Allow life to slow down so you can reflect, nurture and heal
• Understand that confusion, disorganization, and overwhelming feelings are normal responses as are anger and guilt
• Don’t rush through the process, or allow others to hurry you along. The grief journey is long…doing the work of healing takes time.
• Don’t be afraid to ask for help… you didn’t ask for this to happen and nobody can expect you to know what to do.

Remember, there is no shame in seeking professional help. A professional can help you to gain perspective, facilitate expression of your feelings, and provide support in a way that your personal connections may not be able to do.

Caregiver Grief

Providing care for our loved ones is something we do. Mothers, fathers, sisters, brothers, grandparents and friends rally to be with a loved one who is ill or injured. Caregiving may span years if the illness is chronic or terminal or the injury is catastrophic.

The impact caregiving can have on one’s personal health is profound. Caregiving or supporting others brings added stress to the helper or caregiver. This is often attributed to the fact that the caregiver puts so much into helping or looking after the person, that they begin to neglect themselves. Their day becomes about meeting the needs of their loved one. Caregivers often go without proper sustenance or rest; therefore, this puts them at risk for depression and other health problems.

Caregiving is a demanding process and it often brings up our fears and unresolved grief. We are confronted with churned-up feelings and may experience feeling overwhelmed, irritable, angry and anxious. It is important to acknowledge these feelings and understand that they are normal given the situation. Caregivers need to find safe and suitable ways to give expression to these feelings. Ignoring or stuffing these feelings will not make them go away ~ they will continue to manifest until the person works through them.

It is critical that caregivers give themselves permission to take care of their own basic needs. The saying “if you don’t take care of yourself, you will be no good to anyone” is especially true for the caregiver. If you want to go the distance, pace yourself. This includes taking a break from the caregiving routine and allowing others to handle the situation for a brief period. Initially it may be difficult to do, but I promise even if the break is short, you will feel rejuvenated!