Hi All,

I don't know quite how to ask this question, as I don't want to upset anyone.. or run the risk of being "flamed". So in advance I am sorry if I offended anyone.

My husband has been fighting a hard fight since 2005, unfortunatly his toleration of chemo was REALLY bad and treatment was cut short a few times even on reduced doses. In october the Drs told us it is terminal, 12 months they said.... In the mean time Rich has wasted away to nothing, just skin and bones, keeping food down is a major task and facing reality now I know that the SCC is winning the fight. Last week another tumor on the other side of his neck (good side) was diagnosed and his mental state is suffering alot.He also sleeps about 18 hours a day.
My questions are, How do I prepare for losing my husband? Are there any tell tale signs to look out for in the days/weeks/months before the end? Please don't think I am morbid, my husband is the love of my life, but I think the time has come to prepare for what lies ahead.

I am so sorry to hear you are facing this. It is hard when you are the caregiver and watch the one you love slip away from you. Treasure each and every moment. I know that many people will chime in and give you good help. Hang in there!

I am so sorry you all find yourselves in such a situation.

Look for posts by JAM (Amy in the Ozarks) and Cookey (Liz in the UK), both of whom have been in your shoes. Each kept a running commentary in the OCF Cancer Blogs forum -- Amy's is called "A Caretaker's Journal" and Liz had two: "Walking towards the light" and "My lone journey."

I am sure you will hear at some point from both of them, as they are both here frequently. My thoughts are with you and your husband.

-- Leslie

I am so sorry to here of this turn in things. The reality is that some of the posters who come to the boards will not make it as time goes by. There is never any reason to think that if you are suffering due to a loss, or the potential of one, that anyone here would want you to hold back. It is part of the hard reality of this disease and as part of the OCF family, we are here to support you in the good times and in the terribly bad ones as well. There is a reality associated with ;the loss of a loved one, a reality that from this disease or from another cause, we must all face eventually. It should be as openly discussed as any other aspect of our lives as patients or caregivers, and support for those in emotional or physical pain given. In the end we will all share a similar fate. It is not morbid. It is the reality, and the natural course of our fragile existence in this life. Death is the debt we all owe nature.

Sammie, there are specific things to look for. When the end is near various organs will start shutting down. He may experience jaundice as the liver fails. Blood will pool in the extremities and in the back, or bottom side, as circulation gets poorer. The final stage is known as the "death rattle". Phlegm collects in the back of the throat and produces a distinctive rattling sound. Death is usually imminent within 24 hours at that point. He may drift in and out of consciousness as well. It sounds like it's time to get the hospice people involved in his care. This will insure maximum quality of life, proper pain management and a dignified death. They will guide you through this, counsel you and provide bereavement counseling as well. I wouldn't delay on this.

Try to remember and talk about the really important things that you can. You must help prepare him for his death.

It is very important that you take care of yourself as well. Keep up on your nutrition, find a support group and professional counseling if need be. Get anti-drepressants if you need them.

Make sure that all of the legal matters are resolved, living trust, will, and advanced directives.

I was a primary caregiver for my dad who died of cancer so feel free to email me personally if you need any help with any issues that may arise.

I am so sorry about this turn of events.

Sammie,
My heart goes out to you and I'm glad you brought up some of these questions--as Brian says, we all have to face this at some point.
The UK site cancerbackup has a lot of information on both the practical and emotional sides of end-of-life issues and I go back and read it frequently--it's not morbid, it's helpful.
I am ready to 'hand over' to hospice when the time is near, though my beloved partner wants to carry on taking care of me for as long as he possibly can.

I admire you and think you are being very sensible to try and prepare yoursellf--knowledge replaces blind panic.
Take care of yourself too and have a support network in place for yourself for over the next few months--and beyond,

Brenda

Hi Sammie

I lost Robin six months ago tomorrow. I am going to send you a PM ,which is a copy of an e-Mail i sent to someone else in your position,after she asked the same question.I hope it will be helpful and please ask any questions that pop in to your head.

Gary ,in the UK the hospice services have found a drug that eliminates the death rattle .Personally i think that is a great advance as it can be very distressing for loved ones to listen to,and something i certainly wasn't looking forward to hearing.

god bless sammie

love Liz.

Sammie, I feel so sorry for you. It is hard to prepare and even if you do, it's still a sock and hurts. THe day before my Dad died, we were talking and he said, Jim, I want you to promise me one thing. I asked what it was. I was aksed to promise and take care of my mother and brother if something happened to him.. Of course I promised him that and the next morning he died of an anneuyrsm. The day my mom died from cancer, she told me to take my wife and kids and go shopping or something and to quit woorying about her constantly. We went shopping thet evening and when we came back home. she was dying. I guess we will never be prepared or have certain signs to guide us to the when it will happen. It was a ssock when they died and we thought we were prepared. The grief is there no matter how you prepare.. You are in my prayers.

The hospice movement in general was credited to Elizabeth Kubler Ross who recently passed away. I highly recommend getting her book "On Death and Dying" and/or "Death: The Final Stage of Growth". It will put a whole different perspective on the subject that we will all inevitably face. It is written more from a spiritual but non denominational perspective. It helped me tremendously during my dad's dying process.

Amazon Review of "Death: The Final Stage of Growth"
"Death: The Final Stage of Growth is an especially enlightening work not simply because of the varied and knowledgeable contributed views to this particular volume, but because it approaches death and dying not from a scientific or psychological standpoint, but rather, from a cultural, sociological and mixed religious context. The essays that focus on the Eskimo, Jewish, Hindu and Buddhist approach to death and dying are deeply taken into account, as are their rituals, their cultural approaches and their belief systems. But though all the faith approaches differ in one way or another, the unifying human elements are-for the most part-a consistent grief, fear, faith of a higher authority and the oncoming trials and tribulations that dying can and will entail, all of which unites us. Dignity should begin at the conception of life, and it does not cease until the last breath is taken and arrangements for what follows are respectfully set up. But in many cases, as illustrated in the section entitled: "The Organizational Context of Dying" by Hans O. Mauksch, once a person is diagnosed as having a terminal illness and thus becomes a full-time patient, (s)he, after stripping and handing over their possessions, is banded like a piece of property They then are quickly yet efficiently-like in the military or in religious life-slowly deloused of their sense of autonomy; they are gradually assilimated to the institution. And their physical and mental definitions are not fully acknowledged. It is not done out of spiteful cruelty, just ignorant insensitivity. But through psychological studies-as done by Kubler-Ross as well as others in the field-and radical restructuring in pallative care, hospitals are really no longer deemed as the menacing sick houses of olden times. Rather, the patient as a whole is acknowledged, not merely the physical self. The soul, the intelligence, the humor and wisdom. The "all" of the person is taken into account, and as that is so, the hospital environment in its own right changes for the better. But it stems from communication and compassion and facing what for almost all of us is the ultimate and insurmountable phobia. All in all, Death: The Final Stage of Growth is another excellent and necessary Kubler-Ross offering." (Christian Engler)

There are also two basic kinds of hospice care. Institutional and home. My dad wanted to die in his own bed and the hospice people sent a nurse over regularly, a person to bath and provided many pieces of equipment, wheelchair, portable commode and other items to make caregivering easier and safer. They also trained all of the caregivers. In home hospice requires that someone be there 24/7 so they also provide some respite care as well. I assembled a team of 4 people to watch over my dad, in addition to the support that hospice gave me. The hospice team took much of the fear out of it by demystifying the dying process. They also took care of the death certificate and no autopsy was required.

Benfran, the home hospice requires a dedicated caregiver so your partner will still be actively involved in your care but will receive much needed support. In the US the order for hospice must be written by your doctor to initiate it. It also does NOT preclude palliative care options. Many doctors, unfortunately wait too long to write the order and must be pressed to do so. You have a right to be in hospice for 6 months. In my fathers case when the order was finally written, he died within a month while I and my caregiving team went through a living hell with little support. Don't let his happen to you. The hospice people are wonderful, words cannot express my gratitude to them for the selfless and courageous work that they do.

Liz, I just spoke with our local hospice and they do routinely prescribe medications now to eliminate the death rattle (my last hands on hospice experience was in 1995).

Gary,

Thanks for your always informative and intelligently written posts...they are a blessing.

Deb

Sammy I am sorry you are losing your husband and my heart goes out to you. My husband lost his battle with oral cancer Jan. 17th. I was able to keep him at home and comfortable. He had a very peaceful death in his own bed, as he would have wanted it. I second everything Gary has said, talking about important things if he is still able, making sure all legal and financial issues are in order, get palliative care involved as soon as possible. Palliative care can begin as soon as curative treatment is no longer an option no matter how much longer the person is expected to live. A palliative care specialist should be able to anticipate the patients needs as the disease progresses with their knowledge of the usual outcomes for the various types of cancer and put the proper supports in place. They should be easy for you to reach when needed. You need to make your medical team aware of any and all symptoms so that they can be dealt with. I was a palliative care nurse for 26 years and I know that most symptoms can be alleviated with the medications available today. Dilirium, confusion & hallucinations can occur near the end of life and there are sedations available to control this. Congestion (death rattle) has been mentioned and can be minimized if not eliminated with medication. Surround yourself with a strong care team and friends and family who may be willing to help ease the burden on you. If you can accept death as the final stage of life, something we can all expect, it somehow does not feel so terrible. I miss my husband very much but I could not wish him back to a life he found unbearable. I wish I could send you a basket full of strength and courage to help you over the next weeks.