Archive for the ‘End Of LIfe Care’ Category

When you live next door to people and become close friends, you get to know some of their habits.  As with my current neighbors…….I have observed that every Monday, Wednesday and Friday he would be sure to clean up after the his dog.  Our garbage pick up is Friday afternoon and this way he could dispose of all of it for the week and usually are lawns were mowed on Wednesday so he would have it cleaned up so they would not have to mow in it. Also, he would check the hanging flower baskets and gardens on Mondays and Fridays, unless it was a particular dry time and he would check additionally. I know this because he would tell me I water mine too often and this would bring on great debate in a humorous way.

Thursday morning  I noticed his garbage was already on the curb. I found that very strange because normally he put his out before dinner on Thursday, or even waited until Friday morning. I also watched him clean up after the dog and check the flowering baskets. He really looked like a man on a mission. If I didn’t know better I would say he was getting ready to leave on a trip. It was like he was taking care of things so his wife would not have to worry about it. I feel on some level of consciousness, he knew what was ahead.

At lunch, that same day he had a massive stroke.  He passed away in the wee hours of the morning on Sunday.

Through the years of my hospice affiliation I have always felt that somehow my patients got advanced warning from their higher power.  When my mom was starting to transition she would tell me about this reoccurring dream she was having. She said our family was  on an airplane headed somewhere on vacation and when the plane landed, she was the only one who got off the plane.  I would ask her what day that was.  She would say it was on a Monday.  The last time I talked to her was Sunday night. I had to go home as I always did, to take care of my elderly dad. I kissed her goodbye and told her I would be back Monday morning as always.  She looked at me and told me I didn’t have to come back on Monday.  There was a couple of other personal comments amidst the discussion, but I told her I WOULD be back Monday morning.

I know now that she indeed knew she was departing her life on Monday and she was trying to protect me from have to see her go.  She died that Monday night 10/25/99 at 10:25 p.m.

Yes it is more than possible. I do believe the dying know when they are going on some level.  Whether it comes to them as some kind of “A ha!” moment, however I cannot see it being quite that dramatic,but if we listen closely and watch them, I think if they are able to communicate at all, they tell us, they know.

So now I say goodbye to you my dear neighbor. You have been so much fun to know and I appreciate all of your advice and help you have given to me. Say hi and hug Chloe for me.

Until next time…….


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Lately, for whatever reason I have been asked if I miss my work with hospice.  To be specific, my work with 11th Hour.

Just so you will know, 11th hour personnel are invited to be there during the last phase of life. Some families don’t want to be alone when their loved one is passing.  Then there are those who are passing and don’t have any family. I so felt a need to sit at their bedside and hold their hand and talk them to the other side. In some cases I would softly sing a hymn and tell them how much I enjoyed getting to know them. I don’t want anyone or anything to be alone when they are passing……..but they decide who and if.

In nearly 14 years I had several that I became very close to them and their families. Some people may not think that is a good idea. Yes, when the patient passed on and the families went on about their lives I will admit there was a void in my life. Each patient and family were totally unique and not replaceable by another.  They each had their own story and touched my life like no one else had.

Normally we don’t get very long with a hospice patient because the families hold off calling us. There was one man I had for a little over 6 months. He loved my dogs, Chloe and Bella and they loved him.  He had a wonderful family and we shared a lot with each other during our time together.

He celebrated a birthday while under hospice care and Chloe and Bella wore their party hats and took balloons to celebrate with him. He laughed and truly enjoyed his special day as much as the dogs and I did.

Through most of our time together he stayed alert and coherent, but the signs were starting to appear that our time was growing short.  Then one morning his daughter called me to tell me he had left us. We had just been there until about midnight and he went around 4 a.m. A big part of me was sad I wasn’t there, but everything I had been told and learned was that he was trying to spare me seeing him go AND he knew something I didn’t know.  About 18 hours later my Chloe passed away. I like to think she is up there keeping him company and waiting for Bella and I.

Yes, in my time as an 11th Hour volunteer I met and cared for some incredible people and had some wonderful  experiences.  With several patients I felt their spirit leave their body. I heard them talk to people who had gone  before them.

I am sorry my health is such that I cannot give with the passion and energy that I did before. I must take care of me now. My heart and spirit will always be a member of the 11th Hour team of Northern Illinois Hospice.  Do I miss it?? What do you think?

Until next time……..



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Just when I finally thought I had heard all the hospice myths, another one has surfaced. I was talking with a gentleman  who was also waiting in line at a local store. He told me he was in town because his mom was terminally ill.  After telling me some of the details, I asked him if the doctor was going to put her on hospice care.  I am not surprised you didn’t her the explosion……. his words to me were…….“absolutely not!  We are a family of considerable financial security and we do not need hospice charity! That is for the poor people. I can more than afford to get her 24-hour care”.

Holy cow!  Where did he ever get that idea? Just because non-for-profit hospices make their services available without charge to the patient or the family, doesn’t mean it is charity. These hospice workers feel they had a calling to do this type of work without regard to race, religious affiliation, or financial standing. They care for all who want and need them.

Just to clarify….there are hospices out there who are for profit.  They don’t openly broadcast that fact, so I advise you when your doctor suggests hospice care for your loved one, call around and be sure what you are getting. I have heard of several cases where the families actually thought they were getting a non-for-profit and several days after the funeral, they receive quite a shocking invoice for hospice services rendered. Eeek!!!

Someone asked me one time……..”is the care as good with a non-for-profit as it is with a hospice that charges?” Oh PLEASE!!!! Remember what I said above……the non-for-profit folks feel it is their calling. Some of them, even myself, feel it is an honor to be at the bedside of a patient in their final hours. I wouldn’t take a dime for some of the experiences I have had while holding someone’s hand and helping them walk towards the light. It is an experience like no other.

So just remember…..hospice care is for everyone and it is not a charity thing. It is help and comfort with the most precious final life event.

Until  next time……..

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I have always said that I get far more than I give from working with dying people and their families.  The longer that I do it, the more little hidden wisdoms come to the surface.


First of all…..I am learning to give up being a control of a situation, which is something most of us are not good at.  No matter how hard we try we cannot control when someone is going to die……..well you can if you are so inclined, but it is against the law.  I am talking about natural death due to illness or natural causes. We hate to see our loved ones in suffering and in pain. If they are under hospice care then you can be assured that the suffering is minimal as that  our prime goal is to extinguish pain as much as possible. No needles are used as it is administered through  palliative care.


Sitting there at someone’s bedside you still remember what the patient went through to get to this point of transition and it is frustrating knowing you couldn’t control what was happening then anymore than you can control what is going on now. The time of death is totally between the patient and God, and really it is God who has the final word.


I have also learned to let people who I am close to, know how I feel about them.  Be it a hug, a few words, an “I love you”. However I feel at the time I express it.  You just never know when you leave them what might happen.  On several occasions I have had someone in a patient’s family say to me after the patient has died, ” I didn’t get to tell them I loved them before they died”. Well what were you waiting for, I am thinking.  As an 11th hour volunteer, that is one of my sole objectives with family members is to get them to say their goodbyes, and whatever unfinished business they may have with the patient, BEFORE it is too late.


Along with the paragraph above, there are two events in our lives that are one-time only events.  Being born is one of them and dying is the other.  If you want to be there when  child is born then I suggest you make it a priority to do so if the parents want you there.  The baby is only born once and if you miss it, well sorry there is no do-over for that event.  The same is with death. Once the patient dies, that is it. There is no instant replay.  If you have sat there for twelve hours and you leave the room for five minutes and the patient dies, you have to just assume that you were not meant to be there.  There is a great deal of thinking that the patient ultimately chooses who they want to be there.  It could be they were protecting you and didn’t want you to witness and remember them that way. Some actually want to be alone when they die.


I have been a volunteer with hospice for almost thirteen years.  I am learning all of the time and am totally astounded to this day what I see and feel when someone passes.  Each passing event is different.  I will share more as I go along.


Until next time…….

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Within our group of volunteers at our hospice there is a small group of us referred to as the 11th Hour.  We were not chosen. Any one of us would tell you that we felt we were called to do this.  This is something not everyone can do, but for some reason we can and want to do it. We make ourselves available seven days a week, twenty four hours a day to be on call and to go when called.

To do this we take advanced training. We learn the different stages a person can go through when dying, as they all don’t do the same thing the same way. Each one is different. Sometimes the family will observe something that can frighten them. Because we know what is going on, we can reassure them that this is normal and just a part of the process. We offer a quiet presence and support in those final hours.

There have been instances where the family and I have sat around the bed and they have shared stories with me of the dying person. Some has brought laughter and some has brought tears.  Sometimes there  has been prayers and/or singing. If the person was particularly fond of a certain type of music and it was available, we would have it playing softly in the background.

I try to encourage the family to take a few moments individually and say their goodbyes and if need be “make their peace” with the dying.

There are instances where there is no family and we are there just to hold the patients hand so they are not alone.  I like to think I am walking them to “the light”.

Personally, as I have said in other blog chapters, I look on dying as an event, much like graduation, a wedding, the birth of a baby. The 11th hour is the final event and we consider it a privilege to be there.  For each of us who do this, being there gives more to us than we could ever give to it.  If you asked each one of us what we get from doing this you most likely would get a different answer from each of us and some would probably surprise you.

Last week we were chosen by the United Way Chapter in Rockford, Illinois as Volunteer Group of the Year. My eyes filled up with tears for the pride I was feeling for this group that I am one part of. The competition was stiff but the committee realized the value and importance of what we offer. No person should die alone and no family should have to witness a death alone unless they want to. Some do want to be alone.

This award had a personal significance for me.  I got my calling to do this the night my mom passed away. I said to Joan, the hospice nurse as we were leaving the facility, that what we have been doing the last seven hours was what I wanted to do for others, in some capacity. She had guided me to help my mom get to “the light” with dignity and love.

To my fellow 11th hour team members……congratulations to us! May God keep giving us the strength to do what we do, and keep showing us ways to be better and better! And thank you Northern Illinois Hospice and Grief Center for encouraging us to grow and never stop learning or serving.

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This week I said goodbye to a friend.  As per her request, I was with her in the final days.  Also per her wishes, family dynamics were handled and peace was made and I didn’t have to instigate it which was even better!

A few times in my last ten years with hospice I have heard a family member have regrets that they didn’t say what they really wanted to say to the loved one who is passing.  Another concern was I didn’t get up the courage to say what I wanted to, in time. In other words, the loved one passed on before peace could be made, forgiveness asked for or given, or just a simple “I love you” said.

There is no one person that can predict the exact time of death or whether or not the patient will be conscious or not and for how long.  DO NOT PUT THINGS OFF!!! Even in my own case I can remember my dad saying “do we have to have this talk now”? Yes dad we did. He only lived two more days and one of them he was mostly comatose.  There were things I had to say  and if he listened to me, that was up to him, but I was going to say them.  Had I known then what I know now, I would have had plenty more to say, beginning with I am sorry dad.

I am sorry dad I allowed myself to be manipulated to think what I was told to think which caused me to misjudge him greatly. He was not an alcoholic. He was not uncaring and unfeeling. He was a victim just as much as I was…..and all motivated by a compulsive obsessive view of love.

If you find at some point after your loved one has passed there is something more to say, write them a letter or go to the cemetery and talk to them.  Don’t let this unsaid “stuff” eat away at your heart indefinitely.  One way or another say it, then go on.  But the best is to say it while they are still with you.

Until next time…..

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When you are caring for a family member who is at that end stage of life, this is the time for conversation, and don’t put it off. The day I had to tell my mom that she was dying was truly a memorable event.  After she processed in her mind what I had told her and the two of us cried, we began the “do you remember the time we……..?” This went on for three hours non-stop. We laughed, we cried, we hugged, we shared. Of all the events in that last two weeks of her life I remember that one with clarity, more than any other.  I felt closer to her right then, than I ever did.

In the course of the final two weeks we were able to mend  some broken fences. Her final words to me were ” I love you and I’m sorry” and only I will forever know what she meant.

While sitting at the death bed with families of other dying patients, I have witness some pretty phenomenal  things.  Sometimes even when the patient is already in that non-speaking comatose state, I have encouraged and seen families actually sharing stories about their loved one and laughing and hugging each other.  To answer a question you probably are wondering, yes the patient probably could hear what was said as the hearing is the last to go.  At times I have seen the patient smile at something they heard.   What a way to remember the final event in someone’s life.


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