Hospice Question

[boysmom2]

I don't know if it's ok to post a question like this here, so please remove it if it's not.

I just completed training to become a hospice volunteer and I haven't had any experience with hospice before. I really want to do this well, to help in any way that I can. So, if you have dealt with hospice, is there anything you wish the people who worked with your family had known? Is there anything I should do or avoid doing? After this training I understand what my responsibilities are, but I just wonder if there's more that patients or families would want me to know.

I hope that I am not out of line in asking this. I just really want to do this job as best I can. I appreciate any thoughts you would like to share.

Thanks.

[meemee]

mama i just finished being the caregiver of my inlaws both of who were in hospice and they just passed. as you volunteer u will find u will pick up little hints that u only pick up as u go along.

the most important thing is your intention. no matter what work you do or how well you do it, if you dont put your heart into it and do it with love - they will know.

hospice is almost like birth.

love is the only thing you need.

non judgemental attitude too.

every situation is so different. as i found it while i helped my inlaws and a few others who lived on their floor in a retirement home - all they want from you is love and honesty.

i commend you on ur training and your enthusiasm to start on this path. i hope you have enough support to get you through this. it really is v. hard work.

it is always hard when u have to make sure u bring nothing of yourself to the table but are there to meet teh needs of the family and patient.

be honest. if they ask you to hold a position - like stretching your arm - let them know if it is causing a strain on you and then work on a comfortable position. take care of urself first. if u dont then they have no one to look out for them.

the biggest complaint i have come across is that the cgiver was not loving enough. not caring enough. that its so hard to come across a good caregiver.

[Susana]

I'm going to say if you think anyone you deal with could use or wants a hug, give it to them.

I was so raw while taking care of my dad that I loved each and every time a worker would reach out to me with a hug. The act of holding a person who is so exhausted mentally and physically actually charged me back up and kept me going when I didn't think I could go anymore. I took every hug I was offered and I appreciated every single one.

Best of luck to you in this work. Hospice workers, IMO, are saints

[laoxinat]

I highly recommend the book Sacred Passage by Margaret Coberly, Ph.D, R.N. You will very likey have to go through a training program and pass a background check (including drug testing). It is a great experience; challenging, but great. Good luck!!

[Vancouver Mommy]

Good for you! What a loving volunteer choice. I don't know if I would have what it takes to do that, but I wish I did. When my aunt was in hospice it was a very meaningful experience for the family. It allowed us all to be present and understand the process of death. Like an op said, it is almost like a birth in that regard. It gave us time to spend time together, talk about memories and let go. By the time death occurred, my aunt was ready to let go and that was a gift. It was the first time I had been present at a death and it helped me let go of a lot of my fear and misperception about the end of life.

Staff and volunteers were very honest. There were no euphamisms. Unlike in hospital where docs just can't seem to deal with the reality of dying. When she was ready to go, a staff person said "I think she will die today". It gave us time to be with her in her final moments.

If I could offer one piece of advice, it would be this. Remember that each of these people was once young, vibrant, strong and beautiful. They had dreams and adventures and great accomplishments. They were (and are) people. Most find it humbling to be so vulnerable, so do what you can to spare them the indignity of a gaping gown or what have you.

[the2amigos]

I answer coming from the hospice side of the table, been a nurse with hospice for 8+ years. The patients and families you meet will change you and how you look at life and death.

The number one thing is your presence. Don't try to push your "anything" on patients and families....your religion, your thoughts on death, your family, without being specifically asked, and even then keep it brief and vague. All they need to know is that you are there to walk this journey with them, to hold them as they walk if they need it. Some you will get closer to than others....but that's another thread!!

The biggest downfall of some of our volunteers (heck, even some nurses and other staff) is making the patient/family journey their own (meaning the volunteers).

Give them your presence and your touch, if that's is ok with them. Listen, really listen to what they want from you....and if you aren't sure what they want, ask!

In being with dying people you will learn what people go through physically, emotionally and spiritually to die, yet you haven't done it yourself....but you will have a better idea than 95% of the population. I find it an honor to be invited into this time of people's lives. I hope you do too!! Good luck!

[the2amigos]

The book "Final Gifts" is amazing as well.....

[boysmom2]

Thank you, thank you all so much. I really appreciate your willingness to share your experiences. You have all given me some really good things to think about and I will definitely look for the books you've recommended. I do feel it is a tremendous honor and responsibility to be a part of people's live in this way, and I just really want to do it as well as I can.

Thank you.

[AlwaysByMySide]

Having just finished a way too short experience with hospice for my grandmother, I have to say that being GENTLE was the most important thing. I was the primary caregiver for my grandmother, although we were living in my mom's house (and my mom is much more comfortable with not mincing words with people) and my mom was her medical surrogate. The chaplain, social worker, and home health aide that were assigned to us were WONDERFUL. The nurse that we got should not be working for hospice. She just didn't have the gentle vibe, and we had several issues with her. I don't think that it's something that can be taught though...you are either a gentle person (emotionally gentle is where I'm going with this) or you aren't.

And remember that while you may know the 'patient' as an elderly person who seems out of it, their family remembers them differently. The most painful thing for me was seeing my grandmother - who was sharp as a whip, the smartest person I knew, and someone I would laugh with all the time - turn into someone who stared into space and got confused.

The only other thing I want to mention is that some people won't show their emotions in front of other people - strangers or not. I am one of those people. I wouldn't cry in front of the hospice workers, I won't cry in front of my children...the only time I did was within the hour that my grandmother was dying, because I just couldn't help it. The very nice thing was that the hospice workers left us alone when we asked them to, after she died, and I could just go sit in the shower for as long as I wanted, and cry all by myself.

My grandmother had just over a week with hospice. Long enough for us to LOVE most of the people that helped us. Some of my last memories of my grandmother will be of her telling the home health aide that she loved her, or the chaplain who would come over and sit and talk with us for hours while her cell phone rang off the hook. They will be part of this family's memories forever.

[boysmom2]

AlwaysByMySide, I am so sorry to hear about your grandmother. She sounds like she was a wonderful lady. Thank you for telling me your story. I too am one who only cries alone, so I can understand your need for privacy. Thank you for your thoughts, I think this will all be very helpful as I begin volunteering.

[MilkTrance]

Originally Posted by AlwaysByMySide

And remember that while you may know the 'patient' as an elderly person who seems out of it, their family remembers them differently. The most painful thing for me was seeing my grandmother - who was sharp as a whip, the smartest person I knew, and someone I would laugh with all the time - turn into someone who stared into space and got confused.

This is important.

My mom passed away barely over 50. She was intelligent, fun, had a dry sense of humour and social. When she was dying, of course, nobody could see any of those things.

[boysmom2]

Originally Posted by MilkTrance

This is important.

My mom passed away barely over 50. She was intelligent, fun, had a dry sense of humour and social. When she was dying, of course, nobody could see any of those things.

I am so very sorry that you had to lose your mom. I just can't imagine. Thank you very much for sharing this.

[Maggie05]

My father died almost a year ago (July 24th). The hospice nurse and one special volunteer were so AMAZING. Angels, really. My dad received hospice care in the home for about a month. My father was a very friendly man, and while he was dying of cancer, he would have days of delusions, but much of his time was spent in clarity until about 4 days before he died.

He LOVED the hospice workers, but one particular woman was his favorite. She was from Russia, and they joked that he would teach her English, and she would teach him Russian. He would talk to her while she bathed him, never making him feel badly about needing her help. She would teach him words in Russian.

One thing I think was so important was that my father liked to be touched. His hair stroked, his feet rubbed. Like he was still human, worthy of human contact, not a "dying man" to be afraid of. I think that would be one of my strongest recommendations, to touch your patients, don't be afraid of them.

He slipped into a coma a few days before he died. The day he died, the hospice nurse was able to pinpoint almost exactly the time he would die. (I'm sure you know there are many ways to do this) I held him for the hours before he died, stroking his hair and talking to him in his ear.

The Russian Hospice worker was there, and sat with me. She cried with me. When my dad passed, (I will never forget this) she went over to him, and stroked his hair, and said , "Goodbye, Frank" in Russian.

I will never forget her.

[MamaHippo]

I was a hospice nurse's aide until my son was a year old. I was present at many deaths and had many experiences with families, both good and bad, and we had volunteers both good and bad. But i second the previous poster who said that its very important to not put any of your own 'stuff' on the families/people you care for - we once had a volunteer who, though a sweet lady, tried to convert every single person she cared for to her religion. This was very offensive to people and their families. Its kind of like the rules for being a psychotherapist - never offer any information about yourself unless they ask you. This is all about them. Kindness, empathy and gentleness are very important.

I also think that its very important not to act grossed out. Death is often messy, as is the end stage of life. Bodily functions arent controlled as well as everyone would like. If youre squeamish, or at least if you ACT squeamish, youre going to make the patient and the family feel awful. It takes a while to get used to it, but after a while, you can clean up pretty much anything and not eve blink. One tip though - if you need to, breathe through your mouth.

[mzminty]

Both of my parents died at home with hospice, within five years of each other. My family and I had such positive experiences with the nurses, social workers, grief counselors, etc.

One of the things that impressed me a lot about the hospice staff was their care and concern for all of us as the family members and caregivers of the patient. They were so incredibly supportive, coming at odd hours if we needed them, sometimes just to sit with us at the bedside. Someone else said something like this, but the words aren't really necessary or even helpful sometimes. It's the touch, the hug, the presence that can mean so much.

There's a very strong tie between birth and death. It's an honor to be a part of this process in anyone's life, and should be seen as such. I applaud you for volunteering for such a special job. I'm sure you'll make a difference in a lot of people's lives.

[MamaJenese]

My mother passed away a year ago almost at home with hospice care. The volunteers were a life saver. We spent 4 months with hopsice in my parents home. The workers we had were gentle and kind, and in lonley moments a great comfort. Thank you for being so brave and caring as to do what you are doing.

[boysmom2]

Maggie05, MamaHippo, mzminty, and MamaJanese, thank you so very much for sharing your beautiful stories with me. I am so sorry for all of your losses. I appreciate it so very much that you have been able to share them with me. I think it will be very helpful to have all of these examples to help me find my way with this. I apologize too to not replying sooner, but I have been out of town for a while. I will hopefully begin volunteering in the next couple of weeks. Again, thank you all so much. I will be rereading all of your stories many times. Thank you.

[Susana]

Maggie05, that is a beautiful story. thank you for sharing it.

[meemee]

boysmom maggie's post reminded of something that i thought it important to post here.

i am sharing my experience here which might be different from others.

for me i found hospice was really a v. v. spiritual work (in terms of your connection with your inner self - not talking to the person or family u will be taking care of). its really about the space you are in from where u plan to give yourself. you have to really, really be at peace with yourself. because it is v. demanding work. and its not physically demanding that i am talking about. that is there if u do those things. but it is extremely psychologically and emotionally demanding.

yippeee found the book - the sacred passage

http://www.amazon.ca/Sacred-Passage-...ion/1590300173

it is so important to truly just connect with the family. and when you do that then it doesnt matter what kind of job you are doing. u know they say the end result doesnt matter. my fil couldnt stand my cooking. but he overlooked it because he found the love and acceptance from me. if you are truly connected with yourself you will be able to give off of yourself much more easily.

i know there is a wonderful book out there written by a nurse about how to be more sympathetic in the hospice work. cant for the life of me remember the title. she i think was talking about the spiritual aspect of the process.

the best thing you could do is if u find u dont like it or cant give ur 100 percent get out. that will help not only you but also the family u would be caring for.

all the best mama.
and if you are at a good place you will love it. love the challenge. it wont be a burden to you. i know of some who have done it as a duty and really struggled thru the time they spent with the

[TexasSuz]

I have not read the other replies but wanted to give you my perspective since I am dealing with this right now. My mom is currently dying in my guest bedroom - we have days or maybe hours to go. She has been living with us for the past year and has been on hospice since January or February. In all of that time I have never seen a volunteer or been offered the help of one.

Hospice is a business. Yes, it helps those in the end and they have helped us a lot but it is still a business. They makes lots of money off of these medicare patients. The only help I get is a nurse visiting twice a week and an aid that comes once a week (now twice). Each stay for only an hour at a time. I have had to become my mom's fulltime nurse - especially now in the end. I have not even left my house in a week and a half because I am caring for her and can't leave her alone. The only help that hospice offered me was a $15 an hour aid to give me a break. I was insulted. We don't have the money for that. They assume we did because we live in a nicer neighborhood.

Anyway, to make a long story short - hospice sucks. Yes, they have helped educated me on the medical stuff and all but as far as really being there for me - no. And I have asked several times when I was really burned out.