PALLIATIVE VS. HOSPICE

Palliative Care was known as comfort care but there is more to the difference.
You can get palliative care while still receiving other treatments, like chemo and tests to gauge the process. Palliative care can be for those going through treatments that expected to survive. It will help them manage pain and other issues during treatment.

Hospice care is intended for loved ones to be comfortable during end of life care. For this reason other services may be available while treatments may not.

It is between you as a patient and the doctor to know what program is best suited for your care.
Ron Mattoon Posted 2019

The difference between Hospice and Palliative care is explained at the following link:
https://www.healthline.com/health/palliative-care-vs-hospice

You should also ask your doctor about palliative vs hospice care. It needs to be prescribed either way.

There is a caregivers guide you can download from this web site that can help:
http://www.nextstepincare.org/Caregiver_Home/Hospice?gclid=CNKJp-mq97UCFe4-MgoduVUAsg

Personal experiences are so different because the needs are different. Please do a lot of reading and thinking about this choice.
You will need to select a care provider in your area that meets you needs. Do the research and learn more, so you can make the right choices.
I think you can also start with one kind of care and then go to the other.
Pat Sanders lary 1995

A good resource titled “A Deeper Understanding of Palliative Care” published by Georgetown’s nursing department. Provided in the resource are Insights into what palliative patient care is and how it differs from curative and end-of-life care. Also discussed in the resource are common challenges in palliative care and how to combat these challenges.
https://online.nursing.georgetown.edu/blog/understanding-palliative-versus-end-of-life-care/
Ron Mattoon Seattle 2010
Posted 8/2018

LISTENING AND TALKING ABOUT DEATH

When anyone gets informed that hope in this life is gone, – sympathy, empathy, compassion and understanding is needed. Someone to listen. It is so hard for the family to cope and it is too hard to talk to those closest when it may just end in tears. This leaves the person in somewhat of a vacuum.

Open your door so they know you will be there if they wish to talk and that is the best thing you can do. It is important to prepare yourself not to get overly emotionally involved with a friend, neighbor or club member. Remember, that person will die whether or not you try to make their last time a better quality of life than would have been had you not been there.

I was told years ago, that it is selfish to be unselfish. Sounds silly until you think about it. If you wear yourself out worrying and trying to help where you can’t, you wont be able to help anyone else, including yourself. About 25 years ago, I was talking to a lass who had just lost her first baby. It was a small town so she knew I would be aware, and we talked for a while when she surprised me by saying that friends could not handle discussing it, even crossed the street to avoid her! Isn’t that sad! Being a young mum at the time, I could never imagine how they coped.

Why do we avoid talking about the only sure thing in life! That is why we need to listen – there is no right or wrong thing to say. It is ok for the dying person to cry, but we need to maintain our composure while listening. Also, what is said is in confidence, passing thoughts, which is the way to process past issues we all have in life. All these circumstances take a lot of time, can be emotionally draining, so, if you take it on, be prepared!

I have always tried to be a good listener, as I have never found one when I needed one! However, my tolerance level has been stretched the last few years – not quite sure if I qualify at the moment! My motto is – the most precious gift you can give is your time.

May God Bless You All. Thanks for being here.
Just my two cents worth,
Pat(ricia) Carer,
Australia

Final Medical Treatment Options, Pros and Cons

Dealing with the process of learning what decision should be made when facing an advanced illness is a hard and scary thing to face. There has been some recent studies to review the success of things like CPR, Breathing Machines, Feeding Tubes and many other life sustaining procedures. I was given a book that help me tremendously to understand the pros and cons. This has helped to enable a productive discussion on what a person wants.

The author does not tell you what to do but helps you understand the advantages and risks with the procedures. It is your choice and no one else, but the information helps you and your loved one. These choices are not only a medical concern for you and your loved one, but VERY emotional. He discusses that too. He also discusses what Palliative and Hospice care are and the limits of care involved with them.

The book is titled “ Hard Choices for Loving People” and the author is Hank Dunn. We got our copy from our local hospital Palliative/Hospice Care advisor.

I did find that the book is available on Amazon.com.

I hope it help you as much as it has me when you need to make hard choices.
Ron Mattoon

Transitions- thoughts from a laryngectomee  widow

Below are some thoughts from a laryngectomee widow, Avis Kaeselau, which she wrote and titled “Transition” after losing her husband to “our disease”.  It is offered here as another example of a way to deal with and recover from grief.

His clothes still hung, on their hangers, in our closet, neatly and untouched. Everything was in its usual place. How could I even think of getting rid of them? It would only leave another big void in my life. My husband had died a year ago and it was unthinkable to part with anything that was once the very essence of him.

He was a hard working, loving man, providing for his family, and his clothes, being modest and humble, portrayed this aspect of his life. I could picture him in every shirt that he wore on different occasions …….his favorites and not so favorite ones. Each piece had a story to tell. Deep down I fantasized that maybe this was all a dream and I would soon wake up to find him lying next to me again. So I shouldn’t clear away his things, because he may need them! But this just hasn’t happened and who was I kidding, but myself.

I reasoned that it seemed so insensitive, to throw his clothes into a Salvation Army bin , where they would get mixed up with everyone else’s castaways, or to donate them to a thrift shop for people to scrutinize and pick over…then, to perhaps witness someone in our town wearing my husband’s shirt! Maybe I could just leave them in our closet forever? That would be easy, but my life has changed dramatically since his death and I am still here, realizing that I must move on and keep living. Nothing stays the same, even though I wish it would.

Dads flannel shirts and winter sweaters were dispersed among our four children and myself, but our son and sons in law were all too big and tall to fit into his pants and cotton shirts. What could I do with them? I agonized over making the right decision. What action could I take that my conscience would allow me to live with, while gaining space in our once shared closet, soon to become solely mine? Would giving them away or tossing them out make me selfish or irreverent to his memory?

About 3am, early one morning, an answer popped into my head. Due to my belief about death, I had come up with the perfect solution. I would make a quilt from the material in the clothing……in fact, five quilts, one for each of our children and one for myself! My belief is that, when you die…..you don’t ! You just change form (from body to spirit) and so it would be with his clothes. They would simply change form and be with us in a different way. This was the answer! I felt good about this idea and couldn’t wait to begin the transformation!

That same day I started, carefully cutting up his shirts and pants into the same size squares. No fancy patterns, because he was not fancy or frivolous. Each sleeve and pant leg was tenderly opened to enable me to cut the flat pieces that I needed, without a seam. I was especially careful to keep his shirt pocket in tact in one of the squares, where I would eventually tuck a laminated, heart shaped photo of each child with their dad, which also had a message on the back that stated, “I’ll always be with you”. This would be attached to the” pocket square” with a gold cord, pinned to the inside, so it couldn’t drop out, and from each article of clothing, I collected every button for my button box, which I inherited from my grandmother ( a beautiful frugal women ) and my children would someday inherit from me.

The colors and patterns were artfully coordinated into harmonizing groups and were sewn together with much thoughtful concern. Then, they were backed with a super soft fleece material and lightly stuffed with batting. Lastly, they were quilted with floss of a complimentary color and each priceless photo was placed in its respective pocket square. They were striking, simple and honest… an array of irreplaceable memories, with the added sense of touch!

When the quilts were finished, the children came to the house to get them. We sat around, each one eager to try out his special blanket, as we deeply pondered every square, recalling it’s happier past. Within a few minutes, we began to notice something unusual….an “extreme” warmth that oozed from them. They seemed to exude a heat that was intensely soothing to the soul, yet so much hotter than we would have imagined any quilt could possibly produce. We immediately knew that it was dads “energy” and the warmth of his love, that we felt, then, and every time since, that we’ve used them..

I don’t mind the emptiness in the closet, as I thought I might, knowing that when I need to be hugged and comforted, I can snuggle under my precious quilt to feel cozy, safe and loved, because his clothes haven’t really vanished, they are still here with me……… like him, they’ve just changed form.
Avis Kaeselau
81 Elizabeth lane
So Dennis MA 02660