An Educational Conversation

I had an interesting conversation. I am doing some research on hospices and palliative care (for someone else, not me). I met with a social worker who used to work for a hospice. She was very helpful.

I had no idea how hospice care worked, especially at home. Basically hospice care includes palliative care. If you have hospice care at home everything comes to you. Doctors, nurses, social workers, and more. It lasts for up to six months. If, at the end of the six  months you are still alive, you can be recertified for more hospice time (I think) unless you are too healthy and stable and then its back to reality.

Hospice care is also paid by medicare or medicaid unless you have long term care insurance. So think of it as free care when you are sickest and it all shows up at your house. If you are interested in hospice, its best to start research as soon as possible.

I found it very interesting how the process works. And learned that basically if you have been given less than six months to live, sign right up.

So from what I learned, when I get to that point in life (face it we are all going to get to that point in our lives), I will sign up for hospice.

Emotional Stress

About a year ago, I met a young woman who had had cancer since age 18 when she was diagnosed with an inherited pancreatic cancer. She had never thought she would make it to 40. But last year she did make it to 39 so she had lots of hope. Until last fall when everything changed.

In the fall, she found out nothing more could be done and she would be on hospice until the end. She got hospice at home and slowly began to decline. All of us who knew her were on pins and needles waiting and hoping. We got periodic updates on how she was doing. She was losing weight, she was not eating much, she wasn't getting out of bed much.

Then we would talk to her and she would tell us about how she is doing. She sounded fine. She admitted to being thinner and not eating much. We would hear she couldn't really get out of bed much anymore.

We realized that (a) she has been on hospice for six months, and (b) she should be close to her 40th birthday - something she never thought she would attain. Who ever thought someone would be on hospice for six months? Most people I know who go on hospice, last a few days or maybe a couple of weeks. Not six months!

In the meantime, we are all very happy she is still with us. We want to confirm the exact date of her birthday so we can make sure we celebrate it. But seriously, we are on pins and needles. We knew her too well. We knew about her cancer struggles and her family issues. She doesn't live close enough to any of us so we can just drop by. Phone contact is iffy because we don't want to wake her and she can't talk if her caretakers are there - which we never know.

How are we going to feel when the end happens? We like her and want the best for her. But this long decline is getting harder and harder to deal with. We talk about her and we care. Because we care, the emotional stress is building, the longer this she lasts.

With cancer, you have to deal with your own emotional stress. And you make new cancer friends once you are armed with your diagnosis and you share your roller coasters together. You share your emotions.

As time passes when I know I have a friend who is waiting for the end. She isn't fighting a battle or being a warrior. She is a young woman facing a terminal diagnosis which is nearing as each day passes. And as I am a friend, I am sharing it with her. And sharing her emotions too.

I'm Losing My Friends

Right now I have two friends in hospice care. One I have known for only about six months but we have gotten pretty close. She was in my knitting group and when I met her she was on palliative care only for pancreatic and other cancers that she has been treated for over 20 years. She is on hospice care at home and no longer goes to knitting. We have talked on the phone and skyped regularly over the past four weeks but it is unclear how much longer this will go on.

The other friend is the husband of a very old friend (friends for more than 40 years) and has been treated for stage IV colon cancer for nearly seven years. His disease has now progressed so that he is fairly 'out of it' and is in hospice care. I hope to get to see them both this weekend but am not sure due to my health. If you are incoherent and in hospice care, how long can you last?

It is hard enough to deal with one friend in hospice without having a second one to cope with as well. I am close to them both and will go to both their funerals.

Cancer sucks.

The Best Laid Plans

The best plans have a way of falling flat and causing anxiety and indecision. Today is our anniversary and we had planned a few days on the Cape to celebrate. My husband took yesterday off from work and I planned to work half a day, go to a doctor appointment and the hit the road around 3 to beat the worst of rush hour traffic. Well that didn't exactly work out.

My doctor wanted both blood work and an x-ray, of course. The blood lab was standing room only so I headed to x-ray which was very quick. The blood lab was standing room only still so I waited close to half an hour, when it usually is a five to ten minute deal. Finally I escaped and we got on the road after four which means traffic and the it started to rain as well. We arrived after six, checked in and got the notice that a lost key is a $50 fee.

Three trips to the car in the rain and we are missing a key. I put a leaky water bottle in a bag on the bed which manages to leak all through my bag -my knitting is wet, my pill box was drowned so I might be short a few pills for a day or two (but not the important ones) and the water soaked through the bedding into the mattress..... and its raining sideways so our ocean view is tempered by sheets of rain pouring down. The rain should stop shortly and we will proceed with our day.

One additional thing from yesterday is I spoke to my friend N who I blogged about last week,  B is home on hospice and not doing well at all. We plan to visit on Sunday to see her one last time but it maybe too late. I want to see her and told her I would bring her a beer. She laughed and said she would let us know if she wanted a beer or a glass of wine. I said her choice.

At this point if she wants to open a beer with friends and take a sip or just wet her lips with it, does it really matter? She probably hasn't had a beer in a while and no one has offered her one because she's on hospice and is clearly dying.... but hell if it was me, I would be very happy to have a glass of wine with friends if it was one of my last days on earth.

I just hope Sunday isn't too late. I will get a call if anything changes in the meantime... but of course the weather and cancer coordinate to mess up our plans for some time a way.

PS As always, a note to burglars we have a house sitter  in our absence.

Hospice shouldn't be a 'bad' word

What do we think when we hear the word 'hospice'? Face it, you probably think 'they are a goner' and wait for a funeral notice. How supportive and positive is that?

I have long suspected that hospices are not as bad as we think. Yes they offer palliative care when patients get to the point where they are no more treatment options. But they offer an alternative to nasty treatments. If you were the patient, how do you want to spend your last days/weeks/months?

Choice A is undergoing aggressive treatment which cause all sorts of nasty side effects resulting in discomfort and unpleasantness and you are either a patient at the hospital or taking frequent/daily trips for addition medical adventures? Choice B is receiving palliative care where your comfort is of utmost importance that is offered either in the privacy of our own home or at a facility which is quiet and full of caring people focusing on pain and your and your family's emotions?

Me I want choice B? I am a wienie. I do not want to die full of tubes and pain. I want to to go quietly (after trying as many options as are available). I do not want pain. I do not want to die alone in a hospital. Let me go write this down before I forget so that when the time comes my wishes are honored. (Damn, I'm turning in to my grandmother who had an 'in case of death' envelope - 2 by the time she died at 96 - full of little pieces of paper with instructions.)

A friend of mine who died from breast cancer a few years ago was receiving hospice care at home. I visited her about a week before she died and brought her take out Pad Thai. She was happy, cheerful, and on oxygen. Her mother and step father were visiting for a few weeks. But while there was no hope for treatment, she spent her last days pain free, living with her family and visiting with friends. That's the way it should be.

Hospices are trying to rebrand themselves in terms of the care they offer. People think of hospices probably just as you do - the goner thing. But hospices offer palliative care for months where people actually live longer and more comfortably than those undergoing aggressive last minute treatment.

One of the problems is doctors are referring people to hospices later and later. There are several theories on this including costs - hospice care costs less than hospital care but that means the hospitals lose the income from the patients. Also, doctors may be hesitant to admit they can no longer help a patient and by referring them to hospice, they are admitting defeat

Me I'll be signing up for hospice care when I need it. But I hope that is many years from now.

The Death Panels

I hate to bring these up again - but I am sure everyone remembers them and how Obamacare was going to create death panels to kill us all off. They kind of reminded me of something out of communist Russia or Hitler's Germany on getting rid of the undesirables.

Butwhat if they were good death panels and included:

- An oncologist to help weigh pros and cons of chemotherapy and other treatment
- Palliative care consultants to help understand the options regarding life support and make recommendations about pain control.
- A psychologist to advise on how to share the news with family members.
- A spiritual adviser, chaplain, minister or priest to offer comfort and prayer if wanted.
- A case manager to help organize transfer to the desired hospice.

I think I would want that kind of death panel. But mine would also include a caterer to plan my memorial service which would need to be catered by both a really good Jewish deli, a good Chinese restaurant for the appetizers, a sushi bar, and a high end seafood restaurant - I want a bash - and I want to be able to sample all the foods first.

I might also want a lawyer to flit on through and help me finalize my will and take care of all the legal crap.

What are the requirements for your death? Pain free? In your sleep? Not a lot of suffering? I think this kind of death panel would be very helpful.

I am not in any rush to go and right now am focused on living life to the fullest - and have a lot of fun along the way.