Awwwwwwwwwww. I'm just about in tears!
That's about the sweetest thing EVER!

My thoughts are with you at this very trying time, babs...take comfort that you have the well-wishes of many sincere people here--and in the toughest of times, you'll never really be alone...

That is so beautiful! Your family and freinds obviously love and adore you both very much.

I can't even imagine how you feel right now. I have never experienced what you are going through but I do know what it's like to lose someone you care about. I remember when I was 10 years old and I came home from school I just knew something was wrong. My father had been struggling with Crohn's disease and he died when he was only 35 years old. I was having a really hard time and I wanted him back. My father was always sick. I used to visit him in the hospital and when I was 6 years old, I gave him my stuffed animal so he wouldn't be lonely. My mom said that it was better that he wasn't hurting anymore. It would have been selfish of me to want him back sick. Funny thing is at 10 years old I didn't care if he was sick or not, I just wanted him there. I later thought about it and decided that I loved him so much that I would rather have him not with me than hurting. That was such a huge sacrifice for me. I think that was the first time I ever had to put someone else's needs above mine. It is such a difficult time when someone you love is hurting so much. It hurts you deep inside to the very being of who you are. Not being able to do anything makes it worse. Sometimes you think that if you could take just a little of their pain for yourself then they may feel better. It is quite strange the thoughts we get in our heads. Just know that although he can't express gratitude right now, he is so thankful that you are there. Remember when you got married and the officiant said , "In sickness and in health.."? There is a time for everything in marriage and this time is the hardest. If he was by the right mind, could do for himself and could look at how much you are going through for him- he would marry you all over again. You are such an amazing woman. I will send all of my positive thoughts your way. I hope you and your family can find some peace- even it is for only a few minutes at a time.


Love,
Clare

My family were worried about us so I promised to send a TRUE account of our progress on a daily basis. (If it wasn't true, they'd still worry.)

Here is a segment of to-day's. I think it's pretty funny actually.

"After he was up and sitting in his lounger, he told me that this morning he had seen a big pile of something, food, maybe, or dirt, on the 'far' side of his bed. (He has a hospital bed in about the middle of the living room.)

I very much doubted what he had told me, since I had swiffered last night after the guests left. But I looked, and I did notice a small amount of sandy-looking dust, it looked a little like the 'dust' you find in the bottom of a bag of cheerios, or very fine sawdust. So of course I tasted a tiny sample. Not cheerios. In fact no taste at all.

It would not have escaped the swiffering, so it had come down overnight. So I looked for a source. Nothing. Then there was no place else to look but at the ceiling. So I got the step-ladder and the flashlight and had a good look at the ceiling. There were a few flecks of sawdust and several fine threads, like spider web. I swept the lot into the white dustpan. Then I looked at it with a magnifying glass. There seemed to be insect parts, like little bits of ant heads etc. and some legs. So I told Ern. He said he'd seen a couple of middle-sized ants in the house the day before.

So I wondered if a female ant had inserted an egg in the little niche between the beam and the ceiling boards. Then maybe she plugged it in with spit and sawdust, then when the young one hatched it kicked sawdust out as it emerged!!! It was then I deeply regretted the taste test. Oh, well, maybe I'll grow big gauzy wings and fly away.

So I sprayed insecticide on a piece of kleenex and used packaging tape to seal it along the area beside the beam where the traces had been.

Ern had been watching this whole procedure and suddenly said, 'There's a black thing coming out on the other side of the beam!' I looked at the other side and an ant was rushing out, followed by another.

So I hurried to prepare another insideticided kleenex and taped that to the side they were rushing out of. Then I swept up all the ants I could catch and threw them down the bathroom drain.

I changed Ern's bedding because no doubt there had been wrass in the sandy-looking debris and Ern's immune system is of course compromised.

So obviously I was wrong about the egg-laying, there is an entire swarm of them getting into the house and traveling around between the floors. A neighbor told me there's a product you surround your house with so they will stop coming in. We very rarely use insecticide, but in this case I think we will. I don't have the energy to deal with this right now in a better way ecologically.

But it's funny. The ceiling is red cedar 1" boards tongue and groove. I thought bugs didn't like red cedar."

kleenex patch

Babs, I am so sorry to hear this. I've read all the posts and find them very touching. It's hard to find words to say in times like these, so I'll keep you and your family in my prayers.

It may be hard to find words, Honi, but you and the others who have expressed such understanding and sympathy have truly helped me.

The understanding is based on shared loss. Others have lost loved ones, too, and they know the feeling of wanting to take care of the one who will soon die the very best they can. This is the only remaining way to show our love.

My daughter is only thirty minutes away by plane, but 6 1/2 hours by ferry and road! So the idea of my e-mailing daily is so she'll know when to come, whether I directly ask her or whether she senses something. She's very perceptive, she'll know, believe me, if I'm putting on falsely positive attitude!

Because the death of loved ones is a common experience for all of us, to write these ongoing messages on A/P does not only help and comfort me, just getting it off my chest, but it just possibly might help others, who deal, or have dealt, or know they will deal, with the loss of loved ones.

This is what it is like, day by day. Thank you all for understanding.

As always, babthrower, you are an inspiration to me. I am very moved by what you're strength and how much you love your husband. I'm sure many here at AP feel the same, we are all thinking of you during this hard time in your life. I don't have anything to say to help except to let you know that sharing this story will surely help me be a better person if I go through the same.

I'm afraid I'm no better than I should be. From yesterday's e-mail to my daughter and son-in-law:

------
"We had the Home Care head nurse out at our place yesterday morning to discuss our situation. She stayed about an hour. She told Ern he was getting really good care! Then she looked around and said, "There's a lot of love in this house." I was astonished by her remark because it didn't seem like the sort of thing a nurse would say. But still it was very sweet of her.

But then the respite man came by, to stay approx. 12 to 4, and I went shopping. I think Ern was kind of upset that I was leaving him with a stranger. So he was pretty cranky when I was offering him food after the respite guy left. So I said, "Right, I won't force you," and went upstairs to watch TV. Ironic, on the same day as the nurse's comments.

So he didn't eat after noon, then, because the food I had left out for the respite guy to give him was untouched, and I made no further attempts to coax him to eat that evening.

But we're okay again today. Ern told me he loved me very, very much, and I told him the same, and there were hugs and kisses. I have to hug him very loosely, he's become so thin and frail. Deep down he knows I'm only trying to take good care of him.

Today he has kept very quiet and not eaten much. He's having trouble with body temperature. He will say he's chilly and I feel his feet and they're hot. So I cover his shoulders because he is so thin. It's hard to get it right.

Today he didn't go out. But he did listen to some music (Sarah Brightman) so I'm glad he had some enjoyment. Later he went to sleep to Mozart.

Today he had oatmeal and an egg for breakfast, and cottage cheese, grapefruit sections, potato salad, tapioca pudding (all very small amounts) and I hope he'll eat a little chicken salad later. It's 4:30 now.

Your brother might come up tomorrow. He will sleep in a tent on the deck, with the loaded deer-spanker beside him. He can play 'great white hunter' to his heart's content. And cut the grass."
----------
So you see I'm telling it warts and all just as I promised. I'm ashamed not that I would snap at him like that, but that I let him go from about 5 pm on without trying again to get him to eat. But I hope I'll be more patient next time, because I know he may become irrational from the toxins. His very logical thinking was one of the things I most admired in him.

Footnote: The deer-spanker is an air gun that shoots little plastic pellets. They won't break the skin and would only be dangerous to an eye. But they would sting pretty badly at 50 feet or so. So when they come in the night to eat my roses and everything except dahlias, they will get a surprise that I hope they'll remember. They're pretty smart.

Hi Babs,
I think your daily emails to the family are a great idea.
Don't be too hard on yourself about not getting Ern to eat, you have a lot to deal with here too remember.
I love your little illustrations of your posts that we get to see in the photos by the way!

Always thinking about the two of you, dg

No, Dancer, I'm not too hard on myself, but I know from talking to EWood27 that he found the same thing with his wife, but she was much harder to handle, she had Alzheimer's, and he had to be very careful sometimes and remember that it was the illness talking and not her. And that helped him to keep his temper when things piled up on him. So it's just part of being aware.

And thanks for not giving me a lecture about cruelty to deer, I know you're an animal-lover; but these little plastic pellets will only sting.

Bab, my thoughts and prayer are with you and your family.

I'm learning things to do for Ern so he doesn't need to go to hospital.

1. I run a saline solution, either a little one, or a full liter, into him using his PICC device in his vein. The PICC device runs right up the vein to inside his heart. It works by gravity. There is a machine, a pump, I could have, that would speed up the process; but the nurses tell me the machines are overly sensitive, and give false alarms. So my son set up a simple hook and chain device suspended from a big beam in the ceiling, and since we're in no hurry when giving an infusion this works just fine.

'Rah for lo tech!

I was going to borrow an over-the-bed table on wheels from the hospital so Ern could eat in bed, but changed my mind. It's good for him to sit up and get out of bed. When he doesn't want to get up, I can improvise a stable tray for him using a buckwheat-filled pillow and a light bamboo tray for his lap.

The saline is to give him fluid and electrolytes when he doesn't drink enough. He gets more alert and has better clarity of thought after an infusion. This is important not only for his state of mind but for his safety.

When he is irrational he tries to get up and do things, and has twice fallen in so doing. Very luckily he didn't hurt himself badly, just some bruises, but the first time he fell I didn't hear him, and by the time I found him, about 5 a.m., he was thoroughly chilled. He had managed to by-pass the safety railings on both sides of his bed. The day he fell, the doctor came to the house, and that is when he first gave Ern morphine. It was then he prescribed morphine in two different forms: injectible and a syrup Ern can take orally.

The doctor also arranged for a home-care RN to come by each day, and she taught me how to administer the sub-Q morphine. It’s very simple.

As it happens, most days she is not needed for other care. She phones every morning, and I tell her how he's doing, and whether she is needed; her last visit was Saturday.

2. So the second thing I learned was how to give him low dosages of morphine using a different device, a sub-cutaneous ("sub-Q") port in his upper arm, the 'other' arm. He had one on his chest but he pulled it off; he thought it was chewing gum! (I also have a morphine 'syrup' to give him orally.) These are used very sparingly because although they make him relax, they also constipate him, and that is not good with colon cancer.

His other medicines are straight oral doses, pills, and as long as he can swallow, it's best to give him the tylenol-codeine pills for pain, rather than the morphine.

I'm buying lots of music from Amazon.com now, because he does like it and it calms him. But the latest one, Georges Cziffra playing Chopin, Liszt and Franck, the one that A/P's Colin mentioned, Ern doesn't like very much. But I like it, so I play it in my bedroom.

The new thing is that Ern has some dementia. This is due either to toxicity -- the failing liver no longer filtering the blood -- or actual invasion of the brain by the cancer. There is no treatment except as mentioned above to relieve his distress. He has aural and visual hallucinations, and sadly are of a threatening kind. He often wants me to tell him what 'they' are doing, the people all around the house, on the deck, going by the windows, or walking and talking upstairs. They are making an 'uproar'. Our house is very secluded, surrounded by trees which muffle almost all noises except the odd motorcycle. There is never more than one person here besides me, and that would be a nurse or my son or daughter who come to help me out. And they are very quiet and considerate. Most days it is just he and I.

This morning Ern mistook me for a nurse. “My name is Ern,” he said to me. I didn’t correct him.

My son advised me not to try to ‘talk Ern out of’ his delusions; this would only serve to reify them. I think that’s good advice. So what I usually do is try to distract him instead. My son gives great back-rubs, so when he was here, he gave Ern back- and shoulder-rubs, which seemed to comfort Ern.

In short, though, the disease is progressing very rapidly. This does not distress me because in his current state of mind he is no longer comfortable; his quality of life is poor.

As an RN, this stuff comes easy to me. It isn't difficult for me to find a vein and start an IV. It is nothing for me to give a shot. I don't have much time. I am in and out of there.

Given I am always 'in charge'. It really is me that does come to the family. One of my patient's died, with family present. His daughter said words that immediately sent me to tears. I thought that I was going to be in big trouble for not being professional. This is far from an easy job.

I doubt it would be so mechanical with my own family. It took me a few years of nursing to understand and stop fearing patients who might not make it. Thankfully, I learned.

Bab, this is very hard for even nurses. I know how much this hurts. I know how it hurt me and it was not my own family. My parents are not doing well, but it is no life or death problem, but it kills me to see it.

I am so sorry for your family that your husband fell upon a serious health problem. You do need some help to care for your husband. Are you getting it?

Bab, I would like to know who is helping you. You do need a break and I do understand how much you care. You need to cry your eyes out and your husband will never know. It really is that bad.

My love and prayer to you, Bab, and your family.

WF says, "As an RN, this stuff comes easy to me. It isn't difficult for me to find a vein and start an IV. It is nothing for me to give a shot."

The nurses who give my husband home care and teach me procedures also don't find it difficult to find a vein and start an IV. They're matter-of-fact about it, and seem to regard it as just a routine part of their job. They seem to think that, as unsupervised RN's, competence is expected of them.

What I really find remarkable is their sensitivity. They make the patient and the caregiver the focus, and ask the patient's permission before doing any procedure, and they somehow manage to make the patient think he is the one who is in charge.

And when they show me a process, they show me once, then back off and watch me try to duplicate what they have demonstrated. They don't 'hover', but watch alertly. If I begin to make a mistake, they quietly tell me the correct move. This method prevents the student caregiver from jumping or otherwise doing harm by some over-reaction.

All three of them use this method. It must be what they are taught to do, at special home-care nurse's training.

They are gentle, caring darlings.

We have a new kitten named Standby. He loves Ern above all. Here they are together. I have taken the photo at a sharp angle because Ern does not look as he once did. The woollen hat is because he has lost his hair.

Ern and Standby.

Ern in May three years ago.

Babs,
Thank you for sharing this with us. I'm glad that you have found such kind nurses to help you though this.
The picture of Ern and the new kitten is just charming. Of course I knew you wouldn't be naming Standby some ordinary cat name

Just a comment on WF's post, I think it shows remarkable empathy and consideration for your sadness.
Babs, you bring out the best qualities in all of us here! dg

Babs, your picture of Ern with the (wine, I hope) glass shows a man who looks like he is enjoying a good life, a happy and content man. I don't think he got that way alone. However long or brief that time has been, the two of you have something few of us get at all, even briefly.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
dg, I agree that WF's post is a good one. Not enough of us remember that health care professionals feel pain, too. It's not a job I could do.

Bab, as a nurse who did the job your nurses are currently doing for you, I commend both the description of their techniques and care and also for the formidable strength and loving skill YOU are applying to Erns care.

I am sending that protein powder tomorrow and if you have any questions about how to use it or recipes you are interested in using, just call, email or post me.

You are correct about the nurses.. that it HAS to be a matter of fact confidence on doing the teaching and skills they are using. There is often no backup on duty... there is only yourself and your own skills and you better know what you are doing (I am speaking as a nurse in this situation). And you have to know the best approach toward teaching families on how to do the sometimes complicated medical techniques they need to learn to do.

Frankly, not all people are as bright and inquisitive as you and it CAN be a challenge.

Your kitty is adorable, and your husband is quite handsome. Beards are distinguished.

It is nice to put a face to the person Sagus and I are helping.

All your good wishes are appreciated in a heartfelt way. He is still enjoying the kitten's antics. That cat will always be special to me because he brought a smile to Ern's face and a twinkle to his eye at a time when Ern is feeling very, very tired.

Also the insanity of the Donovan thread, which reminds me that life is essentially silly; and if we find love and trust along the way, then we have stumbled perhaps by pure luck onto one of the few things that helps make sense of it all.

Yes, DG, Ern liked a glass of wine with a meal, but his favorite recreational drink was a good old-fashioned Pilsener. He was always very moderate, though. Perhaps some Seagram's rye around the holiday season. Now he will take an ounce or two of Guinness stout because I've told him it's good for him.

Sher, I think that protein drink will help sustain his strength, and it's likely to be palatable to him because it's a mild flavor. He hates strong flavors these days. Very kind of you to take the trouble to send it.