Rich has had one episode of profuse bleeding from his mouth, but that was a vein. The Doctor said it could break though the artery at any time. He said if it does it will not stop. He said it could be 2 hours or 2 weeks. Hospice gave me valium IM to give him if it happens and instructed me to have dark towels on hand.
Rich just says its not going to happen. I call his kids and let them know. I just need some support. Again the doctor and the hospice nurses are talking like I should be able to handle this because I'm a nurse, Why can't they understand how different it is when its someone you love. I'm not ready for him to bleed to death!

Dear Julie
i know you are aware that this is exactly the scenario Rob and i faced.when his neck broke open under his chin and across his larynx,you could actually see the artery with the naked eye.
Robs mucous was thick and choking and required vigourous coughing to expectorate.We knew that every time he coughed,the artery could rupture,and every where in the hospice we went we had to carry dark towels and an emergency buzzer.The staff said the end would be very swift for him but very traumatising for me if i was with him at the time.
The fear of dying from a ruptured artery,caused his first real problems, and he became very agitated and distressed,He was more than happy to die, but not in such a horrific way so he too was started on valium.This had very little effect,and as his agitation increased so did the risk.
A medical decision was made to offer Robin varying levels of sedation which would ultimately result him becoming semi comatose and eventually comatose so he could pass away quietly in his sleep,and he chose a low level of sedation to start with.This took away all the anxiety and fear of rupture and once his mind and body had relaxed nature swiftly joined in and took its course.From the start of the sedation to the end of his life was less than 36 hours.
The Relief that i would not have to face watching him die such a gruesome and horrific death was gargantuan,and Julie NO ONE nurse or civilian should ever have to cope alone with such a thing.

YOU ARE NOT HIS NURSE YOU ARE HIS WIFE .
shout scream do anything you have to make people realise that you need care and support just as much as he does and no matter what the letters after your name say you are emotionally attached to Richard ,not a cool,calm detached professional.
The staff at Robins hospice treated the whole family not just Robin.I was shown care,compassion,considertation,i was involved in every discussion and every decision and given counselling and ministry.
All the staff knew i was a registered nurse and anything i did in the way of caring for Robin they were grateful for but never expected,and they downright refused to let me be responsible for some of the bigger issues we had to deal with because they realised the difference between being attached and detached.

Julie talk to someone very soon and tell them you love the man and cant function in RN mode at this time,you need to be his partner and support,not his physician.

Please please e- mail me if i can do anything to help you through this.It is such a short time ago i was filling your shoes and i know exactly what you are feeling.

love and best wishes Liz

Julie
My heart goes out to you. This is the most horrendous position for anyone to be in. Surely there is someone on the hospice team with enough compassion to take away the caring of your husband from YOU and leave you to be a wife to hold hands, hug, to give the comfort only you can give. You cannot spend the next part of this journey alone and terrified of what could happen. As Liz says it may not, but I remember Christine who was on the board three years ago having the same fears, and like Liz it did not come to that.
But if you cannot get more nursing help yourself, please get a friend or a family member to stand up for YOU.
Sorry, I think I just got on my soapbox and gave you a lecture. Sorry but your post moved me beyond words
Sunshine.. love and hugs
Helen

Julie,
Sorry to hear about this turn of events. You and Rich are in my thoughts and prayers.
If you steer me to the location of the potential artery I may be able to give you some very helpful and potentially life saving emergency treatment advice of how to deal with it if this occurs.
Cheek, Throat, tongue, floor of mouth etc.

Here to try and help.

Cheers,
Mike

The hospice stance on this type of emergency involving the main carotid artery under these circumstances for Rob, was that no heroic measures could be taken to save the him.The terminal status of the condition precluded such intervention as all the Medics and nursing staff went to great pains to explain.
Hence as Julie is doing, and i did ,the walking around with a dark towel.All that is to be done is to press the towel hard against the bleed if it should occur and wait for medical assistance.

The medical assistance in question would consist solely of making him comfortable until it was over,which i was assured would be minutes.

Its a terrifying scenario to live with,and i am unaware of any tangible emergency treatment for a ruptured carotid in end stage SCC patients.

Cookey,

As a former paramedic and now dentist...you are correct. I was hoping it was elswhere...guess I missed that in the posts.

God speed, my first prayers are for Rich.

Mike

Rich's is not the carotid but the floor of the mouth and tongue. Right where the tongue connects to the floor. My mind has gone blank on the name.
Hospice gave me some absorable hemostat and gauze to pack his mouth if it goes into another vein, Luckily Rich is calm, Basically he says its like a nose bleed. I wish I could be as calm as him. He knows I have the Valium here to give him but he can't understand why he would need it/
The doctor told me only a surgeon could stop the bleed if it was an artery and I could rush him to the hospital, and then if would be a very tempearary fix Even if that was what Rich wanted which it isn't we live 30 miles away from the hospital.

Julie i am so sorry.Even this case scenario is not as straightforward for you as it was for us.
There is nothing left i can think of to say other than i think of you all the time and pray you find the strength to get through this nightmare together.

love liz

Julie,
I too, feel the same and offer the same heartfelt wishes that Cookey has expressed.

This is still very serious but, not as bad as the carotid scenario but still very serious.

May i offer some potentially helpful advice.

You will not be able to, and Rich will not allow you to put a dark towel in his mouth to his advantage.
Got to your pharmacy and buy some 2x2 sterile gauze. Buy about 500 they are very inexpensive. Call your family dentist and ask if they have or can provide you with "Surgicell". This is a hemostatic impregnated gauze, if you cannot get it send me your address and I will send some to you.

If my family member was in Rich's position and the worst happened this is what I would do. (Cookey chime in anytime if you can offer anything, I'm shooting in the dark here.)

Julie, I personally do many biopsies in my office, remove imacted wisdom teeth, place implants and do gum and bone grafts. I have run into a few bleeders in the past. Some were the result of surgery and others medication. If I had a lingual artery bleeder that I could not ligate, this is what I would do until paramedics arrived.
The vessel you are describing is the lingual artery. It has two branches, one on either side of the tongue. The following will only work if the rupture is reachable with your fingers.

1. Call 911 tell them what is going on, ask them to meet you en-route to the hospital tell them where you propose to meet. If they will not do this stay put until they arrive. Then Rich will need, immediate direct bi-manual pressure. If you place your index finger behind the perforation/bleed and your thumb outside the mouth under the chin and push them together they will almost touch each other with tissue in between. ( try this for yourself to see what you need to do.) Rich can do this himself while you grab the gauze and surgicell.

2. Take 1 surgicell gauze and fold it in quarters, take 2, 2x2 gauze and put them on top of the surgicell. Place them over the bleed under the tongue, surgicell side down, reposition Rich's fingers on top of the gauze behind the bleed, squeeze finger and thumb together again. Use two fingers if you can.

3. Keep his head above his heart and meet the paramedics or wait until they arrive at your location. Use as much gauze on top of the surgicell with as much pressure as can be placed.

Carry the gauze and surgicell with you everywhere. This may be helpful, and may prevent the worst. It is by no means a tried and tested procedure. It is what I would do under the circumstances.

My prayers are for Rich and you,

Mike

Thank you Mike for the offer of Surgicell. That is what hospice is providing so we do have it available. What you sugested except for the 911 is what they suggested for any more vascular bleeds he may have.
Thank you for the prayers all of you