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

Julie,

Well, I'm glad you are getting good advice. I hope you never have to use it. That was my best opinion, glad to see I wasn't off the mark. I guess paying attention in anatomy class was helpful.

Blessings to you all,

Mike

Hi Julie and Mike

time difference means i lost track of the thread after i went to bed at 2.30 am.Glad you have got some practical advice Julie and hope you never ever have to try and put it into practise.


love and warmest wishes liz

Julie,
DO NOT CALL 911! They are required, by US law, to take heroic life saving measures! Your hospice people should be guiding you through this and should have given you specific instructions on this issue. His advanced directives and DNR orders should be keep readily available. My hospice people told me to keep them on the refrigerator so they were easy to locate in a panic situation. Even with these, the 911 EMT's may ignore them.

Liz's post was truly inspired and she just went through this traumatizing event. Her advice is absolutely accurate.

He may need to be moved to a hospice facility so that you can be truly be a family member and not part of the care team. Would it be possible to get a full time nurse (or even team of caregivers)?

I am so sorry that you are faced with this and will keep you both in my prayers as you face this phase of the journey.

Gary
Your advice on 911 is spot on, (like our 999) But if Julie is on her own and this happens she needs someone who will respond quickly to help her deal with this. No way should she be in the postion of dealing with this on her own
Sunshine.. love and hugs
Helen

In the US the typical protocol is to call the hospice nurse and they come right over.

Thanks for the tip about the 911. I was concerned about that but wasn't sure.As I stated before the doctor said only a surgeon might be able to stop it and if they did it would be very temporary. I think he said to rush him to the hospital as a means of keeping us busy. He is well aware of how far the hospital is
Hospice would be here as soon as possible if I needed them but they do not provide 24 hour care, and really Rich doesn't need it. He is alert, orientated, and capable of most of his adls by himself. I think I have mentioned before very stubburn. Today we went to a car show with his kids and grandkids. I was quietly packing up dark towels and gauze and such to take and he stated we were all going over board. Denial isn't always bad is it?
Thanks everyone
Julie

I am being very cautious here Julie,because i am not in possession of all or really any of the facts in Riches case.
Robin was alert and able to do for himself right up to the minute he fell asleep really,so please dont be overly influenced by his apparent capabilities.
Things change so rapidly it is breathtaking,so dont lower your guard,and the minute you feel anything is different,even the most innocuos silly remark he may make,then look at your care plan again.

The one thing i have to say and i dont want or mean to be insensitiveis is that at some point Rich's stubborness must be put on the back burner and your want and needs made clear to him and the care staff.You have a right to some choices after all you are shouldering the lions share of responsibility.

I thank god every day that Robins attitude changed so much once he was in full time hospice care,and the knowledge that he had other people to take the burden of comfort and pain control over, made him more able to see how i was coping and feeling and bring that into his equation of how to deal with everything.
I also had the luxury of a back up from the staff who always spent time talking to me and Robin ,and were able to discuss matters with him that he was being difficult about.Compromises were more easily reached with gentle explanations from the staff and i was relieved not to have to be the one constantly passing on information he really didnt want to hear,and almost blamed me for telling him.

I think about you both daily and will never forget your first PM to me when i joined this group it made me realise i wasnt the only one battling with more than one demon.


love liz

Dear Julie and Rich,
My prayers are with you.
Donna

Julie, my heart goes out to you in this impossible time. You and Rich are in our prayers.

Julie hows things?

No change in his phyiscal condition. I sent you an e-mail.
Again thanks everyone for your prayers:)
Julie

Hey, JulieKay, Just thinking about you today. Take care, Amy in the Ozarks