Hi Cheryl,

Your story is a gut wrenching and heart breaking one that is far too common with oral cancer. As I read it, I weep for you and everyone, patient and caregiver alike, associated with this horrific disease. I might say things that seem harsh from the perspective of a wounded heart like your is right now. You cannot die with this disease and what it is doing to your husband. There is no question what you have done is absolutely miraculous. Likewise, you should be doing the same for yourself. Here are some things to consider.

At this point your husband should be on social security disability and receiving Medicare benefits. Medicare provides home health care services that include spiritual counseling for both of you, an aide to help your husband and give you brief periods of respite. This is so critical for your mental and physical health. It is amazing what you have done for this long and there is nothing wrong with getting the help you need just as you are doing for your husband. Also, there are organizations out there that can help find housecleaning services so you can get some relief there too. The requirements are "homebound" status and you can go to the grocery, church and getting your hair done plus any treatment related excursions. It sounds like that applies to your husband. If you need any help with researching or setting up these services you can Private Message me and I will do anything possible to assist. This includes disability and Medicare if your husband has these benefits or wishes to. In his current state, there are some fast track ways to get this done expeditiously.

As far as family and friends, many of us see one extreme or another. Some will be there no matter what but some will not be there...no matter what. Seek out who you consider your very best friend or friends. Pick some time you can either meet them outside of your house in a car even or when your husband is sleeping and pour your heart out. They love you still but they don't know what to do. They see the intensity of your life but the way you describe your husband's attitude towards "outside" help is something that comes across loud and clear and I promise they sense and feel this when they are around him. It is human nature. It is uncomfortable for them, too, because they don't want to upset your husband or cause tension between the two of you. This is a very critical point...you must take care of yourself first, especially right now. This will only help your soul but also recharge you to be a better caregiver.

I am so sorry to hear your story. It is far too common and the "village" needs to rally around YOU just as the medical com I it is rallying around your husband. There are thousands, literally, here that will give you any support, comfort or anything you need. It won't be the same as before all this and it won't be everything you need but it will help some. You can pour your heart out without reservation. Drain the reservoir of stress that has to be built up in you. That is not good.

In a way I am glad your husband is still fighting. Just the fact he has endured all till now and is on continuous chemo shows the incredible resolve and determination he has. You are the main reason he is fighting still. Between his episodes of trying to demand his old life through some of his actions and maintaining a safe environment for him is going to be a constant balancing act. The trauma of finding him in pools of blood and breaking his back is nothing you should be subjected to over and over. It is bordering on cruel. I choose this word carefully because on some level it is intentionally inflicted on you and this is something you do not deserve with all you have already gone through and the perspective of this selfishness in the part of your husband serves nobody in a good way. As hard as this is, his terminal condition does not mean you have to do far beyond normal expectations. Imprisoning you in this hell doesn't make it go away and only keeps layering on stress and guilt for you and that is not good for anyone.

You, Cheryl, are the real amazement in all this. Few can do even a fraction of what you do and for this long. Please take little snippets of peace and calm for you. You are reaching out and asking for help. Now, put some action with this and get your world in all this into a more realistic but compassionate mode so you can find solace but still be there for your husband. We could all wish to have someone that loves us as much as your actions indicate and willing to literally kill themselves for us. Your husband is so fortunate to have that. At this point, however, the benefit of all you do probably isn't providing as much as it is taking for you.

I apologize if this is too direct or harsh but quite frankly, I worry about you. The mind, body and soul can only take so much and no matter who you are, the intensity of all this for so long is taking a toll on you. Please take care of yourself as much as possible. I don't know your personal beliefs but churches are a great resource as well. Also, there are support organizations like SPOHNC that can assign a male survivor to your husband to help him maneuver through some of this while you get some respite.

As I said, my heart weeps for you. You are an incredible lady.