Chad’s health is declining rather quickly. He has had two falls in three days and has lost all mobility in his right arm and hand. His right leg drags when he walks and he has an increasingly hard time focusing on conversations. He has a difficult time with words; and he struggles to find the right ones to get his point across. Which frustrates him and makes him say hurtful things. And that frustrates me. When I can’t figure out what he wants, he gets upset and just says, “nevermind.”
I am trying – so hard!
Hospice brought a cane a few weeks ago, and he uses it when he remembers it. Our oldest daughter is quick to point it out to him and will tell him he needs it or will just bring it to him. He uses it for the most part.
He needs help getting dressed and undressed. Sometimes he lets me help. Other times, he just gives up and goes back to bed.
Due to the loss of function with his right hand, meal times are messy. He started using his fingers to eat. He refused to use his left hand for a few days, but has finally given in. Meals are still messy, but at least he is trying to use what function he has left.
Today, I came home to find him eating something in his chair. I couldn’t tell what it was, and he insisted it was cream of wheat. My mom was here with him when I ran some errands — and she told me a horrifying story.
She found a pan on the stove, cooking and burning. When she asked him about it, he said it was cream of wheat and it needed to cook longer. Actually, it was pancake mix. And the pancake “batter” (he hadn’t even mixed it, just threw it in the pan with some water) was bubbling away and burning. He had forgotten he had started it and he didn’t even know what it was that he was making.
He could have caused a fire.
I, simply, cannot leave him alone anymore.
He says such hurtful things and I try so hard to remind myself that it’s not him; it’s the tumor. It’s the steroids. It’s the medicine. It’s the stress.
How do you all deal with the emotional burden of trying to help someone that tells you they don’t want your help? That they don’t need your help? Because, clearly, he does.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Sharon
Oh, Skye. My heart hurts for you. You will defintely be in my prayers. My husband has neurological disease, and I can identify at least somewhat with your feelings. My husband’s symptoms are going downhill slower than your husband’s,however.
You are right in trying to not take the hurtful comments personally. That is easier said than done, however. Again, you are in my prayers.
G-J
Oh, Skye, I’m so sorry for all that you are going through. I wish I knew the right thing to say, but I know there isn’t any such thing. I know that being caregiver for a spouse and a parent are not the same thing, but I went through similar things with my Dad where he needed the help and didn’t want it.
Like Sharon said, it is easier said than done to try not to take the mean comments personally. Know that we are all here for you and that you can vent to us any time.
Donna Ryan
Skye….my sadness goes out to you….
My nieces husband is 33 and it seems through some medical exams that he has a carcinoid tumor somewhere lurking in his body. They are at the early stages so we are not quite sure where it is or how serious yet…but we are trying to be hopeful. Your posts give me so much strength however. I just read your latest post to my husband out loud and we both said you truly are an amazing and remarkable person. It is so difficult to be a caregiver of someone you love so much and then constantly be abused. the world automatically takes the side of the caree…well, they are sick, they dont want to be this way, they dont have it easy either….etc..etc….all the things we all know….but you also deserve a huge hug and support. You have it here with all of us. I hope I wont need advise to help my niece raise her five year old daughter and almost one year old son…I hope….I pray….but knowing you are in this group is also a help to me…I know that isnt comforting right now…butyou do mean a lot to me!!
Denise
Oh, Skye, I’m so sorry! It’s upsetting enough and then to have feel like you’re engaged in a battle of the wills… UGH! It’s okay he doesn’t understand he needs help. It’s okay you help. In other words, walk around (or duck under or climb over) the battle. I hope the visit with your sister-in-law was okay. We think of you and hope so much you know comfort in your days. Please keep us posted!
Bette
Skye,
I am so sorry. You are very smart to remind yourself that it is your husband’s disease talking. He is so blessed to have you, your support, and strength. You are in my thoughts and prayers.
Regina
My heart goes out to you Skye. I know exactly what you are going through. My husband yells more than talks and I have been called every name in the book. If patience is truly a virtue than I am the epitome of virtuosity (word?) LOL My tale is long and boring and my sweet caring nature is wearing thin…it’s been almost 2 years dealing with his medical problems and never have I heard the words thank you. Sorry, don’t want to be a drag but wanted to let you know that hope and prayers are being sent your way