Yeah yeah yeah, I know. I know everything. I do! About feelings, anyways. If I keep the wall up, I can't experience any true feelings, good or bad. If I keep the wall up, I eat or drink or overindulge in some way that isn't really good for me.
But you know what? I need this wall right now. I cannot, I CANNOT feel this grief, this sadness, this frustration and loneliness.
I wish a part of me was awesome enough to put these feelings in to working out or taking walks or gardening. Something more constructive. At times, I do... I rally and get it together. What choice do you have? Feeling not awesome all the time gets old. Plus I have this thing I have to do which is not letting my sick husband feel any worse by my depression.
The thing is, apparently I have. OMG. I can't stand it. He said to me, in this heartbreaking way, that he hates being a burden. It takes my breath away to imagine how he feels. I just can't.
I dismissed his feelings with "you're not a burden" and left it at that. Which, on my part, was not the best thing to do. One of those feelings lessons I've learned is YOU GET TO FEEL WHAT YOU FEEL. Me telling him he's not a burden negates his feelings. I didn't let him talk about it. I shut him down. As if me saying "no you're not" makes him feel instantly better.
Tonight, I talked to him about it. He did admit that sometimes I say things that hurt his feelings. My heart cracks in a million pieces thinking this. Words are so hurtful. Sometimes they fly out of my mouth before I realize what I've said. I do try so hard to stay quiet, to not let him see my grief or frustration. Clearly, I haven't been doing a great job.
We have home health care now and that's different. Ed begrudgingly accepts that I need help. More for my mental state than physical. I think he's a little hurt that I don't want to spend 24/7 with him. I mean, he's stuck in this body 24/7. He doesn't get to go anywhere. He doesn't get any relief from ALS. Why should I??? The home health care aid gets here and I pretty much run out the door. He sits here for 4 hours with a stranger.
Guilt is a terrible thing.
Even writing this isn't helping me sort things out. I think I'll just go hang out with him for a while and hope we both fall asleep early.
As an RN of 38 years who took care of my parents, one who was bedridden the last 12 months of the 29 months that she was pretty much homebound but for doctor visits, and did it all myself, I am very impressed with you and your tenacity and fierce love for your darling. But ALS is a real hard diagnosis. So much physical labor, gradual loss, fadeout--on both sides. I hope I do not offend saying this---but patient care was much easier for me (including the ALS patient I cared for) when Mama became bedridden. She herself had been an RN of the gods overseas during WWII and knew how hard life could be in every possible way. And this fiercely independent woman was so gracious gradually giving up her independence bit by bit to me. We were a team, just like you have been. When it became too dangerous moving her to the potty chair, and sometimes messy, as well (she sometimes had urgency), my 210-pound mother thought it best to do diapers. It was not embarrassing or infantilizing one bit. She could instantly be kept clean, dry, and the condition of the skin checked. I would always rub lotion on her back and bottom and she liked that so much! I am proud to say that she had zero skin breakdowns after a year in a regular bed. A high-quality hospital bed he can sit up in every day is a help to the lungs, and the legs can be raised--changing positions is good. And bathing and bedmaking is so much easier in a bed. Is Ed on Hospice? They can be a godsend, just do your research. You need respite, and you need physical safety for yourself, or things could get disastrous.Is Ed on board with getting more help for YOU? Does he still like to go outside in his chair? That can continue as long as you are well experienced with the Hoyer. But it scared me reading about Ed's balance at bathroom time and increased likelihood of falling and injuring you,too.If it is at all possible, I hope you can beef up your team of people and equipment. I know your family is different from mine. I feel for you and have been getting flashbacks of my times, too. But I was so proud to be there. I am so in awe of how much you are doing by yourself; I am just concerned for your safety mentally as well as physically. If any ideas sound possible, the right time will come. Just come right out and say what you are thinking and what you need. Luther is not a burden on you so to speak. Life is burdens every day. Luther is far more burdened himself than a burden to you. He cannot help it. The crux of the matter is, "Would you change places?" You yourself are greatly burdened by his disease, which is kind of a separate entity.It's a product of his body that has to be dealt with, not a huge boulder he wants to dump. I only wish I didn't live in AL so I could take some hunks of that boulder for you! You are very inspiring and I look for your blog because it is very uplifting and very honest. Thank you for writing.
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