Caregivers rock!

Young, old, rich, poor, wherever you're from or whatever you've done, caregiving is a kinship. Never be afraid to ask another caregiver for help. There is a Caregivers forum at the ALS Forums and in many other channels.

You will have good days and bad. You will never get enough sleep or burn off enough stress. But you are doing something uniquely important, that will help sustain you through the loss and memories of your PALS. So keep it real, and don't try for perfect.

ALS takes a lot of energy from the person who has it, and often empathy is depleted as well. Sometimes it can be hard for them to accept and acknowledge the amount and kind of help that you provide. So on their behalf, thank you.

Still, every day is a struggle in some way, and you may wonder…

Will I ever not be depressed?
First, don't self-medicate with drink or drugs or shrooms to "forget." We do much better when we own our feelings and the facts -among them that your PALS has a fatal disease. When you try to drown your sorrows, they only pop up all the stronger.

Many CALS report feeling like the non-ALS parts of their lives have become a "waste of time." This can be understandable depression, but it might also be something that you still want to do with or say to PALS. Get counseling and/or meds if you need them to be present, but equally, don't duck out or leave too late whatever you need to say or do (which could include legal stuff like a will and advance directive. You'll regret it for the rest of your life.

You haven't lost any of yourself. It's on loan to your PALS, and it's an investment that you'll never lose on. Don't look forward to what gets worse. Look at your PALS and you today, in the present, and whatever happiness you can still help them have. It could be adjusting the position of a mounted phone or finding a better elbow pad for use in a wheelchair. It's real. It helps. It's needed. And a lot of the time, it's on you.

A "brave face" or "acting as if" is wasted energy that serves no one. You can't run from yourself, or reality. Doing things that help someone is the real bravery. You don't get trophies or extra love. But you get the security of knowing long after their death that you did your best.

Why are they mean/disinterested/cruel/demanding?
Most cognitive impairment in ALS doesn't reach full frontotemporal dementia (FTD), a kind of dementia that is seen in illnesses besides ALS as well.

But many PALS change cognitively and behaviorally as ALS progresses. Depression, anxiety, loss of empathy (the ability to see your point of view and feel with you), reduced executive function (decision-making), and memory are common, along with at least periods of just not seeming to care (apathy).

Besides changes in the brain and biochemistry, the lack of energy takes its toll even in people who seem lively. There's not always enough left for functioning mentally in the same way. That's one reason that a whole food tube formula or real food blending is so important for people no longer on regular diets -- the brain really needs the best fuel available.

Besides that, imagine the sheer ongoing horror of total dependence in a physical sense. There pretty much has to be some disassociation to keep any grip at all. That's one reason I recommend that all CALS, before using a floor lift, get into the sling and be transferred themselves; be pushed in a wheelchair before they operate one, etc. It's just a taste of what the PALS endures, but it's something.

Many P/CALS opt out of neuropsychiatric tracking, though, because there is really no point apart from symptomatic mood disorder treatment. And for those affected by PBA, Nuedexta is on most formularies now and does help many.

If your PALS is not in distress about the psych aspects of her disease, I would disengage with her on the issues when she distresses you, if that makes sense, as you would deal with anyone that you can't help cognitively. You can still be honest to the extent of saying that you don't want to talk about X or you're going to disregard Y. You're still you. You're lending your best self, but not your mind.

Don't cry or punch your pillow every night. Get more/better drugs, more/better therapy, even if by text, text with a friend or family, do something to make your own life better. Grab your own mask first, as they say.