The reality is ...

Thoughts from November 4, 2015

... unless you have walked this journey of dementia/Alzheimer's you have no idea how ugly this disease is.

You have never seen your loved one pee and poop on themselves and not be able to clean it up.

You have never seen your loved one have absolutely no interest in life, not even a little tiny bit.

You have never seen your loved one not want to eat, beginning to lose weight.

Disappearing right in front of your eyes.

You have never seen your spouse, day in and day out, go make his mom dinner every night, while super exhausted from working all day, because she won't eat otherwise.

You have never seen your spouse be so giving of himself to ensure his mom is safe and well cared for, as best she can be.

You have never seen your spouse tossing and turning, worrying day in and day out for "that phone call" because you know it's coming. You just don't know when.

You have never seen your spouse be attentive to his mom's needs, even if it means cleaning up the crap - literally.

There are no easy answers with this disease, this mean disease. What are you to do if your loved one wants to sleep all the time? If the care people tell you that you need your mom to see the doctor to get hospice involved? No, hospice does not mean death is right around the corner, hospice is for support and palliative care. The only way, in this situation, to have hospice involved is by going through the system - that means a doctor's visit and a referral, a home visit by hospice to assess the situation.

Do you think this will be an easy conversation to have with your mom's husband, who really doesn't totally grasp the reality that is happening right in front of his eyes?

This is not an easy conversation to have on any level with anyone.

The reality is death is the end. The reality is death is the ultimate peace. The reality is dementia/Alzheimer's is a slow death and you get to watch it happen, slowly, day by day, piece by piece.

It is enough to make you want to pull your hair out.

Being the family of an Alzheimer's individual - it is very isolative. Where do all your friends go? Do they just not know what to say or what to do? When all they really have to do is say - I am here for you, lean on me if you need to.

And what about family? Those that seem to care, yet they never ask, never.