Many people know of my sweet husband, Bill Fox.  Many probably don’t know that Bill has Alzheimer’s (actually, he has Lewy Body disease due to his extreme hallucinations). The most heartbreaking thing I’ve ever had to do was to find a place for Bill to live other than at home. Every day I take him his favorite foods, his favorite songs, and talk about his favorite stories. And every day I lose a little more of him. It’s been difficult to go through this process, but one thing that my brother Micah said has given me such comfort. He believes that people who have dementia are simply going in and out of this life and the next — going back and forth — preparing for the transition; meeting those who have gone on ahead and making sure that those left behind are doing okay. I told this to Bill and he said he thought that was true. He often visits his mother and brothers, now. He has moments of clarity, yes, and when he comes back, he tells me that he hopes I find someone who is like him, only taller. The most heartwarming and heartsaving thing during this time has been me finding Mark — a man who has single handedly saved my life and helped me to create art. Where Bill taught me to write, Mark taught me to paint. And Mark is tall — just as Bill hoped he would be.
I read this article (see below) about a woman who was in the same position. She is my hero now. Just as Mark is my hero. And just as Billy is my hero.
Billy will always be my hero. Nobody will ever take his place — ever.


An update:

So many messages came from the above Facebook post, that it seems a blog posting might be in order.

My philosophy is that everyone should be able to live their lives to the very end in their own homes.  I’ve helped my great aunt, my uncle and my beloved Mom all die at home.   So for me to jump to the other side of the fence when it comes to dementia must mean something.  That either I’m a slacker bad person or I’m realistic.  Probably there’s a little truth to both.  Anyway,  I believe in home care!  But dementia really isn’t a disease where one should brave the care giving all by themselves.  Not for a moment would someone who really loves you want you to give up your life to do what needs to be done to keep them functioning. Would they want for you to put them in a nursing home?  Hell no!  Of course not.  Nobody wants that.  But neither do they want you to suffer through a life of sadness and such hard work, watching them lose themselves, their dignity, your name.

In making my decision, I defaulted to looking at what I would want for my daughter, if my daughter were in this position.  Would I want her to change my diapers and watch me forget who she was? Nope. I’d want her to go on living. And to feel life. And to visit me if it wasn’t too hard on her. And to bring me the things to eat that I couldn’t get at an institution (fresh watermelon and cantaloupe, pimento cheese sandwiches and boiled peanuts).  I’d want her to visit me IF it wasn’t too hard on her—and I’d like for her to consciously make her decision on what “too hard on her” might mean, taking into account 1) the consequences of the guilt she might face later if she did not visit me (not that I would want this for her, either, but she’d probably feel this heavily; and in visiting me, she’d be able to counterbalance that guilt with the comfort that she’d not completely abandoned me), and 2.) I’d want her to remember that any time she is kind to someone, be it her mother or another patient in need, she gets major karma feathers in her cap—or for those who don’t believe in karma, let’s just say that she gets to feel proud of herself right then and there on the spot for having been a good human being.

If I had to do it all over again, I’d have put Bill into an assisted living facility earlier— and for multiple reasons. 1.) It is much easier to get into a top notch nursing home, e.g., long term facility, if the patient first lives in an assisted living facility, then they can transfer into a nicer nursing home.  2.) The patient becomes involved in a scheduled routine that helps them retain some mental balance… and they are taught how to relearn things that they lose along the way, such as how to dress themselves again, etc.  Nursing homes suck, but they don’t all suck as much as we think if we take the time to visit them, get to know the people who work there, walk the halls at odd hours to see what happens when you aren’t normally around. At first we think that putting someone in a nursing home is a the worst solution. But the thing is, when a patient becomes so demented, they’re mostly living in their head anyway and I’m not so sure the yuck stuff we see is what a patient necessarily perceives.

What a patient needs and what we need are the same — yet different.  We both need need comfort, safety and the feeling of being loved.  But we need to live, while they need to work on their transition into the next life.

Assume there will be — and be prepared to take on — guilt and shame no matter what your decision (to keep your loved one at home or to put them in a long term facility). But the guilt will always be worse when making the decision to remove a person from home.  Be prepared to think that the facility sucks and that you suck and that life sucks. But ride the waves through the highest, roughest tides, and within 2-3 months, you’ll both get to a better place.

And yes, there will be pleading from them to return home.  And yes, your heart will die a million impossible times, and you’ll forget how to breathe a million more when you have to tell them no, they have to stay.  This will happen daily for a while, and then it will come and go.  But this is the time when they need you to be strong for the both of you.  This will be the time when they’ll need you to show your face and love to them, daily, whenever possible.  If they see you—if they know that they’ll get to see you the next day—that will mean everything to them.   And if you’ve had children, you’ll remember how it feels to be someone’s everything all over again.  In that sense, this can be an amazing time.  In that sense, putting someone in a nursing home is a sweeter way for you to give them your all for a little quality time each day — rather than to be ragged out, tired, frustrated, feeling alone and unlovely 24 hours a day, seven days a week.


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