aberwyn: (justice)
[personal profile] aberwyn
Sundays are the caregiver's day off. He tends to spend most of them in church. Can't argue with that.  After he leaves, I have sole care of Howard, which is generally okay, though there are always Moments.  At the best, the day is boring. At the worst, it's filled with grief.  Normally it tends toward that "not all that bad" mark on the inner meter.

The worst part about caring for someone you love who has this disease is remembering what they used to be like. At this stage, anyway, the physical work is no heavier than caring for someone with the flu.  On Sunday this time of year there is football on TV, which distracts him for hours at a time. He'll also nap, or sit and look at art books while listening to music.  We have dinner, and at moments we can joke and laugh. He has a few flashes of clarity. At times friends come over for a few hours and break the day up.

But oh my gods, all of you! Seeing what has happened to someone who was once witty, incredibly talented, full of quiet life -- that hurts. He now has trouble using a fork. Like a toddler has trouble. Think about that for a minute.  The very worst thing -- he still knows what is happening to him.  It's the hurting for him, not whatever I may feel, that really hurts.

Other days of the week offer long hours of work and distraction. Not Sundays.

Date: 2015-10-04 06:02 pm (UTC)
From: [identity profile] lizziebelle.livejournal.com
My heart aches for you both. I wish there was something I could do.

Date: 2015-10-04 06:58 pm (UTC)
madrobins: It's a meatloaf.  Dressed up like a bunny.  (Default)
From: [personal profile] madrobins
I know how hard this is for both of you. Whenever I can do something... but I suspect helping with errands or giving a lift doesn't touch that anguished core of loss. I'm so sorry.

Date: 2015-10-04 07:16 pm (UTC)
From: [identity profile] dancinghorse.livejournal.com
Oh, Kit. I'm listening, if that helps.

Date: 2015-10-04 08:03 pm (UTC)
From: [identity profile] branna.livejournal.com
Oh, Kit. I wish there were something I could say (other than that I understand what you mean all too well). It's awful to have to start grieving someone you love while they are still alive, but that they know what is happening (and that you know that they know) is beyond cruel.

Date: 2015-10-04 08:09 pm (UTC)
From: [identity profile] myownsatellite.livejournal.com
I wish there were something I/we could do that could help you and Howard.

Date: 2015-10-04 08:35 pm (UTC)
From: [identity profile] sartorias.livejournal.com
I am so sorry--this is so tough for you both.

Date: 2015-10-04 09:23 pm (UTC)
From: [identity profile] themis1.livejournal.com
It's so very difficult for everyone. We are going through it with my best friend's mother, who I have known over 40 years and who introduces me to people as her other daughter. I so sympathise with what you are dealing with. Many hugs.

Date: 2015-10-04 10:53 pm (UTC)
From: [identity profile] darcyjavanne.livejournal.com
Hugs! I can't begin to imagine how hard this is for you and Howard. I'm here. I care.

Date: 2015-10-05 02:32 pm (UTC)
From: [identity profile] mevennen.livejournal.com
I am so sorry. I wish I could help. I watched my grandmother go through this and it's vile.

Date: 2015-10-05 03:37 pm (UTC)
From: [identity profile] mizkit.livejournal.com
*hugs so much* I wish I could help in some way.

Date: 2015-10-05 05:38 pm (UTC)
From: [identity profile] wolfsilveroak.livejournal.com
Please remember to take care of yourself as well. To take time for *you*.

My mom and I would take several times a week, while my grandfather was going through late stages of Alzheimer's. She, my aunt and my grandmother were his only caretakers. It takes a toll.

Now, my mother in law has Early OnSet Alzheimer's. My father in law so far refuses to have help. I think though, slowly, he's realizing that he cannot do it all on his own.

It is very, very hard on the family. The person you know is gone, while they're still right in front of you. How do you say goodbye in a situation like that? So, so very hard.

For those saying they wished they could do something- in a way, you *are*. By being here, that's something. By listening, that's something. Quietly offering support, that's something.

If you need something more tangible, consider a donation to ALZ.org in the name of someone you know who's experiencing this horrible disease.
Edited Date: 2015-10-05 05:40 pm (UTC)

Date: 2015-10-06 01:55 am (UTC)
From: [identity profile] klwilliams.livejournal.com
This so sucks. Seeing him last weekend was hard. He's still in there, in bits. I also wonder what it's going to be like when I start fading, and can't walk or use a fork, and need diapers. That will be so hard for Chaz.

Date: 2015-10-06 03:34 am (UTC)
From: [identity profile] aberwyn.livejournal.com
Save money for a caregiver would be my thought. You remember what a wreck I was last year, before everyone yelled at me to get help, when I was trying to do everything, and getting sleep deprived. Even having the 4 hour a day guys made things much better.

But, more optimistically, there is a lot of research being done on your condition, with new drugs appearing and the like. I'm hoping hoping hoping that you never have to face that state.
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