General disability

A long-time friend is now helping me with the garden. She has know H and I for about 20 years or so. Now, she's over a few times a month and is able to spend some time visiting with H and me.

While I was visiting with her yesterday, she told me how she had seen H decline over the past year. She characterized it as significant mental slowness, difficulty in getting around, lack of ability to track with a simple conversation, and just overall "fading" of his personality.

She says that "if he continues declining at this rate, I don't see how he can be at home for much longer…likely he'll only live a year or two more."

I can see the same things also (and I do think that his tether is short), but I'm so close that I don't notice the gradual decline and I mostly focus on the significant events: confusion over the washing machine dial, inability to make a bowl of cereal, major short-term memory issues, muttering to himself and shaking, and trouble setting the oven timer.

While I'm away next week, a series of our friends and family will be spending time with H. I will check in with them after I'm back to get their observations.

But, I know what they're going to all say and I do appreciate their counsel. That doesn't change my reality any, but does help me with needed perspective.

Reality is that, given his series of CNS & dementia issues, he is heading towards general disability, a disability where he can't hardly do anything, eventually resulting in him being bed-ridden.

If you know what I mean

I get a phone call from a long-time friend's wife yesterday. H and I have know these folks for at least a decade now. I've been invited to a BBQ on the 4th ("we wanted to invite you...") and I can bring "…a guest of your choice…anyone you want to…if you know what I mean."

I said, "Hmmmm, I'm not certain that I do, but H is taking a nap right now, so let me talk with H and I'll give you a call back."

Was kind of taken aback that H wasn't explicitly invited, nee, he was explicitly not invited. This friend's wife also told me some years ago that she didn't like H being around her (much younger then) kids, that he was "too weird."

And when this woman's husband, my friend, was here a week or so ago for a visit, he pretty much ignored H or at the very least, was patronizing and bossy with him.

While I can't claim that I am always the most patient with H, what I can say is that this behavior is not OK. It is not OK to exclude H from an invite and it is not OK to be rude to him.

I think that part of the reason this bothers me so much is that I've already moved on in my head in many ways, yet I still go through the motions of doing the right thing with H. I don't actively exclude him, I try to listen, I try to be supportive.

Yet, I see others doing what I only dream of: H is now yesterday's news. Next.

Once again, the drama is about H. It's always about him; it always is.

Hey, come take a look at this

A good friend of ours, M, came over for a visit and dinner tonight. She has known H and me since the early 80's. It was so wonderful to spend an evening with her.

H felt too ill to be up for very long and went to take a nap for a few hours.

M and I talked about where H is and what has been going on for the past few months. I assumed that H had told her what was going on, but she had no idea what was happening with the whole placement issue, his family's reaction, and my break from work. She did say that H had told her that he hadn't been feeling all that well recently (not news).

I really needed her support after being kicked (while down) by H's family, and, since I've known her for a long time, I trust her judgment. She and H had spent a fair amount of time together recently and she had stories about some odd behavior and some even odder delusions. She expressed a lot of concern about H's decline the past year or so. Yup, I see it too. I'm worried and sad too.

I was talking with her about H's family reactions to placement and all that, about how they think he is fine and able to live on his own. I was relieved to hear her say, "But he is dying, they just don't see it. It's just taking awhile and they don't see him reguarly and he tells them that he is OK, but we know he's not."

Yes. Thank you so much for your honesty and especially your courage, my friend.

I talked with her about my struggles to handle this with love for H and gather his family around him. But instead I get denial and guilt. So, I told her that instead of me worrying about his family anymore, I'm just going to focus on me and doing the right thing for H. They will either come around or not.

She had a great idea: since his family is unaware of how he really is doing all of the time, I should send out a weekly or so email that briefly outlines how he is doing. How much he's been sleeping, how he's functioning, and when necessary, lab results, any special events that happen.

I'm going to try this, but I have to hard sell this to myself as just trying to improve communication with his family…even tho' I'm still steamed at them. M's take is that after a few months of this email newsletter, their denial may begin to crack. Who knows.

I've written about forgiveness being essential…and here is a lesson for me too. I need to forgive them for their anger, guilt, and fear (I have these too) and help them see what is happening with H. And to get them to the table to talk about where H really is and how to be there for him as he makes this transition, whenever that happens.