Wednesday, November 11, 2009

Family response

My prior post is the text of an email that I sent to H's family to give them a sense of where he is.

Of the 3 recipients (two sisters and parents), only one sister replied:

"...that is sad news, very sad indeed. Thanks for the update. I know some people who can help with H's caregiving…just let me know and I'll fwd their contact information."

Trouble is that a full-time (or even part-time) caregiver is waaay more than I can afford ($800 - $1,000/week) and that wasn't really the point of my email. (I do worry about that as H declines further that I won't be able to keep him at home…even tho' part of me would just like him to leave.)

Really, all I wanted to do was to give the family a sense of where H is. Interesting to me that I got only one response and that was to get some "hired help.

I was hoping to hear that they all will spend as much time with H as they can while they can.

Thursday, November 05, 2009

Thought you should know

A few days ago, I sent an email to H's family to tell them about my worries and to give them some idea about what is going on.

Here's the text of that email (kinda long, apologies). In a future post, I'll give y'all a rundown of their reply.

Beloved family,

I hope that I have all your correct email addresses here….

I wanted to give you all a private update on how H is doing. Please don’t forward this email to H as I don’t want to have him worry unnecessarily or hurt his feelings.

Please don't worry, I'm not wanting to "put him somewhere" right now, nor is he having any acute health issues right now. And, I'm not trying to frighten you or request any action from you.

I'm telling you this because I know that we all love H and you need to know what is happening.

What I am seeing is a continuation and acceleration of his general physical and mental decline, especially compared to a year ago. Many of our long-time friends see this too and have told me their stories.

His HIV viral load has been down this year (in spite of now being off his anti-virals) and his T-cell count is normal for a man his age (highest that it's been in a decade or more). Usually, when his viral load is down, he does better physically and mentally, but not this time. He'll get another blood test next month.

His doctor has told me that they can control his virus, but his dementia will get worse. And it is:

-He can't operate the washing machine any more…he gets confused by the dial and what to do. We've had this washer for > 10 years now.
-He can't operate the over timer anymore…we've had this oven for almost 20 years.
-He will sit and mutter to himself for several minutes at a time, shaking…almost like an autistic kid.
-He can hardly make a sandwich or a bowl of cereal for himself anymore
-His short term memory is shot and he will ask me the same question 10 times a day
-He is having a harder and harder time keeping up with even a simple conversation or TV show.
-He is having much more trouble walking and balancing, even with his cane
-He can't take his parrot out and about anymore…he's too tired, too lame and afraid to leave the house
-And on and on…

Now, some of these things (and worse) have happened before, but what is so striking is the change in the past year. And that decline is accelerating. Even though he does have his lucid and cogent moments, he is becoming physically lamer and cognitively much slower. And, I don't know how else to describe it, but his personality is fading and his emotional range is shrinking.

Doctors tell me that he is in a decline, where we will lose him "inch by inch," maybe faster. The can't predict his death (besides, we've all heard those predictions many times), but they do say that he is heading towards "general disability," which means the inability to do anything. Much like what happens to Alzheimer's patients.

Based on what I'm seeing and what the doctors tell me, the reality of it is that H is not going to get any better than he is right now and he will most certainly continue to decline.

My recommendation to all of you is to find a way to spend as much time with H as you can within the next year or so.

Much love,