PSP vs. dementia

It's a battle to the finish, with Mom's PSP symptoms making a blast of a comeback.  But wait - dementia, which trailed for a few months, has suddenly made a leap ahead and looks like it will overtake the PSP once and for all.

Despite the wonderful advances due to the amantadine, mom is once more losing her balance and is very shaky sitting and standing; she has tremors while trying to eat again.  We knew that the good effects of amantadine might be only temporary, but we didn't even get the usual six months.

But it's the dementia that's taken over. The doctor who saw mom, the PSP guru in New Jersey, said that Mom did have a lot of frontal lobe symptoms for a PSP patient. Sadly, these seem seem to be coming to the foreground. She's increasingly forgetful and confused; I sent flowers to the AL (assisted living, for you newbies) home, and she asked the proprietor, wonderingly, "Who sent me flowers?"  She's unable to dress herself any more without prompting, nor to bathe.

As I'm the only person who has ever sent her flowers, I'm thinking she may not, in fact, have remembered at that moment that she had a family. My dad thinks that in a few months this will be so, and I told him I sure as hell hoped so.  I mean, she's happy, she's caring and well cared for, she enjoys food and game shows and walks and books and Swiffering, all the while forgetting that she's terminally ill and a prisoner in someone else's establishment - what more could we ask than that she forget?

A home for Mom

Mom will go into assisted living next Monday.

This has come much faster than we thought it would, for a number of reasons. First, she's declined quite a bit; while here two weeks ago, she fell three times in 10 days, each time getting up from the toilet. These falls were minor, except for the last, which left a brush burn and a bruise and a wound on my soul.  You think you're watching, but you get bored and go find a bed to make, and it happens that quickly.

She also seems far less aware of her surroundings, and is more confused; while at our traditional TJ Maxx outing, she picked out two of the same thing to try on, and insisted on stopping several times to button clothing on store displays.

But the most pressing reason is that Dad is sick. He has cirrhosis of the liver. Apparently he has a hereditary disorder that causes iron to build up in the body and destroy essential organs. We're not sure how much liver function he has left, but we spent much of Memorial Day weekend in the hospital dealing with side effects.  He's weak, depressed, and will need months of treatments.  It was hard enough for him to take care of both Mom and himself, and his new bachelor skills don't include cooking and eating well and endless doctor visits.  I hope he learns quickly.

One good note is that Mom is relatively resigned to the change, and likes the home, which is new, clean and has another patient her age, bizarrely enough. PSP is said to rob victims of their emotions, which is a blessing in this case. It's a small group home, which I hope will give her more freedom to roam, to help with cleaning, which she loves, and for the staff to learn her idiosyncrasies. I hope they do; I'm a three-hour plane ride away. We simply couldn't afford the kind of care she needs in my area.  (I toured many places and did research for a solid week; if anyone needs any kind of advice about assisted living, feel free to e-mail me, and I'll pass on what I've learned.)

There is a special kind of agony to being far away and hence fairly helpless, but I'll be spending most of my summer with the folks, patient kids trailing (who are fairly happy anyway if they can swim and read), helping Mom get settled and Dad get various tests and biopsies.  We're not moving; I won't do that to my kids.

My friend J. asked me how in the world I was coping sans medication. I simply don't know.  One foot in front of the other. Too many people depend on me for me to break down. I'm taking care of myself, too, because I do have the luxury of getting out for yoga or a run now that the folks are gone.  But I did ask J. to pray for me, and I don't believe in God.  I figure we can use help from any possible angle.