Decisions, Decisions, Decisions

Things have been going smoothly for a while so I should not complain or get upset when we hit yet another bump in the road. Gregory has been very alert, engaged, talkative (although mumblish,) happy, whistling, singing, laughing, eating well, generally enjoying himself.

But with this high level of awareness, he has gotten resistive again when he needs to be changed (i.e. new paper pants after a pee and/or poop.) His regular day RCA (Resident Care Associate) has left to pursue a career as a nurse and we wish her luck. But with change comes readjustment and reassignement.

So it is not clear why Gregory has been having a difficult time lately with being changed. Is it the new people helping him? Is it that their approach/demeanor is different than what he is used to? Is it that his "meds" are slowly becoming less effective? Is it that there are three of them helping him because he has been harder to handle? Is it because he hates being treated like a baby who has messed his pants (he still seems to hate having to pee and/or poop on himself?) Is it because he is frightened when he has to be hoisted by machine and moved to bed? Is it because he cannot take directions and therefore is unable to help the RCA's change him. Is it because he is a big boy, weights 180+, is strong when he wants to be, and is dead weight?

Unfortunately Gregory cannot tell us so we are trying to see if we can figure out how to help him be less resistive. First, Manny will join the RCAs in the process again as a calming, reassuring face. For a while Manny stopped assisting in this way. By required procedure he cannot use the machine and cannot be one of the two required people in the room. But he is a calming influence and I am hopeful that will help.

There is the possibility that we will need to tweet the Risperdal a tiny bit. It worked to help him maintain his "calm" when he was previously resistive and if we can do that without diminishing his energy, engagement, focus, etc than so be it. Lieberman nursing staff is always very careful when even mentioning drugs and I trust them in their decisions (although as Power of Health Attorney I have the final word and they are supportive and informative as they include me in the decision making process.)

But what do you do when someone like Gregory, who needs to be cleaned up at least two or three times a day makes that difficult. The RCAs have informed the head nurse that G seems to be more resistive and that they are afraid to take him on permanently (now that the previous helper is gone) because he is so difficult at times that they worry for their own health and hurting their backs.

I cannot blame the RCA's as I know how hard it is to move him around and to get him to do what you want him to do since he does not take directions even when one at a time and when simple and easy (in our minds) to complete.

So I am feeling a little worried, say that I know it will all work out well, but am a little scared anyway, know that Lieberman has Gregory's best interests, but need to make yet another decision on his behalf. I hope it doesn't come down to "To Drug or Not To Drug, That is the Question." But if we have to can we do it carefully, and minimally.

Have I rambled enough? Maybe this will help me get some sleep tonight!




 

Today Was One of Those Days

My phone ring at 9 o'clock this morning. It was Manny saying he had hurt his foot and was unable to walk. He would not be able to help Gregory today. So I got dressed, had a quick breakfast sandwich, and went to visit Greg knowing I would be helping him with lunch, spending time, and then also helping him with dinner.

In some ways it felt like my day been ruined, in other ways I was excited about spending the entire day with Greg. When I arrived it Lieberman, Greg was already at the table in the dining room with his the food sitting in front of him. I don't think he was confused that Manny wasn't there and he was patiently waiting. He was very happy to see me, we hugged, and I gave him a kiss.

Gregory ate his lunch uneventfully. Table conversation with Batia and Martha was fun and a bit of crazy as usual. We went back to his room where I shaved him and we visited until it was time for his nap. While he was napping I left to run a few errands.

I arrived back from my errands to find Gregory's wing's "living area" filled with people listening to Sharon play the piano. This activity was not taking place in the usual place because two residents were in the final hours/days of their stay at Lieberman so keeping their wing more quiet and peaceful was in order.

Friend Pat had also just arrived and was in with Gregory when she had to leave so the aides could get Gregory up from his nap and into his wheelchair. I saw the aides beginning their task so I stayed out in the hall. Pat and I had visited for a while when the door to Gregory's room opened and one of the aides poked out to say Gregory was having a difficult time.

Both Pat and I went into the room to find Gregory arguing, screaming, swearing, flailing, and kind of being physical with the female aide. He had gripped her by the arm and kept pushing his teddy bear at her saying take this, take this. (Meaning take the teddy bear.) She was struggling with him, saying "I don't want the teddy bear." and finally loosened his grip on  her arm.

I got involved by announcing that I was there, everything was OK now, calm down, calm down. I hugged him. Held him. And struggled physically with him but only a little bit. I told the aides that I could handle it now and they left.

Gregory was still being verbal, shaking all over, and upset. He had me by the arm and each time I carefully pulled myself loose, he would grab me again. Eventually, smothered with kisses, and hugs, and love he did calm down. He was still shaking but by massaging his neck and back he was able to calm down.

Pat and I stayed with him until dinner and by then all difficulties had passed. Pat said goodbye as I took Gregory into the dining room. Dinner was uneventful and by 6:30 I said my goodbyes leaving him parked in front of the main TV with the other residents.

What caused this melt down? Don't know for sure but can surmise. Manny was absent. Gregory's nap had been earlier than usual and/or too long. The aide had put his pants on only half way up in case he peed and his legs felt constrained. Pat's visit ended abruptly when the aides arrived which upset him. Gregory's assigned aide is newer to him and therefore unfamiliar. Maybe he had a bad dream. Maybe the noise from the music out in the hall was confusing. Maybe he was frightened. Maybe he was inadvertently hurt by the lift. Maybe he wasn't in charge of what was going on and it was just the Alzheimer's. Maybe it was just a bad day.

Oh My Heart

Yesterday when I arrived to visit Gregory he was being changed by the aides. I didn't let him see me so as not to complicate the situation and waited in the hall until they were finished.

Changing Gregory's diaper (I hate using that word) is at most , when he cooperates, a difficult situation. He is tall, weights 180 lbs, and has to be moved to his bed using a hoyer lift. A sling is inserted behind his back and brought up around his legs. The ends of the sling are attached to the machine and he is lifted into the air, swung around parallel to the bed, and lowered into place.

Then the aides take off his pants (and often his shirt,) clean him up, and put on a new diaper. This is done by rolling him from one side to the other. The aides have to do all the work because he cannot roll himself. Then they put on new clothing, reattach the sling, lift and swing, lower him back into his wheel chair.

I would guess that this is not only a little embarrassing (although I think Gregory is used to it by now,) but uncomfortable and at times painful. Depending on Gregory's "state," it is also frightening for him to be dangling in the air and he becomes resistive, known to swear, kick, and/or struggle. The aides are kind and gentle and are able to "talk him down" but as I said, it is not an easy activity for Gregory or the aides.

That described, yesterday after he was back in his wheel chair, I came into the room. "Hi, its me!" But Gregory was still "recovering" from his ordeal and was unable to focus. I tried to put my face in his line of vision, continued announcing myself, but he was still unable to focus. I think that he was actually unaware that I had arrived.

Finally he did a double take, and I mean a double take like in the movies, and he was able to focus on me, realized who I was, and a large smile came over his face.

Here comes the title of this post: He looked into my eyes, with this oh so pleased look on his face, reached out towards me and said, "Oh, my heart!"

I melted.