Under Construction - MHWA Retreat

Although I suspect this question was really about those capable that don't take care of themselves, I'm going to answer it in a way that is fitting to my current life situation and profession. As some of you may know, I work at a nursing and rehabilitation center, where I take care of those who are usually incapable of doing for themselves. Honestly, I did not take into consideration just how emotionally draining the profession can be. This might sound bad, but when it comes to the elderly who are in the winter of their years but have lived full lives, I am loving too, but I am not so upset quite as much by their outcomes. It is the younger ones who have not had a chance to experience a full life that hits me really hard.

For example, I have a patient who has Huntington's disease, who I will call T for anonymity purposes. He was diagnosed at age 33 and just recently celebrated his 39th birthday. For those of you who do not know anything about Huntington's disease, it is like having Alzheimer's disease, Parkinson's and ALS at the same time. Brain cells rapidly deteriorate, affecting motor skills and cognitive ability. In addition, those with Huntington's usually suffer from psychiatric disorders like major depression, insomnia, and delusions. Most often, those with Huntington's do not live more than 10 to 20 years past the onset of the disease. If they do not die from pneumonia, swallowing issues, or heart disease, their later outcome is total muscle atrophy and total loss of ability to speak.

T is at the point where he needs extensive assistance with his activities of daily living like dressing, brushing his teeth, bathing, etc. His muscles involuntarily jerk, which makes him a severe fall risk and he has to wear a helmet to protect his head. His language ability has already deteriorated to simple speech. As his caretaker, I try to have him do what he can himself. If not, then he will rapidly lose the ability. For example, we have sponge toothbrushes that are less of a danger for him. Still, I have to guide his hand so that he does not poke his eye. I'll encourage him to brush his own teeth, but have to coach him making sure he brushes the front, back, and top of them. Then I make sure he picks out his own clothes and participates in dressing himself, even though he needs some assistance from me.

T can not tell me his story, but I can read it in his ink. He is covered in tattoos. His back piece is a portrait of a woman and child that reads "in memory of." When I asked him who it was he said, "Wife...daughter." So, he has lost a lot in his life and now has this terminal outcome. It is heartbreaking.

T wants to be independent, but they want us to put incontinent briefs on him, rather than let him use the restroom, even though he is not incontinent. The result is that he holds his urine and waits until we put him to bed, then gets up when nobody is watching and attempts to use the toilet. Every morning when I arrive to work I find him in the bathroom with urine all around the toilet and bathroom wall. I have addressed this with the charge nurses several times. There has to be a solution, but they will not listen. Instead, they keep making us put briefs on him when he refuses to go to the bathroom in them. There has to be a way to allow him his independence with this. One would think we could teach him to sit at the toilet, rather than stand and give him a cushioned seat so that he does not bruise his behind when plopping down on it.

Another thing that is really upsetting me is that he's been there for two weeks and they have not involved him in any activities or physical therapy. Instead, I am told to keep him buckled in his wheelchair. Without cognitive and physical stimulation, he will rapidly deteriorate. If they do not start doing something to change this, I am considering reporting it anonymously so that it can be investigated by social services.

I've involved him in activities that his ink tells me he likes. For example, he's got a huge cross on his chest, so I know he is Christian. When there are church services, I bring him there in his chair to listen. Still, I've researched various cognitive therapies for those with Huntington's and there is a lot he should be doing. Due to the load that they give us CNAs I can't stop and do those with him, but our activities department can, yet they have not and it is pissing me off.

I've also told the charge nurses that he can unbuckle his chair and that is why he gets out of it when he is bored. When I am told to just leave him near the nurse's station buckled in his chair, if he doesn't eventually get bored and find his way out of it, he shows he's pissed by pulling his penis out of his briefs and pissing all over the floor. Plus, he's obviously got insomnia, because I am hearing from the graveyard people that he is getting out of his bed at night and they are finding him walking down the halls masturbating or pissing on the floor. Giving him physical and mental stimulation during the day seems like a common-sense solution to this.

Anyway, I know I've sort of expanded on the topic a bit, but it is how it applies to me at the moment.