On providing comfort

Lutheran comfort dogs. Photo via Religion News Service.
Lutheran comfort dogs. Photo via Religion News Service.

I spent much of the day in my father’s room at the nursing home today. I got word that a doctor ordered a sonogram  last night so I wanted to be there since the evening staff last night had, not surprisingly, zero idea why the test was ordered. Thankfully, the results (checking for internal bleeding) were negative.

Last week, in a flurry of work and neighborhood social activities (conferences, commencement, and a blogger meet-up), I missed four consecutive days of seeing my dad. I felt terrible about it (and enlisted my brothers to go the extra mile and visit more) but I’m not going to lie, I felt as if I could get a little bit more done in this thing we call regular life. I did a huge grocery shop, for instance. I washed my own clothes as opposed to sending it to the wash and dry. I concentrated a little more than usual on work. You know, the way I used to be. But at the back of my mind, I wondered if my dad noticed I wasn’t there, and hoped my mother was OK keeping up with it all, especially since, in recent weeks, she returned to her part-time job.

So I’ve gone three times since Sunday of this week and noticed my dad is uncomfortable. Again, the Parkinson’s, the fall and hip fracture, and surgeries, have eroded his ability to form words. Everything sounds like a light moan. So light, that I never worry about the nursing home staff getting annoyed with him; they can barely hear him!

But on Monday night, my brother, mother, and myself, could not figure out what he needed. The choices are limited: adjustment of his position on the bed? Ice/water in the mouth (because he has trouble swallowing, he cannot eat or drink)? Diaper change? Pain?

Many times, he does not (or will not?) respond ‘yes’ or ‘no.’ Sometimes, after a full half hour of throwing different options out there, he’ll say yes (or no) to something I asked the first time. It’s frustrating.

And it also has me wondering if our visits hurt him. Stay with me here: Whenever I get there, if he is NOT sleeping, he’s calm. Quiet. And then he sees me and start trying to speak. Trust me, I’ve thought about whether he’s trying to tell us he’s being mistreated, but my mom was there so much before she returned to work, and through observing how they treat other patients, that cannot be it.

(*This is not to say I haven’t seen the staff get a bit snippy, or flat out ignore some other patients. In fact, it is the vocal and sometimes, most able, ones who find themselves ignored. :/)

So, I’m left wondering if dementia has really set in. After my dad fell, the hospital staff, unable to understand him, classified him with mild dementia. “Confused” is the word I’d see in his chart. Obviously, I hastily disagreed: He knew where he was every second. It was they who were confused about what he was trying to say. Or, when feeling ill with pneumonia, he wouldn’t respond to them. This is also confusing!

But, now, I won’t deny that he may have some mild symptoms. After all, it is expected in patients who have had Parkinson’s for many years. He is coming up on 19 years with this tough disease.

We are not going to stop visiting him, of course. I just wish there was a way to allay him of whatever is causing discomfort. Most of all, I think, if I were a millionaire, I’d purchase some technology where I could just strap some wires to his temples and a machine would tell me what he is saying.

I’ve said this before — my dad is where I get my personality and I sure do miss talking to him about sports, music, and jokes. :/

What is a normal life, anyway?

Screen shot 2015-02-21 at 2.31.54 AMTonight I tweeted, “Will things ever be normal again?” A friend responded, “Define normal.”

I told him it had to do with my father being in the hospital (Yeah, he’s back after his blood pressure dipped and he developed a fever) and that, for the past month, my only two destinations have been work and nursing home and/or hospital.

But he’s right making me consider a definition. What is a normal life, anyway?

I can’t say my life was super ideal pre-my dad’s pretty debilitating fall and hip trauma, but I wasn’t mired in constant worry about them unless I’m completely immersed in my work. Today, even when I’m at work, they’re all I think about.

My father has had Parkinson’s for a little more than 18 years, and my mother is his primary caretaker, despite working part-time. I always went to their house to visit, but in 2014, as his Parkinson’s progressed a bit deeper, I went home nearly weekend to give her some relief.

But this is different. Going from work to hospital till nearly midnight, and back home (with mom; she’s asked me to stay with her until my father comes home), and back to work again, is EXHAUSTING. On top of that, not staying at my own apartment means a half hour ride to my place to pick up clothes once or twice a week. Then there is the mental party, constant worrying, even though he’s in a facility crawling with nurses. It’s tough.

So, no I can’t define normal. But I do know it’s not this.

Factor in my father’s inability to speak clearly (something that started about eight years ago, and has gotten worse since) and mild dementia, and I’m left mentally and physically drained.

I’ve written this in the past: None of this is about me. It’s incredibly tough on the entire family. But this is my dad. I feel like I have to be there for as many hours as possible every day. I’m also there to offer comfort to my mom, who I can tell, is scared about this all.

As abnormal as this may seem, I’m glad I’m here with her, and in frequent touch with my brothers. If I could go back time, I’d prevent my father from falling, but this closeness that we’re feeling as a result of this sad trauma is priceless.

Still, I wonder: will I ever have fun again? Will I ever just aimlessly walk around after work and dip into a store, or into a place for a glass of wine? It doesn’t seem that way at all.