Friday, March 27, 2015

Another week, another crack in my heart

This has been an emotional week. I'm exhausted, but now that I've had my cry-fest, I'm good now.

Lately, my dad has had trouble breathing. By Wednesday, he wasn't willing to drive himself anywhere, and he couldn't walk more than 20 feet without having to sit down.

Thursday, he had a bone marrow biopsy — of which we won't have the results until APRIL 13! He could hardly move the morning of the biopsy, and by the time we got to the hospital, I had to get him a wheelchair. He had a gray pallor. When the nurses checked his oxygen levels, they said there should be no reason he couldn't breathe. His oxygen saturation was fine. Chalk it all up to anxiety.

I did some research last night. Come to find out, dyspnea is common with cancer patients; oxygen saturation levels can also be just fine with this condition. It's a treatable symptom, however. (Strangely enough, opiates help.) So why did they blow this symptom off at the hospital? They knew he has cancer. They knew the reason for his biopsy. Ugh!

This morning, Dad seriously looked like death, and he said he felt like it, too. I felt certain we had reached the end; I wanted to take him to the ER, and Kim planned to head this way.

We called Dr. Patel's office first. Patel is out of town, but his nurse, Jennifer, suggested Dad's newest treatment (Xtandi) could be the culprit — the main potential side effect is exactly what my dad has been experiencing and has increased since he started this medicine.

Because Dad could breathe OK as long as he was doing absolutely nothing and sat propped up, we decided, with Jennifer, to discontinue the Xtandi treatment until Dad could see Patel on Tuesday. By 6 p.m. today (first day without Xtandi), Dad had perked up. He's watching basketball games as I write this post. It looks like Xtandi may, indeed, be the issue at this time.

My dad's increased symptoms have compounded my mother's issues. While the change in her medications has been helpful because she is no longer doped up, and she communicates much better with us — she now knows something is very wrong; however, she isn't aware enough to understand why she has to live where she lives. She wants to be home. YESTERDAY!


Frankly ... she's PISSED! She's been so mad at Dad and me every time we see her. She's been quite difficult to stand, actually. At the same time, I think it's been good she can express her grief and frustration.

Yesterday, Dad's biopsy day, my aunt and uncle graciously went to see her and, apparently, left traumatized by her hateful attitude toward all the family except Jordie and Cole. They had not seen her this way.

By the time I showed up yesterday, it was late, and she was frantic. "No one has answered my calls today! I haven't been able to talk to anyone! Why didn't you call me back?" (She doesn't have a phone to use; she really was saying, "Where have you been?") I explained, again, that Dad had a doctor's appointment, and he wasn't feeling well right now.

She softened toward me after awhile (foot rubs help) and was calmer by the time I left.

In the meantime, Dad has been overcome by guilt because he hasn't been able to be there for Mom. This totally breaks his heart. He has talked to her on the phone, and clearly, she can hear how weak he is. She asked me today, crying, "Why doesn't he feel well?" I reminded her that he has cancer. She remembered.

When I visited her today, she lucidly said, "Everything has changed so much." I said, "Yes, it has. Life has certainly kicked us in the teeth, hasn't it?" She agreed.

Mom cried several times to sweet Shaidai (CNA), "My husband is dying!"

Broke. My. Heart.

This week slapped me hard in the face. The time appears to be rapidly approaching when Dad can no longer go see Mom. That will be too much for him. All I want is for them to be together. I am aggressively trying to figure out all the ways to get my mother moved into our house, too. It's doable. Difficult, yes, but it CAN happen.

We can't afford full time nursing help, but we can get some help. I would have to suck it up and forget that I would be changing my own mother's briefs. (Paid help would have to do the showers; I'm not risking that.) I know how to use the gait belts, and I know how to do transfers with them. Mom is also extremely tiny and light, now. I can administer meds, and I can feed her. I can help her in the middle of the night or whenever else.

The best parts of this arrangement would be that she could sit in the backyard and enjoy trees and birds and kitties. I could take her for walks in the neighborhood. She and Dad would be together again. She would be with Chloe. Dad wouldn't have to stress about not being able to get to her.

While this situation certainly has drawbacks (especially when Dorsey is traveling), I think we should try it. The emotional turmoil of the alternative is more than I can handle right now.

I need some clarity, and I need it quickly.

1 comment:

  1. This must be the height of frustration for you all, especially those of you who can still get around on your own and have full cognition. The anger and confusion is so difficult to deal with. How is she with the staff at the facility? Are they exposed to her upset or is that reserved for her family? Sorry about your aunt and uncle's visit, sad it left a bad taste in their mouths and hearts. I hope they get to see her again when in a better state of mind.

    Sigh...I wish I had more advice or words of comfort to offer. Good for the nurse identifying the problem with the medication, perhaps a different one won't have the side affect this one did. Wishing you the best, my dear, and your family as well.

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