The Holiday Week That Wasn't

Denise

The Holiday Week That Wasn't

Denise
rainy-83136_640I'm not sure why this past week has been so hard on me.

My mom's last good day was December 19, the day of our cookie decorating party. The stomach flu started the next day, wiping her out for the next few days. She rallied to attend Christmas Eve at my sister's house.

Looking back, I suppose I started cracking on Christmas Eve. I was on time to leave at 3:30 to pick up my folks when my brother called -- the car rental place oversold and his reserved car was, well, currently driving someone else to their Christmas Eve celebration. (My brother lives in the city without a car.) Could I get them (my brother and sister-in-law) and give them a ride, too? The logistics of picking them up at the subway, getting my parents, telling my short-tempered Dad about the change in plans, worrying about my mom tolerating more time in the car just really got the best of me. My parents and I went round and round on how to work this out. Finally, my dad just said he would drive while I picked up my brother and sister-in-law. So, my parents made their way on the expressway to my sister's house, 40 miles away. They made it but, honestly, my palms still sweat thinking about it. My brother felt terrible, I know, and they endured their own nastiness (lugging food on the subway) but it's so incredibly frustrating that we had to go through all of that at the last minute on Christmas Eve.

My mom had a few close calls on Christmas Eve -- I even ran for a bucket at one point. But, she didn't throw up and lasted until about 7;30. I drove my parents home, with my mom in the front seat, blanket ready on her lap in case she needed to throw up. She didn't.

I arrived to chaos in my parents' apartment on Christmas Day. I could hear my dad swearing in the bedroom when I arrived. His ostomy bag leaked for the second time in as many hours. I got to work changing his bag, which meant I took a look at his stoma and surrounding area for the first time in a few months. Oh, my. A bright red circle surrounded his stoma (the new opening for his urine). My dad had been using wipes instead of soap and water to clean his stoma. He also shared he hadn't been showering. He's receiving treatment from a lymphedema therapist to reduce the fluid build-up in his legs. Because he wears leg wrappings which he can't remove, he wasn't showering. He also admitted that his ostomy care is most likely too much for my mom to manage. (My mom had assured me that she could manage it. I had concerns but I want them to do as much as they can for as long as they can. )

As I changed his bag, my dad disclosed that my mom had a midnight fall a few days earlier, hitting her head on the dresser. He ripped off the top skin on his arm trying to help her up. He called for help and a CNA checked my mom before helping her up and into bed. Oh, boy.

We cleaned the area around his stoma and added a new bag. After I got my dad in good shape I noticed my mom wincing in pain -- it's her back, she said, probably because of the fall. We called the nurse on duty, who called the visiting nurse. The visiting nurse called back promptly and suggested my mom take two Tylenol every four to six hours.

I returned the next day to remove the wrappings on my dad's leg so he could shower. I re-wrapped his leg and put on a new bag. I made sure my mom continued to take the Tylenol.

By Tuesday, mom was not well. She had to cancel an appointment for an x-ray with contrast to make sure scar tissue from her stomach surgery this summer wasn't causing a narrowing in her digestive tract. She's been bloated and has vomited in the past, which could be the result of a blockage. Her visiting nurse arrived Tuesday to check my mom, who has lost 15 pounds in less than two weeks. She looked awful. The visiting nurse felt it was just the stomach flu hanging on. I called the nurse practitioner, who arrived after the visiting nurse left. She checked my mom and thought, too, that the stomach flu was the culprit. She drew blood just to make sure my mom didn't have another internal bleed. She looked at my dad's reddened area and thought what I did -- he had something like a "diaper rash" around his stoma and perhaps a yeast infection below. After the nurse practitioner left, my parents and I sat down for lunch. My mom promptly threw up.

On Wednesday, I went with my dad to his appointment with the lymphedema therapist. We arrived back to the apartment to my mom who looked like death. (My dad, rather oblivious, told me to go home. "Mom's really sick," I said, "I'm staying.") We called the doctor, who asked the visiting nurse to return to take my mom's vitals. Her vitals were fine, the lab worked was "unremarkable." The problem could be an obstruction that only an x-ray will show. My mom complained about her dizziness (it's chronic, unfortunately) and that she couldn't walk from the bedroom to the next room.

We finally decided to go the ER.

Three hours later, we returned to their apartment, antibiotic in hand. My mom had a urinary tract infection,which probably caused the back pain. And, an x-ray showed no obstruction. We were all incredibly relieved.

(I sent a text to @lillie in the ER to let her know I may be offline for awhile. Lillie immediately emailed me a prayer. There's no one like Lillie in a crisis.)

I went to another therapy appointment with my dad yesterday. When I picked him up, he said, "I had blood in my bag this morning." I noticed a cut above his stoma on Christmas day; I think the dry, reddened area caused his skin to crack and bleed. We changed his bag when we returned from his therapy; this time, we asked the visiting nurse to look at the reddened area, which actually does look better. The bleeding had stopped; we applied Desitin on the red area and athlete's foot cream for the yeast infection.

I ate lunch with my parents in the dining room -- the first time they left the apartment for a meal in about a week. I left as they headed to the community's New Year's Eve party, which started at 1:30 p.m.

I've kept three siblings up-to-date although their reaction has been akin to a shoulder shake and a "good luck." I did not include Sibling in my text updates from the emergency room. I told my parents, who both waved their hands and said, "Fine." 

I'm so grateful for the visiting nurse and nurse practitioner, who spent so much time with my parents and with me. They answered my questions, talked out the possibilities. The nurse practitioner, off on Wednesday for her father-in-law's funeral, called me yesterday afternoon to check on my mom. She apologized profusely when I shared it was just a UTI. I told her not to worry at all -- my mom had so much going on it was hard to figure out what to do. The nurse practitioner's phone call yesterday afternoon lifted my spirits. Her thoughtfulness really comforted me.

Three of my siblings will be here for lunch on Sunday to talk out how my folks are doing, how we can get more help (my mom just says, "I'll think about it," when I suggest it) and to tackle a few pressing items. I told my dad we would take care of his final arrangements. We need to change my dad's alternative durable POA from Sibling to another sibling.

Perhaps it's the stress of the holidays and caregiving. Sibling wouldn't attend our Christmas Eve get-together. My nieces seem to have gone radio silent, not returning my mom's voice mail or text messages. My mom regularly talks about Sibling and my nieces and how she can't understand why they do (or don't do) what they do. I tell her I'm appalled. But, I can't really fix this situation and it's a horrible, helpless feeling.

I suppose it feels that nothing is right. My family isn't right. My parents' health isn't right. I can't right this sinking ship. So, I'll do what I can, asking for and receiving all the help I can get.

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Sharon

Denise, how wonderful it is that you recognize the need to reach out. With a week like that, anyone would need a place to fall. I am reminded of my psych's wise words....what you feel is normal and we don't need to treat normal. I am sorry this is your normal now, but you handle it so well. I hope we can hold you up with our roots as you have held us up so many times. My thoughts are with you as you navigate your normal.

darciejane

The holidays seem like a recipe for disaster in the lives of many beleaguered caregivers such as yourself, Denise! Personally I am glad they have come and gone, and at least this year, I imagine you are feeling the same. I so admire how you handle things, the honesty and clarity that you bring to the situation. It's hard to imagine a new year bringing anything good to those with aging carees (or any carees who are in a decline).....we can only hope for and work towards more peace and continued resources for ourselves to withstand it. Happy New Year.

jan

Many things in your world may not right, but you have and are doing everything right, everything you could possibly do. I'm so sad to hear about these setbacks at a complicated time of year. I'm glad to hear about the good help and advice you received. I hope your meeting with your siblings is a positive and honest one, and you come out of it with a plan that gives all of you peace and direction.

Goldie

Oh Denise... it is so so hard when our parents obviously need more help and everything starts to spiral down. It really does start to feel like we're on a sinking ship. And it is so hard when their response to more help is \"we'll think about it\". My thoughts and prayers are with you.

Thedogmama

Denise, I know just how you feel. Dealing with mom and dad at once is so overwhelming. I pray you and your siblings can \"convince\" mom to accept the help they now need. Does she respond favorably if you say it is for your father, not her? That worked with my mom (sometimes). It is stubbornness that gets them this far in their lives, but that same trait that is a positive can then become such a hurdle when helping them to let go and accept help. Never doubt you are handling this with grace and wisdom. It only feels like you are not when the day to day crises cloud your vision. You are in my thoughts and prayers.

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