Archive | April 2014

Relief

Yesterday was my first day back at work after moving my mom. I called her in the afternoon to see how she was doing. I asked if she was having a good day. “Oh yes!” she replied. “I mean, we’re just sitting around watching TV, but it’s with a group of friends.”

I stopped by after dinner to visit. She was watching TV with the group and showed me that she had received a card from a friend and a letter from her cousin in Michigan. I told her that I was having her newspapers forwarded, so she should have some new papers to read soon too.

“I’m going to be here for a while, aren’t I?” she asked.

“Yes,” I said. “But you like it here, right?”

“Yes, I do.” After a thoughtful pause, she added, “It’s better than living alone, actually.”

This is exactly what I’d hoped for, that she would prefer the company of a group home to being alone in her room all day. Before I left, we talked a little more about the nice home she lives in now. “What makes this place special,” she said, “is their attitude. It’s a very caring place.” I couldn’t agree more.

I feel such a profound sense of relief, knowing that she is not only safe but also happy in her new home. The weight of worry that has been grinding me down for months has been lifted, and I feel so lighthearted I could almost fly.

Transitioning

Mom has been in her new home for five days now. She didn’t understand at first that this is where she is living now, but seemed to be under the impression that she was staying in someone’s home until her new place was ready. The first night, when Bro and I were getting ready to say goodnight, she asked “Am I sleeping here tonight?” When I said yes, she made a face at me and said “You don’t tell me these things.” I told her that we did talk about it but she probably doesn’t remember and that’s OK. For the next couple of days, whenever someone would ask how she liked her new place, she would reply with something like “I don’t know. I haven’t even seen it yet.”

On the other hand, when asked if she likes where she is staying now, she always says yes. She talks about how kind and caring the staff are, she’s getting her appetite back, and she has already made a new friend. Following the advice I received on the dementia caregivers forum, I don’t try to explain that she lives there now. I just tell her that she will be staying there “for a while” and then talk about some of the good things, like how bright and cheerful her room is or the beautiful garden just outside her window.

Her new friend is nearly 96 years old and was very active and independent until the last few months of her life. Her physical health and strength has declined rapidly but she’s still sharp as a tack. She keeps an eye on the other residents, who are all more cognitively impaired than she, and immediately adopted my mom as her new best buddy. I am thankful for this lady, who I’ll call Georgia, because she’s the only one of the residents really capable of engaging in any meaningful conversation. The caregivers tell me that Mom spends a lot of time talking with Georgia. They sit next to each other at the dinner table and in the TV room. I am also thankful that Georgia is NOT Mom’s roommate because, man, does this lady like to talk! Mom’s roommate is very quiet and seldom in the bedroom except to sleep at night, so if Mom wants peace and quiet she can retreat to her room.

The caregivers are all Filipino ladies, gentle and patient. The one in charge, Maria, is particularly good – warm and caring and on top of everything that goes on in the house. When the physical therapist came to work with Mom yesterday, she watched everything that he did and said she would start doing some of those exercises with Mom in between his visits. If something comes up that needs doing (like reminding Mom to remove her dentures and soak them overnight), Maria only needs to be told once. She also monitors Mom’s oxygen levels throughout the day, and I’m happy to say that Mom is now able to be without the oxygen machine most of the day.

I know it’s an adjustment for Mom, living in a house with five other ladies all together and sharing even her bedroom, but I am confident it will be good for her. It’s only been five days, and I’m already seeing a change for the better. Mom is spending less time in bed, more time interacting with other people. She’s got a healthy appetite again. She even joined the rest of the ladies in exercising on her first day there. As we stood outside the house on my brother’s last night in LA, Bro put his arm around my shoulders and said “Sister, you did good.”

T.G.F.F.

Thank God for Family!

My brother flew in from Texas on Sunday. He’s spending the week with me (until Friday) and will help me get Mom moved in to her new residence. He also took her to a medical appointment today (the ultrasound scheduled by her cardiologist), so that I wouldn’t have to take more time off work. I don’t know how I’d be managing this week without him. Not well, I’m sure.

After the ultrasound, he took her out to lunch. It was about a three-hour excursion all told. We talked on the phone when he got back and he said “I got a taste of what your life is like today. This is a lot of work!” Yep, it is. And I don’t think anyone really gets it until they’ve had to do it, at least for one day.

My sister and oldest niece were also in the area last weekend, doing college tours. They drove an extra 90 minutes roundtrip to have Easter dinner with us on Sunday. Mom was so tired after going to church that she didn’t want to get out of bed to go meet them for dinner. I had to ask her three times before she would even agree to sit up. But once we got in the car she was excited to see them, and we had a wonderful afternoon/evening of quality family time. It was the first time in three years that Mom had seen her granddaughter, and all five of us hadn’t been together since 2009. I was delighted when my niece announced that she’s chosen a university only 35 miles from us. I am looking forward to seeing more of her in the next few years, and I know Mom is too.

My aunt (Mom’s sister) and cousin also visited us from Ohio a couple weeks ago. Mom was still pretty weak from the hospitalization, so they spent most of their time with her just visiting in her room, playing Scrabble or just talking. They did some sightseeing in the mornings, while she was still sleeping, and we all ate dinner in her room every night. One night we all went out for pie after taking Mom to the lab to get more blood work done. Weak as she was, I know that spending time with her dear sister was a real boost for her morale and energy.

I had hoped to bring Mom to Colorado to see her granddaughter graduate from high school, but with the difficulty she’s having getting enough oxygen even here at sea level, everyone agrees a trip to the Rockies would be too risky. We’ll also have to postpone our family visit to Ohio until later in the year. I haven’t told her yet. I know it will be disappointing, but hopefully the blow will be softened somewhat by the wonderful family visits we’ve had over the last few weeks.

Unacceptable

I got a scare on Friday evening. I almost didn’t go visit my mom, since I knew I’d be spending most of the weekend with her, but I had picked up some more Ensure and ginger ale to keep in her mini fridge, so I thought I’d just drop it off and check on her quickly. She was lying on her bed when I arrived around 6:30, oxygen canula in her nose, and she said she was feeling tired and “not so good”. I put the beverages in the fridge and sat by her for about twenty minutes, holding her hand and talking and reading to her from her book of daily devotions.

I was getting ready to leave when it occurred to me to check her oxygen level with the finger oximeter. Good thing I did – she was down to 77! It scared me that her oxygen level could be so low while she was hooked up to the oxygen generator. I went to check the generator and discovered that it was OFF. Apparently whoever had taken her down to dinner had turned off the generator and failed to turn it back on when they brought her back to her room.

Un-freaking-acceptable.

I turned it on and turned the oxygen level up to 4, and I stayed with her and waited until her sats came up to the acceptable level of 90. I tried not to think about what might have happened if I hadn’t come by to check on her that evening.

Losing My Cool

Despite my best intentions about being the “voice of calm” for my mom right now, I lost my cool yesterday. I arrived to take her to a doctor’s appointment, found her room warm and stuffy (the portable AC not working properly), and couldn’t figure out how to get her switched from the oxygen generator to the portable oxygen tank. And I melted down, right there in front of her. I panicked. I raised my voice. I was the exact opposite of calm.

I rang her call button and got a caregiver to come help me with the oxygen, and then I pulled it together. But navigating a wheelchair and a portable oxygen tank on a little wheeled stand is a skill that will take me some time to master, and the whole trip to the doctor was difficult and stressful. After my little freakout, I held it together – but I wasn’t the calm, soothing presence that I always try to be (and usually am) with her.

We stopped at Foster’s Freeze on the way home from the doctor and I bribed her to eat with a caramel milkshake, which I think was the first food she’s taken more than two or three bites of all week. (At this point, I don’t even care about healthy food. I just want her to eat something. Anything.)

I’m worried that she’s still so weak and her oxygen levels are still so low. I’m afraid that when we get a new blood culture done next week it’s going to tell us there’s still infection. But there’s nothing I can do about it right now except keep a close eye on her. As a result of this worry, when the home care agency told me that the home health nurse who evaluated her on Tuesday had determined there was “no further need” for nursing care, I lost my cool again and almost shouted at her: Are you freaking kidding me?!

Deep breaths.

Another “Nurse Ratched” Vent

I was in the middle of a meeting with my boss when my cell phone started buzzing – a call from my mom’s phone, and she NEVER calls me (I don’t think she remembers how). I excused myself from the meeting to take the call, fearing an emergency. It was the Care Director (aka Nurse Ratched). I asked if something was wrong, is my Mom OK?

“Oh, she’s fine,” said Nurse Ratched. “But she is ADAMANT that she won’t get up, won’t get dressed, she just wants to stay in bed.” Her tone sounded cross, impatient.

“She’s sick,” I said, startled. “She just got home from the hospital.”

“So I should just let her stay in bed?” she demanded, in an incredulous tone like she can’t believe that’s going to be my answer.

“She’s been very sick and she’s still weak,” I replied. “Let her rest. Just don’t give her pills on an empty stomach. Make sure she has some food with them.”

I explained that I have to take my mom to the doctor this afternoon and would be there to pick her up between 2:00 and 2:30, so she would need to be dressed in time for that. But until then, yes, it’s perfectly fine if she stays in bed.

For crying out loud, has this woman NO empathy?! This is an 85-year-old cardiac patient on oxygen, who was just discharged from the hospital the day before yesterday. Isn’t it understandable, even necessary, that she get a lot of rest? Why does this b*tch need to bully her into getting dressed at 8:30 in the morning?

Man, I can’t wait to get my mom out of there! Counting. The. Days.

Discharge

Mom was discharged home on Tuesday evening. I thought for sure they’d send her to skilled nursing rehab first, not straight back to her assisted living facility, and I have mixed feelings about it.

I don’t think she was ready to go home. She’s still so weak she can’t get off the toilet without help, even with the grab bars in her bathroom. They sent her home with oxygen, thankfully, but I called yesterday morning and discovered she’d taken the canula off when she went to the bathroom and forgot to put it back on. She barely ate yesterday, only half an Ensure shake for breakfast and a few bites from the lunch and dinner trays they sent to her room.

If my aunt and cousin weren’t arriving on Saturday, I would have pushed for her to be sent to rehab for a week. I think she needed a few more days of bed rest. Then again, hospitals and nursing homes can be the worst place to be when your immune system is vulnerable; so maybe she’s safer at home in her room. Still, I will be so relieved to have family here to spend time with her during the day while I’m at work next week. We just need to get through two more days…