This has been yet another interesting week. Over the weekend, I found Mam-ma Polly dressed once again in pajama pants and her little pink house shoes. Someone apparently dug them out of my hidey hole in the closet! Beyond frustrated, I gathered up every single pair of pants and pajama pants and brought them home... along with the pink house shoes. As I mulled this over, it dawned on me that the facility policy manual states that pajamas and robes are allowed in the dining room for breakfast... but the residents are expected to dress for lunch and dinner. I fully understand that.
I thought about Mam-ma and her trips to the dining room in her pajamas, covered by a blanket, and I realized that this was not only uncomfortable... it was demeaning. So Monday morning, I went to Fred's and Wal-Mart and purchased five new house dresses for her. Since I had removed the pants and pajama bottoms, I labeled her new dresses and grouped them in the closet with matching sweaters and jackets. I then told the nurse and every aide I saw that I wanted Mam-ma dressed in THESE outfits. A couple of the aides got pretty excited over the bright colors... and the ease of dressing Mam-ma in something with snaps and zippers. I showed them where Mam-ma keeps her camisoles in the drawer of her dresser and suggested they put one of those on underneath - for modesty.
Monday was Memorial Day, and James, the maintenance man, grilled burgers and hot dogs for the residents and guests. So I ate a FEAST with Mam-ma and her friends at her old table. Over the weekend, I had discovered that the aides were placing Mam-ma at another table in the dining room, so that one aide could help both her and another resident eat at the same time. This was not great for Mam-ma's socialization, but I realized that she might eat more... and I couldn't count how many people came to the table to speak to her and give her a hug. So I didn't fuss. But Monday, we sat with her friends. And honestly, I realized then that it didn't matter, because Mam-ma only ate because I pretty well fed her... and she did not interact with her friends and me in the least.
Tuesday was not a good day. Mam-ma became very confused and complained of burning when she urinated... the nurse told me, "I'm pretty sure she has a UTI." The Hospice nurse came and a urinalysis was done... with positive results. Mam-ma saw people in the room who were not there, and she was just generally sick all day. Wednesday, she seemed a little less confused, but I still spent quite a while with her... straightening her room, handling some laundry issues, and consulting with nurses and aides about her care. She had not gone to the dining room on Tuesday, since she was so sick. But Wednesday, she told me, "Debbie, I want to go to lunch in the dining room." So I asked the aides to dress her and take her for lunch, and they did.
My mom visited in the afternoon, and she said she sat by Mam-ma's bed for about 45 minutes and read a book... and Mam-ma slept. She said occasionally, Mam-ma would wake up a little and say, "I wish I could stay awake." Once, she raised up and clearly and distinctly spoke a man's name. Mom said, "Yes, he's the man who wrote 'Singing the Blues,'" to which Mam-ma said, "I don't know." Now, this man is someone who has been dead since 2004... and my grandmother really did not know him! Why she spoke his name so clearly is a mystery to us. Did she see him in the room? Did someone mention him to her in passing conversation? We seriously doubt the latter... but we will never know!
Thursday, I did not go to visit Mam-ma, and around 6:30, the phone rang... caller ID showed it was her number. I answered, and the aide said, "Polly wants to talk to you." She put Mam-ma on the line, and I asked, "Hi, Mam-ma... what's wrong?" She said, "Well... I'm sicker than HELL!" I told her I was sorry, and she said, "I thought I'd drive over, but..." and she trailed off. Then she started to cry and moan, "Oh... oh... Debbie... well, Sugar, I ..." Then she said, "Call me sometime." I told her, "I'll be to see you tomorrow, okay?" More moaning and crying, and then she mentioned a cousin and a photo. "Did Carolyn come to see you again?" "Yes." "Did she bring a picture and leave it for me?" "Yes."
I told Mam-ma SHE might like to have the picture, and Mam-ma said, "No... I want you to get it... I don't want anything to happen to it." That was her only lucid comment. Next, she said again, "Call me sometime." I assured her that I would see her the next day - and that her aides would come soon and give her night-time medicine to help her sleep. We hung up, and I told Greg, "Mam-ma is sundowning*."
Today, I arrived at the facility a little before 11:00 a.m., and as I entered the building, I heard throat clearing that sounded all too familiar... it was Mam-ma. I looked around... where on earth could she be? There she sat, in her wheelchair in the hallway, along with a long line of residents. It was "rounding" day for the facility doctor... and Mam-ma was in line. I have no idea how long she had been sitting there, but she was slumped in her wheelchair... her feet dragging the ground. I went and got a folding chair from her room for myself - and the foot rests for her wheelchair. I stopped to speak to the duty nurse, who told me that Mam-ma was really sick this morning with diarrhea.
I tried to show Mam-ma some sewing I had brought to share with her... she was not interested. She was tired and weak. The facility owner (who is also a nurse and was attending the doctor during his rounds today), came out between patients and assessed the group. I waved to her, and she said, "Polly is next." Sure enough, we were next in line to see the doctor. I thought the doctor did a thorough job of examining Mam-ma. He was gentle and kind and extremely attentive... and also assertive. He spent a long time on his hands and knees looking at Mam-ma's pressure wound on her heel... even measured it. The nurse asked if it should be debreded... he emphatically said no... that it should be left alone, and if it needed any treatment in the future, he would handle it personally.
The doctor also explained to me that we can expect more skin breakdown as things progress, along with the possibility of more UTIs and even pneumonia. Even though an antibiotic was begun earlier in the week for the UTI, he prescribed 10 days of a different antibiotic, based on her lab cultures. He also changed her to a time-release pain medication that should stay in her system all the time and prevent these hours of pain in between pills that she has experienced.
The attending nurse asked the doctor about getting Polly up and out more... did he want her more mobile? He said that getting out of bed for a short time would help with pain, skin breakdown, and even possibly the sundowning. The nurse said, "So we want to get her up 3 times a day - for meals?" I mentioned that we are getting Mam-ma up for lunch now, and the doctor said, "Lunch is a good start... and then if she builds up to it, she could add breakfast or dinner." The doctor and nurse finally agreed to write orders to get her up "as tolerated."
I questioned the nurse... "This means meals only... right? You won't have her out playing BINGO and going to activities, will you?" She looked at me and said, "Listen, Polly pretty well rules the roost around here, and when she says she wants to do something, she's gonna do it! " I reminded her that lately, Polly says one thing one minute... and the next minute she is asleep! Her "yes" is "no" and vice versa. She replied, "Yes, well, they're all that way." I reiterated that I did not want Mam-ma to be up and out so much that she is in pain. The nurse assured me that "We're not going to leave her sitting somewhere slumped over asleep and go off and leave her unattended." And I don't think they would... intentionally. But I know how busy the aides are... and things happen... and I'm just looking out for my grandmother.
The doctor kept reiterating that our goal here is to keep Mam-ma comfortable. The nurse also asked about physical therapy. More to the point, she asked him, "When can Polly start bearing weight on her feet?" I reminded them that she has not put ANY weight on either foot since she fell... and the doctors in the hospital told me she would most likely never walk again. The doctor concurred... but he said that some gentle physical therapy could help with stiffness and pain and overall well being. The nurse said, "I've already talked to PT... she's at the top of my list!" I later learned that there is a good chance that Medicare will not cover physical therapy, since my grandmother is on Hospice... and the doctor did not mention it in his orders.
The visit concluded, and an aide came to whisk Mam-ma to lunch in the dining room. I had gotten her a hankie from her room, because she had a runny nose. When I got to the dining room, I noticed the hankie was covered in something... and it looked gross.
I gave Mam-ma some paper napkins and retrieved the hankie and put it in her dirty laundry pile. Thank goodness her apartment is only a few steps from the dining room - and nurse's station!
When I got back to Mam-ma, her lunch had arrived... spaghetti, broccoli, and garlic bread. She was eating the bread while her aide fed another resident. I noticed something on her dress, and as I looked closer, I realized that Mam-ma had spit up all down the front of her clothing. I told the duty nurse who was standing nearby, and she immediately flew into gear helping pass out lunch plates so that the aide could help me get Mam-ma to her apartment and get her cleaned up and into fresh clothing. Two aides actually came to do this, and soon we were back in the dining room, and one of the aides was feeding Mam-ma chicken noodle soup.
I gathered Mam-ma's best blanket/throw to toss into my washing machine, and headed home. While the blanket was in the clothes dryer, ran errands and bought groceries... and more wipes for Mam-ma. Then I returned to the facility with the clean blanket and wipes. Mam-ma was sleeping comfortably in her bed. She roused enough to say, "I feel a little better." Some very dear lifelong friends popped in to say "Hello," and Mam-ma tried to talk to them, but every sentence was truncated midway as she drifted back to sleep.
I clasped her hand and wrist as I prepared to leave and told her that my sister would be there soon for her weekend night shift... and that I would see her later. I was struck by how thin and frail Mam-ma has become. I wonder just how much weight she has lost in the last month. I spoke with the Hospice nurse later, and she was pleased with the doctor's report. My mom had visited while I was running errands, and she was pleased with how she found Mam-ma. In fact, a close friend of Mom's who Mam-ma has not seen in probably a decade was with her, and Mam-ma called the friend by name and even asked her about her own sons. Mom was amazed at that... and the friend was thrilled.
I told the Hospice nurse this afternoon that sometimes I feel like I've been through a battle by the time I get home from the facility. For the most part, everyone seems to be on board with keeping Mam-ma comfortable and allowing for moderate activity each day. But some are still hoping for the "old Polly" to emerge... and I just do not see this happening. And as I pointed out to the doctor and owner/nurse today... "that's not what she wants at this stage." I also stressed that I am not wanting to tie my grandmother to her bed... nor am I trying to expedite her passing. But I know her... I know that she wants every minute she is alive to have quality and be comfortable... and so far, we can't say this is always happening.
Let me hasten to add that I am truly pleased with the ALF where Mam-ma resides. I couldn't ask for a staff to love her more... and cater to her every whim. This is not about the ALF. Just yesterday, Mom lunched with two of her oldest friends who both expressed that "Polly should get to do whatever she wants to do." The first week Mam-ma was back at the facility after her surgery, the other friend said to Mom, "If Polly wants to go to BINGO and other things, I think she should get to... she should do whatever makes her happy." The trouble is... Polly doesn't always know what she wants or what makes her happy. She is not thinking clearly... and her answers are often irrational. It is up to me as her caregiver to discern what is appropriate... and like any good mother, that sometimes means saying "No!"
Mam-ma is tired. Tuesday, in the stupor of her UTI, she reached out and took my hand and said, "Oh, Debbie... what would you think about me going home?" I wasn't sure what she meant by "home," so I said, "Well... Mam-ma... you are home... you've lived in this apartment for over a year now." She shook her head. I asked where she thought she was, and she said, "I don't know." I learned that earlier in the day, she had told the administrator she was afraid. The administrator had found her clenching the bed rail and looking very frightened. When she asked, "What are you afraid of, Polly?" Mam-ma replied, "I just don't want to go back to the way things was." Again, the administrator didn't know if she meant the hospital. I have had more than one person who knows my grandmother say they feel she was trying to tell me once again she is ready to go HOME to Heaven... and I suspect they may be right.
I know this is a long, and probably dull and uninteresting post for some of you. But for those of you who find yourselves in a similar situation, it may sound all too familiar. What is the take-away from this? For me, it was the visit I had with a dear friend this afternoon. She and her husband cared for his mother in her last years until she died at the age of 101. She was by then under the care of Hospice, and her grand-daughter was living with her fulltime. But my friend said, "Remember... this is not forever - for either of you. It will end... and you both will get relief." I know this, but I needed to hear it. "This, too, shall pass"... literally.
Meanwhile, I will keep doing the only thing I know to do... being a "bulldog advocate" for my grandmother and make sure that her wishes are respected. In her case, she really isn't too old to rule the roost... and I'm doing my best to see that she gets to do exactly that!
*(Sundowning is also known as late-day confusion, often associated with dementia and/or Alzheimer's.)