To say the weekend in the hospital was uneventful would be a lie. For starters, I arrived Saturday morning around 9:00, and the aides said, "She didn't eat much breakfast." I immediately knew why as soon as I saw Mam-ma ... she wasn't wearing her dentures! I told the girls... "She doesn't have in her teeth!" They sheepishly disappeared, and the ward clerk scrambled to find something in the nutrition room that we thought Mam-ma would eat. Then she realized the food cart was right beside the nurses' desk, and Mam-ma's virtually untouched tray was still there. She retrieved it and warmed the scrambled eggs and biscuit in the microwave. I fed Mam-ma, and she ate all of her eggs and half a biscuit with jelly - once we put in her teeth, of course!
Saturday morning, the therapist came to do some exercises, but when she and the nurse lifted Mam-ma from the bed, Mam-ma virtually collapsed in dead weight, and they just sat her in a chair. The therapist, who is a friend whose grandmother is Mam-ma's contemporary, mouthed from behind Mam-ma... "You're doing the right thing" (meaning Hospice). That made me feel more confident in my decision.
Sunday was horrible. Mam-ma required several "brief" changes, and the nurses were always so kind. But sometimes it was an hour after we rang for help... and that is just too long - even if you are understaffed. So I had to make a few trips to the desk to remind someone I needed help!
By the time Sunday ended, my grandmother had suffered through several hours of severe gas pains that left her screaming in discomfort. She was unable to eat her dinner, and I discovered that while we were at lunch, Amanda and her dad had come, and Mam-ma had sent them home with some harsh words... she had a messy diaper and was embarrassed, and she told them in some pretty colorful language to go home. So they did. Another cousin came before dinner, and she helped me with Mam-ma for a while... managed to feed her some applesauce... and Mam-ma finally settled down and seemed to stop hurting around 7:30 p.m. I hugged her and promised, "I'll take you home tomorrow." She frowned and said, "Debbie, I'm worried about you. You're doing too much." I explained that I was only doing what she needed, and I would be okay. Later, as I kissed her goodbye, she cried and said, "Oh, Sugar... you've done so much... you are just so precious." I left in tears.
I came home and tearfully told all of this to my husband... who had been there with me for part of the afternoon drama... and he said, "You are overly tired. It will be okay." I was... and it is... but that was a rough day.
Monday, I arrived at the hospital, and the aide met me and said, "She hardly ate anything this morning." I took one look and said, "I can tell you why - she isn't wearing her teeth again!' This was another aide, and she said, "But it was pancakes and scrambled eggs!" I replied, "I don't care... she's not gonna eat without her teeth!" So the nurses ordered another tray and apologized profusely. This is "Nursing 101!" The charge nurse said, "If you were staying another night, I'd make a sign that said 'Be sure to check for her teeth before feeding!'" After meeting Monday morning at the ALF with Hospice and ALF staff, we got Mam-ma settled back in her apartment by late afternoon. No less than six aides, a nurse, and an administrator swarmed the hospital van to greet her when she arrived. That was such a great sight... I knew we were truly home. I spent more than an hour with the Hospice nurse and social worker, filling out paper work and getting things in order. It was another long day.
Mam-ma seemed to do well on Tuesday... a Hospice aide came and bathed her. She has a hospital bed, a wheelchair, bedside toilet, and oxygen if needed. The four days per week that the ALF staff doesn't give her a bath are covered by Hospice aides who come and bathe. Mam-ma was concerned about me "doing too much," so I told her I would stay home on Wednesday and not visit. Honestly, my house was so dirty and messy, and I could not rest until I knew it was in some semblance of order. It never felt so good to clean a bathroom or dust and vacuum! I made potato salad and spaghetti sauce to freeze for quick meals and just basically caught up on things that had been neglected for nearly two weeks.
Thursday, we had a Mother's Day luncheon at the ALF. I had told the administrator that my sister and I would attend - and if Mam-ma could not attend, we would sit with some mother who had no one there to sit with her. When we arrived, Mam-ma had been bathed, and she had on pajamas - even the pants! Her favorite Hospice aide was there, so I didn't question the pajamas... although she had worn hospital gowns up to that point. We asked if she felt like going to the luncheon, thinking she would say no... but she said yes, and she wanted to wear her nicest suit! So the aides dressed her, and off we went.
During lunch, the activities director stopped by our table and told us that Mam-ma had come out to the dining room and played BINGO the day before. This was news to me, and I was quite shocked. I knew the nurse had told me she wheeled Mam-ma to the dining room a couple of times... but she had also told me that Mam-ma did not get up for any meals on Wednesday. I'm not sure exactly what she did. But the bottom line was that I realized that the staff had put Mam-ma right back into her old routine and was pushing her to get back to her "old self." I didn't know what to do, but I figured she was pretty close to "hitting the wall."
I was right. Friday morning, the Hospice nurse called me and said, "I've just seen Polly, and she is totally out of it. She cannot stay awake... she is lethargic... I don't know what happened!" I did! I explained how much that Polly had done last week, and the nurse told me that this had to stop. I agreed... but how? She told me that I needed to contact the administrator and discuss this with her... and I did... and we agreed that Mam-ma takes meals in her room, stays in her hospital gown, and only gets up for a little while each day and sits in her recliner - at least for now. She is still in a lot of pain, and only 14 days out from a major surgery at this point. Plus, she is less than 6 months from being 100 years old!!! Because Mam-ma looks so much younger - and generally acts it... and because the staff loves her so and wants her well... they were really working to rehab her back into shape!
So I'm getting some dirty looks and have had to go back and reiterate to a few that we are NOT pushing... that "less is more" in this case. But we seem to be getting there, and I do think this is the best thing for my grandmother. I am not willing her to die... nor giving up on her. I am managing her care. There have been times when I have called about something or gotten involved in a detail here or there, and my husband has suggested that perhaps I am micro-managing her care and causing myself undue stress. The Hospice nurse assures me that I am not... that I am simply loving my grandmother and making sure she is taken care of. It's hard to know how to balance this... and what can slide and what is important. I'm in some uncharted territory here (at least for me), and I am doing the best I can. When I visited today, a new shift of aides was on board, and Mam-ma had been to lunch and was dressed in pajamas again. So I had to "educate" them on the plan... apparently the word about her care plan did not get to them.
One aide seemed to question my comments... I told her and another aide that the doctors feel that even with therapy, Mam-ma most likely will not walk again, and this aide said, "Oh, I disagree! They don't know Ms. Polly!" Maybe not... but I do, and she is almost 100 and 14 days out from a major surgery. For now, at least, bed rest, meals in her room, and no wheelchair rides is the way to go. I did consent to letting Mam-ma wear her pajama tops instead of a hospital gown. She says the gowns "choke me." So she can wear the tops and a robe when sitting up in her chair... but wrestling on a pair of pajama pants is preposterous for someone in her condition!
I am so thankful for Hospice. I told someone that Hospice is as much for me at this point as it is for Mam-ma. I needed their support and guidance. I needed to know that someone who knew more than I will manage her care and help me with all of the decisions. And I needed someone I could call (besides a family member or friend) who was an expert... and who could be my sounding board.
At this point, we are day-to-day... or is it minute-to-minute?! Things change constantly with my grandmother, and I'm not anticipating anything at this point - good or bad. I'm trying to let things happen, and be prepared for whatever comes next.
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