I've done some serious "textile therapy" in the last week, so I have only visited my grandmother a couple of times. My mom has visited a few times, too - and my sister still works 3 weekend nights - so it's not like Mam-ma has not had visits from her family. When my mom visits, she often reports that Mam-ma "had trouble holding her eyes open," so Mom ends up pulling up a chair and just sitting at her bedside for a while. I find it interesting that I can go the very next day - or even the same day - and Mam-ma has no trouble staying awake. I'm wondering if this "pretending to nap or be sleepy" is for Mom's benefit. Mom thought that Mam-ma was mad at the world the last time she visited, and this was why she closed her eyes and literally shut everyone out! We'll probably never know for sure.
I found things pretty well on Sunday when I visited. I took more sewing to show Mam-ma, though she never even raised up in bed. She looked it all over - twice - and declared, in a rather long sentence for her... "I said to myself, 'She's a havin' the time of her life with this sewing.'" I heard this several times over the course of ten or 15 minutes. My husband and I were attending the funeral visitation for a dear friend that evening, so I didn't stay long. But I thought all was well... until I talked with my sister on Tuesday.
It seems that Mam-ma continues to holler, though she has not done so while I am there in about two weeks. But at night and much of the daytime, if she is in her bed or recliner, she is hollering for any and every aide who passes her door. And my sister said when she is on duty, she will hear "Suzaaaaaaaaaaannnnne!" Worse still, when the aides to not respond as quickly as Mam-ma thinks they should... she has begun to rattle her bed rails! I told Suzanne that maybe we should get her a tin cup, like you see the prisoners scrape across the bars of a jail cell in the movies. She replied, "Don't you dare!" I would never do this, and it's not funny... but I can just see my grandmother.
So on one hand, we feel like maybe she cannot help the fact that she hollers. But when you know enough to call the aides by name and rattle your bed rails... it's hard to believe you are clueless.
I am assured that there are others who do this sort of thing... and worse. But they are not my grandmother. And they don't have a loved one working there. It's a dilemma... but my sister insists that she wants Mam-ma kept in this facility - that she is managing just fine. So we remind Ma-mma often that she must not holler... that it doesn't make the aides come any faster or more frequently to check on her. And I'm waiting for the day the administrator calls to tell me her bedrails have been removed.
My grandmother has come so far in the last two months... farther than I ever dreamed she would when we left the hospital in early May. Still, she is declining, in many ways. I am prepared for the possibility that she might continue to improve enough that she no longer qualifies for Hospice care at this time. But I feel like the far more likely scenario will be that she falls...develops an infection of some sort... or overheats sitting outside on the porch. Every day is different. Meanwhile, we all agree that we should keep objects that can be clanged against the bedrails at a hefty distance. If Mam-ma figures out how to make noise with one of those, we're sunk!
Wednesday, July 25, 2012
Monday, July 16, 2012
When one of the aides or I would ask what Mam-ma needed, she would say, "Nothing." But she would NOT stop hollering. I finally told her, "You are going to keep that up, and the aides are going to decide you don't need anything... then when you DO need them, they are not going to come see about you as quickly. You have got to stop that hollering." She replied, "Okay." And the next breath included, "OH! OH! OH!
I left feeling so frustrated and defeated. I didn't know how to stop this. The nurse and the aides (including my sister) told me that Mam-ma practically SITS on her assist button, and when they go to answer the call, she doesn't need anything. And if she sees an aide or nurse pass her doorway, she calls out to them by name. My sister started closing the door far enough that Mam-ma could not see who was passing. Mam-ma told her plainly, "LEAVE THAT DOOR OPEN!"
Tuesday morning, I met the Hospice social worker at Southridge. She reminded me that I must take care of myself... that Mam-ma is not the only one at the facility who hollers - not by a long shot! We talked about how Mam-ma is physically improving... can put weight on both legs, transfer from chair to chair with help, and even pedal herself somewhat in the wheelchair. But she doesn't have the cognitive reasoning to go with this, so she has no clue she can't do these things by herself.
As the social worker and I returned to Mam-ma's room, an aide stopped me and asked if I could ask for some "pull-ups" for Mam-ma to wear during the daytime instead of adult diapers. They will be so much easier, she explained. I looked at the social worker, and she said, "All Hospice provides are those diapers with the tape tabs." I told the aide I would ask if the ALF would provide the pull-ups. I knew that before we went on Hospice Care, the ALF provided one case of Depends per month.
Since Medicaid pays Hospice for the diapers and/or Depends, they will not pay for both. So I returned to the aide and told her - and other aides standing nearby - that Hospice only provides for the diapers, so we would use those. She flatly looked at me and asked, "Can't you go to Wal-Mart and buy pull-ups?" I told her I could... but I'm not going to. I cannot afford to pay for something that is already being provided. She looked at me as if I was the Wicked Witch of the West, and said, "Well, I just asked because Polly is complaining that the diaper tape is uncomfortable. I just wanted to make it better for her." Now I was the uncaring caregiver!
I told her I could buy pull-ups, but I was not going to at this point. Polly is on a fixed budget, and between her room and board and her pharmacy bill, she barely has a dime left each month. I was secretly thinking, "my reasons are really none of your business... you have no idea what my out-of-pocket expenses are already." But I held my tongue and walked away, feeling as if the girls were talking about me like a hot wind on my neck!
I left the ALF still feeling frustrated at how lonely and needy my grandmother was... and how helpless I am to address her needs. I know she has feelings... and I want to honor those as best I can. I saw the administrator on the way out and told her about the "pull-ups" incident, and she shook her head and said, "Don't worry about it. Actually, I think those adult diapers are probably better for everyone." I thanked her for the encouragement and drove away. I vowed to stay away and do something for myself... some "textile therapy" was in order! And sew I did - for the next two days!
Meanwhile, my mom visited on Wednesday, and while she was there, Mam-ma was really sick with diarrhea. She had to be changed - and practically bathed from head to toe - twice. The aide asked Mom about pull-ups. Mom told her we were not having that discussion again. She and I both discussed later how pull-ups would have made a bad situation even worse in this case. At least the diapers un-tape and remove without having to slide down the legs! You fill in the gaps in your imagination on this one!
On Friday, I attended the funeral of an elderly friend, did our grocery shopping and some other errands, and then I braced myself and headed to Southridge. Mam-ma was sitting in her recliner... dozing. She roused when I entered the room, and we visited a few minutes. We were having a beautiful, sunny afternoon - with unseasonably clear blue skies filled with fluffy white clouds. And it was not terribly hot nor humid, like it has been. Mam-ma said she would like to go outside and sit on the porch. So I called her aide to come and help Mam-ma to the bathroom and put her in her wheelchair. Then we went to the porch and sat.
Another resident joined us... until her son arrived for a visit. As they walked back inside the facility, Mam-ma said, "I tell you what... I think it's wonderful when people come to visit these people down here." Apparently I was invisible! We sat nearly 40 minutes, until I noticed Mam-ma dozing. I asked if she was tired and would like to return to her room. She said she would. So we sent back to the room, where the aide appeared and said, "That's twice she's been out on the porch today." She was not sure if Mam-ma had help getting out to the front porch Friday morning - or if she had peddled herself. "You know, she can punch the button to open the door and take herself!" she told me.
Then she started asking again about pull-ups... or so I thought. I flatly told her, "We are not having this conversation again." She nicely said, "Oh... well, okay... I was just going to say that these diapers are too small." I apologized profusely... someone had brought a package of the wrong sized diapers, and indeed, they were too small. I called Hospice and asked for a package of Medium-sized diapers. Before I left the facility, a Hospice aide arrived... with a package of LARGE diapers! The aides laughed and said they would "make do" over the weekend, since the Hospice office was now closed.
So I told Mam-ma I was leaving, and she said, "You're not gonna stay?" No, I had been there nearly 2 hours, and I needed to go home and make dinner. "Well," she said, "I sure would like a Coke!" So I got a can of Coke from her refrigerator and put a straw in it." Then I told her I was leaving, but I would be back. She said, "Well, don't stay away too long!" "I never do," I told her.
Sunday, I visited again, and I took more sewing. Mam-ma was in her recliner, and she looked neat, clean, and alert. Her first words to me were, "Why can't I have pull-ups?" I sat down on her bed and told her, "Because you can't afford them." I knew that one of Mam-ma's biggest concerns is that nobody be out any money for her... and I figured this would be the best answer. I continued... "Hospice provides the diapers and the pads." We have to pay for pull-ups - Hospice doesn't have them. I added it up, and you would use about $120 in pull-ups a month. And that's just too much. I'm sorry." She nodded in agreement, and I thought we were done with that.
I had brought more sewing to share, and Mam-ma enjoyed looking at the toddler outfits I had made for Timothy and Zola. And then yet another aide came in to check on her, and she sat down in the floor and said, "I want to talk to you about pull-up for Ms. Polly." I told her, "We are just not going to discuss this again... Hospice does not provide them, and she does not have the money to purchase them herself... it's too expensive." I explained that I am not being mean... I really feel the diapers are best. I told this aide about the diarrhea incidents on Wednesday and asked, "Do you really want her wearing a pull-up when that happens?" This seems to happen about once a week... mainly because Mam-ma insists on Miralax several times a week. She is of the opinion she needs to "go" at least once - maybe more times - per day!
I told the aide I had "put the pencil to it," and pull-ups would cost about $120 per month. She said, "You can buy a package of 20 at Dollar General for $6-8." I told her that I might look into that, but I still thought it would be too expensive. She replied, "I don't mean to be mean or anything, but if it's okay with you, I would like to buy Ms. Polly some pull-ups." I told her, "It is NOT okay with me... I don't want you spending any of your money on Ms. Polly. If any pull-ups are purchased, I will buy them. But 20 pull-ups will not go very far. Even if she uses 3 or 4 a day, that won't last a week." The aide said, "But she probably won't use one pull-up a day! If the aides take Ms. Polly to the bathroom frequently, she is not having any accidents all day long." She was insistent about this... that Mam-ma was improving and only had problems at night - and she could still wear the diapers for this.
So I asked, "If this is true... then why can't we put down the pads provided by Hospice in Mam-ma's wheelchair and recliner, and put her in her own panties during the day? If they get wet, you change them and toss them in the laundry." The aide thought that would work. She asked Mam-ma, "Would you like me to take you to the bathroom now and then change you into your own underwear?" Mam-ma said she would like that. So while the aide helped Mam-ma to the bathroom, I put pads everywhere she sits during the daytime and made notes for the wall saying, "Polly wears her panties during the daytime and diapers at night. Please be sure she has pads in her chairs."
The nurse came in, and we explained what we were doing, and she said, "I'm sure that her own panties feel much more comfortable than even a pull-up!" I reminded them both that this will not be fun when Mam-ma has diarrhea... and it may not work if she starts having accidents. But they wanted to try... and so did Mam-ma. So hopefully there will be no more discussion about me purchasing pull-ups! However, the aide and nurse no sooner left the room than Mam-ma asked, "How much is this gonna cost us?" I shook my head. "Mam-ma... the panties are YOURS! Hospice provides the pads you are sitting on. It won't cost us a dime!" I don't know if she believed me or not.
I sat a little while longer and made my "goodbyes." I left feeling like Mam-ma was better for the moment - certainly far better than the previous Sunday - but a few "good" days do not give me a false sense of hope. I also left feeling like the staff thinks I do not care about my grandmother because I was unwilling to purchase pull-ups for her. They have changed from "it's easier to help her to the bathroom with a pull-up" to "it's more comfortable... Polly says the tape bothers her." The problem with this is that they do not cinch the tape tightly, like you would do for a baby diaper. Polly complains about them being to snug. So I am sure the diapers shift around throughout the day and do not feel comfortable. Hopefully the panties and pads will work... and save all of us some grief!
I am refusing to own this judgment by my grandmothers' staff. As the Hospice social worker pointed out to me... they do not know our history. They don't know Mam-ma Polly like I do... the antics she is capable of instigating... and how much I do for her - how much I love her. They are judging this situation unfairly, based solely on what Mam-ma "tells" them and what little they observe. And I am not angry at them... I'm just a tad weary these days... and I guess a little "battle-worn!" It's nothing a day or two of "textile therapy" can't fix... and some new pictures of my babies.