Yesterday we met with another adult foster home provider in Mary’s hospital room. I toured their home after work; it is 10 minutes from my office and 25 from home. It would be easy to stop by after work – only 5 minutes away from my usual route. The home really is as lovely as their website showed. It is run by a nurse, and they have been there since 2001. They have three cats who socialize with the residents – something Mary would love! They’ve had vent patients there for 5-10 years, which tells me they have stability and good care, and that the patients were happy there. I called Mary and she agreed so I left a message last night with the hospital social worker to tell the home to go ahead and start the paperwork. In the meantime, we won’t stop looking because anything could happen during the paperwork process (they have to put a packet together and petition the state, blah blah blah and it could take 2-3 weeks).
Journal entry by Denise Allen —
Today marks five weeks that Mary has been back in the hospital. Nine weeks since her trach surgery.
Yesterday I found out that my fears about last week’s group home were well-founded – they backed out after never even starting the paperwork. We are back to square one. This is a real disappointment in so many ways, but as I told a couple of people yesterday, our intention has been to find the best possible place for Mary to live where I can easily visit her often. I have to trust that this wasn’t the best place, despite what it looked like on the surface. The social worker will be making calls again today to the seven other ventilator homes in Oregon to see if there are any others that might have a bed available that didn’t have one two weeks ago.
Journal entry by Denise Allen —
We are almost eight weeks into Mary’s hospital stay. Mary has been bed-ridden for three months. She has had several UTIs, and may have another one brewing at the moment.
We were able to Skype with all 3 kids and the grandson on Mother’s Day, although Mary slept through most of the weekend. She has been awake late at night and sleeping most of the day. It is partly due to lack of stimulation. I took in a CD player with some of her favorite music and will be contacting the county home-bound library for some books on CD for her.
As of yesterday, there are no potential group homes with beds available. There just are no beds available.
Journal entry by Denise Allen —
Today marks 3 months since Mary was first hospitalized; tomorrow will be 3 months since her trach surgery and 2 months since her return to the hospital. The anxiety seems to be under control – what I’m seeing now is more like depression. Communication is getting more challenging, and as long as she is hospitalized, we can’t get the eye-gaze device expert to work with her because she can’t work in the hospital, she can only see people on home health. The lack of communication is frustrating to Mary and she is really isolated and isolating. I’m exhausted from running from work to the hospital, spending weekend days at the hospital, trying to survive on 5 hours of sleep (if I’m lucky). Only the basic housekeeping chores have been getting done: laundry and dishes. I don’t think I remember what a clean house looks like.
I’m hesitant to post this because I’m afraid of jinxing it, but we did meet with another adult foster care home yesterday morning. This is #3. There are only 9 in Oregon, and at least 2 of them are 2 hours away. This one is not far from my route between work and home. I’m cautiously optimistic; I’m honestly afraid of getting my hopes up again.
Update on Mary’s care plan: The hospitalist called yesterday morning to let me know that they suspected she has another UTI. They had changed out her catheter, and are waiting for the cultures to come back today before determining treatment due to her multiple allergies/sensitivities. She also let me know they were planning to do a chest x-ray, so I was able to share with her a method to do that most easily without injury to anyone (use the draw sheet to pull Mary forward, then slide the film between the bed and the draw sheet).
I walked into the hospital last night to find these posted in her room. The nurses actually were following the schedule, and talked with me about clarifications and adjustments. I didn’t have to yell at anyone, and I actually wasn’t stressed out when I left! I wish we had set up a Care Plan within the first few days; it might have avoided a lot of issues.
Here is the care plan as it stands. I am sharing this in case anyone else faces something similar so that you have an idea of what to ask for.
You can’t get Physical Therapy in the hospital unless it is to retrain/recover ability to transfer etc. No passive Range of Motion (ROM). The family (!) is responsible for that. Yet home health can do it? Mary is in increasing pain and has increasing contractures due to being bed-bound for the last seven weeks, and they won’t/can’t do anything except suggest I do ROM with her. Excuse me? My time at the hospital is limited. There are about 20 hours in the day when I am not there. I asked for a Care Team meeting, cross-disciplinary, with a Patient Advocate – which apparently is someone from Quality Management????? I am so tired of fighting this broken medical “care” system!
Journal entry by Denise Allen —
Care Team meeting at the hospital today. I have a LONG list of issues/concerns/complaints. I asked the charge nurse last night, “Who is coordinating her care?” Crickets. “Is there someone coordinating her care?” Silence. “I’ll take that as a no.” She says, “The nursing staff.” Really? When it’s constantly changing and she had yet another new nurse yesterday who couldn’t even tell me when she last had Zofran? When I asked for a copy of her current medication list, I got a hand-written list 3 1/2 hours later, with no notes as to when she last got the medication. And some of it was STILL wrong after nearly three weeks. Which is why I asked for it. I asked our local ALSA chapter social worker to attend, because she will be more diplomatic than I can be at this point.
Mary’s been in the hospital 5 out of the last 7 weeks, all of it in the SAME room. I asked for a patient advocate, and was told, “oh, quality management. We’ll have them arrange the meeting.” My first question will be, “When did this hospital veer away from patient-centered care? A patient advocate and a quality management representative are NOT the same thing. A quality management representative is trying to avoid lawsuits, not make sure the patient is getting their care needs met.”
Post-meeting update:
Everyone was there except the Quality Management representative. I muttered under my breath, “They might wish they had been here.” I hope now at least everyone is on the same page. We are coming up with a “care plan” for her daily care – a schedule the nursing staff can follow. One nurse approached me a little later and said “When I come back (from my days off), I’m going to request I be on Mary every shift”. We love him! They kept saying how they are acute care and not used to long term care. I told them that I don’t want this to turn back into acute care, and that’s why these issues are important. They’ve got at least 3-4 more weeks to find a way to figure it out. I told them communication is the biggest issue – they aren’t using the communication boards with Mary or showing the nurses how to use them, they aren’t communicating between departments or sharing crucial information with new nurses taking her care, and they definitely aren’t communicating with me. I said “I’m here every day. I’d rather not be (because I am exhausted), but I feel like I have to be to make sure she is getting care.”
After the meeting, Mary was exhausted, then started saying she couldn’t breathe and was having sharp chest pains. Goodie. RT said nothing wrong with vent or her lungs. Had the charge nurse page the hospitalist, who ordered a stat ekg, which came back normal (sinus tachycardia at about 117 bbm) as I suspected. That relaxed her anxiety a little and they gave her some ativan. I finally got to work at 2pm.
Mary has a UTI and an infection at the trach site. We are waiting for her to be admitted. Hopefully the infections are at least part of the reason for her anxiety, nausea and pain, and antibiotics will help resolve some of that.
I won’t be staying overnight this time; I told Mary I’m pretty sure the nurses will see me coming and whip right into shape. I told her the magic words if they don’t: “nurse manager” and the very powerful “patient advocate”.
Journal entry by Denise Allen —
Mary is still in the hospital. She has completed the 7-day round of IV antibiotics, but now is dealing with a case of thrush. We are also making more adjustments to her anti-anxiety medications in the hopes of both decreasing her anxiety and keeping her more alert. The last couple of days she has actually been listening to music in her room when I arrived after work – something she was not interested in for the first month of living with the trach. She still is not very interested in watching TV.
She is still communicating by mouthing words and us trying to lipread her. The hospital speech therapists were asked to help train her on the Tobii (eye gaze system) and got sidetracked for a couple of days on working on her speech abilities – they were trying a Passy-Muir valve on her trach without checking with me, and which caused her extreme anxiety because she could feel the change in her air intake. I had the ALS neurologist rein them in, and we are now waiting for approval to have the Tobii specialist from another hospital to come and visit her to work with her.
After nearly two months of looking for caregivers, we still only have our amazing Morgan. Mary’s care is so complex and complete that it is draining the nursing staff at the hospital – they have no idea how I was able to care for her basically alone (Morgan was out of town) for 15 days. We have decided that since we cannot find qualified caregivers (they just aren’t out there – others with ALS are having the same problem in the Portland area), we will be looking for an adult foster home for Mary, where she can have 24-hour care with multiple staff instead of one or two people. One of the hospital social workers is working on that. There are not many places that take patients on ventilators, and even fewer who will take patients who are functionally quadriplegic as Mary is, and then the issue is finding one that has a room available. Until we find a place, Mary will be in the hospital. I am asking for prayers for the best possible home for her, in a place where I can easily visit her as often as I’d like, where I can trust the staff to work with me to provide the best possible care for her.
My last day of work was February 16th. It’s been a month since then, and nearly 4 weeks since Mary had her trach procedure on February 20th.
We thought we had 2 new caregivers lined up. I had done phone interviews with both, and an in-person interview with one of them at the hospital. We did an in-person interview with the second one the Sunday after we got home. She was supposed to start two days later for a few hours to start getting used to Mary’s routine. She emailed me Monday morning and said she “didn’t have the hours” we needed. I emailed her back and asked if she had any hours she could give – no response. The other one was supposed to start on March 9th; she got lost and didn’t have my phone number with her. She ended up at another appointment a couple of hours later, and I texted her directions from there. That was the last I heard from her; I emailed her that night and asked if she was still interested in the position. She replied that her stepson had passed away that day. Ok, I’ll give you that one. Plan B: she was supposed to start today. I got an email this morning that she and her husband decided it was too far away and she wouldn’t be taking the position.
So we are back to one caregiver, and starting the search from scratch again. I am half-way through my FMLA, and scared to death we won’t be able to get this resolved before my FMLA runs out.
We are in desperate need of qualified, committed caregivers for Mary to appear as soon as possible. I need time to train them to Mary’s specific care needs and communication. We ask for your prayers, in whatever form they take, for these caregivers to be shown to us.
It’s been a rough couple of days, trying to get settled in, trying to get Mary settled in, new routines and new needs for her care. No caregivers since we’ve been home, except I was able to rope M our favorite CNA into working a couple of hours when she came by to visit on Friday. She helped me change all the sheets on Mary’s bed, which is a challenge since Mary can’t be turned or rolled.
As for visitors, on Thursday, Michelle stopped by for an hour or so and brought me some hamantaschen and visited for a while. On Saturday, Tammy came by for a visit.
Today has been a busy day. We had a new caregiver come by for an in-person interview; it went really well! Mary liked her, and she had great energy. The plan is for her to start training with me on Tuesday. While she was here, Crystal came by with some groceries, took Rafi for a bit of a walk, swept and mopped the kitchen and bathroom floor and vacuumed the living room. She requested a “to do” list for next Sunday and threatened to bring me sushi for dinner some time this week 🙂 Our neighbor Margi, a respiratory therapist, stopped by too to check on Mary, visit, and take a look at Mary’s ventilator. She stayed while I did Mary’s trach care, and took a look at Mary’s trach and let her know it appears to be healing well. I think that was a big relief for Mary. Margi promised to send me her schedule for the month, and said I could call her any time with questions, even when she’s at work.
Tomorrow, Monday, M the CNA will be back and will be training our new caregiver/CNA G. Then the home health nurse is supposed to be coming by also.
I’m still looking for a couple more caregivers, and work this month for me is going to be questionable, but at least we are moving in the right direction. Lots more phone calls to make tomorrow for Mary’s care.
Apologies to those of you who have called and I haven’t been able to answer the phone. I haven’t been on line much either, since it’s just me right now. I’m hoping that will start shifting, so that Mary can have consistent caregivers and I can do a few things to take care of myself so I can be better for her, as well as move toward returning to work as soon as her caregiving has some stability.
Yep, still in the hospital.
They did manage to find staff for last night to sit in the room and monitor everything. This morning, they did another Arterial Blood Gas test, and the results weren’t as good as we had hoped. They had to change some of the ventilator settings. They repeated the test a couple of hours later, and it was better but still not in the target range. Soooooo we’re stuck here another night. And they are still having to staff a nurse in this room with no other patients. I’m sure the charge nurse isn’t happy, but too bad. I’m not happy either.
One positive note: the caregiver who came by yesterday for an in-person interview went well! We are looking forward to having her at the house to start training. I’m waiting to hear back from our other caregiver who just got back from a vacation to let her know what’s been going on and the updated plan.
We invite your prayers and thoughts for a successful ABG and finally a trip home.
Journal entry by Denise Allen —
Mary’s ABG numbers were steady Tuesday afternoon, Tuesday evening and Wednesday morning. Although the pH still wasn’t as good as the doctor had hoped, she attributed it to anxiety and went ahead and discharged Mary with instructions to continue to monitor her ventilator readings and call with an update to see if the ventilator settings need to be changed again.
Wednesday afternoon was hectic. The respiratory therapist from the DME beat us to the house with bags and boxes of supplies for the trach and vent care. She made sure everything was working right, and I asked a lot of questions and wrote down a lot of info.
Meanwhile, the phone was ringing off the hook from various home health coordinators trying to restart services.
Judy was gracious enough to pick up Rafi and Mango from the vet (where they were boarding), and 2 weeks’ worth of mail from the post office and deliver it here to the house. That was a HUGE load off of me.
Mary rested most of the evening, but did wake up with anxiety attack around 11:30 pm. By the time we were settled back down it was after 1 am.
Thursday morning I slept until the phone rang at 9:45 with yet another call from home health services. Then I was up doing laundry until the home health nurse arrived at about 12:45. He was here for a couple of hours, by which time Mary was ready for another nap, and I still had several loads of laundry to catch up on.
It is now 6:15 and she is sleeping again. Her anxiety level today has been less, although her breathing is still a little rapid. There have been several more phone calls from home health, emails to the local ALS Association chapter social worker, to a new caregiver, a potential new caregiver, and the DHS worker who has to approve the caregivers.
I’m finally fixing something to eat. I did get coffee first thing – I went with the single serve instead of making a pot I knew would get cold before I got to it. I also munched on some pita chips and hummus around 4:30. It’s time for some real food!
I (Denise) totally went off on the charge nurse this morning. The Durable Medical Equipment provider came by to switch Mary’s Trilogy from bipap mode to ventilator circuits and settings. The charge nurse said to the nurse and DME provider out in the hallway, “I didn’t know you were coming. We can’t put her on it today it will have to be tomorrow – she’ll have to be back on the hospital vent tonight.” I went out to the hallway and said, no, the plan was for today. She’s supposed to be discharged tomorrow. This has been the plan since Friday!
The case manager joined the conversation too. Somebody dropped the ball and didn’t schedule extra staff for tonight – their system can’t monitor the Trilogy from the nurses’ station, so they have to have a nurse in the room monitoring overnight. The charge nurse finally went off to find someone to come in for 7pm tonight. The nurse came in and talked to me and said this charge nurse is like that. I told her we’ve been in THIS room for 10 days, right across from the nurses’ station. I’ve seen this guy around, I never knew he was a charge nurse, he’s never even made eye contact with me let alone step foot in the room or meet Mary. The other charge nurses come in throughout their shifts and check on us. I also vented to her about them changing staff on us every day (she’s new this morning to Mary). She went through Mary’s chart notes and read off the name of every nurse she’s had in this unit so I could make a list and make specific requests if/when we’re back here. I know I’m dealing with frustration, lack of sleep and my own anxiety about this whole thing, but seriously, don’t make us suffer because you idiots can’t communicate! About an hour later, the charge nurse came in to Mary’s room (for the first time EVER) and said that everything was set up for tonight. I could smell the cigarette smoke on him. So, he’s the charge nurse on a Respiratory Care unit, where they are trying to convince COPD patients to quit smoking, and where there is a big sign that says “NO SCENTS OR PERFUMES” and he can be in here smelling of cigarette smoke?
I can’t wait for the “Patient Satisfaction Survey”.
On another note, we are expecting a potential caregiver for an in-person interview in 30 minutes, and I had a phone message from another potential caregiver. I also contacted our neighbor who is a hospital Respiratory Therapist, and she is indeed very familiar with trachs and ventilators and is willing to be a resource for us out in the boonies where we live. Just our luck to share a property line with her!
The last couple of days, Mary’s anxiety level seems to be improving. I did have a little scare in the middle of the night last night when the vent alarms started going off and two people ran into the room as I rolled out of the cot. She was still sound asleep but hyperventilating (40+ breaths per minute instead of 13) and some other numbers were about half of what they should have been. Turns out she had been “rained out” – too much water in the tubing to her ventilator. This is very similar to getting “rained out” on an apnea machine. Once the Respiratory Therapist drained the excess water and made sure she hadn’t inhaled any of it, all was quiet again and back to the new normal. There was another bit of info to add to my toolkit. I’m very glad it happened while we were here in the hospital so I’ll know what to do next time.
On another note, with the tentative plan to discharge her on Tuesday, I’ve been learning trach care. I learned how to suction out her trach yesterday, and I’ve been doing it today as well. The nurse on duty today was here yesterday and she said she had watched me suction enough that she is comfortable with me just suctioning Mary and not calling in a nurse unless something else is unusual. Yesterday, I changed the inner cannula for the first time, and I just did it for the second time. That’s a little more challenging than the suctioning, since I have to go more by “feel” when placing the cannula, and I have to make sure the ventilator line is securely reattached. I’m sure once I’ve done it a couple more times, it will be second nature. I also changed the dressing around the trach stoma by myself today. Progress!
We had quite a few visitors today. Mary’s brother and his wife drove down to visit for a while. They brought some more pictures to show Mary, and he asked some questions that gave me the opportunity to share with him the early signs of ALS. He knows he has a 50% chance of being “predisposed” for ALS with both their mother and Mary having ALS, but he chose not to have genetic testing done as of now. I mentioned that his daughters could also have it, and saw his eyebrow raise just a little. I’m glad he’s been giving this a little thought, because Mary and I weren’t sure he understood the implications of Mary’s diagnosis.
Just as they were getting ready to leave, another of Mary’s old friends that she hadn’t seen in 20 years came by. They stayed for a little while and promised to come back in two weeks. Mary was able to communicate a little with all four of them, nodding, smiling, winking, making faces, and mouthing words. About a half hour after the last of the visitors left, her ALS neurologist, Dr. Kimberly Goslin, stopped by to check on her. I filled her in on the discharge plans and she stated that we both actually looked more rested than the last couple of times she’d seen us. (HA!) She also mentioned that I looked less stressed; I told her she should have seen me last Friday when they wheeled Mary off to the operating room. She said she is hoping to come by again on Tuesday morning.
The pulmonologist was just in, and again expressed concern about the amount of morphine and ativan she is getting. I assured him we were working her back toward the doses she gets at home. He really doesn’t know her history (her usual pulmonologist is out of town). I told him yesterday that her morphine dosage is exactly what her home prescription is written for. I’ll give you that she’s not been taking ativan regularly at home, but she does have it. He doesn’t know that Mary already suffers from anxiety and has been managing this entire disease process for the last 14 months without taking any anxiety medication. I’m not overly concerned about it, and Dr Goslin didn’t seem to be either. So one of my projects is to run down to the car to see what the ativan had been written for on the home version so i have a target to make the pulmonologist happy.
It’s been a week since Mary’s trach surgery. Physically, she is still recovering well. Last night and this morning, she woke up without an anxiety attack, kept calm and smiled. Later today though, we had a couple of times where mucus was building up in her trachea, and that caused quite a bit of anxiety until we got it suctioned up.
Last night I interviewed a potential caregiver, and this morning I interviewed another one. I plan to do in-person interviews with both of them, hopefully while Mary is awake, and see how it goes.
This morning, the respiratory therapist had me change the inner cannula myself, and I suctioned out her trach several times today. I’ve been watching like a hawk and asking a ton of questions for the past week, so I was ready to try it. I’ll be taking on more of that care with supervision over the next couple of days since once she’s back home, I’ll need to be doing it.
If things continue to go well, the company that provided Mary’s Trilogy will come out on Monday to change it to a ventilator, then Mary will spend the night on the Trilogy with a 1:1 nurse monitoring it since it can’t be monitored from the nurse’s station. Again, if all goes well, the plan is to take her home on Tuesday.
I’m a little concerned about the caregiver situation still. We still need at least 2 more people, preferably 3, to cover the hours we need for Mary’s care. Her home health nurse is working on some of his connections to see what he can find out, and I’ve made a list of people to cold-call and see if they are interested/available.
I spent some time today getting some of the features set up on Mary’s Tobii: her Facebook and Gmail accounts are set up now. I am still struggling with getting Skype to work without crashing everything, and I need to get her phone synched to text message through the Tobii, but making progress. I also spent several hours going through and cleaning up her gmail inbox, which had over 7000 emails in it when i started working on it a couple of weeks ago. It’s ok if you tell her, I’m following the guidelines she gave me: what to file and where, and what to delete. I’ve got it down to just under 4000 emails now, nearly 2000 of which have never been read (!) Good thing they are mostly mailing list notifications that can be deleted!
Tomorrow we’re expecting a visit from Mary’s brother and sister-in-law, and they may be bringing one of her old friends.
