Professional Caregivers

Caregiver Journal – Learning trach care

Journal entry by Denise Allen — 

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.
By bansagart, ago

One week post-op

Journal entry by Denise Allen — 

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.
By bansagart, ago

Caregiver Journal – Adapting and Making Plans after Trach Surgery

This is our fifth night in the hospital, the fourth since Mary’s surgery. The last two days have been busy; we had several visitors yesterday who brought food and clean laundry and even some laughs, and a chance for Denise to take a shower! The two nurses who worked with Mary on Saturday after she was moved out of ICU requested to work with her again yesterday, and she also had the same Respiratory Therapist, so that helped our comfort levels. Mary had been experiencing quite a bit of anxiety adjusting to breathing through the trach tube instead of her nose; suddenly unable to feel any air moving in or out makes it feel like you aren’t getting any air. By Sunday evening, we started backing off on the anti-anxiety medication so that Mary would be able to start adapting to all these changes while awake. She slept a little better Sunday night, so did Denise.

Today, Monday, started off much busier. Things never stop in a hospital, but for some reason there is more activity during the week. A new nurse, a new respiratory therapist, a new pulmonologist… so much to re-negotiate. A nurse case manager stopped in to talk about the plan after Mary is able to leave the hospital; her insurance and the staff here feel it is not necessary for her to go to the long-term care facility. Their plan is to discharge her to home as soon as everything is in place. This means the biggest issue is once again caregivers.

I called her DHS caseworker to let her know her status has changed and ask about increasing her hours for in home care. I’m waiting for a response on that.

Our one current caregiver is out of town on vacation this week. I have been trying to find other caregivers, and finally got responses from two potential caregivers over the weekend, at which time I asked for their resumes and told them she was in the hospital. I contacted them both again today to let them know she would be going home sooner than we had originally expected and that I would like to start interviewing this week. Fingers crossed! I also need to call the one agency that is willing to work with us, and let them know the current status and see if they have been able to find anyone who can work with Mary.

Please send your positive thoughts and healing energies for Mary’s anxiety to be relieved and for us to find the right caregiving team for her to safely come home as soon as possible.

By bansagart, ago

Caregiver Journal – After Surgery

Journal entry by Denise Allen — 

It was now Friday afternoon. Morgan stayed for an hour or so with Mary and I. The ICU staff was great – the nurse brought in a reclining chair so I could stay with her overnight. Originally they were going to have me leave at shift changes (standard policy) but after they reviewed her medical history, med list and allergies, and realized she had no way to communicate since she can’t move her hands to write at all, they decided to just shut the door to maintain patient privacy while they made reports.
Mary and I struggled to find out how to communicate because she wanted to say so much more than answer yes/no questions that we had planned for. I was lipreading her and interpreting for the nurse, doctor and respiratory therapist. I finally ended up writing out a letter board. After several frustrating rounds, I explained to Mary (after slowly spelling them out) that “crackle” and “struggle” are hard words to lipread. She did have (and continues to have) quite a bit of anxiety. Every time she woke up, she would start panicking that she couldn’t breathe. We would explain to her that all her vitals were good, that she needed to breathe through the trach on her neck, that she wouldn’t be feeling any air in her nose or mouth if she tried to breathe that way. This continues to be the hardest part – it is the one thing that all the trach patients we talked to mentioned – the difficulty and anxiety around adapting to a new way of breathing.
I spent Saturday morning working my way through Mary’s list of phone calls, texting and emailing people to let them know, then posting on Facebook. She slept through it all.
On Saturday afternoon, they told us she would be moving back to the Respiratory Care Unit once they shuffled some patients around so she could be right across from the nurses’ station. Michelle dropped off a package that had been delivered to work and also dropped off refills of the prescription the hospital doesn’t have. Kathy came by with a care package, and took laundry home with her to wash for me. Brenda brought another care package and went out to get dinner for me. Kathy, Brenda and I sat in the family waiting room while they transferred Mary to her new room, then I went in first to make sure everything was there that was needed. This time, I had the Kangaroo Joey pump in my arms, and the ICU nurse personally brought over her prescription, and all the equipment. Kathy stayed a while until Brenda came back with my dinner, then headed out with laundry. Brenda stayed a while to make sure I was eating (a challenge since we arrived), then I sent her home. It was close to midnight though before the cot arrived for me to sleep in.
By that time, we had realized Mary was running a fever that was slowly going up. Labs were taken and we waited for results. The nurse consulted with the charge nurse, and it was decided to continue monitoring her closely before taking action since she had just finished a Z-pack last week and has so many allergies. It was a long night. Finally her fever broke on its own some time around 4am. I woke up as the shift change rounds were happening, tried to sleep a little longer, but Mary woke up again with some anxiety and by the time we got her settled down again, the caffeine withdrawal headache was in full force. I realized I had only had one cup of coffee yesterday. Egads! I ran downstairs for a scone and coffee and came back up to her room.
We are expecting a few visitors today, and I am hoping while a couple of them are here I will be able to make a trip to the car to put some things in and bring some things back, and take a shower.
By bansagart, ago

Caregiver Journal – Countdown to Trach

ER

Journal entry by Denise Allen — 

Last Wednesday I got a call from the caregiver that Mary was having trouble breathing. Off to the ER where she was diagnosed with bronchitis and given antibiotics. Since then, we’ve been using the suction machine to clear secretions.

Sunday night, she woke up in the middle of the night with a lot of mucus buildup. I woke the caregiver up to help. Two hours later we had it cleared enough for her to fall back to sleep.

Round 3

Journal entry by Denise Allen — 

We finally made it home about 3 hours after my last post, 8:30 on Wednesday morning. She stayed in bed all day, sleeping, resting and watching tv. I got a couple of hours of sleep. Thursday morning, the caregiver and I got the hoyer sling under Mary just before 7:30am in case she wanted to get up later since I would be alone with her all day. She was still tired a feeling a little congested. As the morning passed, she started to feel more sinus congestion and complained that it felt like mucus was building up in her throat again.She said she thought she had a cold.
I called the ALS clinic and explained what had been happening. We were told we had done all we could do at home, and that it was time to make a decision. Mary told the clinic nurse to get things going for the tracheotomy. I started packing up everything we might need for the next few days, and arranged to have the cat and dog boarded at our vet’s. The paramedics and ambulance arrived and we loaded Mary up. I took all our bags in the car, stopping to drop off the animals, and followed them in to downtown Portland.
The ambulance arrived about 15 or 20 minutes before I did, and apparently there was quite a bit of confusion. They took her to ER, which was the plan, but the ER sent her up to Short Stay saying she was scheduled for a procedure.
After tossing her around a bit, they sent her back down to the ER. One of the paramedics called me as I was parking to let me know about the runaround (his word!) and which room in the ER she was in. I walked into the room to see a nurse and an xray tech trying to pick her up to slide an xray film behind her, with her head falling off to the side. I ran in and stopped them, explaining how to move her and how to position the film without hurting her any further. After that got taken care of, they took some labs and started an IV. The nurse said it would be half an hour or so before results came in, so I ran to the cafeteria to get some food to bring back. When I got back to the room no more than 10 minutes later, Mary said that a doctor had been by and talked about the surgery and that he would see her tomorrow at noon. What doctor? No idea. He didn’t talk to the ER doctor or chart any notes. Mary didn’t remember most of what he had said, but she thought he said he was the ENT surgeon. She and the nurse had both asked him to wait for me to get back, but he was apparently in a hurry. Finally, they got her admitted and sent her up to the respiratory care unit.
I went over her medication list a second time, explaining what she was currently taking, asked for a kangaroo pump and formula and some scds for her legs. Hours later, we had the feeding bags, but still no pump or formula. Then we got the pump but the hospital apparently didn’t have any of the formula she is using. They also didn’t have one prescription she needed. By this time, I was fuming at the lack of coordination and communication. Fine. I ran to the car and grabbed the case of formula and prescriptions I had brought. It was after 11pm by the time Mary got some nutrition, and she would be cut off pre-surgery at about 12:30am. She got the meds I had brought, and I asked the nurse to put them in the fridge since the ice packs were now getting warm. Finally around 3am, we both tried to sleep.
CNA Morgan came to the hospital Friday morning, and helped out as we waited for them to take her to surgery. We went round and round with the staff about where Mary would be going after the surgery. First it was ICU, then it would depend on the surgeon and pulmonologist. Then if she was in ICU I wouldn’t be able to stay overnight. Um, just how were they planning to communicate with her? No, she can’t use the call bell. She won’t be able to speak or cry out. She won’t be able to throw something. My blood pressure was rising again.
I refused to sign the procedure consent until I spoke with the surgeon, whom they finally got on the phone. After speaking with him, I said I needed to speak with the anesthesiologist before signing the form, because of Mary’s multiple allergies. I was assured she would be returning to the same room, so off we went downstairs. Hurry up and wait. That nurse came in. AGAIN I went over the meds and allergy list. No I hadn’t signed the release yet. The surgeon came in. No I hadn’t signed the release yet. Yes, I know you’re waiting. Oh, so they changed anesthesiologists last minute? I told Mary “good thing I hadn’t signed yet!” and she nodded. The new anesthesiologist came in. We talked, He actually listened. He answered questions. I signed the form. The pulmonologist assured me she would be going back to her previous room in the Respiratory Care unit and said they would come and get me when she went into recovery so I could help them communicate with her.
When they took Mary for the surgery, Morgan and I went up to her room to put something with her things, and the room had been cleared out. I was furious! We went to the nurses’ station and said she was supposed to be coming back. A very rude nurse replied, “no she’s going to ICU”. I explained that the doctors had all said if there were no complications they didn’t see a need for her to go to ICU. “Well, we don’t have a bed for her now” So where’s all her things (and mine)? Already in ICU. Where I can’t get to them. I was soooooo angry. Morgan and I went down to the cafeteria to grab a quick bite, then went back up to the waiting area. It was less than an hour before my pager went off and I was in a consultation room waiting for the surgeon. The surgeon said it went very well, then explained that apparently the hospital has a policy that all new trach patients go to ICU for at least the first 24 hours. I asked if I could go see her in recovery and she said she was already on her way up to ICU and I could see her as soon as they got her settled.
Why couldn’t someone have just told us outright at the beginning that she would be going to ICU?
None of the equipment that we had fought to get the night before made it to ICU, so once again we had to wait for the Kangaroo Joey pump for her tube feedings, the scds for her legs, formula (which surprise! they DID have in the hospital!) Sitting on a table in her room were all the meds I had told hospital personnel three times already that she wasn’t currently taking. I asked if they had brought her prescription from the refrigerator. That started a 12-hour hunt that had a pharmacist going through every med fridge in the hospital. We ended up giving Mary an alternative that the pharmacist found. They did eventually find it in the ward she had been in. A nurse went to get something out of their lunchroom fridge and saw a prescription in there. Not sure who put it in the wrong fridge, but thankfully they found it!
By bansagart, ago

Caregiver Journal – Feb 2, 2015

January went by quickly

The beginning of January was preoccupied with helping Mary recover from whiplash and a mild head injury suffered from that bad driver. She is still having neck and shoulder pain, so this morning she will be having it x-rayed before going to her appointment at the ALS Clinic in Portland.

We have also been dealing with an ongoing caregiver issues – trying to find caregivers who have the skills and the right attitude for Mary to be left safely with them. This has been an extreme challenge and we are down to two caregivers that fit this bill, one that is on their way out but doesn’t know it yet, and Denise having to stay home to supervise the ever-changing fourth caregiver. This when there should have been five or six all along.

On top of that, the agency that has been providing services for the past year has notified us that they will be terminating Mary’s contract. The reason given is that two of the caregivers have back/shoulder injuries. The owners don’t want the “liabiilty” (read worker’s comp) so they would rather bail than work with the issues – both of these caregivers had previous injuries that were exacerbated by working too many hours with Mary prior to us developing some ways to reduce the back strain on those caring for her.

We are actively looking for another agency that can provide services while trying to find ways to convince the current agency to keep Mary’s case, even if it is only for half of the hours.

By bansagart, ago

Snippets

She sleeps
I watch
Her jaw relaxed, her brow relaxed
I kissed her when I came in
She didn’t stir
 
She sleeps to the hiss-hiss of the ventilator
the whirr-whirr of the Kangaroo pump
the shhhhh-rrrrrr-shhhhhh of the air mattress
The sounds of hospital staff on the other side of the door
have become her lullaby
 
A knock
A nurse
“Time to be turned, Mary”
 
“Hi” she smiles
I ask “Are you happy to see me?”
“Of course I am” she mouths
We pull her up the bed
put pillows under the other hip
the catheter leaked on the chux
it will be bath time soon
 
Housekeeping comes in
I wipe the sleep from her eyes and she drifts off again
 
Penny took Sheldon to Disneyland
“I never go to go to Disneyland”
No, you didnt, My Love
And I am sorry
We didn’t make time for that
© 2015 Denise M Allen
By bansagart, ago

“Clinic”

The gold standard of care for an ALS Patient is an ALS Center of Excellence. There are currently 132 Centers of Excellence in the United States. This is a group of medical providers who have been recognized by the ALS Association as providing the most appropriate, caring and up-to-date care as possible, as well as being a center that participates in clinical trials as appropriate. We were fortunate to live an hour away from just such an ALS Center of Excellence: the Providence ALS Center in Portland, led by neurologist Kim Goslin, MD, PhD, an amazingly caring and supportive person. The Providence ALS Center is a collaboration between the Providence Brain and Spine Institute and the ALS Association of Oregon and Southwest Washington.
 
Attending an ALS Clinic is a marathon appointment that typically happens every three months. It is a four-hour appointment, with no breaks. You see up to 14 providers on the care team in that four-hour period, depending on your level of progression:
 
Neurologist
Pulmonologist
Speech Language Pathologist
Augmentative Communication Specialist
Respiratory Therapist
Occupational Therapist
Physical Therapist
Social Worker
Registered Nurse
Gastroenterologist
Dietitian
Psychologist
Clinical Research Coordinator
Hospice Coordinator
 
It’s a “one-stop shop” where the patient is placed in a room, and the providers come to the patient. It is overwhelming and intense, with some provider visits lasting only 15 minutes and others 30 minutes.
 
After the Clinic appointment, the entire care team meets to review every patient they have seen that day, and they develop an updated care plan. They write prescriptions for medications, equipment and services. They follow up on clinical trials and evaluate who might qualify for which trials.
 
This team approach is the gold standard because it treats the whole person, addressing physical, emotional and medical needs, and has the ability to address spiritual needs as well. This model has repeatedly shown improved quality of life and length of life for ALS patients.
By bansagart, ago

Equipment

Soon after diagnosis, the equipment starts flooding into the home and it just never ends. Here is a partial list of likely equipment that will float through the home during the disease process, in no particular order. Insurance, if it covers anything, won’t cover all of it.

– Bipap/AVAPS
– Nebulizer
– Trilogy
– Hoses and face masks and filters
– Tracheostomy supplies
– Oxygen tanks
– Backup batteries
– Battery chargers
– Generator
– Suction machine and supplies
– Formula by the case
– Wound care supplies
– Feeding tube supplies
– Feeding tube pump (aka Kangaroo pump)
– Cough Assist
– Breath Stacker
– Adaptive utensils
– Neck braces
– Wrist braces
– Compression socks
– Contracture boots
– Leg braces and canes
– Walker
– Manual wheelchair
– Power wheelchair
– Adaptive clothing
– Hospital bed
– Over the bed trays
– Supply carts
– Alternating pressure overlay or mattress
– Pain and anxiety medications
– Medications for a bowel regimen
– Urinals and catheter supplies
– Bidet
– Chux and baby wipes
– Hoyer lift and slings
– Sit to Stand lift
– Lift recliner
– Bath/shower chair
– Inflatable shampoo basin
– Speech Generating Device with tablet or computer
– Letter board
– Eye Gaze Device
– Personal Alert System
– “Nurse” call bells ranging from a hand held bell to a small muscle triggered alarm
– Baby monitor

In the 22 months from diagnosis to death, and for almost a year after, most of these lived in my house. I’m sure there was much more than this. I became an expert on medical equipment that most people have never seen outside of a hospital, let alone had to learn to use, maintain, program and troubleshoot. Caregivers and I figured out how to make equipment work together that the doctors and Respiratory Therapists said couldn’t – then we took pictures and made instruction sheets and took them to the doctors and RTs. When the medical professionals were at a loss, I reached out to my Facebook groups for ideas, then I googled for hours, ordered supplies from all over the world, trying to find something that would work and fit Mary’s needs.Image may contain: people sitting

No automatic alt text available.

Image may contain: indoor

By bansagart, ago

Caregivers

Working full time, caregiving, and dealing with paid caregivers means you have three full-time jobs. At first, when Mary’s needs were minimal, it wasn’t too difficult to find caregivers. We did get rid of a couple early on – one who tried to convert Mary to her religion. Um, really? Another who sat on the couch and slept the whole day, not waking up when Mary called to her to ask for a drink of water. As the months went by, Mary needed more skilled care. We started going through caregivers more quickly. We typically had four caregivers scheduled in a week, since we needed 15 hours a day. I kept begging for them to hire and train back-ups, but that never happened. I wrote this in September 2015.

“Caregiver hell week. One caregiver decided Tuesday that she’s now in over her head and Friday would be her last day here. Another caregiver disappeared for a week then cancelled her shifts – the agency sent a replacement last Saturday. We thought we would give her a shot. Wednesday didn’t go well, then yesterday she called out for today. Buh-bye. Yesterday evening’s caregiver called out sick. The agency is sending yet another new one tomorrow to train with our Sunday CNA (who rocks). Please let this one work out, or I don’t have caregivers after 3pm during the week M/W/F and I have to work.

“The agency keep sending new people that have the right backgrounds but have crappy attitudes. I won’t have it. Yes, I’ve been thinking about another agency or hiring direct, but that has its own headaches…. the one coming to train tomorrow is a CNA brand new to the agency but who was a shift lead at a “memory care” center. The agency manager plans to only send CNAs out now, with the level of care Mary needs, but sometimes their egos are bigger than their licenses.

“My favorite line (not from the manager, another office worker): “but the girls are learning so much from Mary!” Excuse me, she’s not here to be their frikkin teacher!”

Image may contain: one or more people and indoor

Mary and Grumpy Cat sharing a moment.

By bansagart, ago