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DrDark

Member
Joined
Mar 1, 2019
Messages
27
Reason
PALS
Diagnosis
09/2015
Country
US
State
Virginia
I would like to hear from any pALS or cALS who are living with a trach. I understand the medical and technical side of it, but I am interested in hearing the nitty-gritty ramifications of living with all of that at home. The real stuff. How do you staff, are there lay person family members helping, how do you provide respite for caregivers, etc.? What is the financial burden? Are you getting any sleep?

If there is already a thread or another source for this information, please redirect me, and I thank you for your patience.

I am aware that all cases are unique, so I am interested in hearing from as many people as possible. Thank you in advance.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,207
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
There are threads by pALS and CALS who have done this. Narrowminded recently lost her DH who was vented. DianeH has been vented for years. She also has a website alsfrombothsides.

Joel c vented so did txtracy. Her husband is still a member here. Santajoe ( CALS posting) Graybeard. Mbmurray. A new member just posted an intro in the PALS section. I am forgetting many.

I am sure people will chime in but I thought you might wish to read old threads for real time experiences.
 

debwilson77

Active member
Joined
Jan 10, 2016
Messages
57
Reason
CALS
Diagnosis
02/2016
Country
US
State
arizona
My husband is vented and for us it was the right choice. We still go out and do things. Personally for me it's easier to deal with than the lack of mobility.
 

notBrad

Senior member
Joined
Feb 26, 2015
Messages
578
Reason
PALS
Diagnosis
04/2015
Country
US
State
OR
If you are at the crossroads of getting one I would say do it and don't look back. It is a pain hauling equipment and backups around. But if you are on a mask and hauling equipment around anyway... Plus it makes shaving and oral hygiene a breeze. My blood oxygen is much better. I would have done it much sooner if I had known what an improvement it was over the mask, assuming you are on a mask a majorly of the time. Feel free to ask anything.
 

KateEmerson

Distinguished member
Joined
Apr 23, 2016
Messages
420
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
My husband was home on a vent for four years ( He presented with respiratory failure, trached /vented before any suspicion of neurological problem). He had original Medicare with BC/BS Bronze for a supplement, we paid nothing additional for any hospitalizations, 2 months of "rehab", respiratory equipment and supplies (there was a lot) , and received VNA services. VNA provided : nurse usually 1Xweek, up to 3 if sick ( this was for assessments not caregiving), PT 1-2 X week, OT 1-2X week, aide 2X week for an hour.

Finding nurses who could take care of my husband on a vent was challenging even with the nursing agencies, most nurses know how to suction but not resolve respiratory problems or emergencies. The nursing agencies in our area charge $65-120 per hour. We tried three different agencies in the first couple of years and only found three nurses that I felt comfortable enough to leave the house( all 3 had previous vent experience in homecare). I finally found three very good nurses through word of mouth that were ICU nurses at a major Boston hospital and wanted some extra hours without the commute. I had them coming 20 hours a week the last couple of years so I could get out.
I also found a retired respiratory therapist who came one afternoon a week but didn't do any personal care. On average we paid $65 an hour for nursing care.

In terms of lay persons/ family members being able to handle the vent and potential problems we were so fortunate that my sister was an RN ( even though a psychiatric nurse) and generously came every weekend to help. My sister in law also felt comfortable enough to stay with him the last year or so. Other than that, none of the aides we had or others we knew felt comfortable enough or I didn't with them.

In addition to having people to manage his respiratory we added aides once he couldn't stand and pivot so we had two people for am and pm transfers. Some people can be transferred with one person but he was 6'4" and we never could find a way to do it with one person. In our area the aide agencies charge around $28.00 per hour.

Hope this helps give you some sense of what the costs might be for you. Please free to ask any specifics that I may have not given, Kate
 

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,305
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
As Nikki mentioned, I lost my husband Nov 30. He was trache/vented for 8+ years. At first, as notBrad states things were better. We kept the cuff down and he could talk around it. We did go some places and he’d go for walks in his PWC. However, it doesn’t stop progression. He was completely bed bound the last 3 years, and had to use eye gaze the last 2 or so when his voice finally went. Up to the end, he said he would do it all over again, even knowing what he knew.

Where I live, at first, before Obamacare, I could get private duty nursing as he was still on private insurance. After, nursing was not covered. Private duty nurses are priced slightly lower than in Kates area. However, the agencies in our area would not send aids at all. Everyone who came had to be RN or LPN and vent certified, so I did most of his care myself. Both of my children now 31 and 24 were awesome. They both learned from the beginning how to do everything. My DIL is now an RN and also was fully capable. However, DS is married and did not live with me and DD was first away at undergrad and now getting her Dr of PT.

From the CALS side, I will be very honest, it’s hard - very hard. You need tons of support and you have to have someone with you 24/7/365. You cannot be left alone for a quick trip to the grocery etc.

Also, the last year rules changed in our state and I could not even get a visiting nurse as none were trach/vent certified, so they were not allowed into the home.

Also, what worked best for us was Medicare with a Medigap policy. There as lots of supplies and if you are on medicare the vent rental alone will run you 200+ a month. Not counting everything else you need. The Medigap policy paid that 20% so was well worth it. Any of the Advantage plans in my area would only cover 50% of the DME (durable medical equip) so the vent would have been 500/mo alone. Do your research on nurses and medical plans. It is not inexpensive.

I hope that helps, and I hope I didn’t scare you. Just trying to be honest. Everyone has to make their own decision based upon many factors involved. As I said, Brian would still have vented even after going through the experience. If it were me, I would chose not to vent.

Feel free to PM me if you have other questions. And my journal was called “Struggling”. I’ll see if I can link it if you are interested.

Hugs as you go through the decision process.
 

jonico

Member
Joined
Feb 21, 2017
Messages
20
Reason
CALS
Diagnosis
12/2014
Country
US
State
NY
Hi Dr. D.,

My wife was diagnosed in December or 2014, and first noticed something amiss in July of that year. She got her tracheotomy in February of 2017. She'd had aspiration pneumonia three times before the trach and wouldn't be alive now without it. We can both say, despite considerable challenges, we are very glad she is alive on the vent.

I'm going to give you what will likely be a pretty lengthy response to your post, and it will take me some time/days since I care for Nicole 24/7 and I'm not the fastest typist. Do you mind sharing with me whether you are a man or woman and what does your caregiver situation look like?

Thanks...Jonico
 

jonico

Member
Joined
Feb 21, 2017
Messages
20
Reason
CALS
Diagnosis
12/2014
Country
US
State
NY
Dr. D.,

I'm going to give you the male caregiver perspective. The system I have gradually developed to care for my wife has given her a quality of life that, I believe, would be hard for a woman to do for a male PALS. Before I answer your specific questions, fast forward through more than five years of various challenges to today and a day in our life. I believe this will give you an idea of how rewarding life still can be, on a vent, with feeding tube, unable to move any part of your body (other than the head, eyes, mouth), unable to speak except with a Tobii Dynavox and rudimentary spelling sheets. I'll then give you a look back at our journey and numerous important challenges encountered and considerations/decisions made along the way.

I had to quit work pretty early on, almost three years ago. I will share more about financial considerations later, but the only way for this to work for us, and for Nicole to have pretty decent quality of life was for me to care for her full time.

I usually wake up between 7:00 and 8:00am. I make some breakfast, read the paper, and relax a little before catching up on various ALS, home or personal responsibilities and preparing for the day. Nicole usually wakes up at around 9:30. At present she wakes anywhere from zero to three or four times in the night. Once or twice, for me to care for her for about 15-20 minutes, is the norm. Overall, I sleep quite well. I take 50mg of Trazadone.

Nicole sleeps in a hospital bed and I sleep on a fold-out love-seat sofa with twin mattress in what used to be our family room. That room has her bed, the love-seat, her very comfy (vibrate, heat) lift chair/recliner. She spends a fair amount of her day in that, other than when she transitions to the commode and back, or is in her wheelchair for an outing, which we do almost every day.

From about 9:30-10:30 we get things all prepped to move her to the side of the bed, position her feet on a pivot disk and then with a strong boost from an LPN, or Aide, or friend I stand her up and get her legs locked in one rather quick hoisting motion. I then pivot her to with her back to a very special Rifton HTS commode and set her down. (I wouldn't be able to do all of this without this specific commode) We then do the same process and transition my wife into the recliner to start her day.

Either I or an LPN feed Nicole Liquid Hope Organic formula by gravity feed through her feeding tube. Aides aren't allowed to feed her. When I have an LPN helping me, I take the time from about 11am to 12:30 to run errands, catch up on email, go for a run, shower, or various other necessary tasks. At about 12:30 I give the nurse a lunch break. If I have an Aide, or nobody, helping me for the day I am on 100% of the day and the Aide or friends are there almost exclusively to help me lift and transition about every 2 1/2 hours.

So, from 12:30 until about 1:30 I spend time with Nicole, chat, read to her, do devotions, etc. Around 1:30 it is time to transition to the commode again. Two days a week she will stay on the commode and we will roll her into the shower to bathe. She showers while on the vent and the ventilator sits on the toilet next to the shower area. She is typically back in her recliner for lunch those days by about 2:30 and after lunch we tend to go for an outing. On non-shower days, she will most often transition to her wheelchair for an outing around 1:30.

More to follow later. Gotta run...
 

DrDark

Member
Joined
Mar 1, 2019
Messages
27
Reason
PALS
Diagnosis
09/2015
Country
US
State
Virginia
hello, Jonico.
I am male, and my cALS is my wife. Nonetheless, your very detailed account thus far is enormously helpful. Nicole is an incredibly fortunate woman. Thank you for taking all of the time out of your busy schedule. I look forward to the next installment.

Scott
 

jonico

Member
Joined
Feb 21, 2017
Messages
20
Reason
CALS
Diagnosis
12/2014
Country
US
State
NY
So our outings generally take place between 2pm and 5pm. We have an MV-1 and we wheel Nicole into the front passenger space. Her vent and oxygen tank hang on the back of the wheelchair and we will travel as far as an hour away to go to a museum, or wheel out the door, down the ramp, and down the street to our big city park. We do the shorter walks on days when a friend will be visiting with Nicole. She is fortunate to have a few friends/family members who visit regularly, and they are fortunate to have the time with Nicole. A couple friends in particular have great conversations of up to an hour and a half, usually until Nicole's eyes get too tired typing on the Tobii. We cough assist/suction Nicole frequently during the day and a couple/few times in the night, but it is amazing how little she needs to be suctioned while chatting with friends. The distraction of that kind of engagement has great therapeutic value.

We go on outings year round, even in winter on days as cold as the 20s. We bundle her up substantially and go for it. As long as it isn't windy, it is manageable. If the paths are cleared of snow, we trek on. Other days we will go to the mall, a museum, or just for a ride...especially enjoyable after a beautiful snowfall.

Upon our return, we do a commode and recliner transition and Nicole is pretty tuckered out. She will generally rest with an Audible Book, or just rest her eyes and relax. We usually watch the evening news and do another commode and back to the recliner transition in the 6:15 to 6:45 pm time frame. We then watch Netflix or Prime until 9pm when we stand her for the final time and do a commode to bed transition.

Once Nicole is comfortable in bed, I do arm and leg stretches for her every night. A PT showed us good ones when she was in rehab after her tracheotomy. I then get all her pillows just right under her arms and against her feet while she watches a show on TV. Around 10:20 pm I give her meds and get her Tobii set up just right. She needs the Tobii to wake me when needed during the night. She generally falls asleep, pretty exhausted around 10:40. I then do a few things before hitting the sack around 11:30 on average.

That is a fair representation of our day. You can see how it isn't too boring for Nicole. She was a very active woman pre-ALS, but has adjusted to this life remarkably well.

The way we stand Nicole up and get the blood flowing every couple/few hours is hugely important to her. I'm not sure she'd want to continue living if she were only hoyer lifted, or didn't get out of bed much. She has had no open sores this entire time, and only infrequently complains of varied discomfort.

More to follow regarding your specific questions, etc. Gotta run...
 

Jrzygrl

Distinguished member
Joined
Feb 14, 2017
Messages
490
Reason
CALS
Diagnosis
08/2014
Country
US
State
NJ
Jonico,

I applaud you for all that you do for your wife. You seem to be a wonderful CALS and your wife is lucky to have you.

I am, however, curious why you say, "The system I have gradually developed to care for my wife has given her a quality of life that, I believe, would be hard for a woman to do for a male PALS." I am, among many others, a female CALS to my husband. Although he has said he will not go on a vent, I often read threads relating to it in case he changes his mind.

My DH is limb-onset with no use of his arms and legs and limited/declining neck and torso control. I take care of him 24/7/365, save the 10-12 hours a week that I have a (female) aide come in to help. I do use a hoyer to move him, only because it became unsafe for him to transfer any other way. I do 45 mins to an hour ROM exercises with him every morning and smaller sessions throughout the day. I move him from bed to wheelchair to commode or anywhere else he wants to be. I dress him, feed him and take care of personal hygiene. We go out on trips in our van whenever he is willing to go, most recently to a MLB game in the city. Next month, the two of us will take a weekend trip to attend our DD's college graduation - a 5+ hour drive each way. I researched, designed and oversaw the remodel to make our house accessible. I also take care of the house, meals, cleaning, yardwork, schedules, medications and finances. I have become good at "McGuyvering" fixes and have become a respectable wheelchair mechanic.

I AM NOT a super-woman by any means. There are some female CALS and past CALS who have responded already on this thread, however, that I do consider super-women. They've done it all, some for a very long time, often with less help than I have. It is hard and I do struggle, but I think my DH is very well taken care of. I don't think you should discourage any CALS - male or female from trying to do the best for their PALS.

Dr Dark, I'm sure your wife/CALS can educate herself to take care of whatever you decide. Tell her to log on to the CALS forum for help. Where there's a will, there's a way. Put one foot in front of the other and you will be fine. We are all here to support each other.

Off my soap-box. Good day all.
 
Last edited:

jonico

Member
Joined
Feb 21, 2017
Messages
20
Reason
CALS
Diagnosis
12/2014
Country
US
State
NY
Hi Jrzygrl,

You are an amazing cALS! I'm really sorry to have offended you and any of the other women cALS out there with my posts! I did a poor job of articulating the ONE aspect of what I do that I think would be challenging for many women, purely because men tend to be bigger than women. Standing my wife up and setting her down 10 to 12 times per day, when she has no use of her legs or arms. I can't do it alone, and it is challenging with the help of another person.

I meant every other aspect of what I shared to be an encouragement to Dr. Dark of how rewarding life can be, even though my wife can do little of what many people would consider worthwhile. I wanted to share with Dr. Dark just one way of how it can be done, and be an advocate for getting the trach. I apologize to anyone who thought I was discouraging it!

I mentioned that I'm not sure my wife would want to go on if she needed to be hoyer lifted all the time, or was bed ridden...simply because that is her truth. That is certainly one factor in why so many pALS opt not to go with the trach. You made a beautiful case for why that shouldn't be a factor.

Thanks for your thoughts and keep doing the remarkable job you are doing.
 

Jrzygrl

Distinguished member
Joined
Feb 14, 2017
Messages
490
Reason
CALS
Diagnosis
08/2014
Country
US
State
NJ
Jonico,

Thank you. I was not looking for a pat on the back, just pointing out that although being a CALS is a difficult job, most people can do it if they have the right equipment and some determination.

Since you say you cannot stand your wife up on your own, don't you think it might be prudent to get a hoyer in case of an emergency? I worry about the times you are alone with her. What if something were to happen and you need to get her up? You wouldn't have to use it on an every day basis, but you might want to think about getting one and both of you becoming familiar with it.
 

DrDark

Member
Joined
Mar 1, 2019
Messages
27
Reason
PALS
Diagnosis
09/2015
Country
US
State
Virginia
Jrzygirl and Jonico, I really value both of your inputs, as well as all of the others above. I also admire all of the cALS here for the pride you all take. I understand where both of you are coming from, because my wife and I were both born and raised in nj. She doesn't back down from anything! Jonico, I relate to what you say because I am an ex offensive lineman at 6'3", 290#, and my wife is 5'5" and might weigh 125#.

I asked my question in the first place because our children are still young, and I am still enjoying myself. I hope that I won't need this intervention (trach) for awhile yet, but my last clinic visit made me revisit all of this because my fvc dropped (73->54%) enough that they recommend PEG placement now.

Anyway, I apologize for the rambling. What I am getting at is that I really appreciate everyone's input!
 
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