Going Home/Staying in Hospital on a Vent + What is day to day life like on home vent?

[DavidS]

So I had posted the same sort of thread a while back (March to be exact) when my dad was admitted to the ICU and trached and put on a vent last year in January. It will be a year in the ICU coming up very shortly. They had been pushing to get us out and we resisted as we weren't ready to come home quite yet. Now I want my dad home (as I don't see him doing much in the hospital) and my mom has now become a bit more resistant. Any opinions on being at home on a vent versus being in the hospital or long term facility. On my last post, several people mentioned that it was very easy being at home (namely Joel and several others) while some mentioned it to be a very difficult and trying process.

We are being offered 56 hours a week of care from the CCAC/home vent program. and the rest we would probably have to figure out. Hiring a live-in would be a necessity. That would still leave us with ~70 hours to cover.We could hire TWO live ins but I don't know where would have them stay. Also, at a point, finances do become an issue. My mom works f/t downtown and intends to keep it that way. I am finishing my undergrad and will try to stay in town for a year or two (for grad school etc) but I can't guarantee much beyond that and I don't want to strand her taking care of my dad alone.

Some issues that have come up recently are that my dad has been desaturating randomly in the hospital. He is on a finger ox monitor and he will drop randomly to 75% sat (the machine is working fine) with no other physical symptoms. Also he has bowel movements at random times of the day sometimes 4-5x, sometimes he feels he needs to use the commode but doesn't actually produce anything. In terms of taking him home, I know joel said that he spends most of his day in his power chair, but my dad abhors sitting in his chair (he will tolerate it for 2-3h then he gets really angry and wants to go back to bed). Also he has lots of secretions most days. Also, he is VERY impatient when it comes to getting back to bed, or the commode, or basically anything.

BASICALLY, it sounds like the ideal home vent candidate is one who needs very minimal care most of the time and has regular BMs and is overall very patient with the entire process. I'm wondering if we will be able to handle my dad and his relatively complicated care.
We know he says he would rather be at home, but once the initial novelty of getting back home wears off, would it be more stressful for him than being at the hospital? Would my mother's and my increased stress start to bear down on my dad?

Do most people at home get moved around by one person or two? aka can one person feasibly operate a hoyer to lift my dad to the chair, change my dad, or basically anything else? We could have an overlap in the shifts for bathing, but for unpredictable bowel movements or if he needs some chest physio to clear secretions or desatting, is that doable by one person alone?
In the hospital they have support and extra hands available if they need it; something we are unlikely to have at all hours at home.

Last point for this extremely complicated issue. Do any caregivers out there of people on a home vent actually get a good night's sleep? do you wake up at every alarm even if there is someone else on shift? Do things eventually settle down after being at home for a few months? Also do most people on home vent stay indoors in bed most of the day or do you sit in a chair or go out a lot?

My mom wants to delay but I don't know what we are delaying for other than we don't like to make decisions.


Thanks again! I know I just asked about a hundred questions but the more information we get about what to expect, the better. You guys are a great forum and everyone always offers such insightful and helpful answers!

 

[joelc]

From what you have described I would recommend leaving him in the hospital. It does not sound like you guys are prepared for the commitment.

I do not require anywhere near as much attention. I sleep through the night so my wife can sleep undisturbed all night.

It only requires 1 person to look after me and transfer me either to bed or the toilet. Every 2nd or 3rd day I have a BM. I need to be suctioned 2 or 3 times in a 24 hour day so there is very little a caregiver has to do but be available.

You can look at my website again and read about our lives with a trache and vent. Living and Surving with ALS

 

[LauraW]

First of all, does your Dad want to come home? Can he financially afford to have home health aides? Is your mother willing to learn how to manage his care? I do not sleep throughout the night. Mom wakes up 2-3 times a night. I am the only one who gets up for her. She needs to be suctioned a lot. She has a feeding tube and we give her real food using a vitamix to liquify it. She has at least one bm everyday but rarely has accidents. She needs a lot of care as she does not suction herself and gets a lot of mucus. She can't walk, I move her from chair to toilet myself. I have help getting her in bed. I am her primary caregiver. My husband helps out when I am not here. I would first make sure that your family is ready for this lifestyle. My Mom is very comfortable here. She has a power wheelchair that has her vent and suction machine on it. We go out a lot...is fact we went to a movie yesterday. Mom is happy that she got vented. She wants to live her life as best she can. It is ultimately you Dad's decision but whoever is going to be living with him should also decide if this is right for them.

 

[laurel]

And David don't feel guilty about whatever decision you and your mother make. I believe you can thoroughly and completely love someone and still decide that it just wouldn't work out to be in the best interest of the person requiring care or for the family to take it on. I think if I were in your Dad's situation I would want competent comprehensive care in a facility with cheerful family visiting versus stressed and unprepared family members trying to shoulder the responsibilities. I hope you win the lottery and then life would be much simpler. Blessings to you and your family.
Laurel

 

[mattsloot]

hi david, i'm facing a similar situation. i cared for my husband at home for a year, along with my, then 2 year old. i had literally no assistance, but it was what we wanted and i did it...all. now my husband is vented, our daughter is 3 and i've been 6 months trying to get him home. often, with a vent, comes an almost constant pneumonia (or 3), so in addition to iv's, he now has catheters, a vent, a feeding tube, many moving parts that i can't handle alone anymore. all matt wants it to come home and i don't know how to do it. i can't afford full time skilled medical care and we have several other challenges as well. we're in MA in the winter and we have a crazy long, steep driveway. once your PALS are vented, ER visits become routine. not to be cold or to pretend as though i have a clue about anything, but it seems this decision should be largely your mom's. given that your involvement, extensive as it is now, most likely will wane, she (and your dad) have some tough choices. i feel your pain, frustration, and all the rest that comes with this. i wish you the best.

 

[martienz27]

my mom was put on a vent 11/2010 and we brought her home a week later it is not bad at al it can get stressfull because they do not sleep very well. We have a home health we got 84 hours a week. but before that we did all my dad retired and i quit my job to care for her thank god my mom had a good job and will retire with full benifits..we had a good RT that trained us on the vent and trach we cleaned it are self and changed the innercanan and the pipes. before home health we were going crazy with lack of sleep. but my mom wishes arre to be home so we are trying are best to do that for her.. can i ask is your dad still twitching all my mom twitching as stoped.. and dose ur dad have the trach where he can talk or you have to deflate the bubble for him to talk? I wish you the best.. And your not alone there are very many people that are going threw what you are..

 

[jmchilindrina]

My mom has had her trache for over 2 years now. She was in the hospital for about a week after getting the tracheotomy and then we brought her home. For us it was easier to have her at home because at the hospital we had to be with her all of the time anyways because we were the only ones that were able to communicate with her. It does take a lot of commitment and in our case we get little free time to go out and do other things and although sometimes I do get tired or sad, for the most part I've grown accustomed to our new life style and it's just our "normal" way of life now. My dad and I both have full time jobs so we have 2 ladies who take care of my mom while we are at work. We need two just for the transfers and baths, the rest of her care only requires one person. They are not nurses but ladies that we just hired and trained how to do all of her care. My mom also recieves nursing care through her insurance 5 days a week for 5 hours a day, although I must say that the two ladies that we trained often do better than some of the nurses they send us. The rest of the time it is my dad and I who care for her and sometimes my two brothers will come and help so that we can have some time off. My mom pretty much has no movement since before getting the trache except for being able to smile and move her eyes. She communicates using the Dynavox eyegaze system. I know that not everyone would feel the same way but my family and I feel that she is much better taken care of at home than she would be if she was in a hospital and I actually dread having to go to the hospital because of the little experience they have with ALS.

 

[LizT]

I believe whole heartedly that my PALS would die quickly if he were to be placed into a LTC facility.
They dont have the time or knowledge to care for him the way that he needs.

 

[flower]

hello i have been on vent since sept 2010 it has not always been easy but it has def. inproved. i only spent 4 days in hosp after trach insertion,but i am rn and my daughter is rn and my daughter-inn-law is rn. my husband is p. caregiver and my oldest son son lives with us. they have no med. experince but they have learn to suction and how to do my feeding ,i have g-tube. i am not able to talk (i have bulbar). they have all been very postive in my care . at first i awoke about 5-6 x a night now i sleep through the night most of the time. during day i have a door bell on my vent and my husband plugs in the reciver in what ever room he is in,if i need helpi just push doorbell. we as a family had a discussion prior to my getting trach what was worse possibilty to happen . i think it it possible to have home but ya'll would have to be willing to give up lots of time to your dad, if there is doubt it would probally be best to leave in hosp. they are trained and paid to care for him. Joel web page is very helpful but it is a personal decision and personal sacfrice is required. pray and then make your decision

 

[jaysmom]

We do it here too-our guy has a trach, a ventilator and a jtube-it's fine. We manage at home-and with the portable vents they have now-are able to go out and about. First few nights-thought we made a mistake, but once you get used to the vent-know what the alarms mean, and how to care for it-it's not bad at all. If you are willing, you CAN do this.