Home on a ventilator or staying in the hospital - potentially indefinitely

[DavidS]

Hi everyone,

So my dad has been in hospital for 2 months now. He went in with a GI bleed, then he got pneumonia so he was endotracheally tubed, then we opted to go for a tracheotomy and ventilator as my father still has much use of his legs and head although he has little use of his arms, upper body, and now, his diaphragm/breathing muscles.

Firstly, we live in Canada, which means that healthcare is being provided for us... somewhat. At first, when we went into the hospital, our immediate reaction was 'yes, we want him out of here as soon as possible' as we knew that a program exists where families can be trained on the ventilator machinery and can take patients home. After having him there for a while, we realized (its just my mother and I) how much more breathing space we really had when he was in the hospital. Beforehand, we were on a BiPap and had some level of care (if even just someone sleeping in the room with him) for 24 hours.

Now my father definitely wants to come home. And a huge part of me wants him home. But part of us says that we will also be much more stressed than even when in the BiPap world, and also, the decision to have competent caregiving for 24h a day is a financially difficult one, even if the gov't were to cover, say, 40h a week.

My dad still has a lot of strength and still has his vigor on some days (others he just watches a lot of TV in the hospital) and I really want to get him out and about, ESPECIALLY now that summer is around the corner. We figure that, if he stays in hospital, we could hire a nurse or RT to take him out for special days, but other than that it would be difficult to take him places and he would be mostly confined to his room. We are also worried in the long run, for how it would be, having him at home versus keeping him in the hospital. I worry, that despite a higher level of care, and us visiting him daily, he will lose some of his drive and will deteriorate more quickly, but also, as him being on a vent, we may be able to have him with us for another 5-10-15 years, and presuming I want to move out as well, and start my own life, it would be very difficult to take care of him all that ways along.

If you could please weigh in, those of you who have gone through this, and PALS who have spent long times in hospitals, or dealing with the issue, that would be GREATLY appreciated. My dad is a very altruistic person and doesn't want to 'burden' us or interfere with my schooling (Uni) but he also said it would be very 'bad' and 'lousy' if he couldn't come home.

Please send me your thoughts.

 

[halfin]

Hi David - That is a tough decision. I can't speak much from personal experience but can tell you one story. In our ALS support group (which meets at a local hospital) there is a man who has lived for the last ten years in the hospital, on a ventilator. He has had ALS for over 20 years. He was diagnosed pretty young, in his 30s, and has had a relatively slow progression. When he went on the vent it was his decision to move to the hospital and live there. His wife comes in every day even though she lives an hour away. They seem to be doing pretty well.

I do plan to go onto a vent and try to stay alive when the time comes, and I wonder about the same thing. My home situation is similar to yours, my wife and my son. He has finished school but is still looking for work. And similarly I worry about him spending his life taking care of me versus going off and making his own way in the world. But without him I don't know if living at home would be practical. I don't think Medicare will pay for home care aides so we would have to pay ourselves. Now some people here have said that trache care is not rocket science and you can train relatively unskilled aides. I'm not sure you can quite just pick up the guy with the "will work for food" sign on the corner, but we do have a large population that can work cheaply. So maybe it could be possible.

I do have one advantage, which is shared with this guy I know in the hospital. We are both software people. Even in his late state he can still move some facial muscles, and is able to use his computer that way. He still writes software! After 20 years with ALS. This is like a dream to me, to be able to still be productive even in late stage ALS. That will definitely give me the motivation to keep going and will allow me to enjoy life and feel good about myself. Given that ability I could live in the hospital and be happy.

Again, sorry I cannot give more practical advice, but I do expect to be facing a similar dilemma in a few years. One thing I could suggest is to be honest with your dad and involve him in the decision. It sounds like he is still mentally pretty sharp. It's something that affects all of you and everyone's opinion should be considered. Good luck in whatever you decide.

 

[joelc]

I am a PALS who has a trache and vent who lives at home. I have no mobility and live in my power wheelchair. We have a lift over the bed and in the bathroom. With these things in place it is not that hard to care for someone. There is a lot of missinformation out there about what it takes to look after someone. Trache and vent care is easy and can be done by anyone, the biggest problem is that someone has to be around 24/7 just in case something happens like a hose comes off or suctioning is needed. My wife is my primary caregiver and our son comes for a few hours a week so she can go out and do things like grocery shopping.
I would think having him at home would be easier than driving for hours a day to visit him in the hospital.

You can read all about our experiences here;
Our website

 

[Al]

Hi David. You should go to joelc's website. He's been on a vent for a while and is our resident expert in that field.

AL.

 

[sesl]

How much can you (and your government) afford to do in your home to make the environment more like a hospital - where "others" can help the nuts and bolts of caring for your Dad?

My mother wants to be in her own home, possibly even die there. Our government has various programs in place that collectively are providing her with a morning personal assistant (gets her up, showered and dressed, gets her breakfast, moves her to her chair in the living room for the day), an evening assistant (same stuff going to bed) and some cleaning assistance. We have an NGO that provides all the equipment required in the house, and there are other NGOs that will provide additional assistance as we need it.

We also have respite help so that my sister (who lives with my mother) can get away for a few hours here and there.

All this support provided at no cost to us means that we will have some funds available (from our own resources) to hire nursing help for overnight care and possibly some care during the day when we reach that point. Nursing care is not provided in the home here - a visiting nurse would be provided if we need that (to administer meds/shots - that kind of thing) but not anything like an overnight nurse to monitor breathing or help with toileting during the night.


I think there are two aspects to your very difficult decision - what does your Dad (the sufferer) want, and what should he be allowed to have if at all possible. He has told you the answer to that, and your dilemma is whether you and your mother can provide that and also keep yourselves sane and healthy.

The other aspect is - what decision do you feel that you can live with for the rest of your own lives. This is the "guilt" thing. If you are going to be eaten up with guilt for the rest of your lives because you couldn't fulfil your Dad's wish to be at home, then that's something to consider seriously. If you genuinely think that you can't care for him at home, and you know that hospital or residential care of some sort is best for your family unit as a whole, then find the best possible hospital/residential care for him, visit him every day, love him and know that you did the absolute best you could in the circumstances. And then don't feel guilty about that.

sesl

 

[LauraW]

Well, I can tell you that there is absolutely no way I would have left my Mom in the nursing home. I quit my job, bought a home with my husband and father and care for my Mom 24/7 with some help from my husband. I do not consider it a burden at all and, yes, I had to give up some things that we were planing on doing with our lives. We have only been married for 2 years. Our insurance will not pay for any home care AT ALL! Joel is right, it becomes second nature and is not as difficult as it seems. I love what I do. Mom took care of me when I neded her and now it is my turn. I pray that she lives many many more years. Good luck to you.

 

[pepsiman]

It's a rotten decision to have to make. I was against the vent for my wife, mainly out of financial considerations. We have four kids and Social Security Disability wouldn't have even paid our mortgage. I was allowed to work from home and I really couldn't have asked for a more understanding or supportive employer. Even still, my job normally requires a significant amount of travel and eventually somebody would have to take up that slack. They said they would cover that work for me, and I have no doubt they would.....up to a point.

I faced the decision of either paying for 24x7 coverage or quitting work at some point in the future. Our insurance was also through my employer so we would have lost that as well. Realistically, we could have probably survived for a year or so on savings. Liz however was a practical woman, and while she wanted the vent, and I told her I would support whatever she wanted (and I would have), she opted to never make the decision. I feel guilt, regularly. She knew how I felt and why I felt that way and I'm sure it contributed to her decision not to decide. In the end, she went downhill so fast that I'm not sure there really was time to vent or if it would have made a difference.

I'll live with the guilt for the rest of my life but I still think that financially it was a no win situation. If she had vented and survived for any length of time we would have been ruined financially. This is the number one reason I'm all for health care reform here in the US. Families shouldn't have to make life or death decisions based solely on financial considerations. Canada may not have all the answers but at least someone like joelc can make the decision to vent without wondering if the family will still be able to afford the next meal.

Sorry for the rant, I'm feeling particularly curmudgeonly tonight.

Dick

 

[laurel]

Dick don't feel guilty about your decision. You did what was right for your family. I am sorry about your wife dying. The Canadian system isn't perfect in the situation you describe. People have to qualify to receive nursing/care aid assistance, and a frequent complaint is how stringently it is rationed out. Having a relative live at home who is quadriplegic and on a vent generally isn't done here in Canada without full time nursing help--not because it can't be done as Joel says, but most family members burn out due to the complex care of turning, lifting, transferring the person that is required 24/7. It is rare that relatives will undertake that responsibility in Canada unless they are financially well off and can afford the 24/7 nursing support. Facility placement in those circumstances is more common. I am a retired RN and this opinion is based on my experience in the medical system.
Laurel

 

[pepsiman]

I'll always feel guilty.....that's the way we are in my family. If we don't have a good reason to feel guilty, we make one up. I've got a good enough reason to last the rest of my life. And yes, it was the right decision for my family. It still sucks though to have to make it. The only more difficult decision I can think of would be to have to decide when to pull the plug.....

Dick

 

[pepsiman]

We were told, not in so many words, that venting wasn't really an option if Liz wanted to stay at home. I'm sure there's a way to do it, but I got the feeling we'd be fighting everyone, the doctor, the insurance company and any organization providing home care. The cost estimates were truly staggering. I could visibly see the wind taken right out of Liz's sails when she saw the numbers the doctor provided us with. Insurance probably would have covered most of the costs, until I hit my limit, anyway. I can only imagine facing the decision of having to pull the plug because the money ran out....... And then having to tell the kids....... It's not fair and I'm sure deep down Liz knew that and chose to save me from having to make those decisions. She was an amazing woman on so many levels and she never did anything without thinking it through to the bitter end. So while it may look to me like she never made the decision, there's no doubt that she did. She just never told me what her decision was because she didn't have to, time took care of that.

 

[joelc]

Dick don't feel guilty about your decision. You did what was right for your family. I am sorry about your wife dying. The Canadian system isn't perfect in the situation you describe. People have to qualify to receive nursing/care aid assistance, and a frequent complaint is how stringently it is rationed out. Having a relative live at home who is quadriplegic and on a vent generally isn't done here in Canada without full time nursing help--not because it can't be done as Joel says, but most family members burn out due to the complex care of turning, lifting, transferring the person that is required 24/7. It is rare that relatives will undertake that responsibility in Canada unless they are financially well off and can afford the 24/7 nursing support. Facility placement in those circumstances is more common. I am a retired RN and this opinion is based on my experience in the medical system.
Laurel

I have a lot to say on this subject but this is not the time or place.

 

[laurel]

Dear Joel,
I meant no offense to you in any way. I was just stating my experiences--professionally and personally. We took care of both of my infirm parents until they died and we received minimal support from the system. My husband travelled in his job, and I worked full time nursing. The system failed us miserably and I often wonder if I did the right thing being the good daughter and keeping my mom with us when she couldn't walk, transfer herself, make a meal, get to the toilet etc. I had to count on 2 hours a day care aid assistance to put my mom to bed when I worked evening shift. I frequently had calls from her in tears saying the care aide didn't show up, she was tired, had to pee, and wanted to go to bed. I would desperately try to get someone to cover for me so I could race home (an hour each way) to clean her up and put her to bed. I fought placing her, and I think it lead to her demise. She fell while I was out and had a hip and leg fracture and wound up dying of pneumonia. She had an alarm around her neck that she pushed, and a lovely RCMP was in the process of calling the ambulance when I arrived home. But I have to say that if I had it to do over again, I would have opted for a nice facility where she would have had company and better supervision. For the two years that she was in such a dependent state, I was stressed and frequently in tears at how bad everything was going. My husband got depressed because our lives revolved around her care and their was a pall of sadness in the house. Yes, I could have afforded to stop working, but I loved my work and I didn't want to be a full time caregiver. I did contemplate hiring someone full time but that would have stretched the budget beyond what my husband was comfortable with. I think I am a good person who will go out of my way to try to do the right thing for others, but I failed miserably with my mom. All the talk of closer to home services in BC to allow family members to stay together was a big zero for us. There was little in the system to help us make things comfortable and workable for my mom. My neighbor with her mother who had Alzheimer's Disease experienced similar things when she tried to keep her mother at home. You and your wife are very strong admirable people and I think you are exceptions.
Laurel

 

[joelc]

Being a part of the medical system yourself taints your outlook. We approached this thinking outside-the-box and have a very different experience than what you describe. As I have already said, this is not the place to discuss this.

 

[ZenArcher]

In my opinion this is exactly where discussions like this should take place so that people can be exposed to all aspects.

 

[pepsiman]

I agree with ZenArcher. I hear lots of "ALS doesn't have to be a death sentence" but nowhere do I see a way of affording the cost of caring for a person with a trach and vent for several years. It's one thing for a grown adult with no young children to worry about to make a decision to go all out to live as long as possible. It's quite another when there are four minor children that need some sense of financial security if they are to have any chance at a decent life. If someone could convince me that it's actually possible for a PAL to vent, while the spouse raises the kids and keeps the family out of a shelter I would become the biggest advocate for venting out there. I just don't see a way to do it outside of being very wealthy going into the disease. This is what I want to understand. Sure, I'll feel ever more guilty about my wife's death, but I'll live with that if someone can convince me that there was some other option that wouldn't mortgage my children's futures.

Dick