Dad came home!

[dana]

The ambulance brought him home this afternoon after spending one month in the ICU. He came home with the ventilator and trach, and we are all learning how to care for him. We are very happy to have him home, but scared at the same time. We have hired 4 nurses to help out with mom and dad for the first couple of weeks. This will just give mom the little extra reassurance that she needs while adjusting to the change. It was nice to see dad sitting on the couch watching t.v. He was a little nervous about coming home, but I know that he has been looking forward to it at the same time.

We had to get dad a hospital bed for him to sleep in. We also had to put it in a different room than he is used to because he and mom's bedroom is upstairs. Even though he can still walk, it would just be way too hard to tug all of those tubes from the vent upstairs. I tried to make his "new" room as comfortable as possible. I put up pictures of the grandkids, his kids, and of him and mom. I also put a house plant in the room and hung a star trek poster up. Even with all those touches, it still doesn't feel quite right. I wish he didn't have to be in that room.

I can't help but wonder if we made the right decision for dad. I know people have said it before about how important it is to know what you want and how far you are willing to go with this disease. I wish we would have discussed this before dad was sent to the ER. My parents were in denial and never faced the facts. I just don't want dad to not enjoy the rest of what he has because he is attached to a machine. I know many of you would never choose that path, and I really don't know if dad would have either. I know that at any point he can say that he is done, and we can turn the ventilator off, but WOW...what a job. My goal for the rest of my dad's life is to bring smiles to his face and remind him of the love that surrounds him. He has an outstanding family who has not left his side, and I hope he finds some comfort in that.

For all of you that believe in prayer, please pray for my family. I know the next week or so is going to be a big transition, and I just want it to go as smooth as possible for both mom and dad.
Dana

 

[upila]

Dear Dana,

You, your family and most of all - your dad - will be hearing a lot of hearthy welcomes and good wishes from everyone here!

Best to you all,

 

[ladave]

Dana:

If your dad can still move around and communicate, then there is no reason he cannot have a quality life. Think of all the things Christopher Reeve accomplished in the years after his accident, and he was much less mobile than your father is at this time.

Since my diagnosed I have been in contact with a woman whose husband had pulmonary onset ALS (that is, a rare form of the disease which struck his breathing muscles first). This man live five years more, and they were quality years according to his widow. They took trips, even went camping! I plan to visit her in a couple of months just to get the benefit of her experiences.

I don't know about the other PALS on this site, and my thinking may change, but at present, when I prepare my Durable Power of Attorney (Living Will) I am going to leave instructions that if I am still mobile and able to communicate, my choice would be to be ventilated. My personal fear is not being vented, but being "locked in" (i.e., unable to communicate, totally paralyzed). At that point I would want to be let go, but not before that.

And hey, you never know, they may come up with that magic cure in the next couple of years. I'm not giving up hope and you shouldn't either. I must believe that there are ways to make your dad's remaining days meaningful.

Take care and you are in my thoughts.

 

[Al]

Hi Dana. Glad you dad is home. You said something doesn't seem right. Is it possible to put your mom in dad's new room? If he is used to that it will make it seem more homey to him and help him to not feel isolated. It might be crowded but it might be the thing that brings him the most comfort. Take care and all the best.
Al

 

[hope]

Dana,

My heart goes out to you and your family. I have said many times when you have an illness such as this one it tears at the deepest level of your soul, it hurts, it hurts so much. It is painful for the whole family. You sound like a wonderful family, a loving family and that is very precious. In the days ahead that love you all share will comfort you and help you through this difficult time. The changes made at first will take time to adjust to but I believe the strength and love your family have for your dad and each other will carry you through this painful time.

Sandy.

 

[COlisa]

Dana,
So glad that your Dad is home. Hope he is comfortable. You sound like a wonderful person and he is lucky to have you. You are all in my thoughts. Don't forget to take care of yourself too & make sure your mom does the same.

Wishing you all the best,
Lisa

 

[A Daughters Love]

Hi Dana, Glad to hear your Dad is home again, Yaaaaaa! Try not to second guess your self. Your family did what your heart was telling you to do, so you did the right thing, remember that! I have no idea what it is like to come home with a vent, but can only imagine it to be a huge adjustment. I am sure over time it will get easier, especially with a caring loving family like yours!
Give your Dad a great big "WELCOME HOME" hug from us!
We are praying for you all.

 

[ekoozmin]

Dana--You sound like a terrific daughter who's very much in tune with both of your parents! I like Al's idea of getting your mom in the new bedroom, too. Have you explored Wayne Phillips' pages on what it's like to have a vent? There's also a site called something like "International Ventilator User's Group" but I'm sure I've botched that. Over on the BUILD-UK MND/ALS forum, there's a fellow named BluePete who has written extensively on what it's like to live with a vent. There were some links to photos of him and his wife out and about going to the park and enjoying life. I know Dave in WV has visited with Kenny, both have vents, maybe Dave will chirp in soon with some words of wisdom. I guess what I'm trying to say is that I really hope your Dad and your family make a smooth transition and are not afraid to try to live life, just live it a little differently now. Give your Dad a big hello from all of us! Good luck and keep us posted!

Liz

 

[wewillbeatthis]

Dana,

I am so happy to hear that your dad is back home again. That is great news. Of course you and your family will have lots of prayers from me.

I agree with AL is it possible for your mom and dad to be in the same room? I think that this will really make it nice for your dad.

I also agree with I think it was Jon that said your dad has so much to live for. He is able to still do so many things. I am not trying to minamize in any way what is going on and what he has been through but I do think that you and family should look at the quality of life that he has left as a good thing. He has the trouble breathing and now this problem is being fixed and monitoried. As for the rest of him it sounds like he is doing great.... So you and the rest of the family learn from the nurses get comfortable with what needs to be done.

I have read people with these machines still go on vacation, gardening, out to dinner, shopping at the mall, camping. Life is still here for you all to enjoy together...

Please know that you are in my thoughts and prayers.

Love Jen

 

[dana]

A big thank you to everyone for the advice! Right now we don't have a bed in the room for mom because we didn't know if it would fit. But, there is some room and once things have settled a little, we are going to have mom pick out a bed to put in the room. Right now we have the nurses to help, so I have encouraged mom to sleep up in her room while she can (the vent is pretty loud). She didn't go up to her room until after midnight last night. She waited until he was asleep. She pretty much does not leave his side the entire day or night. She did mention trying to sleep in a recliner chair because that would leave more room for everyone, but I think she needs a bed. I keep telling her that she needs to take care of herself too. We don't want her to get sick and not be able to help dad out.

It is so nice to have him home, even if it is different. It is funny how his two grandkids make toys out of the walker and wheelchair. They love going over to see Papa now because they get to play on all his new equipment. They look at dad like they did before all this happened. They don't care about the tubes and devices. If only we could all see things through the eyes of a two year old.

We are going to make things good for dad. He wants to go to the coast and go to church, and we are going to make that happen as soon as we can. He still has a lot of quality life left, and we are going to make each day important. Sometimes it is hard to believe that this is the path God has chosen for my family though. But, at the same time, I am so thankful for the lessons I have learned thus far. It is good to see dad not struggling to breath and to see an occassional smile. He and my mom have an amazing bond, and it is good to see some of that "spark" back if you know what I mean. hahaha Thanks again everyone for the good input.
Dana
Liz-thanks for the info about the other forums with the ventilator information. I am going to look into it.

 

[Al]

Hi Dana. My daughter who works shift work uses the cheap and easy to shape foam earplugs when she needs sleep in the day. You might want to get your mom some before she moves in with dad.
Take care. Al.

 

[Granny]

Hi Dana,
I am so glad your Dad is home and seems to be doing quite well, even a little smile! You sound like a teriffic family, and God will give you the grace to see this through.
Love, prayers and hugs to all your family.
Leah