Need Next Steps..

[LovemyPALS]

I was on this site once. But have not come back due to denial. I was not sure if I needed it. But, I now know I do.

My dad was at 80% breathing at Thanksgiving. 1 week after thanksgiving, he noticed a huge difference. His diaphram is now at 25%. His lungs are fine. He is now on a breathing machine at night to help him sleep. This aparatis is so overwhelming. It is not comfortable for my dad. He is up every 2 hours. His breathing is a challenge, but can still have conversation and wheel around in his chair without needing any assistance when not sleeping.

He has anxiety attacks due to the mask he has to wear at night. He is naturally clostraphobic. He is able to take the mask off himself with his left hand. His right hand is not in use. He can still stand with assistance.

His anxiety comes from the understanding that he can still stand, he can still walk 3-5 steps on his own. why is his breathing going ? we thought it would be the last thing to go. But it is going fast.

Any advise you have on what we can do to help his comfort would be grateful. He is sleep deprived. He can handle what ever comes to him, but sleep is so important.

i'm emotional. I'm venting. I may not make sense. But I need something. Some kind of understanding...from someone who gets it.

Love and Hope,

Suzanne:sad:

 

[Marjorie R. Wilcox]

Does your dad have a Bipap machine? With proper settings and the proper mask, he should feel definite positive results.

Consult his specialist with the problems you are having and get the right equipment for a successful night's sleep. Rick slept 10 hours the first night he got his machine, and was a new man.

I wish you well. Know that the need for this machine in no wise means that a steady decline in his health is expected. Rick has had his machine for over 2 years, and his progression is almost nil

 

[LovemyPALS]

He does have the Bipap machine. We have someone coming out on monday to change masks. Our anxiety is that they show the same masks he already has but in different sizes. He has the mask that looks like a oxygen mask with a tube into a machine that also has water in it for heat so his mouth doesn't dry out. what kind of mask does your husband use that makes him comfortable? I slept in the same room with my dad Thursday night and whenver he rolls over the pressure from the pillow moves his mask and then air escapes.

His biggest problems are nose bridge irritation and air escaping. Sorry to get graphic, just freaked out and am grateful I got a reply to my post.

Thank you Marjorie...any advise would be helpful! Hugs.

 

[joelc]

I can sympathize with him as my breathing problems came quickly. I also had trouble with using a bipap but realized if I did not figure out how to deal with it I would be dead soon. Please click on my name and then go to my blogs. There are several that describe what happened to me. There are 3 pages of blogs so don't quit after the first page.

Sory about your dad!

 

[brooksea]

You need to google Resmed masks or BiPap CPAP masks. You will find some with nasal pillows, some with mouth cover, some with full face, etc... Print these out if you can and ask the DME company to let your dad try one he thinks he might be comfortable with. Don't rely on the company to guide you into the proper thing. They are in it for money. Do your research and advocate for your dad!

Also, he may need something to help him sleep. My husband takes Ambien generic. He likes it because he doesn't get that hangover effect in the morning. But, if he gets up after he's taken it it can be difficult to deal with him, as it is if he is sleep walking. Technically I guess he is!

Hopefully your dad will find a mask he is comfortable with and he can get some rest!

 

[thelma313]

Hi Suzanne,

My dad has had his fair share of mask problems and has tried every single one. He had terrible wounds on the bridge of his nose and no amount of bandaging would prevent it. Finally he settled on the Resmed Mirage Liberty mask which offers the most facial freedom of any of the others he tried.

The problem he had with this mask is that the two pieces that go into the nostrils kept popping out so my mom started using surgical tape to keep them in. It seems to have worked okay but my dad is not a huge fan of any mask that he's tried.. he just settled on the best of the worst.

I know how you feel exactly. I have been quite emotional too and needed to vent but this forum has been a fantastic outlet for that. Believe me if anyone understands how you feel it's me. I have a dad with ALS too. I am relieved to hear that your dad can still walk a few steps and can still speak. I haven't heard my dad's voice since May and I miss it!

Anyway you just feel free to vent whenever you need to. That's why we're here.

Take good care of yourself.

Rosella

 

[Katie C]

When Glen first got his bipap, he actually seemed to like it. Now as with all things, he's decided he doesn't want to use it. We've agreed to a compromise... he won't wear it while he's trying to sleep, but will wear it for a while in the afternoon while watching tv. So maybe if your dad doesn't want to sleep with it, he can wear it another time during the day until it's more comfortable?

 

[brooksea]

Wouldn't have thought of that Katie! Great idea!

 

[Blubear]

Hi Suzanne, WELCOME BACK! One word for ya....Xanax! Well, any benzodiazapam would do. It would help tremendously with the anxiety attacks and help him sleep too. My mom complains about the mask slipping off in the middle of the night. She said it wakes her up because it sounds like a flock of geese flying by! It doesnt seem to bother my dad however, and he is sleeping better now than he has in a long long time. Hey, don't wait so long to come back next time! We are always here for ya!
Hugs, Kari

 

[LovemyPALS]

Thanks All! I am so happy to receive responses! For a while, (I am impatient) I was concerned that I wouldn't have any support. I have to understand this site and that all of us are in the same boat. somewhat.

Katie..althought I soooo appreciate your idea..My dad is in the stages where he HAS to use to sleep. 2 weeks ago, he was able to breathe sitting up fine, sleeping was an issue. Now it is both. 2 weeks! He has a breathing machine that he uses 2x a day to keep his lungs working. a breathing treatment.

So the mask "lady" came by ...she gave him other masks. Issue is, when he sleeps at night he naturally gets a stuffed nose, so must breathe out of his mouth. Face mask is needed. oy..He is trying to "control' the situation and his breathing. He is afraid to take anything to help him sleep that he won't wake up. Although I will try that approach. He needs to sleep..so I am sure he will get desperately tired enough to try it.

when he speaks, his voice is a lot softer than I know it to be. he coughs between sentences.

here is a loaded question...what do we expect next? everyone is so different and I get that. But I'd like to be prepared. Having all this happen within a month is a lot to take. He is a man that is so healthy!

My next issue: He is not eating as much as he is use to. (3 sandwiches at lunch is now 1, dinner is 1/2 of what he use to) we are trying to beef him up with Ensure and fattening stuff from GNC. Maintaining his weight is so important. He naturally does not gain any! Never has. (side note: wish I had that problem? LOL)

You are all so awesome and I know with patience, I will get advice and ideas!

this site is a blessing..

Suzanne

 

[Katie C]

Suzanne... is your dad trying to sleep laying flat? If so, try to get him to sleep propped on some pillows, or maybe it's time for an adjustable bed or even a hospital bed. Keeping the head raised does WONDERS for the night time stuffy nose thing.

 

[LovemyPALS]

Thank you Katie...yes, my dad just got the hospital bed delivered this week. However, he feels he does not need it yet. I told him the same thing...that if he was propped he might be able to breathe. He says...he wants to roll over though..how can he do that in a propped bed? I think to some extent my dad is fighting all of it. I keep telling him, "you can things as you have been, but just different." He wants to get his 'breathing' under control. I don't think that is possible in reality.

am i wrong? I am a caregiver along with my mom. My mom is living with him, but I am a secondary caregiver. My mom doesn't seem to have interest in getting on the forums and getting advise. My dad won't either. I think a bit of denial is happening? I don't know why they won't communicate with those that are going through the same things. I can only be a source of support and information. right?

Thank you for being there.

 

[Katie C]

Hey, my mom was an expert at sleeping on her side and changing positions in a hospital bed, and because of emphysema she was hooked up to oxygen at the same time! So... with a little imagination, it can be done! And yes... if one starts researching and sharing with others, one must acknowledge that it's really happening. So... part of your job is going to be find the info and then find a way to share it that isn't threatening and doesn't cause them to shut down.

 

[Blubear]

Hi Suzanne, Your dad sounds like my dad personality wise. Proud men. My dad was so fearful at first of his bi-pap, but now claims it to be his best friend. Can you get a ton of body pillows to prop him up? If they are long enough he can roll to his side and still be upright. Just a thought anyway. As far as you wondering why your dad and mom wont come on here....I have that same question. My mom signed up, but never ever looks in, and my dad looked once with my mom and that was it. I think their feeling is that they are dealing with this disease every day, and to look and get support from here is just more effort than either of them have. I suspect on some level, as with myself, that they expect that you will keep them posted. It perhaps has become a roll of yours. I know that is how I feel. As far as what to expect next, who knows. Everyone is so different. My dad started with the breathing problems, then his one leg didnt work right, and now in these past few weeks he has become weaker in his legs, and is out of breath when they go for walks in the morning. Just not the same energy as usual. Now he also seems to have problems with his fingers. His voice is also soft now, however his speech has improved during the detoxing, and magnesium spray that he is using all over his body. It is a beast of a disease and it is also fickle! As far as the eating and gaining weight, make that 1 sandwich he has, a fattening one. Put more calories in his meals without adding more portion. Just a suggestion. Hang in there sweets....I know how you feel!
Hugs, Kari
Kari