My Dad is having a hard time getting into bed and breathing is getting wors

Pametha
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My Dad is having a hard time getting into bed and I don't know how to help him. Just trying to get him turned so he can get into bed seems to be really hard for him. He is having such a hard time breathing he gets winded just doing something like trying to turn in bed. Any ideas on how I can help him? We are trying everything possble to help him but I think it upsets him. He try's to be a good sport, but I know he hurts.
quick background: nsclc stage 4 and on hospice.

22 replies

scared1

What does hospice say. Seems they could control his pain and give him meds to help with breathing. Why don't you give them a call.

Pametha

Scared1,
I called at about 3a.m. this morning, we gave him a liquid medicine they told us to give him and after he calmed down about not being able to breath..... he could breath better. I have sent an e-mail to his hospice nurse, but I'm not the main care giver, my mom is, so I was only able to tell the nurse what was going on and hoping she calls my mom and tells us how we can help him. He don't like drugs, and it's really hard to convince him that he needs to take them before he gets in to much pain, But I think he's just scared of loosing control. This is all new to him, and us. We are all just scared, and go figure things have to happen on a holiday weekend. Why do things have to happen on holidays?

scared1

Holiday weekend or not hospice should be there and should be able to calm things down. Can your mom call them? If not just give them a call I can't imagine they would let someone suffer. Do you have any of the medicine left that he took befor?

texaszan

Maybe you could get him an electric recliner and let him use that for sleeping until he can get in and out of bed more easily. They're expensive but you can find them used or maybe even rent one.

Pametha

Scared1,
Thanks! Your right, I'll try to call hospice myself. Wish me luck!

scared1

GOOD LUCK!!!!! Let me know what happens.

Pametha

Texaszan,
We have the recliner, but he just can't get on his back. I think the cancer has already spead there and he just can't breath if he's on his back in any way. I know hospice will have supplies out to him fast so I'm seeing what they have to say. This is just so horrible. I know he can't stand me seeing him this way. I just try to comfort him, and try not to let him know how much it hurts me to see him this way. I just gotta try.

Marie400

Does your Dad have a hospital bed? That seemed to help my Mom a lot and you shouldn't have any trouble getting his Dr. to write him a Rx for that -

kenilyn3kids

We lost my daddy to Stage 4 NSCLC in March. He had the same trouble breathing that you describe and I can only tell you one thing... Hospice is there to be your spokesperson as well as your mom's. She's just his primary caregiver. Your dad needs as many advocates for him as possible. I know it's hard, 'cause you probably are worried about stepping on your mom's toes, but you are just doing what's best for your dad. Hospice will make a decision based on what the family is telling them, come out and ascertain what the problem is and what the best solution is, or IN MOST CASES contact your dad's oncologist directly and work with the doctor to decide what meds he needs. The most important thing is to keep your dad as comfortable and pain free as possible. There are meds for pretty much everything and the most important thing is to get them as soon as you see that he needs them. Hospice was wonderful with my dad and he eventually passed away peacefully in his own bed at home and with his whole family around him. The holidays are especially difficult when your loved one is sick. Find comfort in each other. Your mom needs you as much as your dad does. You are in my prayers!

HM

I think the hospital bed is a really good idea and big help. My father found it vastly helpful. We had the doctor write a script and the medical supply store delivered it same day.

Also, is your father using oxygen? My father resisted at first, but found it really helped with his breathing, and thus, his energy. It dried him out, so we also got "little noses" saline spray for him.

When my Dad was sick, he had 5 "yentas" mothering him and advocating. It really takes a village.

My best. Thinking of you.

HM

Also, for a used electric recliner, try Craigs list at www.craigslist.com

Pametha

I'm sorry to hear about your dad. It sounds like we have alot in common and you have alot of words of wisdom.
I called hospice and they are going to send more meds. That was good. Your right about worring about stepping on toes. I love both my parents so incredibly much and want to make everything as easy as possible for them. But one thing I was always taught is that I have a place. Some stuff was my business and some wasn't. So I am intemidated. I respect both my parents so much. I guess thats why this is kinda hard for me. I think the hospital bed is a good idea to. But my dad thinks"Not yet!" So I keep lightly pushing and tiptoeing around. My mom has figured out that we should put the bed in the living room so could still be invovled in everything and just be around everybody. She puts it to him so that way he can lay in the living room during the day and sleep in the bedroom at night. But he just won't let us do it......yet I bought my mom a baby monitor today so that she could hear my dad in their room without getting up constintaly. They both seemed ok with that. Thanks for all ya'lls help. We have the recliner that lifts to, but he don't like it....... yet Thanks guys, ya'll helped me through that one. My prayers are with you all also. Keep the FAITH

Pametha

Scared1,
Thanks, they are sending out the meds and made me feel better. I wanted to make sure you knew I tried it and it worked. Thanks. God Bless

Jolene

Bedtime was always a difficult time for my dad. I recall my mom saying when it came time to go to bed, dad would become very agitated. This was long before he was "really ill" and I wasn't there at night to see what was happening.

There were several things that I observed and instituted. First, anxiety. Before going to bed, I had the doctor prescribed anti-anxiety medication to help calm his inner fears and that feeling of not being able to breathe. Next, I got a hospital bed put into the home and we could adjust the top and bottom to a comfortable level. If he says he is unable to breathe, this causes extreme anxiety.
It is one of the worst symptoms of lung cancer; feeling you are suffocating. Normal oxygen concentrators went to 5 liters. Dad had a machine that gave him up to 8 liters. We would run it at a higher level until he feel asleep. Too much oxygen is not good, however, he was dying and he deserved to be comfortable his team felt.

I would take him into his bedroom in a wheel chair.
He would place his arms over my shoulders and I
would stand and pivot him onto the bed. He couldn't lay on the affected lung as his saturation levels would drop. I did breathing treatments every two hours and that seemed to help him as well.
We also got a lift recliner. Dad slept in it most of the day, but, I made him lay in bed for a nap and at night to prevent bed sores.

It is HELL on Earth. My prayers go out to you. Jolene

USMCCAT

Oh, gosh...I don't know what to say. My dad was the same way, but bed ridden due to bone mets breaking his leg. Does your dad have a Nebulizer? this helps a bit with my dad. Ask about it, if not. God bless...

Dyan

Hello,

My dad is having the same problem. We found that silk/satin sheets and pajamas make it a lot easier to slide around and move. He is in a hospital bed and pulls on the rails to help him move around. They also sell matress cushions at the medical stores - I think it is called "egg crate" foam. Unfortunatly we just went through this with my brother. The "egg crate" really helped him with the pain. He passed away from small cell lung cancer. He had wonderful help from a hospice nurse who came to the house. A month later my father was diagnosed with non-small cell. Very overwhelming. My dad also just found out he has a broken rib. Not sure from what yet - hoping from chemo.

Hope the suggestions help
This too shall pass......

Pametha

Dylan,
You guys are in my prayers. I know you have to be exhausted. Is he in the hospital? Broke rib? That's really painful. No matter were it came from it's being taken care of now. My dad accidentally broke my grandmas rib long ago by trying to help her up. So he is remembering alll that and is not comfortable with us helping him up at all. He knows how easy them bugers are to break. It's gonna be ok. What stage of nsclc is he in? We are in 4. Hospice told us tonight he don't have a whole lot longer.
Tonight is my dads first night in the hospital bed. So far it seems ok. I just hope he will be happy with it. Hospice is so KOOL! We are all so tired and wiped out and they are really helping us alot tonight. My dads fallen down 2 times so far in the last 2 days? maybe 3 the days are all running together now. He is 6'4 I'm 5'4. and you wouldn't think that 1 foot makes a difference but it makes a huge difference. I'm going to try the silk pj thing but my dad is like Ben Cartwright on Bonanza. So, I don't know. I'm babbling sorry just reaaly tired.

Marie400

My Mom balked at a hospital bed too. She could no longer go up the stairs to her bedroom and sleeping on the couch just wasn't comfortable. At one of her appointments with her primary care (who is the world's greatest Dr!) I mentioned the hospital bed to him. He wholeheartedly agreed and convinced her (I don't even think she realized he was doing it!) to get a hospital bed. He wrote the Rx right then and it was delivered the next day. We moved the dining room around and put it there. She was close to the kitchen and the bathroom and could still see the TV in the living room. Plus, she was so much more comfortable and she didn't have to worry about tackling the stairs.

I think you do get to a point where nothing is really comfortable, but every little thing helps. Good luck.

Dyan

I understand your babbling! It gets to be too much. I had a hard time finding pj's too - my dad usually wears talls but I couldn't find any. I found the sheets at Target. They told them today that the broken rib was not from chemo, they are scheduling a CT scan for next week. Here we go! I can't imagine what he is thinking since he just watched his son suffer son much and now him. My brother had small cell - never had a chance, only 49. I am glad you have help from hospice, they are wonderful!!! Not only will they support your dad, but you and your family also. I hope your dad is more comfortable, they will give him whatever he needs. I hope he isn't afraid to ask for pain meds. Hang in there, it's not easy.

Dyan

Pametha

HI Dyan,
Well, I guess your fixing to get back on the merry go round. I hope you know what I mean. 49 is a young age. Ya know, it always seems alot harder when you don't know anything about something. But now he knows more than before. So maybe he has already thinking of a game plan on how hes gonna fight this fight. I'm hoping for ya though. Dylan, my dad passed away today. It's hurting me bad. I never thought I could hurt this way this bad for this long., And it's only just begun. I'm gonna be praying for you and your family. I really can't imagine what your dad is thinking or feeling, but I hope he makes whatever it is a possitive force to be delt with.
Pam

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