Struggling To Care for COPD Patient

Hello @duvie Nice to e-meet you here! I am Scott and I am sorry to hear of the health travails of your patient. I was my wife's caregiver for 14+ years and while she was on oxygen for a portion of that time as well as many other complications, she did not use bipap. I am hopeful others here in this forum or other discussion areas on Connect will be able to offer you the additional information you are seeking.

Continued strength, courage, and peace. Caregiving is a challenge all its own!

Hello @duvie, I’m my husbands carer. He has terminal lymphoma. I’ve been quiet on the scene here as we moved from the country back into the city for extra medical and family support and work. My husband came down with pneumonia at one time which took him into ICU for ten days. Although I’m not familiar with a bipap as he is no longer on oxygen. I didn’t hesitate to write my list of questions as they came up because it was too much to remember while other things are happening in present time. Sometimes I would google and read articles only from medical journals or Mayo, as others can be quite misleading, basis and even stressful to read. So I stuck with reputable sites. I also got phone numbers for nurses clinics if I needed direction, or had questions. I’ve learned how caring, for me, has developed into advocacy. And I find my questions are welcomed among the professionals. All the best and I wish you good self care, restful breaks and laughter to ease the challenges.

Hello @IndianaScott, The patient is my better half. Always nice to hear from other members. We were caregivers for her brother who has a trach and feeding tube which was [laced in Oct 2009. been caregivers since Feb 2010 when discharged. Now she has taken ill. Taking care of both is quite challenging. A bipap is just an upgrade from a Cpap. Cpap has continuous flow of air and a Bipap has 2 flow rates making it easier to exhale with a weaker air flow than inhale. Kinda like sticking your head out of a moving car window and trying to breathe. 14+ years is a long time especially is doing
it by yourself, at least most of the time....It's fantastic you are willing to be a mentor for others. Thanks for the response.

Hi again @duvie You have been at it a long time too! I came to Connect out of a sense that I had to do something to try and alter the isolation of caregiving for someone with a chronic disease. Being a real people-person (I was a fundraiser for the second 1/3 of my working life) the isolation was tough to manage for me.

When my wife was on O2 she would fight and fight and fight and fight (you get the idea) having the mask on her face. We finally had to use nasal tubes, which weren't perfect, but she tended to not notice at least while she was sleeping.

The bipap sounds like a great invention. When my dad was fighting congestive heart failure that might have been a wonderful thing for him, but his fight was before it was around.

Once again, nice to e-meet you here!
Courage, strength, and peace

Hello @mnina, It's great your taking care of your husband. My better half, Jo was getting pneumonia every year sometimes twice for about 4 years before I met her in 2004. She worked with the public handling money which is very dirty especially during the flu season. She has had Lupus for about 20 years which also affected her lungs and felt she could not take over-the-counter meds unless told by her PCP. when coming down with the flu she wait a week of two hoping it would go away. Then when it didn't she would finally call her PCP for an appointment having to wait for another 2 or 3 weeks. by then she had pneumonia. I finally got her to ask her PCP if she could take Contact as soon as she got the sniffles. PCP agreed to start cold or flu meds early while waiting to see her (PCP). Never had pneumonia again until last year when she was admitted in Late Jan. I have learned from us caring for her brother how important it is to write questions down for the Drs. Sometimes I give the list to them to read since they can read faster than I can ask the questions. Some will even write the answers down on the list for us. I also google to research valid information. I've watched videos on carotid artery surgery before she had hers done. I try to take care of myself but sometimes sleep is hard to come by especially when admitted in which I spend the night making sure she doesn't take her Bipap mask off leaving her without oxygen while she is sleeping, like this morning. Thanks for the response.

Hi @duvie, good to hear your story, it sounds like you’ve had alot of experience as a carer. I hope they give you a somewhat comfortable bed and breakfast when she’s admitted and you are there overnight. When I slept over at the hospital because he was so ill, and he wanted me to be there because he was so frightened as his condition was deteriorating, they would bring me a rollaway bed. I never had a good nights sleep, even with a rollaway or large chair. Breakfast was tiny and a shower gave me enough energy to go home , get fresh clothes, cry, eat something and pray with my neighbor. Then I would head back to do it all over again, I felt like I was a part of the team of specialists, nurses, dietician, physio, it became my job in a way, but with no pay, no holidays , overtime etc. it’s amaxing the strength and determination of love and devotion. The good staff made errors at times and I was aware but fortunetly nothing that resulted in any legal action. It sounds like you are doing an amazing job, in such a difficult situation. People just kept saying to me, take care of yourself, only sleep there when you really have to, take a break, over and over I heard this but it took a few years to sink in. I relied on this forum when we lived in the country and I would be awake in the wee hours of the morning feeling so alone. It’s great we have this tool because the job of a carer needs to be talked about. And another carer really understands. Looking forward to hearing more from you and Indiana Scott and the others. I hope you have a good nights sleep soon and maybe even several of them in a row. Walking in hope and faith , just one day at a time.

Hello @IndianaScott, Yes, I've been at it for 8 years which feels like a lot more with just one patient. Now I have another with multiole issues but mainly congestive heart failure and respiratory failure, Lilbit. She was discharged Tues. 2/20/2018. This afternoon the home health nurse said her lungs sound bad and thought she go back to the ER and here it is Fri.2/23/2018.

It's been hard getting time to respond back to members. Used to be I couldn't get enough of the joy of trying to help others on "Inspire."
Now it's all the tasks that she used to do along with making sure she has what she needs along with her brother.

I think you are doing a great job trying to help others. Sounds like being a fundraiser would be very challenging at times. One third of someone's life is a long time and I would suspect that you became very good at it.

I would imagine it is rather difficult to get used to having a nasal cannula or mask on your face while sleeping. Sometimes I try to put myself in her shoes and ask what I would do in certain circumstances.

Yes, supposedly the Bipap is easier for someone with weak lungs to breathe out against the force of air being forced in your face.

You have had a lot of tough years as a caregiver, then to lose family members,
and yet you have a desire still to stay on site in hopes of helping others.

Hat's Off To You

Thank you for the kind words @duvie I understand what you are saying --- time is never one's own when they are a caregiver. I used to do my initial posts to Connect at 2 or 3 AM, which was the only time I would get to focus on something other than patient needs and I also couldn't do anything (vacuum, laundry, etc.) that made noise! There were days I chose to just sit in the quite, dark of our living room rather than post too.

I know fundraising is not for everyone, but I came to really love it, especially for the 8 years I was with an international child and family development agency. Amazingly fulfilling, while at the same time you do have to develop thick skin due to all the times you hear 'no' when you ask for a donation! I do miss it now, but can't find an organization interested in an old guy with a huge gap in his employment history even if it was for caregiving. BTW caregiving was WAY tougher than fundraising for sure 🙂

I hope your day goes smoothly and the sun shines!

Strength, courage, and peace!

Hello @mnina, Thanks for the kind words. I'm really sorry in getting back to you almost a week later. It used to not be that way. I used to respond daily almost within hrs.
Now it seems I only have a short time at night. Eight years with feeding tubes but only 1 year with someone who has had congestive heart failure and COPD. Watching someone struggling to breathe is very hard when you don't know how to make things better.

I asked if we could have a double bed and the staff just laughed at me, pushed a hard recliner in the room, and said, "Here's your double bed."
It was very uncomfortable and didn't recline much. Rooms are narrow and I've been tempted to bring a cot. It's narrower than the recliner, yet longer.
Visitors during the day can sit several people on the cot rather than some having to stand.

Breakfast is when I go down to the cafeteria, purchase it, and bring it back to the room to eat with her.
I understand about having to go home, take care of business, attempt some good sleep while family members are there, eat, and get back.
I don't sleep at the hospital during the night due to listening to what she needs when she wakes. The main reason is in case her Bipap mask comes off which means she's getting no oxygen, then I'm there to help her place it back on her head.
Many times nurses can get quite busy and not quick to respond when someone presses the nurses call button.
I have people saying I need to take care of myself in order to take of others. I know that but still it's hard. I know I can only do so much and I won't always be available as grocery shopping along with other errands have to be done. We try to have someone take my place for a while which really helps.

I love forum sites because like you and others say, it's great to find others who totally understand what another may be going through.
Not feeling alone and having someone to talk with even though you may never have met them, is truly a feeling of relief to some extent.
Asking info in difficult situations so one can discuss with their medical team and hopefully finding something that may help a particular patient out is great advantage with forum sites. Don't know what I would have done without my sites. It appears I joined Mayo in 2012 but never posted. New years Day 2013 I joined Inspire.com and fell in love with the feeding tube site Oley Foundation-Inspire. I find sometimes it helps to be in multiple groups.

Thanks Again For The Kind Words

Hello @IndianaScott, You hit it on the head for me when you said you used to post at 2 or 3 AM. Late at night or early morning now is about my only time for posting or commenting.

Didn't think about the thich skin part but I know what you mean. I guess that's one of the main reasons I never tried to sell things door to door. I remember my mom when I was a teenager going door to door doing all types of surveys. When out of school I tried to help to reduce the time she spent walking which caused her feet to hurt and getting rejected especially when a teenager came to the door, lol.

Thanks for the reply