Looking for some help. Mom was hospitalized for 5 days last month with pneumonia, and possible congestive heart failure. The CHF was mentioned as a maybe on one of her 3 chest xrays, but never discussed by the hospitalist. Only when I had her records reviewed by her cardiologist was it mentioned as a possibility. Mom sees the cardiologist Friday, so hoping for more information.
The issue we are having, is she is now on oxygen and caregivers 24 hours a day. The thought was she might need supplemental oxygen for about a week; it is now been 3 weeks, and no clear end in sight to discontinue oxygen. While she is definitely better, and getting around mostly independently, she is still a little wobbly at times, and a bit forgetful. The caregivers are there to make sure she is safe, and help her where needed. While the women are nice, mom is complaining about them hovering over her. We have explained that I need to see more improvement, and she can navigate the 25ft of oxygen tubing.
As she goes from her living room, to kitchen, to bedroom and bathroom, the tubing gets underfoot, caught in her rollator wheels, or around a chair. Once she was tangled and didnât know, so the connector separated. Had she been alone, she would not have been able to put the connector back together as she has lost most of the strength in her hand. This is assuming she would even notice she was no longer getting oxygen in! I am thinking I need to keep 24 hour help there until she is no longer needing oxygen, assuming she ever gets there. I am worried this need for oxygen might be more heart related.
While i have done a quick google search, might anyone know of better tubing for a large oxygen concentrator? She needs the 25 feet to get around her apartment, and has been show how to roll it in her hand before going from point A to B, and then release as she goes, but she forgets. Paying for 24 care is expensive, and she will be out of money next month at this rate. She is in an independent living, and before this hospitalization, she was perfectly fine alone. If we could get her strength up and no oxygen, she would be fine where she is. Might be wishful thinking.
Does she use a walker? Could she use a portable battery operated concentrator in her walker basket during the day? That would assume she could switch from the long corded one when she wakes up.
She is now using a rollator, so it has a seat. We do have a battery operated one coming this week from the oxygen company, but we arenât 100% sure she will be able to use it. While the home concentrator and oxygen canisters we currently use when we leave for appointments are continuous oxygen, the battery operated ones require her to breath in from her nose to receive oxygen. Even if she is able to use it successfully, she will only be able to use it when out and about; currently the pulmonologist wants her on the large plug in unit while at home. He O2 drops with activity, even when wearing the oxygen.
@kelsmom trickle info is the worst! I wish you luck in sorting it all out and glad you are able to step back a bit, it is still hard.
@illneversaynever even when we donât have relevant experiences to share, it is still helpful (well it was for me!) to come vent and whine all you want. It is hard to hear scary things about our loved ones (or even not loved but still bad news is bad).
@snowball I donât have that experience, but our 87 year old neighbor guy, had emphysema and doing quite well, last year fell doing yard work, resulting in a concussion and broken ribs (3 months later my DH fell and broke 4 ribs). But neighbor guy had to go on the cord O2 and in the past year suffered 2 more hospitalizations for pneumonia. But last month he was still out doing yard work. They have a huge yard and he mostly putters, but still. He is thinner and doesnât talk much, but he did manage to get back on his feet and back out there. He has had good PT come in to the home ever since which I think helps. Donât forget the exercise part of healing is all I am saying. Yoga and or Tai Chi with deep breathing might help your mom. If not, then come here and Iâll hold your hand because this time of life is hard. My DH never got back to where he was before he fell, but he is back doing some hikes. It took an awful lot out of him though and he isnât 87.
One thing that helps me with O2 tubing is to ask for smaller lengths of tubing and swivel connectors. The O2 supplier should be able to provide them at no extra charge as past of supplying O2. You are supposed to have the larger hole in the swivel facing the O2 source and the smaller hole facing the patient.
When you have shorter hoses with swivels, there is less tangling. Itâs also easier for people to help untangle you.
Iâm sorry your mom is being challenged with tubing. I havenât found any great solutions, other than trying to be as mindful as possible. They do offer tubing in green color so itâs more obvious where it is than the clear tubing.
During the day, I do tend to use my battery operated portable concentrator, but as you and the doc know it doesnât produce as much O2 and requires swapping out and recharging batteries, which is more for patient & caregiver to do.
I do wish there were an easy answerâit used to be liquid O2 but itâs very very difficult for anyone to get that any more in the US. It was taken away from me years ago. We have a bill in Congress called SOAR Act about it but no idea of its chances.
My daughter was visiting, we spent some time with my in-laws, the in-laws were delighted by the visit.
Saying that, visiting is best in short intervals. My daughter wanted to go there for dinner, stay overnight and go back the next day until their late afternoon flight. In laws live 2 hours from us
We were dubious, went for dinner. After dinner, Daughter changed her flights to leave at noon.
Visited them for 2 hours, had dinner. Stayed at a relatives, not the in-laws. Came back in the morning for 2 more hours. It was plenty. Everything is best in small doses.
Daughter was giving advice, we should do this, we should do that. All those things have been suggested, we can suggest but they are in charge and they make the decisions.
For instance, my fil has a rocking recliner. He has a lot of trouble getting out. My in-laws have plenty of money to buy an assisted recliner. But they resist. They know they should. But they donât. My daughter said to surprise them. Iâm not going to do that. My mil is not happy when it isnât on her terms.
If thatâs how they want it, I definitely am not willing to fight with her. My husband and his sibling are even less so.
@HImom Thank you for the help. We do have the green tubing as well as clear. I will ask with the next delivery about shorter length and the swivel connectors.
As long as someone is with mom, there isnât a problem, although some times she takes off with the rollator before the cargiver can get the tubing from around the coffee table or caught in the wheels! At 94, she moves when she has the rollator and just keeps going, not thinking about the tubing.
I am a bit overwhelmed with her care; it has been almost 2 years since my husband past, so having a bit of PTSD. My mother has always been a complainer, and it is worst now that she doesnât feel great. I donât need a pat on the back for handling all her medical and personal care, but I donât need to be bitched at. Everything is someone elseâs fault. The freezer is packed wrong and she canât find anything-she is the only one that has put things in the freezer. The caregiver put 2 potatoes in the oven as she wanted one for dinner, problem is, she put both in and they were hard. I could go on, but will spare you!
We will get through this, hopefully before I lose it. I am leaving town tomorrow to keep my grandkids, which will not be stress free, but more enjoyable. I was thinking about not going, but mom is stable, and just maybe it will be a bit of a break for me; I wonât be driving to her place daily. Of course, I will still be orchestrating everything by phone, and my aunt will have to handle anything needed in person.
I think itâs healthy for you to vent here and for taking care of yourself. I hope your visit with grandkids will be wonderful and rejuvenating. I donât know have any advice concerning your momâs health matters and crabbiness. It all sounds like a lot. Youâre doing a lot and doing your best. Thatâs all you can do.
I also care for my mom (85) nearbyâŠshe doesnât want to leave her house where she and dad resided for 40 years. He passed 3 years ago, and the house is more than she needs, but she doesnât want to leave. I also donât want the responsibility of handling all of it and her unhappiness if she doesnât like the new accommodations. I just hope things will go ok for awhile, but I know things can change in a minute.
Some folks use a regular hose reel to roll up the tubing. When I use tubing, I just gather it in my arm as I go and then let it out. She could learn to gather it in the basket or seat of the rollator IF she was motivated to do so. Tubing IS a pain in the neck/butt/everywhere, but O2 allows for better and clearer thinking and reduces stress on other body parts and organs.
Yes, Iâm VERY glad you are getting a change of pace and scenery in spending time with the grandkids. Iâm sure itâs exhausting going from caring for you poor departed H and now your grumpy mom. PTSD would CERTAINLY be understandableâmaybe a good therapist for YOU might be helpful as well?
Tubing does come in lengths of 5â, 7â, 10â, 20â. I prefer the shorter lengths, green when possible for better visibility.
She does gather it when heading to another room; she just forgets to release it!
I have asked the caregivers to remind her what to do, but to let her do it herself so it might stick to memory. Of course they can still be behind her if she gets tangled or forgets to let the line out.
I will have to look into the tube reels, but going to assume it is just something to will have to fuss with. I will research while the kids are in school Thursday.
This might be a silly question, but I just read that one shouldnât use a hair dryer or hairspray while using oxygen. While mom could slip the oxygen off while spray her hair a couple of times a week, she does hold a blow dryer up to her hair after she has rolled it. Is there really a danger here, or is it just when using by the concentrator? It never crossed my mind that she shouldnât be using the dryer!
I have never heard of any problem with using a blow dryer with O2. For hairspray, she can ask her O2 provider and Iâve posted the question on a message board and should be getting an answer soon.
The main thing is to keep sparks away from O2, since of course it will burn if there is a spark.
Oxygen by itself is not flammable but it is a powerful oxidizer that aids combustion like there is no tomorrow! So if there is a spark (heat) and some flammable material (plastic, hair, solvent in hairspray, etc. - the fuel), if oxygen is added to the mix, combustion can happen quickly. Static electricity can provide that spark.
@BunsenBurner What I had read (pdf from American Lung Association) also mentioned static, and said if you sleep with oxygen, it was best to use 100% cotton sheets! Do I really need to make sure mom doesnât dry her hair with a hair dryer, or is there just a very very small change of a spark? If I now tell her she canât roll and dry her hair, she may really be mad at me!
Wow, Iâve been using O2 for over a decade and never heard of any of these things and have not had any issues. I only sleep with cotton sheetsâtoo humid otherwise.
A child died in a hyperbaric oxygen chamber at a facility earlier this year. One of the contributing factors to the fire that killed him was pjâs containing polyester. It seems that polyester and concentrated oxygen donât play well together.
