Care giver advise for end stage copd
My mom has COPD for decades. It was originally occasional oxygen at 2 liters to 4 liters 24x7. Then she got pneumonia, now it’s 6 liters and she is basically trapped in the house. Since that pneumonia, she has had a few additional hospitalization to rehabs to home cycles and is currently in rehab after a flu plus pneumonia. The hospital suggested both palliative and/or hospice care but given her ability to go back to 6 liters ended with a wait and see approach. Very confusing for a google enabled medical person. Have others had similar experiences, when do you rally folks that are not close by to see their grandmother? When is the right time for these services - personal experience is appreciated. Also how do you stay positive while being open with such heavy conversations. Anything close to planning brings pain and anxiety to my mom so I tend to limit those discussions. At this point, my mom has basically been inactive since the beginning of the year with a few positive sudo independence periods and being optimistic I hope that she will complete this rehab with that same independence but feel that could be more likely than not. BTW she has elected me the decision maker on these type of decisions hence my appreciation of others experiences. Thanks in advance and I hope this will help others in similar circumstances as it sucks not knowing the right answer.
I think her Pulmonologist and/or her Primary Care physician would have the best input on her recovery expectations. I would try to talk to the physician that knows her best.
I personally had a severe case of pneumonia that left me struggling for my life. That was 5 years ago. I am considered stage 4 COPD but I’m still here. I used 8 plus liters throughout my rehab and today I use up to 6 liters if I’m exerting myself. I say this to give you hope but her physician would be more knowledgeable about her condition.
It is such a sensitive time for you both and a huge responsibility to make these decisions. I wish you the very best, Becky (moderator)
Hi Cassie. My heart goes out to you for all you're experiencing with your mom. I lost my grandmother to COPD in 2013 and saw my mom navigate the same caregiving struggle that you're now facing. Your mom is fortunate to have a caring child who has her best interests at heart!
Ultimately, the decision to pursue hospice is a deeply personal choice. The "right time" is when it feels right for you and for mom. It is usually required for a doctor to certify they expect life expectancy to be less than six months to begin hospice. HOWEVER -- and this is so important -- no one can predict how their life will progress, and any efforts to do so are honestly just an educated guess. My grandmother began hospice, discontinued many of her treatments, and then ended up rallying back again. She lived for more than a year and a half, and also recovered from a bout of pneumonia in that time.
If you all decide it's not time for hospice, you might explore other options with the doctor, like in-home nursing care or additional medication/therapy options that she hasn't tried yet.
As for when to call in your family -- it's never too soon. I think most of our community members here would agree that they want to see their loved ones while they are feeling well enough to truly enjoy the experience, to laugh and make memories with them! If you're wondering about end of life visits, though, a good hospice nurse will be able to identify signs that end of life is approaching.
I hope some of this is helpful for you. You are not alone in this and we are here to listen and support you! Sending hugs. Keep us posted. -Melissa, copd teamYou are so right about it sucks not knowing the "right answer", but unfortunately will anyone every know? Quickie about me so you have an idea where I am responding from. I was a caregiver to both my mother and father-in laws, then helped with my father from a distance and multiple trips across country to give my sister a break. Currently I am the one now needing the beginning of care giving. COPD stage 4, 2 plus yrs I believe now, try not to dwell to much on that. This last year has been a real challenge, multiple trips to the hospital starting last January being treated for pneumonia and exasperation so they thought, but with a few months it was discovered that I had Stage 3a Lung caner. Went through radiation and chemo for I did not qualify for any surgery to help out, still don't. Been in remission since teh end of November YEAH and still going. Things has not ended for the I had been hospitalized just after Christmas for Influenza A and pneumonia, yip a week in the hospital. Home I came with more meds etc, March 13th arrived, back to the ER I go and few more days in the hospital, they treated me for exasperation but let me loose after 3 days, come to find out that was a no no, with in 5 days and seeing all more doctors in those 5 days I ended back in to the ER via ambulance with pneumonia and severe bronchitis another 5 days in the hospital, med galore, you name they hit me with it. I was released yet again, feeling better and lungs sounding clear enough, meds to boot for home, with in 24 hrs on Easter Sunday I was back to the ER via ambulance again, this time with still pneumonia, COVID and Covid pneumonia. They treated me in the ER with emergency rescue bipap, God send! And I was just released after another 2 days ago with meds and such again. I am on 2liters 24/7, why only 2 liters well that is all that is needed to keep me at 98 and 99 % on my 02levels. Hoping to stay home longer this time for sure, but allergy season is here and I am allergic to all the pollen in the air. I plan on being a round a long time still, I will fight for that. NO I do not to much around the house anymore, nor do I leave for fear of getting sick again, at least until the meds are finished and then we will go from there and I get my walking legs back. I was alarmed to my hospital bed and had to ring for help just to use the bedside commode. Yeah. Anyway that is me.
As for you and your more, I commend you on your actions of helping your mom through all this.. Please keep in mind of your care also, it's so important to keep your physical and mental health up, the additional stress are are under can take its toll .
Quoting you "BTW she has elected me the decision maker on these type ". Is there anything in writing stating this. Here in the US usually a Power of Attorney is needed to give you this option, your mom would have to sign of course, There are different type of POA's Medical, Financial and General. IF this has not happened I would highly recommend this being the first item of business to be handled ASAP, this keeps thing legal and easier for you when you are in need of making those choices, it's also a good time to talk with your mom about her wishes as these are getting handled. If these items are already done of course, yeah one ugly step handled. On to the next.
I would think you realize or know by now that people with chronic and or terminal illness suffer from Depression and Anxiety on a regular basis. Does your mother have meds for these? If so maybe it would be time to have them looked at again, maybe a change of strength could be helpful or the use of them a little more often.
The chat that you are dreading from having with your mom is going to be emotional for you both, just is what it is. Maybe you could get her doctors office to help, making her more comfortable surrounded not only by you, but others that she trust, this easy some of the anxiety or knowing that people have her best interest at heart also they c an help explain the differences of the care options when and if ever needed. Personally I would rather cover all this "bad stuff" in one shot and get it over with, thus lessoning the anxiety it is already causing myself daily, then life can move on to more fun and interesting things. Like visits from family or even some extra phone calls. Have family chats about silly and fun times, check out old photos and finding out whom and whom, writing the names and relationships on the back of them. Even ask silly questions of your mom about what was the most naughty thing she did as a kid / teenager, stories an memories will pop some good conversations and maybe more answers too for current events. Just because she is not as active does not mean she is ready to give up.
I so wish you well with this, it's a hard job and she is fortunate that you are willing. You got this, once its handled you and your mom will feel the relief of it being handled.
Please keep us posted and please take care of yourself. Yes have family start filtering in as they can, it will help keep your moms spirits up, but not everyone at one time, unless that is a normal activity of course,
Best to you, DorisI have been released 3 times now with lots of pneumonia from the hospital. The hospital was full I understand. Sent to rehab and they could do nothing until they got rid of the pneumonia. Another two weeks each time.
Adios, THOMASSorry this has happened to you, it shouldn't but when the hospitals get overhelmed they have to do something I guess. I ha to push for any kind of rehab let alone a walker to use at home, but I pushed and I did received. Currently a home health care team is now coming in to my home, just getting started to make sure that I get stronger, the hospital therapist said I was good to go, but sad I could not even feel my legs from the knees down. Looks like with me being my own advocate is working out well for me and I will hopefully be back on track soon. I wish you better health and hoping you get the care that you truly need.
sorry I am a long winded person, but hey trying here 😀 Just wanted to mention something else. There is such a thing called "Living Will" and here in Georgia there is "Georgia Advance Directive for Health Care" pretty much the same thing, it is my wishes of how I wish to be care for at the end of life, this also gives my permission to those I wish to approve my wishes and make sure they are followed. I personally have named my husband and both of my adult daughters with the last resort being the physician at the time. My personal wishes are this: Organ Donation, No extended life support only what is needed to harvest any viable organ(s). No autopsy unless foul play or malpractice has taken place. These are simple forms, check or initial the box, fill in names and addresses and 2 witnesses that is NOT family members. Photo Copies are then given to doctor, hospital etc... Of course this can be changed any time I wish, nothing ever really set in stone. Yes, the last couple times to the ER I did sign DNR (Do Not Resuscitate), but this is no longer going to happen for a family member is in need of an Kidney organ transplant and well the DNR could interfere with me donating directly to her for my body will need to be kept viable. My husband also has one, he did things a little different then I, but my health is much worse then his. This might be something that could be helpful to you and your family also. What I feel is nice about these forms is that I have stated what I wanted, no one needs to make a choice for me and if I am put on extended life support for some reason the family will not have to fight to have it removed for my wishes are Stated and hospital has to follow. Once these forms were filled out and done, then we informed our daughters with copies and copies of our Wills. No worries for them Currently there is some living donors being checked out. I am not able to do living donor. What would happen if needed and I am filling out paperwork for my organ(s) to be donated to my niece first, then to the general public if I am not a match or she no longer is in need. At time of death so to speak that is when all the testing for my end would take place, again if I am not a good match, but good for someone else, then my organ would be used and my niece would be moved up on the list by 2 spaces instead of 1. Of course anything else that would be usable from me would go to where is was needed to the first on the list that I would match. Doing DNR, you can still be a donor but it limits what organs and such can be used for some of the parts need to be kept viable compared to some do not. That is the short of it anyway. Still learning as we are going here, this is pretty much all new to our family. Thanks for asking ! OK, that makes sense. Just wanted to make sure you weren't giving up on your wishes unnecessarily. I hope your niece finds her (living) donor ASAP! And thanks for telling all of us more about the process. Never hurts to learn more. -Melissa, copd team
