Loss of my Mother to COPD/Emphysema/Pneumonia/Heart Failure

[Lesbutterfly]

Hi. As I'm typing this new forum, it is almost 2 weeks to the minute that I was at the hospital, alone, with the doctor telling me that my Mother couldn't be brought back. How it is haunting me still (I know it hasn't been long).

Anything I type is not to take anything away from anyone else and their own special relationships with their families/loved ones. My Mother and I were so incredibly and intensely close. Although I did not live close to her, I was visiting often and we spoke every single day, sometimes more than once. She'd had health problems since her mid-30's, when she was first diagnosed with Multiple Sclerosis. Over the years, the illnesses kept increasing although the MS was in relative remission (off and on). The list of her illnesses included diabetes, fibromyalgia, high cholesterol, osteo-arthritis, COPD that had progressed to Emphysema, acid reflux syndrome, chronic sinusitis and so on.

Be that as it may, my Mom was stubborn and independent and still lived at home, alone, right to the last. In late October, early November, she developed pneumonia. Not the first time with it, but serious enough that I came to her home for a few days to make sure she was okay. She'd had to go to the hospital in an ambulance but they let her come home because someone was going to be with her On the 4th day, she seemed to be improving, I left lots of pre-cooked meals for her, had cleaned her whole home, had made tending to her cats as easy as I could (food was easily accessible, etc). I had her coffee supplies at easy reaching for her so that very little effort was required for her to continue to get better. Her meds finished and she felt no better and went back to hospital. They gave her more meds for longer period and steroids. I went up again the following weekend but she was not sure of improving. As I would watch her, I could see that in that last year, she was really deteriorating. My sister and I were incredibly concerned and had been investigating all sorts of home care and options. Mom finished the next round of meds and for a few days, felt better. But then started to go downhill again and the doctor renewed her meds for an additional 4 days. During this time we spent Christmas (late) with her and celebrated her 74th birthday on Dec 29th. On Jan 2, she felt okay enough to go out with my sister to do some errands and see doctor for follow-up. I was concerned that she'd done too much but she was "proud" for having been able to get out. By Thursday Jan 4, she was sounding not good and confused in speech, a sign I had seen before when she was getting sick. I alerted my sister of my concern (she lives closer) and we all agreed that if not better by Sat morning, she was going back to hospital. They ran many tests again and I decided on Sat afternoon to head back up as my sister could not stay overnight and I was really concerned that the pneumonia was back or had never really gone. I notified my boss that I'd take some time. The hospital told Mom and sis this time that all of the previous meds had not touched the pneumonia. They put her on super-drugs and steroids again, and she came home. I was there with food and humidifiers and other things requested.

I didn't let Mom do a thing. Sister was checking in regularly but we were both very concerned. Our grandmother (Mom's mom) had passed away of this same illness 36 years earlier. Mom had smoked for 55 years but had quit 7 years ago. We watched the Golden Globe awards on Sunday night and had a nice dinner I'd made for her. Monday I stepped out to get a nebulizer for her, which had been helping her at the hospital. Mom showed a little more energy by Monday evening and we had another nice dinner, watched TV and a movie and she even had seconds and wanted dessert. Still, she was so weak and tired really and I just felt things were wrong. I had thought maybe I'd be able to go home by the Wednesday but said it was open and Mom expressed over and over how grateful she was that I was there and that she'd been so scared lately. I headed to bed at almost midnight, assured by Mom (who always stayed up late) that she could get to bed and would go soon. Having also already spoken to my husband on the phone, I went to check emails. I started to cry as I wrote an emotional email to my husband saying I could feel she was dying, maybe not this week or month, but I could see it. I went to bed and nodded off but slept fitfully (as always).

In the morning, Tues Jan 9th, Mom felt a little perkier and that she was breathing a little better - must have been the nebulizer she thought! I made her breakfast, which she enjoyed, and we talked about things I needed to go and get in town for her later that morning. We also discussed more calls we needed to follow-up on for homecare and such. I headed to town late morning, and I just went to one grocery store and the pharmacy and post office. Although not the best food, Mom had specifically asked me to bring her a hamburger for lunch, even though she had made herself a sandwich. I got back and she ate part of the hamburger but asked me to wrap up the rest. Her voice was a little gravelly and she felt that she was going to cough up some mucus, which she was always trying to do as it made her feel like the infection was coming out of her. Around 1:40 pm, a homecare nurse contacted us and said she could squeeze in seeing us around 2:30 pm. We said great and I tidied up the kitchen table (where we always were) and made space for the nurse to use for notes and such. She arrived shortly thereafter and we all talked about what kind of things Mom would need assistance with starting the following week. I had intended by this point to stay on into the weekend. Mom's voice continued to be gravelly but none of us thought anything additionally serious as she was recovering from pneumonia.

The nurse left. Mom came out to sunporch with me as I was fidgeting with a patio door that seemed to have gotten off track and wasn't closing at the top - too much draft (it is winter). Almost immediately she seemed to have more trouble breathing. Understanding here, that she's on constant oxygen and levels were higher until pneumonia was gone. She bent herself over as she felt that helped her at times. I gently rubbed her back until she asked me to stop but she started having trouble being able to talk. She gently went to her knees, also trying to help herself and I asked if I needed to call the ambulance. At first she said no but then said yes. I quickly called and gave details all the while staying with her and trying to gather up her portable oxygen, meds, coat, boots, etc. It seemed like forever for the ambulance to arrive but it really wasn't. Mom's house is awkward but there is a lift but they couldn't bring in a gurney. They managed to get her onto a kitchen chair they brought to her and carried her to the lift and down to the gurney/ambulance. They started a ventilator and although still laboured, her breathing seemed better. She was sitting up in ambulance and I looked at her and said, "they're here and I'm right behind you. You will be ok." She nodded at me and I know the ambulance staff had a CPAP ready in case they needed to switch. We left for hospital which was only 9 km away. I pulled in and grabbed her meds and purse and rushed into emergency. Being familiar with the hospital, I knew right where to go. They had just taken her into the trauma room and the one ambulance lady motioned for me to go in. I could see Mom was not awake, and the doctor told me she was very sick and they would need to intubate her and find an ICU bed, likely in Kingston. They were calling Mom's name but she wasn't responding. I was asked gently to step out.

During the commotion at home I had called my sister but hadn't told her to come right away as I didn't think there was much she could do and I know she was working (she works at home). I asked the ambulance lady about what happened in the ride there and was told they'd had to switch to CPAP and by the time they arrived, Mom was not responding to them and was fighting the mask. She lost consciousness as they brought her in. I called my sister to update but the doctor came out and said she needed to talk to me right now. Mom's heart had stopped and they were doing compressions. They asked about heroic measures. I had to tell them she wanted a do not resuscitate if she'd be on life support but I told them to do what they needed at that point. A few minutes later I was back on phone with sister and doctor came out to ask if they could do shock treatment. I had to call sister back but said yes. But it was too late. The next conversation, standing in a hospital, alone, crying, was to hear my Mother was gone. It would not have mattered if they'd gotten her heart beating, she'd have been on a breathing tube the rest of her life but her heart wouldn't respond.

To have to call my sister was a nightmare. Four years earlier, I'd gotten another horrible call, from a woman I don't know, my nephew's sister-in-law. My nephew and sister were estranged and she hadn't spoken to him in almost 2 years. This woman was telling me he'd died of a heart attack. So there I was, left with the burden to go to my sister and tell her that her only son was gone - she'd never have grandchildren, she'd never see him again. And now, I had to call her back to say our Mother was gone too.

The hospital cleaned her up and let me go back into the room to be with her. They knew my sister was coming and they were gracious and said I could stay as long as I wanted. That was around 4:30 pm. It all still seems unreal, me in the room alone with my Mom, lifeless. During the time waiting for my sister I spoke with a very kind nurse and made some calls (or maybe some were before I went in?). My sister arrived around 5:20 or so. The doctor came to talk to us, explain, confirm that the COPD/Emphysema was in the final stages and that it was inevitable. They asked if we wanted an autopsy, which we did not.

Two weeks ago, at this time. I've already written too much. Will end my post now.

[reader]

Dear Les,

I'm so sorry for your loss. Thank you for taking the time to share your story with us.

Please know we are all here for you. Thinking of you and your family.

[Lesbutterfly]

Thank you. I was worried I wrote too much.

[reader]

Dear Les,

Please know you can never write too much. We all need to express ourselves and know we've been heard.

Take care and keep taking it day by day. My thoughts and prayers are with you.

[Dgiirl]

@Lesbutterfly my condolences on your loss.  Don't ever worry that expressing yourself takes anything away from others.  We are all here because we lost a loved one and we all here to help support one another, and often sharing our stories help others.

I'm very sorry your mother's health deteriorated so quickly. However, after witnessing my own father dealing with copd I know how scary all of that is.  The one thing my Dad stressed to me was DNR.  Near the end, we had a serious scare with his oxygen all over the place and him grasping for air.  He was rushed to hospital and the doctors said his only chance was an operation, but in order to do the operation, he would need to have a tube, and once he was on tube, he'd never get off.  We said no and so the doctors did a blood transfusion and the family waited. We had a miracle happen, my father survived that night, shocking all the doctors.  He was conscious the next day and stayed in the hospital for two more weeks waiting for palliative care. He didn't realize he almost died.  When we finally told him everything, he told us we did the right thing. He did not want to be on tube.  He died peacefully in his sleep after the two weeks. Copd is horrible.  To watch someone grasp for breath just by simple movements, and it gets worse and worse.  Take some comfort knowing you were with her when she passed and she knew how much you loved her.