A lonely journey!
Hi Everyone,
My mum was diagnosed with copd 20 years ago. Up until a year ago she only just started to be physically effected by it. In January this year she had an exacerbation and they said she'd be lucky to make it through the night. Well she did make it and now we have district nurses and palliative care helping me care for her after telling us she had months left. Slowely but surely after several courses of steroids and what i would say non serious exacerbations her resting oxygen levels now sit at 80/81%. She has been confused these past couple.days and her left foot has swollen with pain.
Can anyone tell me what their experience of this disease is? I have emotional whiplash from the coming and goings of "is this it" i have seen her physically waste away in front of my eyes, i am with her daily whilst working and juggling the kids. I guess my aim is to just try and relax a bit, i'm scared stiff.
I so feel for you and your mom. This is a tough time. I have been in stage 4 for a few years, but not at that point. I wish the doctors would quit scaring people with dire predictions. Four years ago, when I was hospitalized (on my 70th birthday, no less!) some doctor told me to get my affairs in order, and call hospice in the next several months, but not more than a year.
Six months later I had the endobronchial valves installed, and I don't mostly need O2 except to sleep. I did lose some weight, from 135 to 111, but it has remained constant for a year, so it doesn't bother me.
This February I was again hospitalized, and a another doctor looked at the x-rays and said, "Boy! Your lungs are really terrible. Don't know how you've made it this far." Not sure if this relates to your mom, except to say don't buy into the doom and gloom. COPD is a tough disease, and there are big ups and downs. People on this site who are desperately ill are still hanging in there a year later.
The best advice I have is to try to keep all the balls in the air with a sense of humor. Stress is so hard on you, and you have such a big role. A friend once told me that we don't know what is going to happen in the next five minutes, so try to relax and not worry too much. Something that also helps me is to keep in touch with God. My last thought at night is, Thy Will be done.
You're in my prayers.
My heart goes out to you and your family. It's difficult to watch someone you love decline. As I'm sure you've heard from others, there is no definite "this is it" for a person with COPD. Everyone is different and everyone progresses at a different pace. I know it's easier said than done, but try to just take each day for what it is. It's another day you have your mom with you and another day to make memories and just live.
It's normal to be scared, remember that. Don't beat yourself up, just take each day as it comes. COPD tends to be a roller coaster of ups and downs and then some even-keel. Emotionally that can be trying, but sometimes it's easier if you're prepared for those ups and downs.made a great suggestion - "don't buy into the gloom and doom". I love that!
Take care and know this community is here for you and your mom.
Best,
Lyn (site moderator COPD.net)Just writing to say how much your story resonated. I am in a very similar spot with my mom and it is haaaard. I don't have any magic answers, but know you are not alone - and thanks for helping me feel less so. I'm sorry to hear you're in the same spot. It's so true that although it may seem like it at times, you're not alone in this. What have you found helps you get through each day and the various trials that come along?
Take care -
Lyn (site moderator COPD.net)I would start this by saying I am incredibly privileged, and a lot of what is helping me is stuff I know I am so lucky to have available. I have a lot of people in my corner offering support, but it is not always easy or comfortable to accept that help. I am learning to do so. I figure, even if I am still doing the Big Hard Stuff, if I let my friend pay for the coffee or bring some flowers or whatever, I will soak up every bit of that goodness that I can. I also have a good therapist, which I highly recommend, if for no reason other than it is one hour each week that is just for me to sound off however I need to, with no worry about how my big emotions are impacting the other person or our relationship. I also have a really supportive workplace and have taken a lot of time off, and will take more. If you are lucky enough to have a workplace that has paid leave, take advantage of it. At first I was reluctant and apologetic, feeling like I was letting my team down, but it is clear that I can't keep working at this pace, that something has to give, and that my mom is the priority right now. I do not have children of my own, so I am really feeling for and others who have to balance the caretaking across generations. I hope you have people to help. None of these things fixes how hard it is to see my mom struggle, nor does it mitigate the whiplash effect of thinking we are at the end, only to pull back from that brink again and again... But it does help me stay centered so I can keep moving through my days.
Hi
! I just wanted to send you some Hugs your way. 💜🙏 I went through this with my mom but it was from severe RA and not COPD so it's hard to compare. I feel you. My mom was the same and just wasted away before our eyes. I don't have an answer for you but just wanted you to know that you're not alone. Best, Jackie (Moderator)
