I'm the caregiver and looking for advice/support
My mother has COPD (stage 4 I believe). She got diagnosed in 2019 and quit smoking instantly (cold turkey). I'm very proud of her for that fact and that she tries her best. I need advice/support because this year (started after weather changed and got very hot, humid, etc) she started having more of a problem doing things. She takes trelegy every day since she was diagnosed and recently got a nebulizer. She's not as consistent with the nebulizer since she's not as fond of it as she thought. I might be because she doesn't like having to breathe in from the tube while having her nasal cannula in for oxygen. She also knows that her lungs aren't getting better...harder for her to do deep breaths (like when doing the trelegy). She has a machine (a trilogy?) for when she sleeps. She has become homebody since she doesn't like how long it takes to get ready to leave the house on top of how winded she gets doing an activity. She's fine with staying home for the most part but doesn't enjoy that she's kinda stuck even when at home due to breath limitations, equipment limitations, and house space. We got her a wheelchair to make it easier when having to leave the house. She's never liked going to the doctor but now she dreads it even more than before. Doesn't help that it's pretty much just me and her (occasionally I might be able to get help from family but normally not). We had a heart to heart last time she had a flare up/sinus infection/cold/whatever you want to call it. She knows she has more limitations but I feel like she's limiting herself (even if it is subconsciously). She told me today, she's afraid that they will send her to the hospital. I told her not to borrow trouble because I know stress can cause or aggravate problems. I know I'm rambling but I feel like these message boards are my only sounding board/support. How can I keep her in the right mind set or help her in general since sometimes I feel like I'm throwing things at a wall to see if they stick. I just want her to be comfortable and happy as long as I have her. I know that she has other health issues but I feel like the COPD overpowers the rest and hinders things sometimes.
Hi
. Welcome to the community! It is not uncommon for people at your mother's stage to dread leaving the house. It's can be scary, uncomfortable and exhausting. Is it possible to do some of her medical appointments virtually so she can save her energy for more enjoyable outings? It's important to keep her engaged on some level, but you also have to balance that with the reality behind her fears. How about some small outings, like strolling just a few feet down the street with her walker or further with her wheelchair, or even just spending time outside on a porch or front stoop? Is she walking around the house at all to get a bit of exercise? If you really feel that she can do more, but that fear is stopping her, maybe you can talk with her doctor together about anti-anxiety medication or therapy.
How about you? Are you socializing and taking care of yourself? That is super important if you want to be there for someone else. Have you considered asking her doctor for a referral to home healthcare so you can get some help and maybe a break now and then, or insisting that other family members chip in one day a week? Can you have people over to the house for coffee or a game night when you can't leave your mother alone?
We have lots of people in your mother's situation in this community and some who are in your position. I hope they chime in with their own experiences and perspectives. Wishing you the best. - Lori (Team Member)
Hi
! I know the role of sole caregiver can be beyond overwhelming most of the time. My Mom always struggled with being consistent until she was part of the solution- the planning.
We developed a system for keeping track of her nebulizer treatments that allowed for her to have a cup on the kitchen table that had her 3- 4 nebulizer solution packets in the cup. It was set aside from her daily meds containers. We picked out a seasonal cup- a pumpkin coffee cup for fall, a snowman for winter.. a cute bunny for spring... etc.
You mentioned that she was noticing that her lungs were not getting better. COPD is a progressive disease and the only way to maintain current lung capacity, and to slow down the further progression of COPD is to work on strengthening the lung tissue that is still functioning despite COPD.
Any type of Movement- during commercials while watching tv, using breathing incentive tools like spirometers, or AirPhysio, or AeroBika, or breathing into balloon 5 or 6 times to strengthen the lungs- will benefit her in the moment, and with consistency- allow her to take her power back.
This is the first for you as caregiver, and the first for your Mom to battle COPD. You are both on a journey - Together!
Ask her what will help her stay on track of her meds, and Dr. order treatments, and therapies.. If it doesnt work... TOGETHER- you will come up with something else.
As with many medical conditions.. What worked last month- or last week- may need adjusting, or some new plan may be needed overnight.
I was able to get a lightweight transport wheelchair and I would set it at the back door, and wheel her to my car around the attached garage. We would drive to store- either Macy's or VonMaur- since they both were large stores, with easy access in the bathrooms.
She was fortunate to have a portable oxygen concentrator- and there were times- we did have to bring a small oxygen cannister when her battery operated unit was acting up.
We managed for several years to go out on longer trips at first- that we could plug in the concentrator and stay out for several hours.
Then the trips to our two stores became less frequent due to increased oxygen need, and other medical concerns that made it really hard for my Mom to be out and about.
Mom wanted to go to her stores, until she could no longer go out.
We adjusted to the new normal, and discussed the plans, and debriefed on the way home. We learned from each other at each road bump- and trust me... There were TONS of bumps in the caregiving road.
My Mom's theory was that if you don't move, and get out- when you can.. when you can no longer go out and about- she did not not want to regret staying in when she could have enjoyed her outings.
Start Small.
Set goals- and affirm her efforts- even if they might fall short of the plans for that day.
Be flexible and adapt ahead of time and in the moment.
Create a Daily COPD binder for her symptoms and medication, and movement. Allow her to assist you in creating that- as that may be something she will like to develop and take part in tracking her progress.
We are more that our Caregiving duties.. We will always be our Mother's Daughters' first.
Just as your Mom is more than a person with COPD. She will always be your Mother.
The fact that you are in this community and seeking input to help you- help her- tells me that you are doing MORE than most out there.
You got this!thank you. Mom's therapist came out today and chatted with mom. I think she realized that she needs to be more consistent and that we believe she can do it. Leia (therapist) thinks that if mom uses her machine (one she sleeps with) more and does her nebulizer/inhalers consistently, that she'll feel better soon. Glad I have a sounding board now
