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Newly diagnosed husband with copd, but.... 
Started by Korie1971
11 Mar 2024, 5:51 AM

Hi there, I'm hoping to find some support,  guidance and maybe someone to just talk to.My husband had RSV in Jan 2024 and since has been on a decline. He came home on 1L of oxygen he's up to 6 now sometimes more.  I keep waiting for things to settle out but they don't seem to be. He is also a very big guy, and that hinders most of his movement thru the day and his daily activities.  I'm trying my best here, but I don't knownif im doing enough. Is there anyone out there feeling as hopeless as me?
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Reply by eKIM
11 Mar 2024, 5:33 PM

Hi Korie

I'm sorry that you are faced with this situation.  I send you positive thoughts that your husband will get well soon.

I can write a response from two perspectives. 

Firstly, as a hospice volunteer, I have spoken with many caregivers over the years.  

Secondly, I was diagnosed with cancer in December and my wife/soulmate is my caregiver.

Do you have healthcare workers coming to your home on a regular basis?  If not yet, do you know where to call to access these services?

Do you have a person(s) who are helping you care for your husband?  It is almost impossible to do everything yourself 24/7.

Do you have a personal regime of self-care?  This is crucial.  If you "burn out", of course, it is not good for you, but it is not good for your husband if you are unable to care for him.

Katherine, the administrator of this site can suggest some practical information resources that are of help in all areas of caregiving.

As a recipient of caregiving, I find it difficult to accept help and be a burden. 

However, to combat this feeling, I think of how much soul-satisfying joy I feel when I reach out to help others. 

If those who care for me feel the same joy in caring for me, then that is a good thing.  Just let it flow. 

"No matter the question, love is the answer."  

Peace be with you.  - eKim




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Reply by Korie1971
12 Mar 2024, 3:59 AM

I am trying to do this myself, partly because he is a very private person, and partly because he won't allow anyone else here. I am still trying to work as well. Right now as it stands I think I will have to take time off from work because he is just not in a condition to be left alone like he was a couple of weeks ago.  Today his oxygen took a dive and is difficult to bring up to a comfortable level.  😕 I cannot take him to our local hospital because they will not admit him, because he is bariatric and his oxygen needs are over 3 L a min. Therefore he should be in the city, but that is difficult because last time he was there for 4 days and never got out of the ER  barely slept and didn't even have a washroom. I know so many have it worse. I'm sorry to go on like this.
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12 Mar 2024, 2:19 PM

Hi Korie1971 
This is a safe place to 'go on like this.' eKIM has offered some good questions and suggestions. You are between some rocks and hard places right now. 

I don't want to take lightly what your husband has experienced in hospital already - how very hard for him and you. Our healthcare system is broken.  Programs and services might offer some ideas as well. 

I imagine you are working, cooking, cleaning, washing, worrying, planning, phoning, watching, caring for and perhaps not sleeping very much. Perhaps time off work would take one of those things off your plate for at least a short time? Maybe it would also give the two of you time to have some conversation about how things are going.

I am a private person as well - but I wonder if there comes a time when we need to allow others in so that the caregiver (as eKIM already said) doesn't burn out. Is there perhaps a friend, healthcare professional, spiritual care support person who could be a 3rd person - who might help both of you in conversation about what is happening, what the options are and what both of your needs are? For example home care support if it is available in your community or family/friend support. 

We all have to sort it out in a way that works best for everyone, but sometimes 'No I can't.' is an answer too. 

You might find this article helpful Caring for yourself

Are their people in your and your husband's life who have offered support? Sometimes picking up groceries or a friendly phone call can help you and them. 

Keep in touch Korie.

Katherine
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Reply by Mark99
13 Mar 2024, 12:12 AM

Korie

It sounds like you are scratching at the air as you’re falling. Trying to get a hold on the moment you are in. You’re here and that is a hand hold you took.

I/we who have lived your experience so understand the struggle, the pain, and the isolation. I know for me I carried that alone caring for Donna at times. Donna was my wife my life and felt I owed it to her and the universe at large to do that. I wanted here to know she was not alone.

As I look back and reflect I would not have changed that. I would have added to it. Expanded my self care with others. Less to find help and more to share. I've learned that connection is at the heart of humanity. I see now I could have given Donna more of not just care but more of my humanity/love from connecting with others. At times I lost myself in chores. That is what you're doing here connecting so your humanity can blossom and have more of you to give.

Get the help you need and can find as suggested above. Yet allow yourself connection to share as you're doing here. Connection humanity & the honest sharing with others can be emotional guardrails for us. Helps us find our center.

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Reply by Korie1971
13 Mar 2024, 2:28 AM

Thank you so much for the encouragement and words of hope. I don't remember if I mentioned,  but I am a nurse, in rural saskatchewan. So much of my emotional ups and downs comes with the struggle of knowing deep down how this all ends. Today was its own Rollercoaster, beware, it's a story, so feel free to tune out now. 😀 About 2pm his concentrator just up and stopped. Just like that, a beep and it was done.  We've had this one for I think less than a week, it's a higher capacity one, and he spends most of the time at about 8, especially when he's first getting up, or moving from the chair to the couch or vice versa. The company came out to bring a new one, but today taught us that at 6 litres, a tank lasts about 2.5 hours. We went thru 3 of them waiting. So you can imagine his struggle with what happens if...Which led me to worry what happens if that goes on and no one is here. Only a more solid reason that I can't be away at work and leave him alone. He is almost settled now, higher flow prongs so that the oxygen moves better, and he has a bipap which we use when he's walking to amd from the bedroom and from his desk chair to the couch. Tomorrow I am supposed to go into work, a 12 hr night. I won't just yet, maybe tomorrow.  The swelling he has in his legs I would like to see come down more, so there will be more Lasix tomorrow. Thank you again for letting me rant. This is helping just to have someone to listen. I feel like I burden my friends with the issues so often. 
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Reply by Mark99
13 Mar 2024, 2:42 AM

You are so NOT ranting at all.
 
The words we say out loud & share takes the jagged shards of our feelings and offers a narrative for us to see and others to see. They become 3D in a way We visualize them others do and they become less suffocating looping thouhgts within us that pull us apart.
 
It sounds like a real adventure today yet I will note your medical training seems to help you manage this like a pro. At the same time your medical knowledge is emotionally cutting
 
Glad you're here for you Though it may not feel like it this is self care. Bravo
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Reply by Korie1971
13 Mar 2024, 3:05 AM

Thank you Mark,
Yours along with  everyone else's words help me feel a little less alone. I wish I could speak with his doctor, and see if maybe I am seeing the worst and perhaps it's not as bad as I am thinking it is. Although, I think part of me already knows that I am right in my thinking. However our doctor is away on vacation and my appt is April 2, his is not until May. 
Our daughter who is almost 20 has moved back home, I'm not sure if it's to help or to detract my attention a bit. Either way it helps, but it's so hard with the kids seeing him like this. She immediately wants him to go to the hospital and doesn't completely understand why that's not going to help much. 


 


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Reply by eKIM
13 Mar 2024, 4:00 PM

Hello, Korie

I am pleased that you are finding comfort in "speaking" with us volunteers.

I agree with Mark: You are not ranting.  Think of it like a container under pressure.  Speaking your thoughts to a good listener is like a "pressure release valve".  Without it, you could explode (stress/burn out).

For a myriad of reasons, sometimes people near and dear to us cannot be fully "there" for us in exactly the way that we want them to be. (i.e. listen to us when we need them to)  It's not that they don't care, it's that thing called "LIFE" gets in the way of good intentions.

Our role here at C.V.H. is to be good listeners.  We should not and cannot try to judge, fix or 'rescue' people or tell them what to do.  

Oftentimes people who volunteer here have undergone or are undergoing major "STUFF" themselves and find personal satisfaction from trying to ease the pain of others.  "From great pain comes great compassion".

So, here's the deal: Keep coming back to us as often as you wish and for as long as you wish.  Don't be afraid of saying the same thing over and over. 

Sometimes healing only comes through hearing yourself say something often to a good listener.  Your answer was deep inside of you all along.  Then suddenly a "lightbulb" will go on and YOUR answer will present itself to you.  Not from an outside source.    

When you said about your daughter, " I'm not sure if it's to help or to detract my attention a bit."  I believe that "No matter the question, love is the answer."

I send you thoughts of love and peace.  May your burden be lessened a wee bit by those who care.

- eKim


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Reply by Korie1971
14 Mar 2024, 4:20 AM

Thank you for virtually giving me permission to be here and to talk to you. This is more difficult than I could have ever imagined it would be.  Small snippets of watching others go through this sort of thing. As an outsider gives no sort of preparation for this moment.

We had planned a huge trip for this April.  Today we told the kids that, in light of all that has been happening,  we cannot go. They understood, of course, but the oldest is in a state of denial, he would very much like to do all he could to take his dad on this vacation..But realistically I can't see how. With this concentrator breaking yesterday,  it made me stop and think, what happens if...
Travel.to the US is one thing,  but being so far from home.what happens if something goes wrong,  or he gets sick?

Tomorrow I return to work, I think for a few shifts, my doctor may be able to put me on some sort of leave for a bit, until we can work out what do do longer term.
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