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New spouse caregiver 
Créé par Beas
22 mai 2019, 12 h 01

I'm new and this is a not-so-brief perspective of where I am: Over the past year we have sold our home of 30 years; my husband experienced his 1st COPD exacerbation (in CCU for 5 days); we rented a house that less than a year later the owners decided to sell; I retired as a teacher; we have been living in an air bnb while our new home is being built; and I have watched my husband's abilities rapidly diminish. As of the last 3 months, he can no longer do any adl without extreme shortness of breath and spends the majority of day and night in bed on his CPAP machine. We have been to so many appt's and I can say we are getting good treatment medically. He is scheduled for an angioplasty next week due to blocked arteries and had a TIA a month ago. I'm ready to explode with so many different emotions.
 
Réponse de NatR
22 mai 2019, 21 h 05

Dear Beas,

thank you for finding the forum and writing a note to those of us who peek in on new posts.  My heart ❤️ goes out to you and your husband .  It sounds like you have been hit with one crisis after another - not easy to cope with - not at all.

i can’t give you any advice, but I can certainly identify with your role as caregiver and the one in charge.  It seems like you will not be able to handle it, what Life throws at us / right out of the blue .  I think you will find you have more strength than you thought possible.  I also know it helps to have support.  Here, we can listen, encourage and support you from a distance. 

First of all, do you have any close friends or family nearby to at least talk to, accompany you on appointments, visit you for support?  It really helps just to have someone to bounce things off of, and has your dr been able to advise you of any agencies to give you s much needed hour or two to clear your head and get outside of the caregiving role?

i kniw that sounds unhelpful - perhaps. But I know that a bit of time to step away, breathe, have a tea or coffee - talk to a friend... can make a big difference

the whole world has turned upside down for you.  My concern is that you avoid burning out.  It was s good plan to reach out here to vent, anyone who posts here gets what your life has turned into - and will also encourage ...

your uncertain housing situation, building a home etc, is certainly an additional complication - but I understand it’s something you needed to do 

please keep writing - and take a moment to understand that you are giving your husband everything he needs, love, support and understanding...

i hope you will write again and let us know how things are going
just the act of journalling here, getting your thoughts and feelings out is helpful.  Knowing someone hears you us also important... I hear you and I send you my thoughts and s huge hug across the miles ,

hoping you know you have a safe haven here
sincerely
NatR  
 
Réponse de Beas
23 mai 2019, 1 h 42

Thanks so much for your realistic words of support!  Last night was one of those "hit the brick wall" times and yet I woke this morning determined to take charge. First...I have now become a participant in this discussion forum and secondly I have sought out a professional counsellor. And no, I don't  have anyone to go appt's with me as I'm new to this temporary community while waiting for the new house build (1 hour away). I do, however, have great friends on social media. Thanks so much. Will continue posting and eventually reaching out to support others.
 
Réponse de NatR
23 mai 2019, 2 h 41

Hi Beas,

glad to know you feel the support and connection.. terrific!
Also glad to know you are renewed in your efforts to support and navigate the complicated caregiver designation.  No one really gets it until it happens to them

I am glad to hear the determination in your words.  Your husband must be so grateful and appreciative of your support ... it is worth it .  

just tyoe  note to this thread and know someone will respond - and will listen.
one day at a time ... wishing you energy for each morning, glad you have supportive friends... lean on them as you need to.  
Sending you  best wishes tonight.  Rest well 
NatR 
 
Réponse de Beas
25 mai 2019, 12 h 56

Good morning. Not sure if this is only a reply to NatR or a general post (it's supposed to be a general post))  ...but here it is. I have 2 major conflicting feelings with my husband's illness and pending death (no time line here).

1. I have realized over the past 10 years that, after over 30 years together, I should have left years
ago. My husband is not a bad person but has not met my needs for many years and we have little in the way of shared interests. Do I still love him? Maybe and I'm more than committed to supporting him during his COPD. 

2. The second conflict is that he likely caused his disease himself. Up until 2 months ago, he was a smoker. Being an ex-smoker myself, I have some understanding, but still...
 
Réponse de NatR
25 mai 2019, 14 h 02

Good morning Beas 

i think many readers or members of this forum can relate to your honesty and your situation.  I certainly identify,  and I feel for you - knowing that the relationship wasn’t the best it could be .  Having said that - you are here and now..

considering all that you have said - I commend you for your devotion, your dedication and despite everything, you are in a place where you are giving support, care, dedicated reassurance, and so much to your husband.

No matter how in or out love you are, no matter how many things have happened between you - it sounds like you want to do the very best for him - and I applaud you for that .

you are going to feel many different feelings, but in this health crisis, you Are focussed on caregiver and supporter ... exactly what your husband needs

whether we smoke, drink, or Deal with a health crisis related to those lifestyles- in the end we are all dealing with the end of life.  don’t worry about why, or how, things happened - just take today.
do what you need to do to support him.
your life will be filled for now - and you are giving him such comfort and support 

 Write anytime you need to, whether it’s one sentence, one paragraph or a few, that’s what the forum is for - support for caregivers 

considering what you wrote - about your relationship, I applaud you for what you are doing.
its not easy
the forum will support and encourage you / that’s what it’s all about

I don’t know if my mixed thoughts have helped at all - but I wanted you to know I got your post, and I wanted to reply
have a good day and I am thinking of you
best wishes
NatR 😍 
 
Réponse de Beas
31 mai 2019, 3 h 23

The angioplasty was a great success and the doctor was very excited. I, however, am thinking..."Great, stroke liability is hugely reduced, BUT, he still can'take breathe! " In fact, they did give him a general anesthetic and his breathing is worse post-procedure. It will, however recoup to where it was prior to the angioplasty but he is very stressed. Pulmovary function test came back with a 32FEV1 which places him as severe and closely approaching end stage COPD. Our 1st grandchild is due to be born in Oct. and he'said told my daughter he'll be around for the pictures and then will disappear??  He's also told me that if the breathing struggle of the past month continues, "he has a plan."  What do I do with those comments?!
 
Réponse de NatR
31 mai 2019, 12 h 31

Dear Beas 

wow I am glad to hear the angioplasty was a positive and good step. 
 That’s one thing off your minds 

the other problem- the breathing is most serious
did you say if your loved one was on oxygen? It sounds like he’s in need of some support to make his daily life easier - no one should struggle for every breath - I hope you can get him the oxygen - or perhaps it’s already in place 

I deal with asthma occasionally and I know how terrifying it is to feel like you cant take a breath
that’s all I can suggest about that, and I wish I could do more

as for your spouse‘s commement on - having a plan
see if you can get him to expand on that

i have heard friends tell me similar things - even while they are in good health -  they tell me the same thing
I believe that this comes from the fear of the unknown. It’s what we all want to have, control over our pain and suffering at all costs

your dr might be able to help here - suggest some kind of hospice or palliative care - and I have no idea if your community has anything available for your husband ?

just because he is having a crisis presently, doesnt mean  that he couldnot  bounce back, do better, and manage well at home  

every day will bring you a new concern, a new worry, it’s the hardest thing when you are caregiving for your loved one

encourage him to talk to you and perhaps your dr or hospital has someone who he can speak to as well?
Its a lot on your shoulders - so try to spread the load a bit - if you can

one day at a time Beas
sending you strength today  
when I read your note this morning - I felt the urgency you feel, and I know you are doing the very best you can 
that’s all you can do
I hope my words help in some way
I encourage anyone reading this to reply as well... that’s what forums are about - support and listening 💕

best wishes warmeet thoughts to you both today
NatR 😍 
 
04 juin 2019, 17 h 06

Hello Beas,

NatR is providing some great support to you and excellent suggestions in navigating this world that you have been thrown into. I am wondering about some practical issues as well, such as if you have access to home care and palliative care services. I am thinking these would be helpful in your caregiving role.

If you are looking for these services, please see our Programs & Services directory: http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Resources/Programs+and+Services.aspx

It sounds like you could use some help and hopefully they could provide some assistance for your husband, but also support you as well. There are often social workers available to support you in your caregiving role. We all know it can be difficult to care for someone 24/7..... it's exhausting and even if you can get someone to come out and support you a little bit, it can make a huge difference! If you have a hospice that provides community supports, please see if they have a support group, respite services, nursing visits or volunteer visitors. These are wonderful resources that people often forget about in the midst of caregiving every moment of the day.

Wishing you much strength,

Simone (CVH Moderator)
 
Réponse de Beas
24 juin 2019, 13 h 19

I haven't disappeared, but we have moved into our house and have been without internet until recently - in addition to the mountains of boxes still to be unpacked!

NatR and Simone - you need to know how much impact you have made on me. Both of you have given such supportive words and practical suggestions - it's so helpful. 


Both my husband & I are working to:

a) improve the quality of his day-today life (at this point, he can walk short distances in the the home, but is short of breath when trying to do the simpliest of tasks)
b) put systems and supports in place so that I can continue to pursue my life outside of the home

He is now using nebulizers which seems to be giving him breathing relief faster than the puffers. I am connecting up with the telehomehealthcare (if it survives Ford's cuts of LHIN's!) to provide him with daily monitoring and contact with a nurse. I'm also contacting a medical alert company to investigate this type of support. It's not terribly effective to say "Keep your cell phone near you" if he can't talk due to shortness of breath. Pushing a button makes much more sense.  

Although it could be a long way off still, I'm now aware of a hospice within a 20 min. drive and plan to look into joining our new town's hospice committee (I think there's movement afoot to establishment a hospice in our town).

The challenge at the moment is how to encourage and support my husband with his loss of abilities. Last week was the first time we've ever had a service person in our home and he was so angry that we had to pay close to $200. for something he could have done in 15 minutes. He also has a 1981 Corvette (partially dismantled) that he was looking so forward to restoring. I'm searching for ideas for him to use his vast knowledge of mechanics, electrical and engineering in a mental capacity versus a physical one.

Thanks to both again and I'll keep osting - it is cathargic!

Hugs, Karen

  


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