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momCHFcare, September 1,  2020  4:31pm EST

caring for mom with CHF

Hi Everyone,

I'm new here.  My mom is 74 years old with stage 4 heart failure.  She also has a-fib, TIA, severe valve disease and a pacer.  Everything seriously escalated in April of this year.  She is at peace with dying and has signed a DNR and other medical papers regarding interventions.  Her Dr has given her a "few" months to live.  I don't really know how many a "few" is but thankful that we have that.  She is currently in the hospital with a MRSA infection they are working to get under control - infection could also be in the leads of her pacer but she has elected to not undergo surgery to remove it.  Once she is released from hospital she will go to skilled nursing for a short period of time and then home with hospice.  My company has allowed me to work from her home for the time being, which is a huge benefit.

Here's my questions for the group - I'm scared of all of this.  I am scared to watch her die and not completely sure how to care for her.  In her mind, she will go home, eat what she wants, do what she wants and then will just pass.  I'm going to guess it doesn't happen like that.  I feel like if I know what to expect and if there are "signs" it might help me to be a better caregiver for her.  Also, other than simply being with her is there things that I can do or should do to help her easier through this transition.  I have heard that hearing is the last sense to go, so I know talking to her even if she's unresponsive is important.  What else can I/should I do?

Thanks so much for any advice, guidance, support out there.

1 Reply
  • AHAASAKatie
    AHAASAKatie, September 3,  2020  8:52am EST

    It's odd how timing works. I am having the hospice conversation with my mother and a local hospice provider this morning. This is the same provider we used when my dad passed last year and I found them to be a wonderful source of information and assistance. His situation was different as he transitioned from the hospital to in-patient hospice care. We were able to be with him as we wanted onsite. However, his passing occurred in the very early morning hours and we were not with him.   

    My mother's passing could be different depending on how things progress. For now, she wants to stay in her apartment with 24/7 care and then bring hospice services to her. COVID-19 will prevent her family from being with her until the last few days, as I understand things. However, she might also transfer in-patient if she needs specific pain medications and such. 

    Share your thoughts with your hospice contact. They can talk you through the actual dying process and help give you cues on what to expect and when. 

    Please know that you are not alone in what you are having to manage. Many of us have been there and understand. 

    Best Katie

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