1. < Caregivers

Caregiving taking its toll: Stage 4 Glioblastoma & Lymphoma

Posted by saintdijo @saintdijo, Mar 18 8:51pm

History: Husband is 84 born 1/30/40
Tested on Oct 2019 w/Glioblastoma
Surgery Jan 2020 Tumor sucked out
Radiation 34 treatments
Chemo pills dosed 5 days per month for 15 months
Put on Hospice Sept 2022 (took off in May 2023)
After seeing another Cancer doc & did an MRI to compare with early MRI did not advise a treatment Cancer Advanced
Put back on Hospice (ongoing)
In between all this had a heart valve replaced and his Pacemaker battery replaced. Sight-bad, walking-unstable, communication-almost non-existent, goes nowhere, sleeps most all day & night, blood pressure great, oxygen great, sometimes low heart beats. Does nothing at all. WHY IS HE YET ALIVE…it’s going on 4 &1/2 years while everyone has painted a death warrant to me. My real question is: is it the Pacemaker the reason?

As his Caregiver (his wife) in a rural area with no close family it’s a HORRIBLE SITUATION . He is not the man I married 62+ years ago! It’s taking a toll on me & no where to go. Hospice is mainly to check his vitals plus shower & shave him! Thanks for letting me ‘sound off’

Interested in more discussions like this? Go to the Caregivers Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 19 5:18pm
In reply to @saintdijo "No better off, just check his vitals & off we go. BUT I decided to change..." + (show)
@saintdijo

No better off, just check his vitals & off we go. BUT I decided to change our entire situation…we will be selling our home & moving to NH where our daughter & family are located.

She has been begging me for months; I decided because I am going to be 82 & I myself need a place - just can’t DO ALL THIS ALONE. Should have did this years ago.

I also think husbands care will be much better in a populated City in Manchester…so my advice to all - don’t wait until things get desperate to make decisions OR let emotional places or things freeze your thinking of what is best for all….

yes, ya spent a lifetime of deciding - now is the TIME to ‘let go’; but please, please don’t wait too long

Jump to this post

@saintdijo I think this could be a great idea. Will your daughter be able to help you with all the planning? Maybe you could go with him ahead of time, get him settled, and then return to sell the house. Just thinking about all the chaos that goes with selling and moving. (I’ve probably moved 30+ times in my life!). And you’re smart to decide to make a move while you can! Good advice for all of us. You’re a very strong and courageous woman!
What do you think will be the hardest part of this move for you and your husband?

REPLY
1 reply
saintdijo | @saintdijo | Apr 20 7:39am
In reply to @becsbuddy "@saintdijo I think this could be a great idea. Will your daughter be able to help..." + (show)
@becsbuddy

@saintdijo I think this could be a great idea. Will your daughter be able to help you with all the planning? Maybe you could go with him ahead of time, get him settled, and then return to sell the house. Just thinking about all the chaos that goes with selling and moving. (I’ve probably moved 30+ times in my life!). And you’re smart to decide to make a move while you can! Good advice for all of us. You’re a very strong and courageous woman!
What do you think will be the hardest part of this move for you and your husband?

Jump to this post

Courageous not really…biting the bullet better term…I decided a month or so ago these choices were no longer ‘his choices’ to make…wasn’t able to. At the same time ‘taking care of myself’ was a need - not just for him.

The hardest part of this move is probably selling off all 19 years of ‘stuff’! Also preparing hubby mentally/physically for across the country trip….I can only DO IT - am unable to prepare for the WHAT IF’S until it occurs (too mind boggling of what could or could not happen). The ‘what if’s can tear your mind & life to shreds - don’t bother - give it to the Lord instead.

I am listing the house as furnished so as I don’t need to move any of it….sellers could have a huge ‘garage sale’ if don’t want - might say they could recover some of ‘their $$$’s on the purchase’….which I hope happens. Second option ‘estate sale’!

Is it scary? Sure! I am no longer that spry chicken any more but am still ready (and wiser now) to tackle the world…..

REPLY
Blg | @gilster12 | Apr 24 6:53pm
In reply to @saintdijo "How do I find her?" + (show)
@saintdijo

How do I find her?

Jump to this post

I don’t know how to find the person @freebird36 is talking about, but my suggestion would be to reach out to any and all churches in your area, people like to help and that way, you get a break and he gets to stay home. You can also look to see if there is a death doula in your area. I know that doesn’t sound good but that’s what they do, is help the caregiver with answers and resources. Try and reach out to your community or anyone you can. I’m heartbroken for you both, and I’m so sorry you’re having to do this alone! If you end up getting ill because you’re not getting the help you need sweetie, there will be no one to help either one of you. Please google Death Doula in my area, even if there from far away. They could help you over the phone or a zoom call if needed. I will do what I can to help you from Minnesota over the phone or the web, if you’d like me to? I’d be more than happy to help! Praying for some peace and comfort for both of you! You let me know what you think and I will do everything I can to help you find some help, I promise!

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 24 9:05pm
In reply to @gilster12 "I don’t know how to find the person @freebird36 is talking about, but my suggestion would..." + (show)
@gilster12

I don’t know how to find the person @freebird36 is talking about, but my suggestion would be to reach out to any and all churches in your area, people like to help and that way, you get a break and he gets to stay home. You can also look to see if there is a death doula in your area. I know that doesn’t sound good but that’s what they do, is help the caregiver with answers and resources. Try and reach out to your community or anyone you can. I’m heartbroken for you both, and I’m so sorry you’re having to do this alone! If you end up getting ill because you’re not getting the help you need sweetie, there will be no one to help either one of you. Please google Death Doula in my area, even if there from far away. They could help you over the phone or a zoom call if needed. I will do what I can to help you from Minnesota over the phone or the web, if you’d like me to? I’d be more than happy to help! Praying for some peace and comfort for both of you! You let me know what you think and I will do everything I can to help you find some help, I promise!

Jump to this post

@gilster12 Are you maybe looking for the Pamela Wilson website? Will this help?
https://pameladwilson.com/
Thank you for your helpful advice to @saintdijo . There was a short bit on death doulas on the news last night. Very interesting!

REPLY
View MoreView Less
Please sign in or register to post a reply.