For better or for worse...
- Thread starter JimInVA
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Narrowminded
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So happy to hear from you Jim. I too have been looking for an update. You have been in my thoughts and prayers. Hopefully soon you will be pain and walker free.
hugs
hugs
wishmobbing
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So good to hear from you after the recent ordeal. No more complications! Life is complicated enough.
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Greetings, All!
I thought I'd pop on with a personal update. Last Wednesday (Jan 8th) marked the end of 8 weeks since back surgery. I met with my neurosurgeon who had looked at back x-rays I'd had taken the day before. To this point, I'd been on "BLT" orders. No Bending, No Lifting (over 10 pounds) and No Twisting. I wore a waist support device for the first month but left it off more and more the 2nd month. I was careful and am proud to say that I had no falls. I was hopeful that this Wednesday I would be released from BLT. And I was! Take it slow... take it easy... no jerking weights... but ease back into full activity.
With rare exceptions, each day I felt better than the day before. With Gina caring for Darcey and my son Jim caring for me (and for his Mom), I was tasked with being responsible for only myself. Over the last several weeks, I've begun to reclaim a handful of caregiver duties... but only a few. Gina comes in most mornings and gets Darcey up and about. She's taken care of sponge baths and clothing changes. And she's been the one primarily responsible for seeing that Darcey gets her Jevity and other liquids that she needs. Over the last couple of weeks, we've been sending Gina home from Noon - 5PM to give her a break. The 12 hour days have taken a toll on her. When Gina is gone, I take care of the toileting as there is really no lifting involved. If Gina is gone for those in/out bed times, Jim has stepped in. For the first time in many years, I went to bed when I wanted (or needed) to. And I got up when I was ready to get up. And if I needed to rest my back or take a nap, I did so. If for nothing else, the pain I endured from surgery was easily compensated for the "what do I want to do" environment that I've enjoyed. But that time is coming to a close.
Son Jim is not quite ready to set a date for his return to Brooklyn, NY. But he should return before the month is out. He does have his own life. And as a freelance producer of television ads, he needs to begin answering his phone again when those who desire his expertise continue to call. Darcey's hospital bed has been downstairs... so I'd have freedom of bedtimes and tv times and because no one else can move Darcey up and down with the stair chair as I can. And restrictions for me have been lifted. I've been getting better sleep than I have in several years and have used the time not spent as a caregiver to begin catching up on work related items. But to prolong resuming my own responsibilities is to borrow needlessly on the time and care of those who made all of this possible.
So tomorrow, I'll sit down with my Son and we'll plan out the month and plan out the return of Darcey's "Most Excellent & Awesome Caregiver Ever!" In those moments that I selfishly think, "I could stretch this out even longer" I remind myself that no one else does it any better. And Darcey deserves that very best. Yeah... it would be nice to do another month or two of this... and yeah, you're hearing me give myself my own pep talk. But it really is time!
I guess life can sometimes be about "focus" and what we deem to be important each day. I've been renewed with the focus pointed towards me for the last two months. But now its time to redirect that focus where it really belongs. As November passed us, we entered the 8th year since first ALS symptoms were noted. Darcey's ability to be verbal with her communications has diminished greatly over the last 2 months. I suspect we'll have a challenging new year... but we're good for it!
My best extends to each of you... PALS, CALS & loving friends and family. May 2020 give you the best that it can! But don't forget how much influence each of us has... for ourselves and for all those around us. Peace!
Jim
I thought I'd pop on with a personal update. Last Wednesday (Jan 8th) marked the end of 8 weeks since back surgery. I met with my neurosurgeon who had looked at back x-rays I'd had taken the day before. To this point, I'd been on "BLT" orders. No Bending, No Lifting (over 10 pounds) and No Twisting. I wore a waist support device for the first month but left it off more and more the 2nd month. I was careful and am proud to say that I had no falls. I was hopeful that this Wednesday I would be released from BLT. And I was! Take it slow... take it easy... no jerking weights... but ease back into full activity.
With rare exceptions, each day I felt better than the day before. With Gina caring for Darcey and my son Jim caring for me (and for his Mom), I was tasked with being responsible for only myself. Over the last several weeks, I've begun to reclaim a handful of caregiver duties... but only a few. Gina comes in most mornings and gets Darcey up and about. She's taken care of sponge baths and clothing changes. And she's been the one primarily responsible for seeing that Darcey gets her Jevity and other liquids that she needs. Over the last couple of weeks, we've been sending Gina home from Noon - 5PM to give her a break. The 12 hour days have taken a toll on her. When Gina is gone, I take care of the toileting as there is really no lifting involved. If Gina is gone for those in/out bed times, Jim has stepped in. For the first time in many years, I went to bed when I wanted (or needed) to. And I got up when I was ready to get up. And if I needed to rest my back or take a nap, I did so. If for nothing else, the pain I endured from surgery was easily compensated for the "what do I want to do" environment that I've enjoyed. But that time is coming to a close.
Son Jim is not quite ready to set a date for his return to Brooklyn, NY. But he should return before the month is out. He does have his own life. And as a freelance producer of television ads, he needs to begin answering his phone again when those who desire his expertise continue to call. Darcey's hospital bed has been downstairs... so I'd have freedom of bedtimes and tv times and because no one else can move Darcey up and down with the stair chair as I can. And restrictions for me have been lifted. I've been getting better sleep than I have in several years and have used the time not spent as a caregiver to begin catching up on work related items. But to prolong resuming my own responsibilities is to borrow needlessly on the time and care of those who made all of this possible.
So tomorrow, I'll sit down with my Son and we'll plan out the month and plan out the return of Darcey's "Most Excellent & Awesome Caregiver Ever!" In those moments that I selfishly think, "I could stretch this out even longer" I remind myself that no one else does it any better. And Darcey deserves that very best. Yeah... it would be nice to do another month or two of this... and yeah, you're hearing me give myself my own pep talk. But it really is time!
I guess life can sometimes be about "focus" and what we deem to be important each day. I've been renewed with the focus pointed towards me for the last two months. But now its time to redirect that focus where it really belongs. As November passed us, we entered the 8th year since first ALS symptoms were noted. Darcey's ability to be verbal with her communications has diminished greatly over the last 2 months. I suspect we'll have a challenging new year... but we're good for it!
My best extends to each of you... PALS, CALS & loving friends and family. May 2020 give you the best that it can! But don't forget how much influence each of us has... for ourselves and for all those around us. Peace!
Jim
KateEmerson
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So good to hear that your recovery is going well and that you've had some respite time to re energize. Thank you for updating us, Kate
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Dear Jim, so glad to hear you are on the mend. Glad you had so much help during this time. You are truly the Most Excellent & Awesome Caregiver Ever and an inspiration to all of us.
V
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V,
To be clear, each of us CALS is the "Most Excellent & Awesome Caregiver Ever" for our respective PALS. Or at least that is the view that I've seen, here. Equally, each of us adds to the other. It is one of the reasons we frequent this forum. Thank you, V, for your participation and contribution, too. We really do make each other better for what we can do... and for the love and care that we can give.
Jim
To be clear, each of us CALS is the "Most Excellent & Awesome Caregiver Ever" for our respective PALS. Or at least that is the view that I've seen, here. Equally, each of us adds to the other. It is one of the reasons we frequent this forum. Thank you, V, for your participation and contribution, too. We really do make each other better for what we can do... and for the love and care that we can give.
Jim
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"Most Excellent & Awesome Caregiver Ever" love it!
Is Gina going to continue to help out so that you don't have to be the only caregiver, just the most excellent one?
I'm so impressed at how everyone have rallied around you both and you have been able to heal so well. Remember however that the next couple of months are still important healing time, so take whatever help you can as you get back to full strength.
Much love to you all
Is Gina going to continue to help out so that you don't have to be the only caregiver, just the most excellent one?
I'm so impressed at how everyone have rallied around you both and you have been able to heal so well. Remember however that the next couple of months are still important healing time, so take whatever help you can as you get back to full strength.
Much love to you all
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Tillie,
You asked, "Is Gina going to continue to help out so that you don't have to be the only caregiver, just the most excellent one?" At this very moment, I'm not sure. Prior to back surgery, Gina was only coming in 3 days a week for 4 hours each day. When we looked at her being here morning to night (9 to 9), I asked her to quote me a fee per day. She did and I refused her offer... insisting, instead, that it be $20 more per day and that she allow us to throw in meals... especially as I anticipated we'd do a fair amount of take-out/to-go meals from local restaurants. She seemed quite pleased with that.
Now, two months into this, she rarely smiles... seldom has anything nice to say... and isn't as pleasant with Darcey as she was before. I get it. She's burned out. But I've given her paid days off... 3 days at Christmas, 2 days at New Years, a full weekend... and for the last 3 weeks, I've let her leave at 1PM and not return until 5PM (so as to give her a bit more of a break). I've picked up the slack during those times... feeding Darcey (via peg) and taking her to the potty. But even that has not seemed to have had a positive effect.
Next Monday or Tuesday, we're going to move Darcey's bed back upstairs. On Wednesday, Gina leaves for a week of vacation. My son wants me to have more help with Darcey than the 12 hours I'd done previously. I do to. But I wasn't sure what the plan would be. As I mentioned this to Darcey, I anticipated some resistance to having Gina in more that the three 4-hour days. What I didn't anticipate is what Darcey really had to say.
She described feeling that Gina had become somewhat antagonistic towards her. Gina rarely talks anymore (and Gina was always someone you could NOT get to stop talking). Darcey feels that Gina will sometimes purposely ignore her request to go to the toilet until she feels like getting up to do so... with Darcey often having to ask twice or more. Honestly, I think that Gina is just tired. Heck, I've been there... I've done that morning to night routine for several years now... it can be grueling. But Darcey feels that at 8 years into this... with everything having faded away except her ability to communicate (and that ability is almost gone)... that she shouldn't have to put up with a begrudging caregiver. And I have to agree. I've privately communicated with my Son that I get tired... that care giving takes time that I don't have with all that I need to do to run a business that pays the bills... while doing all of the other tasks that come with Darcey's disability. But I've been firm in voicing the opinion that "your Mom didn't ask for this... and she should never be made to feel a burden because of her ALS." And he gets that perfectly.
So Darcey is asking, now that she's 65 and has Medicare, if she has options for other care-giving scenarios for home health care. I don't know, but I do know that I need to look into this and find out. Perhaps a week's vacation and a more relaxed schedule is all that Gina needs to return to her earlier self. But I'm feeling that Darcey isn't as excited to find out.
And so it goes...
So, to return to your earlier question in regards to Gina's continued participation... I don't know right now. Time, alone, will tell.
Jim
You asked, "Is Gina going to continue to help out so that you don't have to be the only caregiver, just the most excellent one?" At this very moment, I'm not sure. Prior to back surgery, Gina was only coming in 3 days a week for 4 hours each day. When we looked at her being here morning to night (9 to 9), I asked her to quote me a fee per day. She did and I refused her offer... insisting, instead, that it be $20 more per day and that she allow us to throw in meals... especially as I anticipated we'd do a fair amount of take-out/to-go meals from local restaurants. She seemed quite pleased with that.
Now, two months into this, she rarely smiles... seldom has anything nice to say... and isn't as pleasant with Darcey as she was before. I get it. She's burned out. But I've given her paid days off... 3 days at Christmas, 2 days at New Years, a full weekend... and for the last 3 weeks, I've let her leave at 1PM and not return until 5PM (so as to give her a bit more of a break). I've picked up the slack during those times... feeding Darcey (via peg) and taking her to the potty. But even that has not seemed to have had a positive effect.
Next Monday or Tuesday, we're going to move Darcey's bed back upstairs. On Wednesday, Gina leaves for a week of vacation. My son wants me to have more help with Darcey than the 12 hours I'd done previously. I do to. But I wasn't sure what the plan would be. As I mentioned this to Darcey, I anticipated some resistance to having Gina in more that the three 4-hour days. What I didn't anticipate is what Darcey really had to say.
She described feeling that Gina had become somewhat antagonistic towards her. Gina rarely talks anymore (and Gina was always someone you could NOT get to stop talking). Darcey feels that Gina will sometimes purposely ignore her request to go to the toilet until she feels like getting up to do so... with Darcey often having to ask twice or more. Honestly, I think that Gina is just tired. Heck, I've been there... I've done that morning to night routine for several years now... it can be grueling. But Darcey feels that at 8 years into this... with everything having faded away except her ability to communicate (and that ability is almost gone)... that she shouldn't have to put up with a begrudging caregiver. And I have to agree. I've privately communicated with my Son that I get tired... that care giving takes time that I don't have with all that I need to do to run a business that pays the bills... while doing all of the other tasks that come with Darcey's disability. But I've been firm in voicing the opinion that "your Mom didn't ask for this... and she should never be made to feel a burden because of her ALS." And he gets that perfectly.
So Darcey is asking, now that she's 65 and has Medicare, if she has options for other care-giving scenarios for home health care. I don't know, but I do know that I need to look into this and find out. Perhaps a week's vacation and a more relaxed schedule is all that Gina needs to return to her earlier self. But I'm feeling that Darcey isn't as excited to find out.
And so it goes...
So, to return to your earlier question in regards to Gina's continued participation... I don't know right now. Time, alone, will tell.
Jim
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Oh Jim, thanks for that honest reply. I wonder if Gina had support for herself during this past couple of months - she does sound burned out.
I hope you can figure a good solution, whether it is working on with her in a different way, or looking to train someone new.
If you think someone new might be in order, can you start looking and training that person before your son Jim goes home? Maybe you can start something while Gina is on her week off?
Even if you had 2 people, a new one and Gina as back up, you would know if you need help there are people.
I know that you will put your excellent mind to this and I believe something will fall into place for you and Darcey
I hope you can figure a good solution, whether it is working on with her in a different way, or looking to train someone new.
If you think someone new might be in order, can you start looking and training that person before your son Jim goes home? Maybe you can start something while Gina is on her week off?
Even if you had 2 people, a new one and Gina as back up, you would know if you need help there are people.
I know that you will put your excellent mind to this and I believe something will fall into place for you and Darcey
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