jazzdoc007
New member
- Joined
- Jun 23, 2016
- Messages
- 8
- Reason
- CALS
- Diagnosis
- 02/2016
- Country
- OH
- State
- Ohio
- City
- Beachwood
Venting about familiar stuff & softening resentment with humor.(at least a little)...
I logged on primarily to vent....which I intend to do. However....as I was perusing the newer posts, I came across 'Vistra's post about her college roommate coming to visit, and realized that in some ways....the thread and the title of the thread, capture the 'gist' of my emotions. While I would always classify having a true old friend come in town to visit and support me as 'awesome', only those in certain situations (such as ours...) would truly understand why these events earn the title "A Treasure More Precious then Gold". In fact, if there were common phrases that categorized those events as greater the Gold.....those would have been apropos. For me, what makes our situation so frustrating at times, is that unless you have experienced it....actually been in the trenches......for more then a couple hours.....empathy is impossible. From the perspective of those friends and family members, whether circling at a distance or believing that they are 'in the loop'....whether they admit it or not, must be saying to themselves "come on....how hard can it be...?"
I mean, really....how hard is it to hook up a tube and pour liquid into a syringe? or assist with showers/baths or any bathroom related activity? Heck....mom spends time resting...you should be taking care of yourself and resting when she does? You need to manage your time better.... (I'll bet those of you reading this, who have heard similar statements from their 'loved' ones are becoming agitated...just reading these words!) Of course, they have no idea about the mess in the kitchen with a mixture of food and saliva, that you waited to tackle until they weren't there....as you are aware how demeaning it can be to have someone constantly coming at you with a towel. Or the respiratory tubing that needs to be cleaned so that the suction is ready and available when they need it...... Or walking the dog, taking out the garbage...etc,etc,etc.... When described this way, it can certainly sound as if I am bitter and resentful....there is a good reason for that - because I am - not frequently and only in those moments (rare...but becoming more common). Most importantly, though, is the effort it can take to not take it out on mom - or whomever you are caring for. I mean...she knows me....I can't be completely clandestine....but since I continuously remind her that 'I am NOT at all bitter, resentful or any other similar emotion at her' - she has heard it enough that she knows that it is true. In fact, sensing this, she will often suggest that I get together with my close friends (who do understand), or go online to read about your various challenges....and at the very least, know that I am not alone. She knows, perhaps better then anybody, the underlying reasons for my agitation....
Of all the things described above, the number one offender for me is being spoken to in a 'patronizing' manner. "Yes.....we all understand how hard it is for you (for me??? what? here is what I hear - "if I was doing what you are doing, I would be able to handle it much more efficiently, and I certainly would not be complaining so much") From those two little words (for you) - that's what lands on my heart. I have a brother in town (there are 3 of us boys - and yes, I am the oldest), who after much discussion - manages to show up pretty much on a daily basis. However - and it is a major however - he never shows up before 4:00 in the afternoon. I mean 'he has a life to live and a business to build' - when he is finished with all the activities that would be included in either 'his life' or 'his business' or God forbid.....both -- things like 'hot yoga' - how else is he going to make contacts? or coffee at Starbuck's (where he often meets with his clients)! So after I have taken care of 2 or 3 tube feeds, bathroom duty and a myriad of other things that you who are reading this know all about, he shows up to 'hang out with mom'. Not that 'hanging out with mom' is a bad thing, quite the contrary. Actually that is something that I would enjoy experiencing once in a while - you know?
Finally, although mom's official ALS diagnosis came in 12/15 (something that I have to change on my profile, as we didn't realize that the full body EMG was in December 2015 - not February of 2016), her symptoms really started around 9 months before that. That is when the doctor's visits, lab and X-ray tests and other consultations began. Mom has one sister, her only sibling, obviously my aunt. They have always been very close - although for some time, not in a logistical sense. We live near Cleveland, Ohio (yes.....even in the suburbs we can see Donald Trump's hair, or maybe 'air'......I'll leave it there). My aunt (and uncle) live in Los Angeles - and have for close to 20 years. So....several months ago, we where graced with her presence for close to two weeks - which was plenty of time for her to question every action/step that we had taken regarding her diagnosis....up through that point. This upcoming Sunday (7/24), both her and my brother who lives in Connecticut are coming in for 'a while'. The primary issues provoking me to write this in the first place, were the frequent patronizing phone calls that I have been receiving over the past few weeks - including some of their 'greatest hits' like "All you have to do is 'hold it together' for another ________, we'll be there soon" or, who can forget this little ditty? ]Implanting a g-tube is a simple procedure - no reason to cancel our cruise to Norway...and come all the way there" - "remember - we will be there soon enough".... I could go on and on (I'm pretty sure that this phrase has appeared in all of my previous posts as well....).
Well....I do feel somewhat better after successfully trivializing all of their concerns and patronizing statements. I'm certain that I will have more to vent about once all of the decisions we have made - medical and personal - have been questioned and where applicable, made aware of what the appropriate decision should have been. Somehow....despite my MD degree and all of the literature research I have done over the past year or so - I'm just not 'as up to date' as I could be - oh well - more to come....I'm sure. Until then, my hopes and prayers are extended to all of you reading this - who can actually appreciate all of this from my point of view - how accurate it was when I was welcomed into the club that no one would ever volunteer to be a part of, yet once a member, you'll thank God that it is here....Paul
I logged on primarily to vent....which I intend to do. However....as I was perusing the newer posts, I came across 'Vistra's post about her college roommate coming to visit, and realized that in some ways....the thread and the title of the thread, capture the 'gist' of my emotions. While I would always classify having a true old friend come in town to visit and support me as 'awesome', only those in certain situations (such as ours...) would truly understand why these events earn the title "A Treasure More Precious then Gold". In fact, if there were common phrases that categorized those events as greater the Gold.....those would have been apropos. For me, what makes our situation so frustrating at times, is that unless you have experienced it....actually been in the trenches......for more then a couple hours.....empathy is impossible. From the perspective of those friends and family members, whether circling at a distance or believing that they are 'in the loop'....whether they admit it or not, must be saying to themselves "come on....how hard can it be...?"
I mean, really....how hard is it to hook up a tube and pour liquid into a syringe? or assist with showers/baths or any bathroom related activity? Heck....mom spends time resting...you should be taking care of yourself and resting when she does? You need to manage your time better.... (I'll bet those of you reading this, who have heard similar statements from their 'loved' ones are becoming agitated...just reading these words!) Of course, they have no idea about the mess in the kitchen with a mixture of food and saliva, that you waited to tackle until they weren't there....as you are aware how demeaning it can be to have someone constantly coming at you with a towel. Or the respiratory tubing that needs to be cleaned so that the suction is ready and available when they need it...... Or walking the dog, taking out the garbage...etc,etc,etc.... When described this way, it can certainly sound as if I am bitter and resentful....there is a good reason for that - because I am - not frequently and only in those moments (rare...but becoming more common). Most importantly, though, is the effort it can take to not take it out on mom - or whomever you are caring for. I mean...she knows me....I can't be completely clandestine....but since I continuously remind her that 'I am NOT at all bitter, resentful or any other similar emotion at her' - she has heard it enough that she knows that it is true. In fact, sensing this, she will often suggest that I get together with my close friends (who do understand), or go online to read about your various challenges....and at the very least, know that I am not alone. She knows, perhaps better then anybody, the underlying reasons for my agitation....
Of all the things described above, the number one offender for me is being spoken to in a 'patronizing' manner. "Yes.....we all understand how hard it is for you (for me??? what? here is what I hear - "if I was doing what you are doing, I would be able to handle it much more efficiently, and I certainly would not be complaining so much") From those two little words (for you) - that's what lands on my heart. I have a brother in town (there are 3 of us boys - and yes, I am the oldest), who after much discussion - manages to show up pretty much on a daily basis. However - and it is a major however - he never shows up before 4:00 in the afternoon. I mean 'he has a life to live and a business to build' - when he is finished with all the activities that would be included in either 'his life' or 'his business' or God forbid.....both -- things like 'hot yoga' - how else is he going to make contacts? or coffee at Starbuck's (where he often meets with his clients)! So after I have taken care of 2 or 3 tube feeds, bathroom duty and a myriad of other things that you who are reading this know all about, he shows up to 'hang out with mom'. Not that 'hanging out with mom' is a bad thing, quite the contrary. Actually that is something that I would enjoy experiencing once in a while - you know?
Finally, although mom's official ALS diagnosis came in 12/15 (something that I have to change on my profile, as we didn't realize that the full body EMG was in December 2015 - not February of 2016), her symptoms really started around 9 months before that. That is when the doctor's visits, lab and X-ray tests and other consultations began. Mom has one sister, her only sibling, obviously my aunt. They have always been very close - although for some time, not in a logistical sense. We live near Cleveland, Ohio (yes.....even in the suburbs we can see Donald Trump's hair, or maybe 'air'......I'll leave it there). My aunt (and uncle) live in Los Angeles - and have for close to 20 years. So....several months ago, we where graced with her presence for close to two weeks - which was plenty of time for her to question every action/step that we had taken regarding her diagnosis....up through that point. This upcoming Sunday (7/24), both her and my brother who lives in Connecticut are coming in for 'a while'. The primary issues provoking me to write this in the first place, were the frequent patronizing phone calls that I have been receiving over the past few weeks - including some of their 'greatest hits' like "All you have to do is 'hold it together' for another ________, we'll be there soon" or, who can forget this little ditty? ]Implanting a g-tube is a simple procedure - no reason to cancel our cruise to Norway...and come all the way there" - "remember - we will be there soon enough".... I could go on and on (I'm pretty sure that this phrase has appeared in all of my previous posts as well....).
Well....I do feel somewhat better after successfully trivializing all of their concerns and patronizing statements. I'm certain that I will have more to vent about once all of the decisions we have made - medical and personal - have been questioned and where applicable, made aware of what the appropriate decision should have been. Somehow....despite my MD degree and all of the literature research I have done over the past year or so - I'm just not 'as up to date' as I could be - oh well - more to come....I'm sure. Until then, my hopes and prayers are extended to all of you reading this - who can actually appreciate all of this from my point of view - how accurate it was when I was welcomed into the club that no one would ever volunteer to be a part of, yet once a member, you'll thank God that it is here....Paul