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jazzdoc007

New member
Joined
Jun 23, 2016
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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
 
Re: Venting about familiar stuff & softening resentment with humor.(at least a little

Hugs Paul. Wanted to write a longer post, wasn't coming out right. Just know I feel you, I hear you and Vent away, I'm listening and sending hugs and prayers.

Sue
 
Re: Venting about familiar stuff & softening resentment with humor.(at least a little

Paul, I greatly respect and appreciate you care and protection of your mother. You are doing the hardest thing in the world to do. Keep loving her an the heII with the rest of them.
 
Re: Venting about familiar stuff & softening resentment with humor.(at least a little

Paul, what a WONDERFUL vent! I think we need them. They are healthy and well deserved.

Paul, do you mind a few questions? If not, were you working as a physician when your mom was diagnosed? Did you give up a practice to become her fulltime caregiver? If so--wow. If not, then how fortunate she is anyway that you have that education. With an MD, how do they question your actions, decisions, diagnosis? You are Doctor, nurse, nurse's aid, physical therapist, dietician---the list goes on--to your mom.

I so understand the part about just hanging out. My husband and I fall into the caregiver/patient role and often forget to be husband and wife. We both picked up the phone yesterday when our daughter called. He thought I was her, and I played along because I loved the tone in his voice. So upbeat. So interested. I'm so jealous. No, not jealous, but it helped define what I'm missing.

I've been fortunate in my family and friends. They have either researched enough (finally) to understand, or they've been here long enough to realize that I seldom sit. Friends who visit bring food or cook, and family pitches in in some way. It took close to two years to get that routine established, however. I don't think the first couple of times they observed me in action made the point, but after realizing that 2 years plus later I'm doing even more, they are getting it. I've stopped slowing down to visit--I don't have time. If they want to visit with me, they wait for those rare moments or they pitch in. We live on a lake and have water toys, and Matt used to be the host with the most, taking everyone out on the boats and keeping them supplied with food and drink and fuel for the boats. Since progression is still slow we got around to putting a pool lift on the dock. Now if they want to boat and he's up to it, they have to go through the effort to get him onboard also. Their fun becomes all about him during the ride also. That's not to say they don't get to play when he's resting, because they do, but they realize that the only way I can join them is if one of them takes over with dad.

I'm one of the most fortuante of this unfortunate family, but need to vent also. I hate to, because my complaints are trivial compared to others here who have less or no support, but I still get supported. I love this place. It has saved me.

Becky
 
Re: Venting about familiar stuff & softening resentment with humor.(at least a little

Paul,

Thanks for your vent. I am nowhere near the same stage as you in my husband's progression. Many of my friends have been scarce already, telling me at first that I am so strong and will be fine and then not asking how we are doing in the 9 months since diagnosis and basically disappearing from our lives. That's why I appreciated my friend making a special trip to see me so much...she didn't question me or tell me I would be fine, she just listened.

I know as things progress, the people I can count on are few and far between; I have no family here and my sister-in-law has offered moral support only and told me I will have to hire someone to help us. I hope and pray that I will have enough in me to do all that you are doing.

V
 
Re: Venting about familiar stuff & softening resentment with humor.(at least a little

First of all, thank you for all of your replies. As you all know, just reading the words "I completely understand' and/or 'been there, done that', seems to - at the very least - 'ratchet' down the 'crisis' level. Further.....and this applies to everyone, whether ALS has affected their lives or not, since we are frequently powerless regarding the situation and/or other people's behavior/actions, resolution almost always depends on changing our perception of the situation....which for me, is usually the most difficult thing to do - but I am getting better. People could save a lot of money on self - help and/or self - improvement books, by realizing that the majority of them, in one way or another......can be distilled down to to the previous two sentences.

Regarding the questions posed by 'Nuts', I received my MD in 1989 from Ohio State and followed that up with a 3 year residency in Family Practice. While I began my clinical practice as a family doc in a small town, the majority has been as an Emergency Dept Doc. After a number of years working 'swing shift' in the ER, my clinical skills improved - but at the cost of all else. Things like marriage, kids and other things that I must not have appropriately prioritized at the time. Although not as 'en vogue' as it is now, my initial solution to these issues involved oral opiates (which I'm certain many are familiar with here). I soon learned there were many other ways to handle 'life' - that were much more beneficial to all involved, and less likely to result in those 'pesky' consequences - licensure, financial problems and the like. I do have 14 years of sobriety as I write this. Fortunately for me, while faced with issues of licensure, consent agreements,etc. - I received an offer to teach pathophysiology, pharmacology and anatomy/physiology at a BSN nursing school. During my career, I taught a lot - residents, medical students, PA's and others, and always loved doing that. So - I have remained part of the academic sector of a while now, in both medical and nursing school settings. Obviously - as faculty, I have had to remain current with my medical acumen - which is a great thing. I may re - enter the clinical realm at some point (although you may have noticed how many docs are getting out of the field now - for various reasons - such that I am no longer one of just a few docs who are using their education for non - clinical fields - it is almost becoming the majority in some places) and I was involved in checking out different possibilities for doing just that when my mom's health started to decline. As her condition became more defined, I realized that most likely, it was not going to change for the better - so I moved in with her a few years ago - and I'm still here. Although I may vent from time to time, I rarely forget what a blessing it has been to spend time with her both prior to her diagnosis and of course, after.

Interesting....in some ways, I have been busier now with educated family, friends and students about the world of medicine, then I was when I was in practice.... I realize that I may have provided more of an answer then you expected to your questions, but I always write 'too much' and for those active on this forum, I thought it appropriate to provide some background - should I refer to my profession, or sometimes speak from the perspective of someone who has cared for patients in the past - I try to provide information from such a perspective, only when it is within my scope of expertise - as opposed to when I was in clinical practice!! (A joke....) Paul
 
Re: Venting about familiar stuff & softening resentment with humor.(at least a little

Paul, I have friends and family in the medical profession, and it's not an easy one--to put it mildly. Congratulations on your sobriety, and thank you for caring for your mother and for helping bring more people into the field. I'm sure that you will have plenty to contribute here, so get ready!!!!

Becky
 
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