jazzdoc007
New member
- Joined
- Jun 23, 2016
- Messages
- 8
- Reason
- CALS
- Diagnosis
- 02/2016
- Country
- OH
- State
- Ohio
- City
- Beachwood
I apologize for not using paragraphs, etc. For some reason, I assumed that only caregivers would be reading this...pretty ignorant on my part. I like to write...as is somewhat obvious. I will try to be more succinct in future posts....Paul
Maybe I haven't searched enough, but this is the first active forum I've found for primary caregiver's of person with ALS. In my case, I am taking care of my 81 year - old mother (diagnosed in 2/2016). Perusing some of the entries from others in similar positions, I immediately could relate to the issues discussed.
Although the specifics were different, the underlying feelings were the same as I feel (unfortunately...most of the time, now). I am in my mid 50's and moved back home (Cleveland) a few years ago....after a divorce. It was my second marriage, and left me beaten down to a shell of a man. Fortunately, my three children were from my first marriage, and as opposed to being 'pawns' - as children often become in divorce - they are 'adult children', and provided an amazing amount of support.
My father died about 6 years ago, and my mother still lives in the house I grew up in. My 'plan' was to spend time healing and 'getting my feet back under me' and then move into my own place....getting 'on with my life'. I have heard it said before, "if you want to make God laugh....share your plans for the day/week,etc. with Him" - so true in my case.
Unknown to me at the time, as I was healing and getting stronger, my mother's motor neurons were dying. Unfortunately...even if we knew earlier...there exists nothing (other then Prayer) capable of reversing - or halting the process. As those reading this obviously know and have experienced, what started as 'drop foot' in her right leg, soon became associated with slurred speech - and after all the common and not so common potential diagnoses were ruled out, a full body EMG resulted in as solid a diagnosis of ALS...as can be established at the present time.
Given that I was already living here, the oldest child in the family (of 3 boys) and a physician, no discussion was needed - as to my role. A decision which I would unflinchingly make again, despite the feelings/issues related in this post - and hopefully others as well. Even if I was not in the medical field, I am more suited to the role of caregiver - then the others (sort of making this a meaningless statement - as that is probably what led me into healthcare in the first place...).
One of my brothers lives here in Cleveland, the other on the east coast. We have always been at the center of family and our circle of close friends. Holidays, and other gatherings almost always occurred here, etc. So...I sort of assumed that there would be a host of people, more then willing to help out - especially after learning the diagnosis. Again, as those reading this already know.....not! There was, or is, not a group of friends and/or family offering help, and even less actually helping with anything
Of course...friends and family members, whose medical training came from Cosmopolitan and Reader's Digest, were (and still are) more then willing to share their wisdom regarding certain and instant cures for ALS. In fact, if I am on the phone with someone, and hear "you know what you guys should do...." - I hang up before I am forced to listen to another miracle cure. If their advice is meaningful, they will call back.
Although I have 3 children, I have no clue as to what women experience after the birth of their child - or the specific factors responsible for 'post - partum depression'. I bring this up because, apart from the neurochemical dynamics, I suspect that there are some similarities between the feelings experienced in those situations - and those I (or really any primary caregiver of someone with a terminal illness) feel in this situation.
Although we are appreciated...and maybe even admired for our 24 hour a day/ seven days a week dedication to an individual who needs such care, we are not the recipient of the love and attention of those close to us. Although others in the circle of family and friends feel some sense of responsibility to provide support, a store bought card with a few words handwritten by them readily satisfies this responsibility - without even requiring them to wash their hands. Even close family members, who are active participants in caring for the ill family member (intermittently), know that 'no matter what' - should they not be there when planned, or really anytime, you will be there - and the person will not experience a lack of care.
After a while, when routines are established, others on the 'outside' may actually start wondering why you are not 'getting on with your life'....I mean, really, there is now someone coming in four hours - twice a week, for God's sake, plenty of time to get a job, have a relationship, join a gym, whatever.
There is no way they (or anyone not living this experience) could understand what being a primary caregiver entails. You are heading to the bathroom, finally!!, only to hear something fall, and because of communication issues, your only choice is to visually ensure that everything is OK. Then the phone rings...could be the nursing service, doctor, person you have been waiting to hear from, so you answer it. They want to talk to mom....so you make sure that the cell phone APP allowing for that to happen is up and running and that they have the stylus they need. Then the dog barks to come in.....but wait, what about going to the bathroom...don't have to anymore - just wait until next time.
To those who are not caregivers, and perhaps even to those who are, it may sound as if I am complaining about everything....wishing that someone else had this responsibility. Here lies the problem - I don't wish somebody else was in my role....also, I don't ever feel that my mother is the source - or cause - of my frustration. We experience a deeper level of discomfort then 'cognitive dissonance' - feelings are involved. It is not simply a 'dissonance' of the head - but of the heart as well.
My frustrations are partly aimed at those involved in the day to day situation, who are seemingly oblivious to my issues, or worse, feel that any of these feelings are not justified or valid. Those who can't understand why we might want a 'scheduled' period of respite every week or every other week. The rest of my frustrations are aimed at life/death itself. My profound sadness, secondary to watching my mother fall apart piece by piece, has to be 'roped in' most of the time. If I am not a source of strength and hope to my mother - who will?
I am concerned about the long term effects of bottling up these feelings and emotions. It is my hope that by expressing them in writing here and other similar venues (if I can find them)...I will at least partly cast off the weight pulling me under...helping me (and maybe others as well...) now and in the future.....Paul
Maybe I haven't searched enough, but this is the first active forum I've found for primary caregiver's of person with ALS. In my case, I am taking care of my 81 year - old mother (diagnosed in 2/2016). Perusing some of the entries from others in similar positions, I immediately could relate to the issues discussed.
Although the specifics were different, the underlying feelings were the same as I feel (unfortunately...most of the time, now). I am in my mid 50's and moved back home (Cleveland) a few years ago....after a divorce. It was my second marriage, and left me beaten down to a shell of a man. Fortunately, my three children were from my first marriage, and as opposed to being 'pawns' - as children often become in divorce - they are 'adult children', and provided an amazing amount of support.
My father died about 6 years ago, and my mother still lives in the house I grew up in. My 'plan' was to spend time healing and 'getting my feet back under me' and then move into my own place....getting 'on with my life'. I have heard it said before, "if you want to make God laugh....share your plans for the day/week,etc. with Him" - so true in my case.
Unknown to me at the time, as I was healing and getting stronger, my mother's motor neurons were dying. Unfortunately...even if we knew earlier...there exists nothing (other then Prayer) capable of reversing - or halting the process. As those reading this obviously know and have experienced, what started as 'drop foot' in her right leg, soon became associated with slurred speech - and after all the common and not so common potential diagnoses were ruled out, a full body EMG resulted in as solid a diagnosis of ALS...as can be established at the present time.
Given that I was already living here, the oldest child in the family (of 3 boys) and a physician, no discussion was needed - as to my role. A decision which I would unflinchingly make again, despite the feelings/issues related in this post - and hopefully others as well. Even if I was not in the medical field, I am more suited to the role of caregiver - then the others (sort of making this a meaningless statement - as that is probably what led me into healthcare in the first place...).
One of my brothers lives here in Cleveland, the other on the east coast. We have always been at the center of family and our circle of close friends. Holidays, and other gatherings almost always occurred here, etc. So...I sort of assumed that there would be a host of people, more then willing to help out - especially after learning the diagnosis. Again, as those reading this already know.....not! There was, or is, not a group of friends and/or family offering help, and even less actually helping with anything
Of course...friends and family members, whose medical training came from Cosmopolitan and Reader's Digest, were (and still are) more then willing to share their wisdom regarding certain and instant cures for ALS. In fact, if I am on the phone with someone, and hear "you know what you guys should do...." - I hang up before I am forced to listen to another miracle cure. If their advice is meaningful, they will call back.
Although I have 3 children, I have no clue as to what women experience after the birth of their child - or the specific factors responsible for 'post - partum depression'. I bring this up because, apart from the neurochemical dynamics, I suspect that there are some similarities between the feelings experienced in those situations - and those I (or really any primary caregiver of someone with a terminal illness) feel in this situation.
Although we are appreciated...and maybe even admired for our 24 hour a day/ seven days a week dedication to an individual who needs such care, we are not the recipient of the love and attention of those close to us. Although others in the circle of family and friends feel some sense of responsibility to provide support, a store bought card with a few words handwritten by them readily satisfies this responsibility - without even requiring them to wash their hands. Even close family members, who are active participants in caring for the ill family member (intermittently), know that 'no matter what' - should they not be there when planned, or really anytime, you will be there - and the person will not experience a lack of care.
After a while, when routines are established, others on the 'outside' may actually start wondering why you are not 'getting on with your life'....I mean, really, there is now someone coming in four hours - twice a week, for God's sake, plenty of time to get a job, have a relationship, join a gym, whatever.
There is no way they (or anyone not living this experience) could understand what being a primary caregiver entails. You are heading to the bathroom, finally!!, only to hear something fall, and because of communication issues, your only choice is to visually ensure that everything is OK. Then the phone rings...could be the nursing service, doctor, person you have been waiting to hear from, so you answer it. They want to talk to mom....so you make sure that the cell phone APP allowing for that to happen is up and running and that they have the stylus they need. Then the dog barks to come in.....but wait, what about going to the bathroom...don't have to anymore - just wait until next time.
To those who are not caregivers, and perhaps even to those who are, it may sound as if I am complaining about everything....wishing that someone else had this responsibility. Here lies the problem - I don't wish somebody else was in my role....also, I don't ever feel that my mother is the source - or cause - of my frustration. We experience a deeper level of discomfort then 'cognitive dissonance' - feelings are involved. It is not simply a 'dissonance' of the head - but of the heart as well.
My frustrations are partly aimed at those involved in the day to day situation, who are seemingly oblivious to my issues, or worse, feel that any of these feelings are not justified or valid. Those who can't understand why we might want a 'scheduled' period of respite every week or every other week. The rest of my frustrations are aimed at life/death itself. My profound sadness, secondary to watching my mother fall apart piece by piece, has to be 'roped in' most of the time. If I am not a source of strength and hope to my mother - who will?
I am concerned about the long term effects of bottling up these feelings and emotions. It is my hope that by expressing them in writing here and other similar venues (if I can find them)...I will at least partly cast off the weight pulling me under...helping me (and maybe others as well...) now and in the future.....Paul
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