Just Found This Forum....First Post / vent (?)

[jazzdoc007]

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

 

[Atsugi]

Please use paragraphs. Some of us can't read that, and the rest of us won't read it. Is there an "Edit" button next to the Reply and Quote buttons?

 

[affected]

Welcome Paul!

I wonder if you would mind editing your post to make paragraphs as I ended up not getting through your whole story, even though I wanted to read it all, the words just all ran together. I'm very conscious that if I find it hard, then PALS will find it even harder.

You have found the right place, it's a wonderful family here. I'm so sorry about your mum's diagnosis xx

 

[lgelb]

Paul,

You can post here any time and thus uncork the emotions of which you speak. I never had the "plans" fantasy since I knew my husband had Marfan when we married and there were plenty of complications from that decades before ALS. But, working in health care, I do know the "best person for the job" syndrome.

Best,
Laurie

 

[zoohouse]

I am glad that you are there for your mother. No being a primary care giver is not easy, and is often unappreciated by our extended family. Do not hold your frustrations in as it will manifest in some other way, a very well known fact. Just ask my physiotherapist and massage therapist. I am glad you have grown kids that are supportive of you. You are being an excellent example to them even if they are adults. I am a firm believer in do on to others as you would have them do onto you. It took me a few years and some amazing friends to set up a support system for myself, and even then I have a hard time taking time for myself. It will get easier as things become more routine, and become the "new normal." Hang in there.
Paulette

 

[affected]

Wow Paul, thanks for cleaning up that post, I'm so glad I could sit and read through it properly now.

I can relate to every bit - the lack of support, the desire to be the caregiver, yet the enormity of the task. And the inability to even get to the loo, I laughed so much - out of empathy, because I could so relate!

You are not complaining - I believe strongly that it is so important for CALS to be able to vent. It releases a lot of pressure, and when the venting is validated by others, it releases even more pressure. I believe it allows us to blow off some steam, then return to our PALS with renewed energy and love.

To someone who has never been a carer, it can sound like complaining, but to us it sounds like healthy pressure valve workout.

You have found a new family here. Welcome!

 

[Narrowminded]

Paul, welcome home. I hate to say those words though as it means you are dealing with the same monster the rest of us are. I just found this forum myself, not long ago even though we are in our 12th year of this mess.

We chose to vent almost 6 years ago. We did research and felt it was the option for us. Others choose differently. It's a very private decision in my mind.

As to family, I can tell you that unless someone lives in your house, they have absolutely no clue as to what you go through day in and day out. However, come here and lay it all out because we do understand completely. We are here to support you every step of the way.

Don't be surprised when your large network of "Friends" shrinks. There are many reasons, some because they are afraid or don't know what to do. Others leave because your life is bound to your PALS and making plans to do something for yourself feels like moving heaven and earth to make it happen. They don't understand and I guess just get tired of hearing that you don't have coverage and can't you stop by here.

Hang in there and know we are here for you.

(((hugs)))

Sue

 

[sunnysierra]

Hi Paul, you describe it so aptly, the dissonance of mind and heart. Tending to our loved one, being in the moment, yet part of us acknowledging the current and impending loss. I have a profound existential ache that never goes away. I find counseling tremendously helpful but I have a counseling psychology background and that is the lens through which I view life.

I am so sorry to welcome you to the group you never wanted to join. You will find this forum a place of understanding and comfort. Knowing you are not alone in the ALS challenges will be helpful in and of itself. I am very fortunate in having a close group of friends who (so far) are wanting to help. My PALS is my husband, and he does not have many friends so our support system is mostly my friends and they care so much about my welfare and are always asking what they can do to help me.

Like Tillie, I had a good empathetic chuckle at your description of trying to get to the bathroom.

Welcome to the forum,
Kathleen

 

[jazzdoc007]

All:
Thank you all for the loving, compassionate and empathetic welcome. As some of you noted, joining this 'club' is both a blessing and a curse.

As I noted in my post, I like to write, and although for most of my career - I have had a 'day job' (ER Doc/ Faculty), my real passion is music. I am a piano/keyboard player...and fortunately...at least a part of my emotional 'purging' becomes 'morphed' into music.

About 20 years ago, I was asked to write a personalized 'soundtrack' for someone receiving chemotherapy. Since then, I have been blessed with the opportunity to do this a number of times...the last a few years back. I only bring this up, as the last 3 individuals I wrote for had ALS.....and they used the music while meditating and sometimes to help them get to sleep. At the time, never letting a moment - no matter how morbid - go by without interjecting some form of humor (at least from my perspective), I joked that I was worried about 'catching' ALS. Well...about a year and a half after that - my mother is diagnosed with ALS....go figure?

Despite being 81 years of age, my mother just recently stepped down from being president of our Temple sisterhood and the local arts council. Up until about a year and a half before the present, she walked her dog (a beagle named Amos) close to 5 miles everyday (even in the winter). Unfortunately ALS has primarily affected her ability to walk and talk, the two activities which had been among her greatest assets. As many have noted, it's not fair.....not even close.

Furthermore, as I shared previously - and as many of you concurred - we have a 'front row seat' to their progressive loss of motor neurons, and the associated limitations in regard to their activities of daily living. In my experience, the level of care we provide our loved ones, is directly proportional to the severity of their disease, which in turn results in higher levels of frustration on our part and less time (if any) available for 'self - care'. A scenario especially exacerbated by a lack of support and/or assistance from other friends and family members.


It is ironic then, that as the PALS condition worsens, not only does our level of compassion increase - so does our degree of frustration, feeling of isolation and possible resentment directed at those we believe should be 'in the trenches' with us. As if this dysphoric mixture didn't 'taste' bad enough already, at least from my perspective, we top it all off with a healthy dose of guilt for having such 'selfish' feelings in the first place! I mean, we aren't the ones with the disease, how 'self - centered' of us to feel any degree of frustration or resentment?! Where do we get off complaining of fatigue, irritability or experiencing difficulty with maintaining our friendships, commitments or social interactions?

Once again, I am so happy to have found a place - where others actually do 'have a clue' in regards to my comments and/or experiences. There is definitely a difference in regards to the pain resulting from misery experienced alone vs. that shared among empathetic people - trudging along a path similar to the one you're on. As I look back on my life, recalling other situations where I found comfort in online communities like this one, I can honestly state that the compassion and encouragement I have - and continue to receive, from people like you - is the closest I have come to what feels like truly unconditional love. I will no doubt continue to share my life experiences - both bitter and sweet - here........ Paul

 

[Narrowminded]

Paul I totally agree with your paragraph about our "self-centeredness" I was thinking about this exact thing today. Been kind of down and was thinking about being bored and frustrated etc as you mentioned, then I'm like well how do you think DH feels, he can never leave the house let alone his bed. It does bring on a feeling a guilt and what do you have to complain about. Plain and simple this disease stinks big time.

Sue