'Cause I'm not who I used to be
No longer easy on the eyes
But these wrinkles masterfully disguise
The youthful boy below
Who turned your way and saw
Something he was not looking for
Both a beginning and an end
But now he lives inside someone he does not recognize
When he catches his reflection on accident
-Brothers on a Hotel Bed - Death Cab for Cutie
Of all the suffering ALS creates the most overlooked is the suffering it inflicts on primary caregivers. For every loss the patient endures, someone has to pick up the slack and that person is almost always the caregiver. Think about that, you watch your loved one slowly die and you are expected to be their nurse /medical aid/social worker and more. Your workload and stress ratchet up as your loved one declines. It is hard to imagine a scenario more likely to result in major depression. I do not know why we put so much burden on spouses or other family members but it is the standard practice in this country. Why Stephanie is expected to regularly perform tasks that Medicare considers to be "skilled nursing" with little or no training is beyond me, but that is our system at the moment.
No ALS caregiver, not the unpaid ones anyway, signed up for any of this nonsense. If you ask them most will put a brave face on it, but nobody actually wants the job. They have been thrown one of life's biggest curve balls and have only the inevitable loss of their person with ALS to look for release from their duties.
Of course all this radically changes the relationship between the now patient and now caregiver. More often than not they are a married couple as is the case with me and my wife Stephanie. How caregivers react to the new reality varies greatly. Many times a caregiver simply can't handle things and separations are not unheard of. I am very fortunate that Stephanie is as strong as she is because without her advocating for me I would be much worse off. Thanks to my situation her life is nothing like what she expected but she still fights for me. I have gone from a fit and active husband to one who is pretty much only good at making things wet and/or smelly. I can tell she hates having to be so involved in my personal care but she does what needs to be done. All this familarity with my every bodily function as well as the day to day stress has put a damper any real intimacy, just one more relationship challenge.
We are fortunate enough that we have been able to privately hire a couple of part time assistants to give Stephanie a few hours a week off. We are lucky to have found two outstanding aides, I look forward to my time with them and I know Stephanie really appreciates their efforts. People of low enough income who are on Medi-Cal get full time assistants as well as pay for family members who are providing care. It hardly seems fair that the surviving partner is expected to go essentially bankrupt before such care will be provided.
Caregiving in ALS is overlooked and under appreciated. The caregiver of a person with ALS has one of the most difficult jobs I can imagine, one which will only end unhappily. My caregiver may not always feel like it, but she is the rock I depend on and words alone cannot express my gratitude or how sorry I am that her life has become so dominated by my disease. ALS is merciless.
Of all the suffering ALS creates the most overlooked is the suffering it inflicts on primary caregivers. For every loss the patient endures, someone has to pick up the slack and that person is almost always the caregiver. Think about that, you watch your loved one slowly die and you are expected to be their nurse /medical aid/social worker and more. Your workload and stress ratchet up as your loved one declines. It is hard to imagine a scenario more likely to result in major depression. I do not know why we put so much burden on spouses or other family members but it is the standard practice in this country. Why Stephanie is expected to regularly perform tasks that Medicare considers to be "skilled nursing" with little or no training is beyond me, but that is our system at the moment.
No ALS caregiver, not the unpaid ones anyway, signed up for any of this nonsense. If you ask them most will put a brave face on it, but nobody actually wants the job. They have been thrown one of life's biggest curve balls and have only the inevitable loss of their person with ALS to look for release from their duties.
Of course all this radically changes the relationship between the now patient and now caregiver. More often than not they are a married couple as is the case with me and my wife Stephanie. How caregivers react to the new reality varies greatly. Many times a caregiver simply can't handle things and separations are not unheard of. I am very fortunate that Stephanie is as strong as she is because without her advocating for me I would be much worse off. Thanks to my situation her life is nothing like what she expected but she still fights for me. I have gone from a fit and active husband to one who is pretty much only good at making things wet and/or smelly. I can tell she hates having to be so involved in my personal care but she does what needs to be done. All this familarity with my every bodily function as well as the day to day stress has put a damper any real intimacy, just one more relationship challenge.
We are fortunate enough that we have been able to privately hire a couple of part time assistants to give Stephanie a few hours a week off. We are lucky to have found two outstanding aides, I look forward to my time with them and I know Stephanie really appreciates their efforts. People of low enough income who are on Medi-Cal get full time assistants as well as pay for family members who are providing care. It hardly seems fair that the surviving partner is expected to go essentially bankrupt before such care will be provided.
Caregiving in ALS is overlooked and under appreciated. The caregiver of a person with ALS has one of the most difficult jobs I can imagine, one which will only end unhappily. My caregiver may not always feel like it, but she is the rock I depend on and words alone cannot express my gratitude or how sorry I am that her life has become so dominated by my disease. ALS is merciless.
