I started to comment but as it grew to novel proportions, I decided a post was in order. After starting the post, realized one wouldn't cut it, so this will be the start of a few articles. Following up on a promise I made about posting how my other half and I are coping.
It seems like a lifetime ago that my partner was diagnosed with ALS, more commonly known as Lou Gehrig's disease. It's a terminal, degenerative neuromuscular disease. About the time he was diagnosed, a friend of mine found out he had early onset Parkinson's. Between the two, I've had lots of exposure to life changing illness lately.
Jennifer, my friend's wife and I all share one thing. We are caregivers. As I am finding out, kind of unsung heroes. People expect us to be in this role and that we'll somehow make everything work. Don't get me wrong, none of us would be anywhere else but there isn't a lot of support out there if you're taking care of your significant other. It's taken as a given.
The ALS Society has incredible resources that have been put at our disposal: equipment, PSW's, occupational and physiotherapists, a nurse practitioner. The ALS clinic has been wonderful as well; a battery of doctors have been there to help as much as possible. In talking with my friend, I know he hasn't received the same level of help. I'm enormously grateful for the combined efforts these people have made and continue to make on our behalf.
Unfortunately the emphasis is on his physical state. There was a suggestion of counselling, but it isn't a required part of treatment and as such has limited coverage with our health plan. He refused it anyway so a bit of a moot point.There is also no coordination of treatment. The specialists treat the ALS, a GP for general health, a massage therapist, a physiotherapist, a neuropsychologist ... The list goes on. He is treated as his disease, bit by bit, not as a whole person.
As it turns out, there is a very simple reason for this, liability. No one wants to be sued. Every decision is made by the patient. In fairness, everyone has been quite frank about it. The specialists only treat the symptoms of the disease, the GP flat out said he knew nothing about ALS, that was for the specialists. Honest but no less frustrating.
For me, very important to keep a positive attitude around him. Important to keep him in a positive state of mind. It's "crucial" to his well being. Not a suggestion in the world as to how that was going to happen. I'm not a patient so don't require treatment, he isn't required to do anything to support his mental health. Except take these pills, and if they don't work we can add these ones and we can increase the dosage. More frustration.
My health plan will cover 5 therapy sessions. Searching online, I found a support group that meets for caregivers of seniors with ALS, once a month, 2 hours away. I did find an online group that has been very supportive, especially in the early days. I also have an incredibly strong group of family, friends and co workers. I'm lucky.
Being one of the lucky ones doesn't make me feel any less alone in this sometimes. Then I stumble across something like what Jennifer wrote and know some one out there knows exactly how I feel. That this thing we share hasn't got the best of us. It eases the bad days and the good ones are that much sweeter.
I am a caregiver.