Friday, June 2, 2006

[photos of Magee and Magee's physical therapy studio]

Well, I lost my shit today. Not because Mike's not doing well. He is.
He ate a good breakfast and lunch, got himself into bed when I wasn't looking. Had a good sense of humor as I ate his left-over lasagna.

I lost my shit because once again, we're facing a transition - and more uncertainty.
Mike's last radiation treatment is Tuesday, June 6. The plan is to get him admitted to Magee's acute brain injury rehabilitation program starting as early as Tuesday afternoon (June 6) or Wednesday (June 7). The woman from Magee and the social worker sat down with me to talk about the plan. Because our health insurance has no limitation on days of acute brain injury rehab covered at 100% (thank g.o.s.h.), they figured there's nothing to lose starting rehab sooner rather than later. The thought is, Mike will do 3-4 weeks of rehab, and then have the cysts drained. After recovery in the hospital, he will likely be readmitted to Magee for another round of rehabilitation given whatever new skills he has in the face of the cysts no longer exerting such pressure in the brain. This whole thing will put us somewhere in August when he'll be returning home - hopefully with the short term memory issues and incontinence behind him.

That is the ideal plan, you see.

The on-paper plan is a bit different. You see, our health insurance, as great as it is, determines Mike's eligibility for rehab care on a 5-7 day basis. Every 5-7 days he will be reevaluated in terms of what kind of progress he's making in the Magee program. In the event that they deem him "plateaued" in terms of the benefits he's obtaining from rehab, the insurance company will cease coverage and Michael will need to go home.

As a result of this little legal detail, Magee needs assurance from me that I have a plan for 24 hour care for Michael in the event he is discharged
in his current condition (because after all, the promise of Mike getting better is just that... a promise, not a guarantee) . Even better - Insurance will not pay for in-home nursing care for Michael given his current needs. His needs are currently considered custodial, not medical. He needs help with medicines, toileting, eating, getting around, getting dressed, etc. But it's not like he needs medical treatment per se.

So, I ask the woman (who is super sweet and soft-spoken, BTW), what if I say no? What if I have a baby and a job and need to make a living to support us and can't possibly also monitor and take care of Michael on a 24 hour/day basis.

She explained that Magee needs a guarantee that the family has arrangements in place for the patient upon discharge - given the patient's current neurological and physical deficits. Otherwise, what's the point of rehabilitation? If the family is not prepared for the patient to be in the home, then why waste Magee's resources? After all, Magee is about helping brain injury patients acquire new skill sets to live somewhat independent lives. If the family has no plan in place for that to happen, then the patient might as well skip Magee, and go directly to a managed care facility or nursing home, since there will be someone there to take care of all of their needs - hence rendering rehab somewhat pointless.

A nursing home is not an option. No way in hell.
My sister worked in one. Both of my grandfathers spent time in nursing homes. For-get-it. No freaking way.

So, I collapse in front of this sweet woman and say, "What do I do? What do people like me do?"

"First of all," she explains, "it is not that common for someone in Mike's situation (young with a little baby) to suddenly become an individual in need of custodial care. But when it does happen, the answer is usually family."

"We have no family close by," I explain.

"Is there anyone? A sibling or parent who would be able to help you? This is too much for you to carry. You cannot do this alone. You're going to need someone here."

At this point, I'm really sobbing.

Lonia (Mike's mom) would be ideal for this. But she has her own independent life. She owns a home, has a fulltime job that pays well as a nanny in Cleveland. She has expressed her willingness to come help. Of course she wouldn't leave us stranded in this situation, but I hate the thought that I'm asking this woman to leave her life as she knows it to come here to help me care for my husband and child. It feels unfair. Like, why can't I quit my job and just care for my husband and son fulltime? Why do I need to ask that of Lonia?

I think about it and the answer is simple. Mike would be so crushed - pissed even - if I had to abandon the work that I love to care for him fulltime.

Back in late February, when I realized that he was acting weird (thought, I didn't know exactly how), I did research online and read about a woman whose 45 year old husband had just lost a battle with craniopharyngioma. Usually I would say that internet research on health issues is a bad idea. However, reading her story really prepared me for where we are now. Her husband lost his short term memory, suffered from hydrocephalus, was unable to care for himself and had to be in diapers 24/7. When I read this, I thought, "Oh shit."

At dinner that night, I said to Mike, "I know you want to think you're invincible and like you don't really have a brain tumor... but we need to talk."

Whenever I brought it up like this, he never argued.

"Ok" he said, curious.

"In the rare event that you end up unable to feed yourself, clothe yourself, or go to the bathroom yourself.... what do you want me to do?"

He looked at me with an arched eyebrow, "Well, smoosher, I don't think you can have me killed."

ha. ha.

"Oh... ok. Well then, in that case - would you want me to care for you? Or would you want to live in a nursing home or have a nurse here with you."

His response was short:
"If I can't wipe my own ass, I want a stranger to do it. That's not in your contract."

I know I've already written about this conversation with Mike somewhere on this blog - but I feel like I need to go over it again - and again - cause I'm plagued with guilt. Why isn't it in my contract? Why am I not clamoring to have him home at all costs? Why did I cry at the thought of him home? Isn't that the goal, really?

Lonia's not a stranger either. And is it in her "contract" as his mom to "wipe his ass" at the ripe ol' age of 38?

How did we end up here?

Ok - to reorient myself back to the positive perspective I usually have... this woman from Magee was talking about legal stuff, right? They need assurance that when Mike is discharged, someone will be there for him. They also want to make sure that we're not going into this blind.

Yes, I will need help. No doubt. But her saying it felt like a stinging slap in the face. Maybe I needed it.

The probable scenario is what I outlined at first - that Mike will do a few weeks of rehab, will get better and stronger with therapy and as the swelling continues to decrease post-radiation. Then, they'll drain the cysts (probably early July?) and Mike will probably regain a substantial about of his neurological functioning.

Digression: Why do I say this last statement with such confidence? Well, post craniotomy on April 4, Mike's loss of STM (short term memory) and incontinence happened in a matter of days. At precisely that same moment in time, that cyst on the top was growing extremely rapidly, as revealed in the MRIs done during that week. I refuse to believe that was a spurious relationship. Both Dr. Laws at UVA and Dr. Sen up in NYC believe that Mike's acute symptoms are due to the pressure caused by the cysts. So do Evans and Andrews.

So, Let's assume they drain those f*ckers in early July, then they let Mike recover a few days in the hospital - then return to Magee for more rehab. I think that the most likely scenario will not have Michael home in our house until he is dramatically improved from his current state. Probably late August.

In fact, I so believe this to be true, that having to imagine for even just a moment what it would be like to care for Mike in his current condition in our house felt like blasphemy or something.

I feel a hundred years old. Can you believe that just seven years ago I was a dumb kid working as a camp counselor at an overnight camp, teaching theater and drinking beers at 4 am in front of a bonfire on the beach?

Yup. A hundred years old.


Mary Fritsch said...

Whenever I need some realistic perspective, I read this blog. So many big decisions coming at you all at once. Some ideas...

Did your social worker give you some managed care facililty options? Can someone research them and get back to you with the options.

Nursing homes - not an option

Can someone find out if there are any in home service companies, that provide in home nursing services, grocery services, cleaning, etc. that could fill in some of the time. We have a few of those in this area and they are specificaly set up for patients and their families at a reduced cost. We use this service but it is not necessarily 24x7 but they may have some ideas and can cover part time.

Can you consider a private nurse, maybe the social worker would know of a private nursing service that someone could research for you or you could post an ad for your needs in the appropriate place.

They may need a guarantee but you need time to research this further so let them know your working on it and will get back to them with a plan once you know the options.

Your social worker should be able to do most of this for you but as we have found we really wanted to research some of these issues ourselves to better make decisions and social workers some times only have limited time and provide canned responses.

Gotta love insurance companies - they are really dictating our lives. Have they provided you any information on the options available to you - Mike must have a case manager - have you been contacted by an insurance case manager - he/she is most likely working the social worker - find out who it is and may be you can talk with directly and see what options they would recommend -you can also designate someone in family to work with insurance company by completing a medical authorization form so they can inquire more about options due to HIPA privacy laws - or even a friend as I am doing and believe me I could not get through my issues without my friend staying on top of this stuff. I need to focus on getting better and so do you both so if someone will consider stepping up to the plate on this issue and research that would be best for you.

We think of you often and are with you on this journey, a big hug to your family. Mike is fighting the fight and doing so very admirably -
with you.

Hang in there - we love you.

The Fritsch's from Wisconsin

Mary Fritsch said...

Danna, have you filed for disability for Mike yet, if not, your social worker can help you in the right direction to get forms, in Wisconsin it takes 5 months to become eligible but it is some supportive income for you both. Went into to google and there are some private nursing options that can be considered in New Jersey state - try to see who can take this research on. I will try to send you some links - what is your email address?

Mary Fritsch

The Brain said...

Mary thanks for all the info. I'll look into the answers to these questions today. yes, we have started receiving disability. Between the private and the state plan, we are getting about 2/3 of mike's salary.

You can email me at 185cranios@gmail.com. That's my email that I use for all things tumorish.

love you so much. You always have such good info for me.


Rosa said...

another thought:
My mother, when caring for her mother who was battling dementia, did not want to move her into a home. so she had several people come through and do basic things, but none was a registered nurse or anything expensive like that.

She found a family member who would come in on the weekends for a few hours for meals, a young woman with a bit of home care experience come in for a few hours during the week, and another person come in to do things like laundry and such.

It was a bit complex, but because it wasn't a full time nurse-type person, it was more managable. The trick is, I suppose, finding people to trust, but since they are not medical things you need per se, perhaps there are some people looking for work who could be drawn on for the hours you are away at the uni. It does cost, but I imagine it's a lot less than a full-time person.

and sometimes, if they are registered with the right organizations, there are subsidies avaliable for that labor, as well. i think Mary mentioned most of them.

thinking of you as always.