Saturday, January 15, 2011

Family Matters

My mother was discharged from the hospital to a local nursing home here in Manassas for 30+ days of recovery. She is just as demanding and thankless as ever when we speak on the phone and it is very difficult to hold my tongue and not unleash my anger on her. There is a lot of anger between us that I’m having trouble letting go of. This week Jon and I have to begin the process of closing down their apartment and putting things in storage until we know what Mom’s next transition will be (to a single apt in Manassas or to a long term nursing home situation).

It’s been exactly one week since Dad came to live with us. What I’m learning is that he has bad days and he has good days. Today, is a good day. He woke up with a smile and asked me what we are going to do today. This is a big departure from his often sullen and withdrawn demeanor. His motor skills are a bit sharper this morning also.

The big news with Dad is that after reviewing his medical records I have found out that he does not have Alzheimer’s. Originally when he began to present with dementia and other symptoms his primary care physician assumed AZ and sent him to a neurologist and psychiatrist as well for consults who agreed: must be AZ. However he continued to decline rapidly and started to show symptoms that were not associated with AZ such as a very specific type of hand tremor. He was referred to another neurologist  who did a full work up on him last year and concluded he actually has Parkinson’s and not AZ. He also has the dementia that comes with mid to late stage Parkinson’s- and that is what can confuse doctors and lead them to misdiagnose as AZ.

We have a weekday routine going in our home with Dad: weekdays I get Dad ready and take him to the adult daycare center run by the Baptist church in town. He spends the day there interacting with others, receiving all sorts of therapy and then Jon picks him up after work in the evening. Some nights we all have dinner together and other nights Dad prefers to have dinner in his room. Eventually it rolls around to the time for Dad’s meds and bedtime and the day closes. The only kink in the routine to date is that last night Dad announced he does not want to go to the center anymore but wants to stay home alone or wants me to quit my job to stay home with him. Neither of which is possible of course. The center is doing a great job but Dad is just very stubborn and doesn’t like to interact with others.

Taking care of Dad is not like working for ARC where I was paid to be a caregiver. It’s not like taking care of a loved one who shows kindness and gratitude for my efforts. This is like taking care of a petulant bitter child and there is no compensation financially or emotionally for the work whatsoever. Whenever I get frustrated with Dad over his behavior (which can range from simple stubbornness to abject cruelty) or the difficulty in being a caregiver and want to wash my hands of the whole mess I try to lean on the scriptures that remind us it is an easy thing to love those who love us in return but that the heart of God is to love those who don’t return our affections or offer compensation.

I have shared with you in many past entries that I have long since wrestled with a stubborn selfish nature in myself that I despise.  I see clearly that the exercise in letting go of that is to build a habit of doing for others without any compensation. So in that aspect, this situation with my father is proving ground for spiritual growth. On the other hand I know my selfishness still lurks around the corner ready to consume me again so long as I indulge in self pity and misery. I feel, honestly, that I’ve gotten a good handle on self-pity and that and am able to endure the misery of loving my enemies (or at least my father) without feeling sorry for myself. The truth is that many have much more difficult problems and misery in life and so mine is nothing to pity myself over. What I still don’t have a handle on is enduring miserable situations sans compensation without actually feeling miserable. If I were a really good Christian I would be able to give selflessly with joy. I haven’t gotten to that point of spiritual development yet. I want to be a woman after God’s heart, I want to love others selflessly and unconditionally, but to be straight with you it stings to give with nothing in it “for me”. It hurts in my heart to deprive myself for another the way it hurts when you pine for someone or something you can’t have or when someone has said something crushing. It makes me want to cry and I have to repress the little tantrum I am screaming inside my head whenever I have to sacrifice for another.  Isn’t that terrible? It’s probably the biggest impediment in developing a selfless nature that I’ve come up against. When I put myself first or equal I feel a rush of pleasure from self-gratification but lots of guilt; when I put others first I know I am doing right but I feel misery in the denial of self-gratification. Does anyone else have this problem? I ask Jon (who I see give selflessly often) if it pains him to deny himself and he reports that it does not. I want to be like that. So although I am coming along slowly it’s clear I have a long road to go.

Wednesday, January 12, 2011

My Heart is an Arena


Optimism takes a quick rest, unaware that the timer has started.

Despair creeps up.

A direct blow to the face and the fight breaks out! Optimism is quick to the feet in response.

               "love your enemies"

                                    “to hell with them all"

"God is with us"

                                    “screw him too"

And so it continues. 

Scratched, cut and bruised, in a front row seat, I'm soon wounded in their crossfire.

I root for optimism.
Hope shows up late to the scene,
taking a seat next to me.

Misery and hate jeer from across the grass.

The score is tied at the half and nobody knows how this is going to go down.

Thursday, January 6, 2011

Collapsing Community

I am too tired to string my thoughts on this matter into coherent paragraphs; please forgive the series of standalone statements.

My mother has been the primary caregiver for my father over the past few years while his health as declined.

We knew that eventually Dad would need to transition to a nursing home but it was always just that- an “eventually” thing.

My parents are in the Medicaid gap. They make too much for medicaid qualification but not enough to pay the costs of long term care on their own.

My mother went into the ICU on Tues, near death, from a sugar overdose (blood sugar = 750. 750!), leaving my father helpless.

My mother will not be released for the hospital for several days and even when she is she can no longer care for Dad; she is too weak physically. He is incontinent, cannot bathe, dress, or feed himself any longer.

A home healthcare agency is providing 24x7 custodial support in the home for Dad and has been since Tues. At $18/hr.

My parents cash on hand to pay for this service will run out by Saturday.

I found two ways to qualify my father for Medicaid despite his income (1.Miller trust [google it] 2.VA has more generous Medicaid requirements if you know the right forms to fill out). However it takes 45 days to process the Medicaid eligibility.

During the 45 days of Medicaid processing there is no help available. From any corner. No federal, no state assistance. I called social services and the Medicaid lady said it’s my responsibility as the adult child to pay for it. I told her even on my income we can’t afford 24x7 care for more than a few days. Her answer (paraphrased): *shrug* dem der da breaks.  I called churches; multiple churches. Their answer: yeah, nothing we as a church can really do, did you try social services and the government? Really? REALLY? I always was told the church would be there as first line of defense in times of need. They have been before in easier ways; with rent money one month when we were poor; with food from the pantry when we were hungry. But taking care of the elderly: yeah, no. What is wrong with the church? Why the hell is the church turning people away and trying to shift responsibility to the government? Jesus, no wonder the democrats and socialists want the federal govt to make everyone contribute to the care of the poor and elderly: apparently left to their own devices the church will just sit on their damn hands while offering little more than a sympathetic ear. We tithe year after year after year to the church for God purposes; what they hell are they doing with the money if they can’t help the elderly? Are there no nurses in the church who can volunteer their time in shifts?  I am so angry. There is no one. No one. I talked with work today about a leave of absence if I have to take care of Dad, but given my income it would cost more than if we just went into debt to pay for this 24x7 care and in addition the nurses have told me it needs to be a qualified nurse with him, not just a family member.

We are facing deep debt if we have to pay an agency at $18/hr x 24hrsx45days. I have no idea what to do and I am lost. So lost. And my parents have driven the rest of my siblings away; they will not assist in any way.

What happened to community? What happened to the church? And what is to become of my republican limited govt philosophy when it’s put in the ring up in the real world against the very real chance of death and suffering without a massive federal government  to force people to help shoulder this burden?