Thursday, April 22, 2010

The Journey Past Judgment

I used to think that people who put their elderly parents or severely disabled loved ones in nursing homes were quite simply ... heartless. In fact, the first time that I walked into a nursing home facility and saw elderly people sitting around like zombies, some in restraints, some in soiled clothes and some looking like they would welcome death, I promised myself that I would NEVER place a parent of mine in one of those horrible places. I thought, how could anyone who loved their parents leave them in one of those God forsaken places. Worse yet, only visit their parent on holidays.

I was a teenager then.
"Do not judge, or you too will be judged.
For in the same way you judge others, you will be judged,
and with the measure you use, it will be measured to you.”
-- Matthew 7:1-3

Over the years I've had numerous occasions to visit hospice, rehabilitation and long-term care facilities. Some were hell-holes, others were pretty nice, and others even reminded me of college dorms. But all it would take was for me to make eye contact with one sad, lonely resident and it strengthened my teenage resolve. No nursing home for my parents. After all, the Bible tells us to honor our mother and father. So, throughout my wild 20s, my mild 30s, & my mid-life crisis 40s, I repeatedly promised my mother that I would do everything that I could to make sure that she remained in her home for the rest of her life. 

But as I’m learning, life has a way of totally ignoring the vows of our youth and the promises of adulthood. 

This past Monday my mother fell down ... AGAIN. The respite caregiver was trying to walk her to the bathroom even though she was obviously short of breath due to asthma and seasonal allergies. It's unclear exactly how the fall occurred and, in truth, it really doesn't matter. These days Mom is unable to get back on her feet after falling due to NPH, (normal pressure hydrocephalus) aka fluid on the brain.  And after years of taking Prednisone for her asthma, her weight makes it impossible for even the strongest individual to assist her in getting back on her feet alone. So once again the police had to be summoned. This would be the 5th 911 call in two months or is it the sixth. I am beginning to lose track.

The caregiver did seem noticeably shaken by Mom's fall. Maybe now she'll understand what I've been trying to explain. Mom’s condition is complicated. Maybe this answers the question that she asked me on the first day, “So, are you working from home, or what?”

So this is what elder caregivers go through. 

Wednesday, one of Mom's visiting nurses came out. It seemed that during her visit she spent more time asking questions about my efforts to sell our house than she did about my Mom's health. Don't get me wrong the visiting nurses are all wonderful, caring people. But friends, I wasn't really in the mood for a lot of advice on what I need to do in order to sell our home. Selling your home of 39 years is more than a business transaction, it's an emotional transit. 

Did I need to be told how hard that this is going to be to do by myself? I don't think so. I’ve had a few years to mull this over. 

And between you and I, the lecture on the importance of relationships and how I have to ask for help, as well as the probing into why I have no relationship with the only "family member" who is living in the city were, let's just say, pretty annoying. I know that the nurse meant well but the one hour, Dr. Phil style psychoanalysis was not welcome. Ok call me an ungrateful shrew, I’ve heard it before. 

Friends, I've been asking for help with Mom for five years and the best I can get from the Visiting Nurses Assn. is six weeks of physical therapy, a nurse that  pops in to take her vital signs and someone to make Mom's bed and give her a bath two days a week. At least that's two hours a week. I should be grateful, I know. I've also contacted Philadelphia Corporation for Aging, twice, and was told that we don't financially qualify for assistance. At the repeated, and I mean repeated, insistence by a family friend that Pennsylvania offered financial assistance for caregivers, I even filled out an online application ( 22 pgs when printed out, which I did for my records)  that asked everything except who was the first person that I slept with. I guess I shouldn’t bring that up, they may add the question. Of course, we qualified for nothing.

A few friends stop in from time to time but most are clearly uncomfortable with Mom's condition. And as for that "family member" in the city who, as the story as been told to me, allowed my mother to fall and bang her head on a concrete sidewalk then failed to get my mother immediate medical attention or advise me of the incident, and who hasn't called in over a year, well ... God is still working on me in that area. I am a Christian who makes no claims to perfection. I'll leave it at that. 

This is a story about getting over a judgmental attitude. It’s a journey.

"Why do you look at the speck of sawdust in your brother's eye and pay no attention to the plank in your own eye? How can you say to your brother, 'Let me take the speck out of your eye,' when all the time there is a plank in your own eye? You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother's eye. “
-Matthew 7:3-5

I guess that now would be a good time to explain a little about NPH (normal pressure hydrocephalus).

It is not totally clear what causes NPH but it frequently appears in the elderly and/or persons who have suffered head trauma. In my Mom's case, it is believed that her condition was brought on after the previously mentioned fall. Unfortunately, Mom did not receive medical attention immediately and also refused to seek treatment once I learned about the accident the next day. My failure to force her to seek medical attention continues to haunt me. So who am I to judge, heh?

The following link provides a great overview on the topic of NPH

As the article states:

"The dementia symptoms of NPH can be similar to those of Alzheimer disease. The walking problems are similar to those of Parkinson disease. Experts believe that many cases of NPH are misdiagnosed as one of these diseases. The good news is that, unlike Alzheimer disease and Parkinson disease, NPH can be reversed in many people with appropriate treatment. But first it must be correctly diagnosed."

In recent years the medical community has recognized just how frequently persons suffering from NPH have been misdiagnosed. In fact, the condition was given even greater exposure when it was the featured topic in an episode of Grey's Anatomy

It was not until 2005 when all three of NPH’s symptoms were glaringly apparent in Mom that she was referred to a neurologist who identified her condition. By then Mom was taking a laundry list of medications including: advair, singulair, aricept, detrol, cartia and about a half dozen others. I learned a lot about the infamous Medicare donut hole that year. It’s not a donut hole, it’s a pit. Mom fell in that pit around June of 2005 which means that she paid full price for her meds the rest of that year. And again in 2006 and 2007.

Once Mom's NPH was diagnosed she had concerns about the risks involved in brain surgery. So given her age, the asthma and respecting her wishes, I was not insistent that she have the surgery. A decision that I now truly regret.
This is a story about getting over a judgmental attitude. Somewhere along the line I hope that I’ll be able to judge myself less harshly.

During the early years of Mom’s NPH, I was blessed to be able to work at home and was able to juggle managing the household, Mom’s health issues and my career. But that was all smoke and mirrors. As Mom’s condition progressed, the falls became more frequent and she began having episodes that resembled mini-strokes. Envision an elderly asthmatic who suddenly just gives out while walking across her living room or trying to climb a flight of stairs. At the same time that my Mom began requiring more attention, my employer's productivity demands increased. Something had to give. And for a while it was my health, then it was my career.

After much prayer and fasting, I left my job, cashed out my 401K and became my mother’s full time caregiver. I thought that I could preserve my health and provide my mother with the care and dignity that she deserves. I thought that I could make a go of a consulting business and later, tried my hand at organic gardening. The later was much to the dismay of my neighbors, I’m sure. I thought that I could keep that vow to NEVER put a parent of mine in a nursing home.

That’s what I thought.

Now we’re selling our home in order to find a safer environment for Mom, afford respite care and minimize our expenses. I’m still trying not to put Mom in a nursing home.

Yesterday, I asked Mom to sit still for a few minutes while I ran downstairs to put a load of clothes in the dryer and another in the washer. I was probably in the laundry room for 10-15 minutes. On the way back up the two flights of stairs that I run up and down at least 10 times a day I thought I heard a creek in the floorboards on the second floor. Sure enough Mom had gotten up from her chair, walked past her walker as well as the commode which was right next to where she had been sitting, and tried to walk to the bathroom alone. By the time that I reached the second floor landing Mom was standing in the hallway holding on for dear life to the linen closet doorknob and the door frame of an adjacent bedroom. Luckily, she did not fall, this time. I'm sure that the police have better things to do.

Over the past five years I have developed a tremendous compassion and understanding for people who have struggled with the difficult decision of trying to provide the best care for an aging parent or a disabled loved one. I’m realizing that those who have put their parents in nursing homes are not always heartless. In fact, some of them are probably the most loving caregivers of all. I also understand that some relatives simply can't bear to see their loved one in a home so they stay away.

I’m still holding on to hope that I can honor my vow to never put my mother in a nursing home. The days aren't all bad. But some decisions are made for us.

By the way, someone is coming to look at house today and it’s a wreck. Hopefully, they won’t judge me too harshly.

For more information about NPH go to: