Location: Oregon, United States

Saturday, July 21, 2007


Paul's mom had her second intensive treatment for her brain tumor the week of July 9th. She was mostly paralyzed on her left side and confined to a wheelchair. She endured the treatment, but when it was time to be released from the hospital, the staff was concerned that she wouldn't be safe at home so we found a residence that specializes in rehab and hospice care that would take her until she could get strong enough to go home. She was admitted on a Friday. On the next Monday (was this just last Monday? It feels like weeks ago...) we found out that the Dr. would not approve her to go home unless it was as a hospice patient as he could no longer advocate for treatment. She is just too weak. Meanwhile the family is having a cow because A.) Anita only wants to go home, period, and B.) No one was doing any kind of physical therapy to get her stronger. In addition, the people at the residence kept thinking she was there for hospice. After thousands of minutes of phone calls and emails amongst the family and staff, we decided to approach Anita about going home under hospice care. This was a terrifying prospect - who wants t have this conversation? But Anita knew she was not well enough for further treatment and opted to go home under hospice care.

This meeting was on Thursday morning. I called the social worker at Abbott to tell her all had gone well and to have a mini-celebration because it had been so painful for the family and so much work to figure out what we needed to do and now that the decision was made, it felt like 500 pounds was lifted off our backs. I felt like cutting my hair, cleaning the house and planning a decent meal! Creativity abounds! The social worker celebrated with me for a minute and then raised a concern: because Anita will most likely need medications given to her to stop her seizures intermittently between scheduled doses, the law would require either a family member or RN on site in her home at all times as the disease progresses. It would be up to the Hospice Center in New Ulm to decide. Suddenly, I was exhausted again. We had just told Anita she could probably go home, which is the only thing in the world she wants right now, and we were being told that it may not be possible. I was so angry - why did they let us give her hope to go home if she wouldn't be able to anyway? After several more phone calls, it turns out that the nursing staff did try to prep us by explaining the cares that Anita would need and so on, but we naively went forward saying it would all work out. We actually considered going against Dr.'s orders and taking her home anyway, because that is where she wants to be.

So then the task became finding out what it would take to A.) Bring her home or B.) Find a place closer to New Ulm that could care for her. In addition, somehow we needed to find out what it is about home that Anita wants? Her pillow? The pictures of the family? The view? Closure? That way, if the answer did end up being "No, you can't come home" then at least we could bring some of home to her. The deeper I looked into it, the better the place where she is currently staying started to look. Home would require a family member or RN. We would be on our own to find an RN, not to mention that that person wouldn't necessarily be trained in end of life issues, even if we could find one. We could ask a family member to stay with her, but we already tried that once and it is way too intense. Not to mention the fact that Jill and Jon both faint at the sight of blood - not the best quality to have when you may need to think quickly in a medical situation. (But we love you guys!) Other facilities near New Ulm are not necessarily set up for end of life care, but for long term care - a very subtle but important difference.

But beneath the physical question of where to have Anita so that she can get the best care was always the question, "Are you sure she's going to keep getting worse? What if we lined up Physical Therapy? Couldn't the staff put her in the wheelchair for a while so she can sit up? Maybe she would be more alert if there was someone with her more often to stimulate conversation." Our brains were still in treatment mode, and we were stuck in the blame/anger stage of accepting the inevitable. In truth, Anita knows she is dying. She has told the staff several times. But when the family comes around, she says she plans to get stronger. So is she ambivalent or trying to protect us? Reality is that she NEEDS to sleep 18 hours a day just to have the strength to be awake for the other 6. Reality is that physical therapy would use up precious strength that she needs for other functions. Reality is that the reason the staff at the facility kept thinking she was there for hospice is because they deal with people every day that are in hospice and they had no evidence to convince them otherwise. It was us that needed convincing.

So we are exhausted. Going to the store at 11 p.m. for milk, talking on the phone and having another call beep in at the same time all day long, missing work, making really tough decisions, grappling with reality, crying in the car or randomly when people ask "How are you?"

So, how are we? We are grieving, but we are fine. Fine in the original sense of the word. This family is one amazing unit. We have given the staff and social workers an education, we are strong advocates for what we want, we communicate, work out problems, vent, and come up with a solution. We are fighters for those we love and we love one another fiercely. We learned this from Anita.


Blogger Rosie said...

What a wonderful family...
you touch all our hearts with your compassion and love.

3:33 AM  

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