Hospitals

I last blogged on the plane as we were flying back to Oklahoma, where we faced an ongoing battle with Susan’s health and medical care. The details are mostly unimportant now, looking back. What is to be learned and gained from it all is that each of us must be proactive in our own health and health care and we (caregivers and parents) must be proactive on behalf of those we love and those who cannot fight for themselves.

What put Susan in the hospital is questionable, in my estimation. They attributed her original weakness and fever to a UTI (urinary tract infection). The truth is that she had already been on antibiotics for it for several days prior. Then, her new intravenous antibiotic caused a severe allergic reaction that overtook everything else. Kiara, Ted and Megan did a great job of following Susan’s care and corresponding with the doctors in our absence. They sat by her bedside, fed her, and kept everyone informed and updated.

After I arrived, a discussion with her hospital doctor clued me in that he was not a good listener. He arrogantly had preconceived ideas about Susan’s condition. He told me that she had another neurological disorder that would cause her to never walk again, but couldn’t be more specific when I pressed him. He would not consider physical therapy even though I assured him that she had been independent only a week earlier. He insisted on releasing her and (after learning she would not be put in a home) recommended a temporary facility where she could regain her strength before returning home.

Although I was opposed (at that point) to any talk of putting her in a permanent nursing facility, a temporary facility that would enable her to build enough strength to return safely home, was considerable; but not without my approval. So, Megan and I left the hospital and (without warning) drove to check out this place the doctor had chosen. I was appalled at the conditions and knew that NO MATTER WHAT-Susan would never be a patient there. I would rehab her myself, if necessary!

I made some calls to friends who had required similar rehab in the past. We made another unexpected visit to a facility they highly recommended. There, we found professionalism, cleanliness, courtesy, a homey atmosphere and a great rehab department. The following morning I made a call to my hospital contact person and put in our request. By the afternoon Susan had been accepted into the new facility and was on her way.

Jeff and I set up her room, tucked her weak self into her new bed and explained things to Susan in a way she might understand. We told her that this was a special place she was chosen to go to- just until she could walk again. We assured her that she would come back to our house when she was ready. She asked many questions and we answered. She was happy; so were we. I will admit that I worried all night about getting a call to pick up Susan because they don’t accept wanderers or combative patients. I was pretty sure she was still too weak to fall into those categories.

The next morning Megan and I headed for the rehab facility across town. I didn’t know what to expect since everything was new to us and to Susan. I hoped for the best. Of all the concerns I had had, I would have never guessed at what we did find! Susan was not in her room; she was in her chair at the end of the hall. A therapist walked us down toward her as she explained that Susan seemed to have a fever today and they had already put a call in to her doctor.

My first glimpse of Susan sounded the alarms! I leaned in toward her and touched her face, “Susan, Are you alright?” My reaction must have alerted the physical therapist that something was off, since she began explaining, “We weren’t sure what was normal for Susan since we don’t know her.” Susan’s entire body was rattling and her mouth was open with her upper teeth dropping up and down over and over as she shook. Her skin was an odd blotchy red and spreading. “Something is wrong with her. This is not normal for her!” I warned. More calls were made. Jeff arrived to a scurry of people making calls and checking on Susan, followed by an entourage of emergency responders in our faces asking questions as Susan grew worse and worse. By the time she was taken back to the hospital by ambulance, she was delirious and could not hold her head up.

They again tested her for a UTI- negative. Pneumonia was the diagnosis this time. She spent five more days in the hospital. She has now been home for two days. We chose hospital to home (rather then a rehab facility), since we had gotten her up ourselves and walked her down the hospital corridors. (We refused to believe she would never walk again!) Too bad we didn’t run into the first doctor, who could use a good lesson in listening skills.

Sugar and Spice

It appears that Susan may be having mini strokes that are causing her body to fail her in little ways, making things we all take for granted more difficult for her each day. In fact, she probably had another one this week, making coordination a daily task. It is difficult to watch and even a bit scary. This whole human frailty thing is evidenced right before our eyes. All is not lost though, to be sure. No, not here.

Susan clings to one thing that is so a part of her that I cannot imagine her ever loosing it. It is her fight! In fact, I think that fight feeds her energy force and twinkles back at the world through her eyes. Her adrenalin picks up speed and her face flashes with determination to dominate! To rule! To be the boss! Yesterday I was the springboard for her fight. As she bossed and pushed and argued every step of the way, I caught flashbacks of her dealings with her husband long ago. They co-dependently seemed to thrive on that kind of drama during their last few years together. But not me; I want none of it. That pumped up spirit only drains my life force; I thrive on gentler energies.

So basically she had a great day that wore me out physically and emotionally. Maybe it was the early apponintment time that we were trying to meet that I can blame for the whole day. Nevertheless, I had no choice in the early time of her hospital appointment. It was scheduled by Susan’s doctor and I was only notified as to when they would fit her in for the MRI scan. If she didn’t need the scan, I might have cancelled the whole thing. I certainly entertained the thought when Susan refused to put on the clothes I had laid out for her. She wanted her coffee first. I knew that she had neither concept of time nor the understanding of the importance of getting to an appointment on time. Driving all the way across the city only to be turned away because of tardiness was not something I wanted to do.

Susan didn’t care, she only wanted coffee. “The stupid shit doctor shouldn’t make my appointment this early. Tell them I will make it later on when I feel like it.” I knew better than to let her come to the breakfast table before she dressed, otherwise she would want to sit and chat and look into the back yard and refuse to hurry. She defiantly made attempt after attempt to sneak into the kitchen to get coffee. All she needed to do was slip on the outfit I had matched up for her. Over and over I gave her clear instructions as she yelled back into the otherwise sleepy house, “Just bring my coffee here! Bring it here!”

She wasn’t going to boss me, I determined. I wasn’t going to boss her, she determined. So she sat in front of her ornately engraved makeup vanity making her eyebrows darker and wider than I had ever seen them. Next, she rolled the ruby red lipstick over her lips and surrounding areas, managing to only dot her chin and teeth this time. Again, she emerged from her bedroom looking like Mademoiselle and acting like Cruella De Vil, “I will have my coffee NOW. I won’t get dressed until I have it.” That was when I made up my mind that if she had to go to the doctor in her nightgown I didn’t care. She was going and we would leave on time.

Eventually I resorted to dressing her myself. She ate her oatmeal and disinterestedly drank only a portion of her cup of coffee before we took off. Susan could hardly walk without falling and I held her hand and arm as we made our way into offices, down halls and eventually into the MRI room where I again undressed her and redressed her before the blood work and IV saga began. Her veins are harder to find these days and all the pricks and holes and collapsed veins began draining Susan of her fight. She lay weak in her chair waiting for the blood expert to make her attempt at pin-cushioning Susan’s arms and hands.

I have gotten too familiar with the stress and pain hospitals can bring to a family, and strangely perhaps, have developed my own sort of coping skills. They kicked in. I began joking with Susan as I held her arm and rubbed her shoulders. I knelt by her chair where we were face to face and tossed words her way to lighten her heart. Words to make us both forget our load. And I began to sing a melody that wouldn’t leave my mind as I looked at her for a response. I told her we must dance and sing as I hummed and moved some more. Not too soon, she was humming the tune as if she recognized it too. We kept on, the two of us alone in this cold sterile room-waiting- but finally in harmony. It took more coaxing than usual, but she began moving her shoulders...up and down… up and down…up and down. That was what I wanted, I needed, to know that she still could dance with me, that she still would. Now we are just waiting again, for results, for symptoms, for healing, for whatever comes next in this life of ours- hers- mine.

Headed Home From the Hospital

Susan is coming home from the hospital today. I am concerned and unsure about how she will take this transition. Ordinarily it might not present itself as a big deal, but this is for sure not ordinary- not this mother-in-law of mine who suffers from Alzheimer’s- nope, nothing ordinary about it. For Susan, thirteen days is a long time and a lot can be forgotten in that time. For you and me that is barely two weeks; but for her brain it is another time and place- another set of memories ago (likely forgotten ones).

It may seem odd to question: Will she remember her room? The house? Will she sleep tonight? Will she insist on going home (wherever in her brain that may be tonight)? Will she feel any sense of security and comfort at being in her bedroom and back in our home (and her home for the past year). In about an hour we will take her out of the hospital and begin the 23-mile ride home. Will she even know what is going on? I realize she will know something and feel something and desire something, but it will likely be based on inaccuracies. We shall see. I feel silly that I am apprehensive and a little nervous about bringing her home. Will I sleep tonight? Will she be nice and passive or will she be pushy and insistent? The answers to all of the uncertainties do matter to the rest of us living here.

It seems obvious to all of the doctors, nurses and social workers at the hospital that she should be in a long-term care facility. For me it seems obvious that we are getting closer to that decision, but I am not so sure that we are there yet. With all the new diagnosis’ these past few weeks (congestive heart failure, hardening of the arteries, full degenerative disk disease, shingles, drop foot …) along with all her past diagnosis’ I can’t help but fear that what we are witnessing respectfully is her descent. Others looking on see what is obvious, but perhaps to Jeff, to Katrina, to Kyle and to myself, it is hard to admit that she will not bounce back and regain her fight. I hear myself whisper inside my head, "But maybe she will; maybe she will.”