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.
Friday, July 24, 2009
Monday, July 13, 2009
Medical Facilities and Alzheimer's
Why is there not more understanding or allowance for Alzheimer’s patients (and those with similar maladies) at hospitals and other medical facilities? With the increase of Alzheimer’s on the rise surely this whole situation will be forced to change. This issue presented itself to me during Susan’s recent stay at the hospital.
My first impression of Susan's ward was an impatient nurse screeching at an elderly woman who (how dare she) was too old or forgetful to make this nurse’s job easy. Witnessing that set off alarm bells in my better thinking: would anyone be patient with Susan? Would she be treated as this other precious lady were being treated? I feared so. The next night I listened to this same nurse throw irritating comments my way about how Susan was up all night getting out of bed and securing the hospital doors and windows and how this particular nurse was forced to set up camp directly outside of Susan’s room door to keep an eye on her. (Snicker-Snicker)
Okay, so I admit that I didn’t have a lot of sympathy although I certainly understood where she was coming from. After all, I have practically spent the past year watching and guarding and herding Susan into the right places and activities at all the right times, regardless of what I would rather have been doing or often needed to be getting done. So yes, I understood her dilemma, but did she understand Susan’s? Susan was not her only patient just as she is not the only person in my life. But Susan has Alzheimer’s and the nurse should have training.
Next, came the dreaded annoyance of things Susan didn’t understand, like: tubes, machines, hook-ups and needles. She spent hours complaining about them and pulling at such things as heart monitors, intravenous lines and oxygen tubes until eventually she had loosened off and unhooked anything she could. No matter how hard I (or hospital staff) tried to explain their importance, Susan only cared that she didn’t want them hooked up to her self. Needless to say, she finally had every last one of them where she wanted them- out of her business!
Susan sat snugly pleased while alarms sounded and staff came to check to see what she had done -this time. Amazingly enough, all of this was done while she wore a posey (a restraining vest that keeps her from getting out of bed). Without the posey she would have likely been lost in the hospital somewhere or perhaps even in the parking lot looking for her car. So what is a hospital to do? And what are Alzheimer’s folks to do?
There is inevitably a moment in each hospital stay when Susan's antics climax. It is the moment I have come to expect, but will never stop dreading. Last time, it was the night she ripped her intravenous lines out of her arm and broke her security bed all in the same night. Kiara and I arrived early the next morning only to discovered blood all over Susan’s gown as she sat poseyed in a chair while a repair man worked frantically on her bed.
We learned of her antics this time by a nighttime phone call placed by the on duty nurse at Susan’s ward. She calmly asked us to return her call, stated that things were fine but she just wanted to update us. Trust me, we know that code and can read between the lines. Jeff called her back as soon as we heard the message and learned the latest. This time Susan had gotten hold of a pair of scissors and cut her catheter!
The day before this “cutting loose,” I had spent the day with her in the hospital room while she drove me away because of her obsession with getting that “stupid shit thing” out of her. After all, the doctor had not ordered it (no matter what I said). It didn’t belong and she didn’t need it. Actually they had ordered it in the emergency room the first night and left it in because they didn’t want her getting up and risking another fall.
Well, after the call that night from the nurse, who admitted that they had all been shaken up when they discovered what she had done, I noticed that a catheter no longer burdened Susan. Either the staff didn’t want to risk what might happen if they reinserted the dreaded catheter or Susan’s ‘discontinuance’ of its use had made that decision for them. Whatever the case- Susan got her way- no more catheters for her.
Sadly, when it was time for Susan to be released and the doctor felt that she needed a short stay in a rehab unit to build walking strength, nobody would accept her. No facilities to handle walkers? No rehab for extreme Alzheimer’s patients? I hope that none of these precious human beings are ever in accidents since everyone is afraid of them and afraid of lawsuits regarding them. One facility that was brave enough to evaluate her said there are strict laws against restraints’. We certainly would have a lawsuit if we restrained her at home as well, but we manage. And now she is home again, weak, limping and one foot dragging. No rehab for Susan- she has Alzheimer’s.
My first impression of Susan's ward was an impatient nurse screeching at an elderly woman who (how dare she) was too old or forgetful to make this nurse’s job easy. Witnessing that set off alarm bells in my better thinking: would anyone be patient with Susan? Would she be treated as this other precious lady were being treated? I feared so. The next night I listened to this same nurse throw irritating comments my way about how Susan was up all night getting out of bed and securing the hospital doors and windows and how this particular nurse was forced to set up camp directly outside of Susan’s room door to keep an eye on her. (Snicker-Snicker)
Okay, so I admit that I didn’t have a lot of sympathy although I certainly understood where she was coming from. After all, I have practically spent the past year watching and guarding and herding Susan into the right places and activities at all the right times, regardless of what I would rather have been doing or often needed to be getting done. So yes, I understood her dilemma, but did she understand Susan’s? Susan was not her only patient just as she is not the only person in my life. But Susan has Alzheimer’s and the nurse should have training.
Next, came the dreaded annoyance of things Susan didn’t understand, like: tubes, machines, hook-ups and needles. She spent hours complaining about them and pulling at such things as heart monitors, intravenous lines and oxygen tubes until eventually she had loosened off and unhooked anything she could. No matter how hard I (or hospital staff) tried to explain their importance, Susan only cared that she didn’t want them hooked up to her self. Needless to say, she finally had every last one of them where she wanted them- out of her business!
Susan sat snugly pleased while alarms sounded and staff came to check to see what she had done -this time. Amazingly enough, all of this was done while she wore a posey (a restraining vest that keeps her from getting out of bed). Without the posey she would have likely been lost in the hospital somewhere or perhaps even in the parking lot looking for her car. So what is a hospital to do? And what are Alzheimer’s folks to do?
There is inevitably a moment in each hospital stay when Susan's antics climax. It is the moment I have come to expect, but will never stop dreading. Last time, it was the night she ripped her intravenous lines out of her arm and broke her security bed all in the same night. Kiara and I arrived early the next morning only to discovered blood all over Susan’s gown as she sat poseyed in a chair while a repair man worked frantically on her bed.
We learned of her antics this time by a nighttime phone call placed by the on duty nurse at Susan’s ward. She calmly asked us to return her call, stated that things were fine but she just wanted to update us. Trust me, we know that code and can read between the lines. Jeff called her back as soon as we heard the message and learned the latest. This time Susan had gotten hold of a pair of scissors and cut her catheter!
The day before this “cutting loose,” I had spent the day with her in the hospital room while she drove me away because of her obsession with getting that “stupid shit thing” out of her. After all, the doctor had not ordered it (no matter what I said). It didn’t belong and she didn’t need it. Actually they had ordered it in the emergency room the first night and left it in because they didn’t want her getting up and risking another fall.
Well, after the call that night from the nurse, who admitted that they had all been shaken up when they discovered what she had done, I noticed that a catheter no longer burdened Susan. Either the staff didn’t want to risk what might happen if they reinserted the dreaded catheter or Susan’s ‘discontinuance’ of its use had made that decision for them. Whatever the case- Susan got her way- no more catheters for her.
Sadly, when it was time for Susan to be released and the doctor felt that she needed a short stay in a rehab unit to build walking strength, nobody would accept her. No facilities to handle walkers? No rehab for extreme Alzheimer’s patients? I hope that none of these precious human beings are ever in accidents since everyone is afraid of them and afraid of lawsuits regarding them. One facility that was brave enough to evaluate her said there are strict laws against restraints’. We certainly would have a lawsuit if we restrained her at home as well, but we manage. And now she is home again, weak, limping and one foot dragging. No rehab for Susan- she has Alzheimer’s.
Saturday, July 11, 2009
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.”
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.”
Saturday, July 4, 2009
Hospital Stay
Just as I feared, I am spending this week at the hospital with Susan. We found her on the floor Sunday afternoon beside her bed, awake but unable to get up. It seems that she may have had another seizure. Upon finding her, we questioned her and checked her over before deciding that she should go into the kitchen to eat. It didn’t take long to notice that things weren’t right with her: she wouldn’t sit up straight in the chair, she leaned back as if she were reclining, ate slowly and made a mess. I ran through the gamut of tests that had become common last week. Move your arm- leg- mouth, smile, wave. She did it all.
What I found odd was her lean toward the right- her head, her waist; her legs all favored the right. She was sweet and sat in the chair eating and enjoying the view out the window. She could walk, but slowly and unsteadily. The more we watched her the more we realized this could not wait until Monday, she needed to be seen now. That is how we ended up at the emergency room on Sunday and how Susan eventually ended up being admitted into the hospital and how I ended up here for hours each day and again each evening. Deja’ Vu. Didn’t I do this about a year ago? Same hospital- same hallway- different date.
Susan is not nice today. I don’t believe anyone has given her her meds. Makes me just want to leave her mean bossy self here at the hospital and go about enjoying my day. But here I am waiting to talk to the doctors so I will know what is going on with her. Hospitals- the doctors come when they can and if I don’t happen to be here right when they are, I will miss my only chance to speak with them. And since Susan obviously won’t understand- let alone remember a thing they say, I need to be there. And prying info from the nurses seems to annoy them, as if they have some other reason for being here and my questions interfere with all that. I know, I know, they are overworked and so on- two views from different angles and such. For sure. But this is my view.
What I found odd was her lean toward the right- her head, her waist; her legs all favored the right. She was sweet and sat in the chair eating and enjoying the view out the window. She could walk, but slowly and unsteadily. The more we watched her the more we realized this could not wait until Monday, she needed to be seen now. That is how we ended up at the emergency room on Sunday and how Susan eventually ended up being admitted into the hospital and how I ended up here for hours each day and again each evening. Deja’ Vu. Didn’t I do this about a year ago? Same hospital- same hallway- different date.
Susan is not nice today. I don’t believe anyone has given her her meds. Makes me just want to leave her mean bossy self here at the hospital and go about enjoying my day. But here I am waiting to talk to the doctors so I will know what is going on with her. Hospitals- the doctors come when they can and if I don’t happen to be here right when they are, I will miss my only chance to speak with them. And since Susan obviously won’t understand- let alone remember a thing they say, I need to be there. And prying info from the nurses seems to annoy them, as if they have some other reason for being here and my questions interfere with all that. I know, I know, they are overworked and so on- two views from different angles and such. For sure. But this is my view.
Subscribe to:
Posts (Atom)
