Apr 27 2014

Mr. Shock

Alone, What next?

Alone, What next?

As promised in my last post, Taking off the Cape, I will continue here to talk about some of my experiences just before or after my becoming an ordinary citizen again. It was very difficult to transition from the constant on the go and the multiple duties of being a caregiver to suddenly being alone. I remember some of the first 24 hours after Kat went beyond me. I was in shock after I said my good-bye to her as she laid too peacefully in the flat hospital bed. She did not reply to any of my words..except I thought one of the monitors still connected made a beep. I then walked out to the nurse and she gave her best effort to describe what to do next. I barely understood, fortunately, I already called Kat’s mother for help because I had no experience even though my own mother passed a little more than a year before. This is because I was not able to visit my mother to help her while taking care of Kat (see another post for that experience). I think the nurse had me fill out a couple of sheets of paperwork. I do remember asking her “was that all”? No fanfare, no witnesses, no administrators, no counselors, no one! I then took a copy of the paperwork, thanked the nurse, zipped my jacket (it was very cold for a November in Florida at about 4AM), and went home (I do not even remember getting into the car and driving).

I got back to my apartment and was greeted by Socks (my cat). Socks is a very smart, intuitive, and extremely sensitive cat (even the vet said that). He immediately rubbed my legs and scratched my shoes (which meant take those stupid things off, sit down and hold me).  So, here I was sitting in my office chair staring into space. I did not sleep at all the rest of the night (something I never did!). It was like a sudden crash! I was relieved of duty. I was now for the first time in more than 30 years all alone (Kat and I had our 25th anniversary only a few weeks before). I was very afraid of what I was going to do next! Although I did not tell Kat’s mother and cousin as they picked me up to take care of gathering Kat’s items from the rehab and making arrangements at the last-minute with the funeral home. I do not remember much of what happened except that I kept on saying to them that “I was sorry”. I have no idea why I said this so much. There was only two more vague memories that  I remember after all this which was getting into a small argument over the phone with my father and on a positive note, a friend that I was not expecting called and simply said you are not alone! That helped tremendously, nevertheless, I was still in shock, disbelief, and so began the process of my grief.

Mar 22 2014

Taking Off the Cape!

I did not realize it has been a very long time since I posted on this blog. Unfortunately, if you have been following my random tweets or other sites in my Prismhawk Network you may already know that my wife Kat passed away four months ago exactly today.

She did not die from Kidney disease (although it was a factor). While at rehab she had two very serious urinary tract infections which she never had in her entire life before. She went into the hospital in a confused state. I stood by her side while she screamed in pain. I was told she may get better one day so I worked to get her into a rehab hospital which aims at stronger recovery, sending the patient home quickly. However, while on the phone to an insurance agent she started yelling “ow” and she could not remember her birthday when the agent asked her. I knew that this was different than the usual and brought in the nurse. The nurse was reluctant to check her since it was only a hour before. She did anyway, Kat was bleeding! They after sometime took her to the ICU. After, several hours more the head nurse called me in and said she thinks Kat may recover but will never be able to overcome her pain or go home again to see her cat. The Nurse also said that she arranged for pain managers working in the Hosipice unit to come by in a few days. However, just before I was told to go home because of exhaustion Kat suddenly stood up and stared at me as I passed by. I stopped to see if she would say something but she just stared and said “Ow” several times. This is when I knew. It was a few hours when I got the call…

I have been grieving ever since! I did not realize when people say how difficult emotionally it is for them. Today, seemed tough for me. However, as my sister says it takes time to adjust. Some take longer than others. I  guess writing here and starting to continue the Prismhawk Network are good places to start. Sometimes I have to remember I been wearing the cape of the Heroic Care Giver for four years and six months of which were the most unbelievable of my life. So, maybe I should relax, be positive and take it within the pace that I can. Rembember four months vs four years, I still got some time to balance it out!

Now, although I have retired my superhero cape I will keep this blog going by posting when I can. What will I post? That is a good question. So far I have only a few ideas. I will try to post some of the memories that I did not express in the last month’s of Kat’s life. I also will try as best I could to explain this grieving period. I usual I just hope to educate as I have tried to do here all along. See I now I am Clark Kent! Please, check out my other sites and blogs. And I really like to get some of your comments.

Aug 15 2013

Rehab Update: Please, Spiral in Another Direction!

Kat is still on a downward spiral this week and I am starting to get worried again! First, I was told on Monday from the physical theripist that Kat has been very inconsistent in the last few weeks prompting the therpist to change Kat’s goal from walking to moving from one surface to another (from a bed to a wheelchair then to a sofa). As usual I attempted to understand the mystery of why Kat is being inconsistent. Could it be that Kat is just being stubborn? She so hates being pushed, preferring her own speed of action. Was she expecting the pampering that she had when she was in the hospital? Maybe? or Is it the fact that she hates the food at the rehabiliation center and refused to eat? I think partially it is all these but I noticed she is much more cooperative when she gets a good meal. Anyway, Tuesday was not much better, I got a call from the dialysis clinic that Kat’s kidney access (the point on which tubes filled with blood flows in and out of the body to a machine or in other words the horrible hemodialysis procedure!) was clogged up (for the third time since being in rehab). So, Kat had to go to the hospital to remove the junk in her pipes so to speak. Kat also had a higher than normal blood pressure and potassium levels (which is ok for PD patients but very dangerous for those using the dreaded hemodialysis). She was miserable and did not eat at all that day. Today, she went back to the dialysis clinic to complete her treatment but stayed at the clinic for about 5 hours (most hemodialysis treatments are on the average of 3-4 hours for three times a week). This concerns me and now I suspect that this type of dialysis is not only the cause of Kat’s dips in health and eating but also her inconsisent therepy and recovery. I made an appointment to discuss this with Kat’s kidney doctor next week. Maybe he can find a better solution (hint: get Kat back on peritoneal dialysis!) and prevent any further downward spiral. I surely would like to see my wife home sitting comfortably with her cat soon!

Aug 08 2013

Rehab Update: Dips and Drabs

It still feels like a roller coaster ride with Kat’s recovery. For example, on Sunday she was holding her own in conversations and her memory was very good. She remembered where she was, the date, and when she had physical therapy or was sent out for dialysis at the kidney clinic. Today, however, she was primarily bedridden (her aid said she was sick) and she could not remember any of the above! It was very frustrating especially when she did not remember the analogy that I thought would help her: thinking of therapy as a jet taking off the runway… lifting…, and lifting…until she is in flight (ready to walk out and go home). I did tell her speech therapist about this idea, however, the therapist explained to me that a person of normal mental and physical health may have this type of recovery but as we all know Kat is far from normal! So now I guess I have to change my analogy to prismatic waves (after all this is a Prismhawk blog) slowly raising despite any dips. It is too bad I was hoping for a much faster and consistent recovery especially because Kat feels like an infant (and they even have her wearing diapers that she despises with a passion). Also, at times I think they treat her like one.

I was also angry today because (after investigating) that Kat was indeed scheduled for physical therapy (which she has almost every morning now – we want her to get out of bed on her own without a lift and walk again) I find out that she became sick by the aids leaving her in the wheelchair for several hours. So by the time Kat was to go to physical therapy she was not only sick but in tremendous back pain. This is what I mean by how these rehabilitation facility personnel at times treat their guests (I heard worst stories about several other places as well). There seems to be a lack of communication (between nurses, aids, therapists, and administrators) respect ( the acknowledgement of each individual and their unique needs), and caring (just when a mutual understanding develops the rehab switches personnel). The last point is exactly what happened today! I came strolling in to visit and I was met by an aid that I never saw even in the building. The aid in her hurried manner mechanically (she did not even look up) pronounced that Kat was sick but could not tell me any details, in fact the aid gave me a drab or sad stare and ridiculously had to ask me about Kat’s condition! This is what I went through exactly a month ago (almost to the date and for almost three weeks) when Kat was transferred from the Kindred Hospital and was unknown to the center. Well, do not worry, I explained the situation (again!) to several administrators and supervisors. And yes, this is what I meant in my last post that heroic care givers (poetically) must fight this villainy (do not let your guard down) in order to remind those responsible to respect their clients (not as infants!) and pursue their duties as support specialists.

Jul 29 2013

A Road and the will to Recover

It is like following an old country road with its off and on unpaved ground. This is the road that Kat and myself has been on since one lone night in May. It is such a road that has made Kat’s recovery at times so very terrifying and serious but as I mentioned in my last post, way back in the middle of Kat’s major health crisis, Kat has an inner strength that surprises everyone (except her best friend). Although I have given Heroic Care Giver Update Alerts via Twitter when I found the strength (writing is one of my passions yet it takes a certain amount of energy that seemed to waver every time I had a chance to get to my keyboard), I realize that many who may have read my previous posts may not necessarily follow tweets. So I will do my best to summarize (I may go into more details in the weeks ahead).

It all started right after Kat and I went to a restaurant with family. Kat had a shrimp dinner (although her mental state did seem slightly impaired – just more of what I thought was the usual – see other posts and comments). We came home to get some house cleaning done (which I do every Sunday). Kat then went to bed early while I stayed up working at my computer. After an hour I was surprised by her voice screaming for help! I stayed with her all night (and practically ever since) while she heaved (she only occasionally vomited). I called the kidney nurse for advise because that seemed to be the only symptom and Kat refused to go to the emergency room. We all thought it she had food poisoning (which may still have been the case because we never found out the cause, only the symptoms). I even waited until Tuesday afternoon just after getting the scheduled PD supply delivery to finally take her to the emergency room. Ironically, the heaving had decreased yet she actually told me that her face was numb and that she had a terrible headache (that means she waited heroically or ridiculously after the delivery to speak up and confine with me). When we got to the emergency room the nurses did many tests. They all said that she must have peritonitis (an infection that can occur with someone that gets peritoneal dialysis) yet there was no symptoms (access site pain, cloudy waste fluid, fever, etc.). However, after requesting a cat scan, they found what I call (unusually unscientific of me) ‘the brain leak’. Kat took the news with her usual off the wall humor and although her blood pressure was elevated she seems less terrified than I was at that moment. Kat was then rushed to the ICU at a regional hospital. The next day she stopped communicating and he doctors went to work draining her. A few days later Kat made it though a very important test and I was told she be home that weekend. Bump One, the very next day, I start walking in to visit and was told she had a seizure. The next week she had an infection that lasted three weeks until they decided to remove her PD access. She then was transferred to an acute care facility for breathing and speech recovery (all she could do for several weeks was to use her finger to write invisibly on my hand). There the nurses told me she would stay for over a month, however, Kat made incredible improvement. Thank goodness she was finally aware and willing to communicate one day shy of a month. The next step in her road to recovery was a choice of rehab facility that medicare or some one gave me only two days to decide on. The choice was made and finally I thought I could start my own recovery of sorts yet it took my own will power this time for three more weeks to get Kat settled and on best road to recovery. This picture was taken the day before transferring to the rehabilitation center. More pictures and progress to follow …

Kat in recovery

Kat in recovery

May 16 2013

ICU Update: Inner Strength

Kat remains in the ICU which obviously is playing on my emotions this week. There are days were I am afraid of any little twitch or cough that she makes or an ICU alarm blasting from a monitor, or when the doctors disturb my sleep to ask me if a certain procedure they which to perform is acceptable. I also had feelings of guilt and asked myself what I did wrong in taking care of her (or what was the cause?). I also had to calm family nerves which I can only imply here (Sorry, I promised!). Anyway, as of today Kat continues to improve, however, she was more lethargic than yesterday. Her nurse put back the air mask just in case. She told me also that Kat has proven to have a sleeping/breathing disorder that I never knew she had although Kat always asked for her over the counter inhaler before she went to bed. So, Kat continues to follow her nurses instructions and has opened her eyes several times today. The surgeons did not have to do any more blood drains or breathing procedures, however she has a temporary feeding tube ironically attached to her stomach opposite her peritoneal exit site for kidney dialysis. And Yes, she is still getting kidney dialysis every night! Although the neurosurgeons were thinking that a direct line to her circulatory system would take out her toxins better. My guess is that her body is used to the more gentle approach that peritoneal provides. Hemodialysis or similar method is much more drastic, which would weaken all her other vital functions such as blood pressure. Again, I am not a doctor but I have learned so much in the last few years it almost feels that I should try for a degree. Yet, I was also pleased and agreed with her doctors at the ICU for taking the time to observe her recovery from comatose to awareness before once again sedating Kat for the full intense scan that was (mentioned for Wednesday) . It has been rescheduled for an unknown time tomorrow. The scan definitively exhibits how Kat’s brain is functioning and if more surgery is necessary. It also has the most risk but less than the first time she had it nine days ago. Also, as some of Kat’s friends have commented  Kat has surprising inner strength and willingness to live (although she would never admit it). Again, I will update via twitter and post on this blog if my emotions do not get in the way. I am sure Kat thanks you for your support!

May 12 2013

Alert: Serious Brain Event

Sorry, I have not been able to get to any of my blogs or to look at my business this week. Kat, is seriously ill and has been in the hospital since about Tuesday night. It was very traumatic and several times I wanted to at least twitter the situation but I somehow could not do it! I am not sure why, all I could think of is her, period. Strangely, it all started from her being nauseated from what we both thought was a food virus (it could still be the cause!). Anyway, after consulting her kidney nurse and Kat actually explaining to me that her left cheek was getting numb that was it. I called 911 and got her to the ER. However, at first they all thought that it was peritonitis which is a bacterial contamination related to her type of dialysis treatment. Being that I trained hard and had some experience I knew they had to be wrong. Granted I am not a doctor but she had absolutely none of the symptoms. She was then given a scan and it was discovered that she had a small bleed in the brain. She was then rushed to another hospital an hour away which has one of the best ICU’s for brain injury/strokes. Kat was calmer than all of us and responded well both physically and mentally. She was then given special CRT scan and the results were good. However, overnight her mental condition started to decease. She acted confused and keep asking to be lifted by her arms to get out of the bed. She also claimed to be thirsty (which I originally thought was because they drained too much during her dialysis). This reminded me of the time she had an infection and they gave her painkillers that caused hallucinatory side effects (see a previous post). So, I immediately told her nurse, however, it took more time to convince her. Nevertheless, Kat was scanned again, they did a quick surgery to relive brain pressure. Still, her mental abilities declined. This was then followed by another surgery very early in the morning on the next day. The doctors said that these surgeries went well, and a fairly healthy person may recover within a few days. Of course, there is the issue, Kat has kidney disease which slows down the immune system. Today, as I write this post she is still in the ICU. Her mental state is, according to the nurse, at a very low state but it has slightly improved over yesterday when i went to visited her. I will continue to keep all my viewers and friends informed. Please, be patient, thanks!

May 06 2013

The Eating Game!

BaffleKat has been a rather indecisive lately, especially when it comes to what she wants to eat. Let me explain, yesterday, we came back from picking up her phosphate binder medicine (too much phosphate can accumulate in the body, so this medicine gets rid of the excess). I knew I had lots of business activities to attend to with less time than usual for a Saturday. So, after setting Kat at the television set, I immediately asked her, the dreaded question! “What would you like to eat? I then waited for her to answer or at least tell me that she was not hungry or anything. No answer. Then she looks down and says “Do we have anymore Q-tips? I quickly replied, “Yes, but do you want to eat?”  Again, another minute passes, no answer. I then suggest choices going through our entire cupboard.No answer. I even look straight at her and ask if she was feeling alright. This she answers quickly, “Yes, but why do you ask?” What! I wonder what kind of game is she playing? Is it an attempt to anger me or make me appear foolish? I was ready to scream but I held back my emotions. Instead, I said “I will give you a half hour while I turn on the desktop and review some email. During that time I would like you to think on what you feel you can eat and then we will discuss, bye” And off to my home office I went. I did not look back for her answer, this time. An hour later (yes, I always had some trouble with time –  ‘the anti-time lord!’ ) I walk into the living-room to find Kat asleep. Waking her up, I sternly said “I am microwaving some left over hamburger for both of us. Her response: Good! The eating game was over yet she also did it  today while a waitress stood by and Kat’s cousin stared from across the table. It was weird for her cousin to see Kat like this, for the waitress it must have been awkward, but for me it was silly and embarrassing  And by the way, Kat’s cousin listed the choices (on the entire menu) this time (foolish!). I guess it is now going to be her new eating game!

Apr 29 2013

Thin and Crispy

So Tired This week I was weary and perhaps I lost a little weight as I ran around with Kat in the hot car and office to office doing all types of paperwork. First I had to get a update of Kat’s condition (kidney disease) signed and sent out for insurance purposes (Do they really think her condition would change short of a pill from Dr. McCoy or a new bionic kidney, oh right!). It was a crisp errand but my luck did not last. Then we had to renew both her state id and disability parking permit. We had to go to our county office three times to get the paperwork right. (One of those was to go back to Kat’s kidney doctor to have him sign the permit application). You will not believe how many forms of identification were needed and the wait for the clerk as she had to actually fax copies for state approval. Wow! I think we have our security priorities misaligned, don’t you? Anyway, we did what had to be done, she had much needed walking and exercise but then I bought Kat a pizza which is her new favorite food, lately. She seems to ask me about getting the thin and crispy everyday.

Apr 25 2013

The Sounds of the Machine

DSCF1404Kat was about to be hooked up and ready to be thrust-ed into a comfortable sleep. She was especially happy because this time she could go to bed at a decent time. It has been several nights on a steady incline of later and later hook up times on my part. I guess I was too involved with editing and uploading photos to even notice. So, I told Kat that tonight I would break a record. So, here it is with only a few seconds to go and suddenly the dialysis machine grinds. The motor then growls when it is usually silent. Kat then looked (as best she can) at me and smiled. I stared back at her and said “OK, Houston, we have a problem. I think that the launch will be delayed. Sorry, mission control has also just announced that no new records will be logged today” At least she went with the humor and just covered her head under her blankets. I then pressed a button to try and go back a step in the procedure when this time an alarm ( I hate alarms!)  goes off. Still, the machine grinds like a motorcycle in idle. Kat from under the covers says “call someone?” Well, sure I am a guy (right?), but anyway, she did not remember that we had an experience similar to this last year. It was simple, I just shut the machine off, turned it back on and it resets itself! I did wait for any peculiar sounds for a couple of minutes, replaced the previous fluid bags (and tubes), and began again. Lift off!

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