Creutzfeldt-Jakob Disease, Dementia

Creutzfeldt-Jakob disease (CJD) is a very rare dementing disease first identified in the 1920s. Creutzfeldt-Jakob disease is believed to be caused by something called proteinaceous prions that can live in the body for years before any signs of the disease become obvious. CJD affects people between the ages of 50 and 70 years.

My grandmother has been diagnosed with CJD and it has progressed very rapidly. It has been a very difficult adventure for all of. Our adventure started on September first of this year, while setting up my son's 7th birthday party, my grandmother collapsed. When the ambulance arrived we insisted she go to the hospital and there they found that she had suffered a major heart attack and more than likely died on us at least once. She then underwent a very scary 5-valve transplant surgery. She passed away at least twice on the operating table and at least once while in ICU. She spent an very touch and go 3 weeks in the ICU unit of our hospital. It was during this process that we noticed some issues starting to arise. We noticed that she was hallucinating a lot, more than what was to be expected, and that her legs didn't move quite as well as could be expected. Upon voicing our concerns it was brought up that she had dementia. This not being our first dealings with the disease, we were scared to say the least. So she was released to a nursing home with faith that eventually they would get her walking.

I am not one to bad mouth our medical services, their jobs are ones that I personally could never do, but this process has brought about a lot of issues with our medical services. I will get into this later but I need to bring up some issues. They were doing intensive rehab with my grandma for about 3 weeks when they decided that she had plateaued. And much to our dismay they stopped the rehab. She has not been able to walk since before her surgery. She has since lost all use of her legs and right arm. This loss of use is not a physical loss it is a mental loss. She does not know how to get her legs to do what they should or her hand. Her auto responses to move these parts is completely lost. It's the sad reality of life I suppose but it is one that I am not comfortable with. I can't shake the feeling that they stopped the rehab too early, they didn't give her enough time to work it out. And then I figured it out. Grandma's medicaid had not started and rehab is $100 daily and being normal people with normal jobs this wasn't exactly doable, so they stopped it!

Last weekend we received a phone call at 8:00am that Grandma had had seizure in the shower and that they were taking her to the hospital. So upon entering the hospital it became very obvious what had happened. She had a urinary tract infection that was not being taken care of properly. The issue with dementia is that every little thing that takes them out of their routine will take them a little bit further down. Well she dropped quickly. This is where my complaints of the medical services start! So those of you that are nurses please understand that it is not the entire the medical community that has me upset just the ones taking care of my grandmother. She has had some wonderful nurses we felt very secure in leaving her with and some that it took everything in us not to choke them on the spot. My main complaint has been the complete lack of general hygiene. Our family has spent countless hours at the hospital by her bedside. Daily when we walk in the floor in general smells of urine or feces. The floor is sticky when you walk on it. Her room has several times been absolutely disgusting with bloody gauze and needles littering the floor. I don't even want to tell you the times that we have walked in to find my grandmother sitting helplessly in a bed soaked with urine. She also cannot feed herself and instead of feeding her they cut her food and left it there in front of her. We found pieces of food laying in the urine at her side where she had obviously not been able to get the food to her mouth. Her glasses got broken somehow but no one seems to have an answer as to how the occurred. It is so disturbing to have to even go and see her because of her deterioration but to have this issue compounded is just terrible. We also cannot get a decent response from the medical staff. Her nurses seem to be disturbed and bothered to answer a general question. They huff and puff when we ask them to please change her urine soaked sheets. It is just horrible. I don't know how as a human being you could see that situation and not do anything! We went in last weekend to find her roommate sitting on the toilet where she had defecated and grandma again sitting in her own urine. The roommate had been on that toilet for 1 full hour alone. Her nurse, when we asked her why, simply rolled her eyes and walked away from us. We have complained several times to the patient advocate and things may get better that day but it is definitely back to the filth and disgust within a day or so.

Basically Grandma lapsed into a drug induced coma on Saturday. Now my complaint here is simple. Grandma was obviously not able to get any nutrients by mouth but they never hooked her up to an IV to take care of it. So my grandma laid there for 48 hours being pumped full of meds with no nutrients going in her body at all. Well needless to say, she woke up this morning dehydrated and starving. I am sorry but I really feel like our medical personal has failed us this time and am seriously considering seeking legal assistance. Hopefully she will be released back to the nursing home soon where we can at least trust they will change her often and keep her clean and fed.

I know it has been a long time since I have written and wanted to at least touch base with you all to let you know what is going on. I wish I had some poetic highly philosophical thing to say but I am exhausted and cannot think any further. I keep praying to god to just take her. I know it sounds horribly but this is torture. How long can we see her suffer? It has made me rethink my stance on quite a few issues. This slow suffering is just too much. The indignity of it all is horrendous. Why can she not just die peacefully in her sleep so that she no longer has to suffer. Sitting in her own urine and not being able to feed herself, how are we supposed to watch this? How are we supposed to have faith when we watch such things? I don't understand my own beliefs anymore. I don't understand my god right now. I want to say that I believe it is all happening for a reason but truthfully I don't understand. I don't see his lesson and I hate that I can't save her. I can't stop the horrible things that happen. I can't watch anymore of it but I can't walk away either. I hate the morning light because my tears are then visible. I hate that Christmas is coming and I cannot enjoy it. I cannot find the miracle of the season and I hate that. I am mourning her so badly. Her cookies and laughter. I miss her lessons and words of encouragement. I cannot find the heart to repeat her words to myself, they hurt too bad to remember. I know that death is just part of living but why does it have to be drawn out so long. Why does it have to be so undignified? Why does it have to steal away every last bit of pride that she has? I guess for me I don't understand the whole situation and feel like there is so much faith required that I just don't know if I have it left in me. To see someone so strong independent brought to this states is hell!