I have not written in over a year. This journey has been a long heartache. Once you have thought you gained your footing the stumbling starts again. Pop passed four months ago. It was not an easy pass through this life, and this is not an easy post to write.
Throw out everything you think you know will happen. Throw out what they tell you will happen then strap yourself in and prepare. Being a retired nurse did help a lot, but if you are not bound with some medical knowledge you'll be torn, conflicted and mortified at what is going on. I am not one that would reach out for help my favorite saying was, "I got this" when in fact it had me.
After Christmas, I reached out for help for palliative care, which turned to hospice within a week. That was the part I was not prepared for. If you are not prepared for the inevitable I would not suggest that you take the last months at home. Again I am stubborn and would only call if I could not handle it. He disliked being touched by anyone other than family and I abided by that. He may not have known who we were, but constant bed changing, meds and dressing changes I was already used to doing when I was working. Ordering the hospital bed was a whole other story.
When the bed came there was an argument because I wanted it in the living room. I made room for it, no I was not putting him in his bedroom. I wanted him around friends and family with some loving voices and stimulation from music and TV.
I did, however, call what was going to happen. I tried to explain to my adult children that no he is not going to pass from Alzheimer's. That is not how this works. One of two things is of near 99 percent probability either a massive infection or pneumonia. He passed of an infection from a callous on his toe. No bedsores, no other skin breakdowns.
Within a month his mind was completely submerged in another world I could not see nor touch. He spoke in broken sentences and told me about his daughter. I am his daughter but recognition of that was gone. Ironic that moments early in the morning he would know me for a few moments then it was gone. I wrote an article that has been debated across the web for more than 15 years about "faint flicker response", a term we used back in the early 80's in nursing homes. His momentary recognition is what is a faint flicker response, my voice, his full night's sleep gave him a mere lucid moment and faded.
I slept on the couch in front of him, mid-February after two weeks of no communication other than a grunt or a groan I rolled him up to hear TV, his vision nearly gone. He had an extremely lucid moment. "Hey Sis", Yeah pop? "I could really go for a BMT from subway". Shoot I called up my daughter and she jetted to buy him one, it had been weeks fighting for him to take food. He ate a foot long loaded BMT! "Thank you, honey, damn that was good." Yes we were all so happy, maybe it was a minor set back...maybe....not.
Pop went to sleep soon after eating, I watched him closely to make sure he did not get sick. He was resting well then all hell broke loose. His breathing was terrible, his color was pasty so I rolled him back up hooked up the oxygen and tried to talk to him but no response.
The morning of February 28th, I was changing the bed and giving him a bed bath. He struggled to breathe and it was killing me inside. I sang to him, he grabbed my arm. His eyes clearer than I had seen them in years began to cry. I asked if he was in pain he shook his head no. I have been around enough death to know something was troubling his heart and he was ready to go, but holding on for something. I asked if it was family, the kids, a friend? He shook his head no then pointed and poked my arm. Me? Yes, he shook his head. No, pop no worries for me I am going to be just fine. Again he shook his head no. Yes Pop, I promise I am going to be fine. I know what he was worried about, and I understood. Like a daughter should I lie? I told him something false, comforting so he would be ok and not struggle any longer. I knew that night would be it.
I had been on night three with no sleep. I watched as the life faded, and called Hospice. By the time they arrived, he was gone. I spent those last moments singing and holding his hand. That's how this story ends.
No two people will go the same, but they all will have one worry, concern left before they go. I have heard a million time how strong I am. It is a lie, both my parents in three years in the same house, one unexpected and one expected, although it doesn't change the basic facts that on the outside you have to be the rock, someone HAS to be the rock while everyone else is falling apart. End of an era, end of a generation, and my family quickly dwindles away.
I sit here now, alone in the same house four short months later wondering what the hell do I do now? I have dedicated the last 17 years taking care of my parents. My children are grown and living their own lives. For the first time in forever, I wonder my purpose. Sleep is not a luxury I am afforded right now no matter how hard I try a couple hours if I am lucky. My mind won't shut off, I can't clean anymore or there will be no nap on the carpet or paint on the walls.
Don't be like me, talk to your doctor and let them know you are grieving, call a counselor, your clergy or friend to talk. You don't got this, it has you.
Showing posts with label faint flicker response. Show all posts
Showing posts with label faint flicker response. Show all posts
Saturday, August 4, 2018
Friday, January 27, 2017
The Year 2016
Wow, 2016 passed without a post. I can't even begin to explain all the changes in life that have taken place although I will attempt to do so and prepare others that may experience the same things in life. I know you exist out there I have run into a couple in email both male and females that stood up to the plate to care for a mother or father.
The only good that has come out of this year is my father can't remember that people have gone from his life, my life changed drastically, however, this was my choice, and sometimes shit just doesn't work out like you think it will. Others become so self-absorbed you can't handle it and they must be removed from your life. You deal with enough not to have a needy male that feels you care too much for your family, yet does not even take care of you. I could have gotten that mess over with fifteen years ago without breaking a sweat.
The stages of ALZ, throw everything you think you know out of the window. These are only guidelines, your loved one make flick in and out of the last three stages for a couple years. Do not look at the "approximate time limits", listen there is no expiration date on any one person's foot the are guestimates not set in stone. My father is in end stages, yet he is not bedridden because I do not allow it. Yes, you read right, stimulation is key, talking to an irrational disease in a rational matter won't work for any type of understanding yet it is stimulation. Yes, they will become frustrated and angry. Curse words seem to be the most remembered words they have. I get cussed out on a daily basis, but it is communication.
Falls, this is when they happen often. You can limit falls by limiting the amount of movement they need to do, or can still do and feel like part of the process. They will argue, fuss, cuss, rant, rave, hit, smack, spit, and maybe even throw poo at you, but they are active. Bedside commodes, depends pull up diapers, locked wheelchairs or scooters closer to the bed can help eliminate falls. Move all area rugs, handgrips in all your bathrooms, halls, but never near the bed or you will have some head injuries.. don't ask just believe me.
Not knowing who you are. This is a big one for me. He has no clue who I am. A year ago I moved in and redid his house. I tore out rugs that were a hazard, opened up the living room and kitchen. This way he has access to everything. He does not know how to use the stove, nor how to get the refrigerator open, but that is ok. I did, however, put a curtain up over the front door foyer so he did not leave. I checked all the doors that lead outside and he cannot get to them. One phone is always left dead (landline) and he keeps it by his chair. He is constantly wanting to call the police because we pet his dog, move his coffee cup, or cut his coffee intake off at 5 pm. I answer to whatever name he calls me except my mother's. He is sure is he only 35 and the Army will show up every day to take him to work. My father is 71 and has been out of the Army since 77.
Auditory hallucinations have now turned into visual hallucinations. If I bend down too quickly to give him his meds or take his glucose he will swing. I have learned to bob and weave yet sometimes I weave when I should have bobbed. I have been asked how I put up with it from family to doctors. Imagine if you will, waking up one morning and not recognizing anything around you, or the people around you. Some woman is telling you it is time for your medication, you don't know her. She tells you your clothes are on wrong yet you think they are right. The TV tuner resembles a telephone and vice versa you become frustrated. This woman tries to help, but you are far too angry by this time to care what she says and lash out. She tells you that you are related, but you don't believe it because you don't know her. She tells you she lives with you and you don't believe it. You ask for your wife and are told she passed away nearly 2 and a half years ago. This is news to you which angers you even more. You cannot remember where you live or what country you are in, your world is completely foreign to you. Now wake up and you are who you are right now, what I described is a daily occurrence after waking and each nap took. Now, if this were you would you want a family to try, or give up on you?
I don't judge those who can't do it, so don't judge those that struggle through it. I was given a medication to give him to stop the aggression. Side effects are stopping me, he has had two strokes and three heart attacks one of the possibilities is a stroke or heart attack. Yeah, I am not ready to allow that to happen. It is too close to my mother passing and purely a selfish reason to either give or not give the medication.
He needs all ADL's done for him, unsure of how to use even the bedside commode and may stand up and just cut loose. He has forgotten how to use a fork, very very awkward and will not eat if given one. A spoon is no longer held correctly more like that of a child first learning. I exercise his arm and leg to prevent contractures since there is massive muscle wasting.
The moods are much like living with Cybil, you never know who is going to wake up. Today he swore my mother ran off to Africa. Why he picked Africa I don't know, my mom was more of a Florida kind of lady. Joke Joke, you must put in some levity to survive. He sings most of what he has to say, something we started long ago when his memory failed the sing-song tone allows him to make sense although it doesn't to anyone but him.
Yes, I could stop pushing and allow him to do what he wants which is sleep all the time. Then you must deal with pressure sores and no I am not ready to do that either. The inappropriate talk will happen, just tell them it is inappropriate and yes there will be yelling it happens. It is not rosy, not pretty, not happy, and very lonely.
While he sleeps I clean, do the finances, check meds and supplies. If I did this while he was awake there would be more yelling and I can't handle any more yelling. Know your limitations as well as theirs. Sleep, well at this point it becomes a luxury, get it while you can even if it means you nap when they do. You are on their schedule. Sundowners is a real thing, work through it the best you can.
As you will see I am writing this at 3 am, I hope this is making some type of sense. My time on the computer is limited due to him having issues with it. He thinks there are little people in here talking about him when I type.
And lastly, years ago before he was diagnosed with ALZ I wrote a basic paper on "faint flicker response", explanation of this is a term used in the 80's at nursing homes during our documentation of awareness to alertness X3 (time, person, place) faint flicker response is giving the answer "I think I am at a home, is that right? I know I am in a bed and it is mine." That is a faint flicker response, the ability to faintly remember, but if asked again at the end and they do not remember it was "faint". That would be written in a nursing report at that period of time as - Patient is warm, dry, and hydrated. ADL's by the nurse (activities of daily living), Alert with faint flicker response. Output normal, intake - change needed. Please evaluate by the dietician as the patient is having choking issues during solid food intake possibly consider a soft diet.
I understand I am older and worked during a time many younger nurses or those that have never worked in an ALZ facility would recognize, so now those who look it up will find this page and quit busting my balls on the web about it. I feel I have earned my right to call myself damn near an expert at this point. 15 years of taking care of someone with this disease and nearing the end I am pretty sure I know what I am talking about.
The only good that has come out of this year is my father can't remember that people have gone from his life, my life changed drastically, however, this was my choice, and sometimes shit just doesn't work out like you think it will. Others become so self-absorbed you can't handle it and they must be removed from your life. You deal with enough not to have a needy male that feels you care too much for your family, yet does not even take care of you. I could have gotten that mess over with fifteen years ago without breaking a sweat.
The stages of ALZ, throw everything you think you know out of the window. These are only guidelines, your loved one make flick in and out of the last three stages for a couple years. Do not look at the "approximate time limits", listen there is no expiration date on any one person's foot the are guestimates not set in stone. My father is in end stages, yet he is not bedridden because I do not allow it. Yes, you read right, stimulation is key, talking to an irrational disease in a rational matter won't work for any type of understanding yet it is stimulation. Yes, they will become frustrated and angry. Curse words seem to be the most remembered words they have. I get cussed out on a daily basis, but it is communication.
Falls, this is when they happen often. You can limit falls by limiting the amount of movement they need to do, or can still do and feel like part of the process. They will argue, fuss, cuss, rant, rave, hit, smack, spit, and maybe even throw poo at you, but they are active. Bedside commodes, depends pull up diapers, locked wheelchairs or scooters closer to the bed can help eliminate falls. Move all area rugs, handgrips in all your bathrooms, halls, but never near the bed or you will have some head injuries.. don't ask just believe me.
Not knowing who you are. This is a big one for me. He has no clue who I am. A year ago I moved in and redid his house. I tore out rugs that were a hazard, opened up the living room and kitchen. This way he has access to everything. He does not know how to use the stove, nor how to get the refrigerator open, but that is ok. I did, however, put a curtain up over the front door foyer so he did not leave. I checked all the doors that lead outside and he cannot get to them. One phone is always left dead (landline) and he keeps it by his chair. He is constantly wanting to call the police because we pet his dog, move his coffee cup, or cut his coffee intake off at 5 pm. I answer to whatever name he calls me except my mother's. He is sure is he only 35 and the Army will show up every day to take him to work. My father is 71 and has been out of the Army since 77.
Auditory hallucinations have now turned into visual hallucinations. If I bend down too quickly to give him his meds or take his glucose he will swing. I have learned to bob and weave yet sometimes I weave when I should have bobbed. I have been asked how I put up with it from family to doctors. Imagine if you will, waking up one morning and not recognizing anything around you, or the people around you. Some woman is telling you it is time for your medication, you don't know her. She tells you your clothes are on wrong yet you think they are right. The TV tuner resembles a telephone and vice versa you become frustrated. This woman tries to help, but you are far too angry by this time to care what she says and lash out. She tells you that you are related, but you don't believe it because you don't know her. She tells you she lives with you and you don't believe it. You ask for your wife and are told she passed away nearly 2 and a half years ago. This is news to you which angers you even more. You cannot remember where you live or what country you are in, your world is completely foreign to you. Now wake up and you are who you are right now, what I described is a daily occurrence after waking and each nap took. Now, if this were you would you want a family to try, or give up on you?
I don't judge those who can't do it, so don't judge those that struggle through it. I was given a medication to give him to stop the aggression. Side effects are stopping me, he has had two strokes and three heart attacks one of the possibilities is a stroke or heart attack. Yeah, I am not ready to allow that to happen. It is too close to my mother passing and purely a selfish reason to either give or not give the medication.
He needs all ADL's done for him, unsure of how to use even the bedside commode and may stand up and just cut loose. He has forgotten how to use a fork, very very awkward and will not eat if given one. A spoon is no longer held correctly more like that of a child first learning. I exercise his arm and leg to prevent contractures since there is massive muscle wasting.
The moods are much like living with Cybil, you never know who is going to wake up. Today he swore my mother ran off to Africa. Why he picked Africa I don't know, my mom was more of a Florida kind of lady. Joke Joke, you must put in some levity to survive. He sings most of what he has to say, something we started long ago when his memory failed the sing-song tone allows him to make sense although it doesn't to anyone but him.
Yes, I could stop pushing and allow him to do what he wants which is sleep all the time. Then you must deal with pressure sores and no I am not ready to do that either. The inappropriate talk will happen, just tell them it is inappropriate and yes there will be yelling it happens. It is not rosy, not pretty, not happy, and very lonely.
While he sleeps I clean, do the finances, check meds and supplies. If I did this while he was awake there would be more yelling and I can't handle any more yelling. Know your limitations as well as theirs. Sleep, well at this point it becomes a luxury, get it while you can even if it means you nap when they do. You are on their schedule. Sundowners is a real thing, work through it the best you can.
As you will see I am writing this at 3 am, I hope this is making some type of sense. My time on the computer is limited due to him having issues with it. He thinks there are little people in here talking about him when I type.
And lastly, years ago before he was diagnosed with ALZ I wrote a basic paper on "faint flicker response", explanation of this is a term used in the 80's at nursing homes during our documentation of awareness to alertness X3 (time, person, place) faint flicker response is giving the answer "I think I am at a home, is that right? I know I am in a bed and it is mine." That is a faint flicker response, the ability to faintly remember, but if asked again at the end and they do not remember it was "faint". That would be written in a nursing report at that period of time as - Patient is warm, dry, and hydrated. ADL's by the nurse (activities of daily living), Alert with faint flicker response. Output normal, intake - change needed. Please evaluate by the dietician as the patient is having choking issues during solid food intake possibly consider a soft diet.
I understand I am older and worked during a time many younger nurses or those that have never worked in an ALZ facility would recognize, so now those who look it up will find this page and quit busting my balls on the web about it. I feel I have earned my right to call myself damn near an expert at this point. 15 years of taking care of someone with this disease and nearing the end I am pretty sure I know what I am talking about.
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