RIP Dad

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.

Ramblings at 3 am

Another three in the morning, my heart, and head are having a battle. I know he needs the risperidone to stop these episodes; a term we use to describe combative behavior and hallucinations where he lays for hours singing to people that don’t exist instead of talking to them. Does that make me sound crazy? I refer to them as beings.  I am not sure how much longer I can do these long hours by myself.  My daughter helps during the day so I can grab an hour nap, but I fall deeply into a sleep that it becomes difficult to wake me.

I know his Aricept has come to its useful end, now it is just a pill in a cup. He has been blackballed out of nursing homes, which is not something I would consider however the respite care would have been nice right about now. It would have to be someone trained in Alzheimer's or I am afraid I would come home to him dirty and sitting in his chair alone. He fits no useful stage or guide. Simply end stage which could last a few months to a few years. He has been in this stage for over three years now. Progressively worse the past six months. He doesn’t know me, the house, nor does he believe he has grandchildren. Inappropriate behavior is making it difficult to take him to doctor appointments.

I have been researching this disease for years. I started working with the AHEAD program taking tests and answering questions for a year or more to determine my probability of having Alzheimer’s at any stage. We all start out in the first stage of Dementia/Alzheimer’s which are no real symptoms at all.  When you are finished, they give you no indication on your last report or tests. I received a letter in the mail to join a drug testing program, I guess I received my answer. I am very diligent to keep my mind active and use several programs such as luminosity, puzzle games, constant organization to keep my mind alert. This – don’t sign up for this program until the stressors of the disease you are dealing with are gone. Some of the tests require complete silence, focus without interruptions. I could not do this properly. My mind was on what he was doing while only a few feet from me. So, the validity while being a caregiver is very skeptical to say the least. Taking the tests at 3 am with little sleep is also a contributing factor of an epic fail. 

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.

Caregiver's Time

Hello! 

It appears these pages have been eaten by the web goblins, and I will be reporting while adding the stages. Currently, we are bouncing between late and end stage. I have some great tips as well as heartbreak to discuss. Please be patient I am attempting to update this page. We have had a loss since last I wrote, my dear Mother has passed through this world and for a year my mind was numb as I went through the motions not sure just how I was feeling if I was having feelings at all. Pretty much I stayed on autopilot as this became a drastic turning point in my father's condition. Stay tuned! 

I found my page !  

Love and Light
Miss B

Playing Catch Up

By now you already know the stages of ALZ, and how your loved one in teetering on one stage to the next.  Today I have had to accept the fact that ALZ medications attempt to stablize, but they do not stop progression.  The progression starts to become a bit much with an end in sight, but not one you would choose for them, nor for yourself.

Today I am just relating stories as it have become emotional for me. Let me set the scene. I am on the couch across from my father in his over stuffed leather chair while he is watching a show on TV. To me it is just background noise, his hearing becoming worse it is all the way to the hilt. Something funny came across even I smiled however I watched my father smile and attempt to clap his hands. I stared at him for several minutes as this is something he has done his entire life when laughing, don't ask why it just is what it is. He kept looking at his hands attempting to move them, but he could not figure out how to do it. Suddenly his focus was on his hands and not the TV, tears welled in my eyes although none fell I am stronger than that.

I got his attention,  "That was funny as all get out wasn't it daddy?" I began to slowly clap my hands so he could watch me. I noticed he began to mimic what I was doing his clap went from hesitant to a hearty laugh and again he was clapping hard yet tears were streaming down his face. We did not talk about it we moved on.  This is one moment in one day as I watch his fine motor skills deteriorate.

ALZ is an evil, stealing all your moments that you will never have leaving destruction in its wake.

And The Beat Goes On

The last week has been an eye opener, I slowly watched as he scanned through the guide on the TV, then decided to scan channels one by one. I said nothing. Then he asked my daughter to read something to him after looking at it for several minutes. I said nothing. Yesterday he make a comment that Mom was hiding out at her sister's house, this is a dreaded loaded response.

"Daddy, Mom passed away almost a year ago now." He was silent.
"Did you hear me?"
"Yes, but you are lying." He rubbed his chin and raised an eyebrow.
I gave him her obituary, he starred at it for several moments, "It's dark in here and I can't read it." I turned the lights on.
Again he handed it to my daughter to read, he spat, "Why didn't anyone tell me?"
"Daddy I did, you were here when it happened. She passed here at home."
An argument ensued and I removed myself from the situation.  Later returning to confront him about being able to read. He told me he could not read any longer and the words made no sense to him.

Keeping up with what he is losing is hard, people with ALZ can hide things very well, they think that no one will notice. No longer can you just hand him his meds to take. You must stand there and make sure just as you would with an obstinate child.  All the while making sure you don't treat them as a child. You don't discount the fabricated stories they tell, you do not correct them or you are in for a battle. I decided to say, "Well, I never knew that."

It is his world, your world and the two will never be the same again. Roll with it, yes you will anger, but temper that anger by removing yourself. It is hard, if someone tells you it is not they are flat out lying or their parent is not as far along as my father. Another problem is severe paranoia over their money,  I keep the checkbook handy to show him what is going on how his money is spent on his living expenses.  He is angry that bread is no longer a quarter, and pants are no longer two dollars.

Keep all your receipts for everything so that they have them, it is a comfort and I can't tell you why.  I have been called so many names I can't count them on one hand, screamed at, and made to feel as if I did not matter. Let it go, if you don't it will drive you insane, because in ten minutes he won't remember saying anything.

Another Endless Night

Sit back for a moment while I go get me some more coffee. I have been awake since 11 pm last night after coming off of a two day insomnia. Daughter is sick and so is her fiance, so it was my turn to pick up the slack. Hold on....okay here we go. Today I am sick, not sure if it is from running for two days, or I have managed to pick up their bug.

Dad has been in rare form, God I love him, but this is like having a child all over again. They don't tell you that, pretty much no one mentions that BIG fact. He throws tantrums out of the blue, forgets who you are and decides it is OK to talk to you however he chooses.

Here are some hints on how to handle that situation.

1. Disengage from the situation
2. Do not take it personal
3. It is the disease not them
4. Find him/her/yourself something else to do
5. It will be fleeting just give it fifteen minutes and it will pass

He is certain that Christmas is next week and I am too lazy to go buy some presents. I keep telling him that his birthday has not come yet, that is mid summer and when the leaves fall from the trees that is when I go shopping for the holiday. This is not going well insert giggle here.

I was on the phone from 2am to 3am trying to get him back to bed so he can get up this morning and take his medications. Once he is off schedule his symptoms become worse. The hopes that this will get better are gone, the medications do not seem like they are helping any longer. Although using the new depends pull up diapers are much more friendly for him.

He has many days he doesn't realize that Mom is not coming back. I have attempted to do her room several time, but even dusting sends him into a tizzy. I talked to his doctor and he told me to leave it alone until he was ready to handle it. As long as he can go in there and see her things it is a comfort and not to take that away. I have to admit I too find comfort, but also sadness. I will leave things as they are for now. I am just not so sure other people that may happen by the house is going to understand.

Life changes so quickly, and I find myself afraid to open his door in the morning, because I am not ready for the inevitable yet. I have not even grieved for Mom yet.