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.

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.

Another Day Repeated

I know how you feel, and I feel for you the angst, constant questions that are never answered so that your loved one can understand and exasperation begins to set in. Take a deep breath, realize this is not  your loved one , this is his/her disease and it is not going anywhere, it is not going to get better, however it will get worse. ALZ is not your friend, it takes away all that you once knew leaving an empty hole.

Just another day in the life of ALZ. I will write more, I had planned on it, but my mother his primary caregiver passed away and I have been working on non stop days where there is no time to sit and write. I will promise to write more later.

One escape when I get an alone minute