I Am Officially an Ambassador

I know it's been a while, but I have some exciting news! I am honored to have been chosen to be an Ostrich Purple Angel Ambassador. There are only 50 of us WORLDWIDE! We are a group committed to raising Dementia awareness. This movement was started by a friend I made through a Facebook Dementia support group. Norman MacNamara was diagnosed with Lewy Body Dementia at the age of 50. You can find more information on this disease at http://www.lbda.org/node/7

He is fighting back in the most admirable way possible. He is changing the way the world thinks about Dementia/Alzheimer's. The programs he has implemented in his community will save lives. Together, we hope to take these projects worldwide! Just as we are hoping that people will one day see the Purple Angel symbol and know what it means instantly!

This opportunity opens a whole new chapter in dealing with Dementia for me. I hope you will all stay with me on my continued journey because, "Together WE can make a difference!"

5 Things to NEVER Say to Someone With Alzheimer's

The following link gives some great advice that would be beneficial to any caregiver dealing with Alzheimer's/Dementia, as well as the person they are caring for...

http://www.huffingtonpost.com/marie-marley/5-things-to-never-say-to-a-person-with-alzheimers_b_3662958.html?utm_hp_ref=caregiving

Initiative Launched for Families of Alzheimer's Patients

A helpful bit of information for everyone...


Posted: Jan 22, 2013 11:20 AM CST
Updated: Jan 22, 2013 11:25 AM CST
By Dawn Alexander - email


© http://www.theiacp.org/alzheimers
GLENDALE, AZ (CBS5) -
When officers respond to a missing person's report, it is becoming too familiar that the missing person is suffering from Alzheimer's or dementia-related diseases, so the International Chiefs of Police have launched the IACP's Alzheimer's Initiative to help with awareness.

The initiative works to prepare family members of those who have Alzheimer's or dementia-type diseases in case they go missing.

The IACP Alzheimer's Initiative is for both officers and families or care takers that take care of someone suffering from Alzheimer's or dementia. Experts have said that 60 percent of people with Alzheimer's will wander, get lost, or go missing on more than one occasion and Glendale police want to be prepared to help.

The Glendale Police Department has put together a list for anyone who has a family member with Alzheimer's or dementia-type disease that will help them if they go missing. Officers ask that you have the following information available:

Recent photographs, preferably digital
Information on co-existing medical conditions and required medications
Always take note to what your loved one is wearing every day
What are their limitations physically and mentally?
Do they know their name, phone number and/or address?
Do they have a locative technology system or Medic-Alert type bracelet?
What is the person's general daily routine?
Where do they like to visit (their favorite places to go or favorite restaurant)?
Do they have a fear of crowds, strangers, etc.?
Have they gone missing before and where were they located?
For more information on the IACP's Alzheimer's Initiatives you can visit http://www.theiacp.org/alzheimers.

Copyright2013 CBS 5 (KPHO Broadcasting Corporation). All rights reserved.

Progress One Step At A Time

This a major step in bettering the care of patients with Alzheimer's and other forms of dementia! I wish this had gone through in time to help Dad. I am thankful for the many people who will be helped by this now. I believe there are entirely too many people who don't get proper medical care because of the inability to afford it. Follow the link below or copy and paste it. Either way, I hope you will read it.

If you missed the historic news, Medicare now reimburses for occupational, physical, and speech therapy services that maintain the current condition of a person with Alzheimer's disease, or that prevent or slow further deterioration. Read more:

http://ow.ly/eRhWy

I Had a Dad Like That

I found this while searching for something I misplaced.

November 9, 2012

November 11th, Veteran’s Day, would have been Dad’s 91st birthday. He was a veteran of WWII and the Korean War, a B-26 Martin Marauder pilot. In the latter years of his dementia, Dad talked of WWII frequently. The stories were comprised of confused details but the basics of the stories usually remained the same. I wish he were here today to tell those stories, confused or not.

It has been less than three weeks since he passed away. Dad’s wish was to be cremated and buried at the same time as Mom. We have both he and Mom in our bedroom… waiting. Next Saturday, we will lay their cremains to rest side-by-side for eternity. Maybe then it will all finally be real to me. I have felt as if I am under water, going through the motions of living while everything has been just a bit over my head. I do what needs doing but everything has a very surreal feeling.

I have spent most of the time since his departure at my mother’s. Caring for her is completely different than caring for Dad, Mom or Peggy. Mama is of sound mind and can do many things by herself. The treatments (radiation and chemotherapy) to fight the cancer are a big stumbling block but her attitude toward her disease is allowing her to sail over these hurtles. Being with Mama has provided me with a natural defense against grief.

Now that I am home, I find myself swamped with memories. Echoes of Dad’s voice asking, “Where’s Shari?” ring in my head. I have to push back the need to go check on him, with the reminder that he is no longer here. My heart hurts constantly with missing him. It’s as if I have suddenly lost an extremity. He and I became a part of one another that is unlike any other relationship on earth. The weight of the loss is staggering at times.

Over thirty-two years ago, I met this man. I remember thinking to myself, “I wish I had a Dad like that.” As my relationship with my own father deteriorated further over those years, I gradually realized I DID have a Dad like that. My father-in-law never once let me down in the “Dad” department so when it came time to care for him and Mom, I knew in my heart, it was the right thing to do.

He loved God and his country. He loved his wife, his family, and his job. And I have never doubted for a moment just how much he loved me. It was almost as much as I loved him.

Grief: Adrift on a Sea That Has No Direction

Grief must be the most insular of all emotions. Adrift on a sea that has no direction. Each time we grieve, for each person we lose in our lives, it is entirely different. It depends on the relationship we had one with another. Losing a parent, a grandparent, a sibling, a lover, a spouse, a child, a pet, etc. each creates vastly different emotions. I expected to feel the pain born of losing a parent even though I was only Dad’s daughter-in-law. I got it full force.

I knew it was coming long before anyone else did. He and I talked long and often about his desire to go to Heaven. We read the Bible and prayed over it together. He reaffirmed his faith in the Father, the son and the Holy Ghost. In our own ways, we prepared one another for what was coming… that Dad was going… soon. Over the last couple of weeks of his life, I silently grieved as I watched him slipping further away.

I never could have imagined that I would feel two entirely different types of grief. It was impossible for me to prepare myself for the overwhelming sense that I have lost a child. No one ever mentioned that I might feel this way. When you are the caregiver of someone who suffers from the latter stages of Alzheimer’s, you are caring for a child in so many ways. This child is entirely dependent on you for everything. You are solely responsible for cleaning, changing, dressing, feeding, teaching, protecting and loving them.

When you suddenly lose that child that’s inside the parent, there is a void that is staggering. How different your life becomes. How different my life became. For the first time in 3 years, I can leave the house without making sitting arrangements. I can go to the grocery store and not buy the staples that were such a part of his daily diet. (I can’t bring myself to go down the ice cream aisle for fear of dissolving into tears at the sight of his favorite tubs of vanilla.) I no longer have to go to the pharmacy here (seriously, I use to go at least 4 times a week).

I can’t begin to tell you how much I miss hearing him say, “I want my mommy.” I even miss the times he acted out because at least he was here to do it. On the morning of him being gone a week, I awoke in tears. I was saddened by the thought that it was the longest I had been apart from him in 3 years. I was blown away by the thought that each day would irrevocably take us further apart.

Before I had time to adjust to these changes, God moved me hastily forward. Dad died on Tuesday. The following Thursday, Mama passed out and fell. She busted her knees (both knees with chronic problems) because she went straight down on both knees as she lost consciousness. The impact was hard enough to cause compression fractures in 3 vertebrae and she broke 3 toes. I was there that night. I couldn’t have dreamed I would stay a week and a half. I couldn’t have guessed at the number of questions that would be answered while I was home.

Life is already changing at lightning pace. Mama needs more help than she would ever admit. We have a lot of loose ends with our home, jobs, school, etc. We have finally come to the conclusion that we are going to approach life from a rather unorthodox angle. I am going to be home in Florida from Saturday night until Tuesday morning. It will allow me to work my regular Sunday and Monday nights at Peggy’s and take care of the many things that are requiring attention at home. It will enable me to have time with Richard, Jeremy, Jordyn, Melissa, the kids, etc. Then I will be in Gulfport from Tuesday afternoon until Saturday afternoon with Mama. It will give me a chance to have the best of both worlds.

I am home now. For the first time in 3 years, I am in our own home. As much as I miss Dad, I do NOT miss the daily reminders that this was his home and we were just guests here! It’s odd to realize I don’t know if I’ll ever be a fulltime resident here again or not.

For a long time, people have asked me what I was going to do when Dad died. I never had an answer because I didn’t know what life would have to offer me. Now I do know. At least for now, I will be dealing with cancer as well as the aftermath of dealing with dementia.

Because I Love You

This was written yesterday...

IF YOU ARE FAINT OF HEART PLEASE DO NOT READ THIS POST

I want to remind anyone reading this that it is a diary… my diary. I write from my perspective about my experiences. This post may be more graphic, more brutal, more intense, than what I usually write but death is graphic, brutal and intense. If you decide to continue I will point out that I have left out many events and details between the last post and this one. Because, sometimes, it is more than enough to simply live it.

It is 2:00 in the morning here. Today is Tuesday Oct. 23, 2012. Dad's blood pressure (BP) has fallen to 90/61 (at last reading) with a heart rate of 130 (It's been above 120 since 7:00 am yesterday morning). His oxygen saturation is down in the lower 50% range. His temperature is 97 degrees even and he is currently breathing approximately 30-32 breaths per minute (bpm). I have increased the oxygen to 3 liters. He is in a coma now, as his body is slowly shutting down. I was blown away to discover that his kidneys are still functioning. It's only surprising because he only had about 40% function to start with. I totally thought they would be among the first organs to fail.

Dad appears to be gently snoring as I sit here writing this. But sounds can be deceiving. The soft sound is actually the beginnings of the death rattle and he is beginning to experience small bouts of apnea (pronounced pauses in breathing). His lungs are beginning to show signs of having fluids in them (the lower lobe of the right being worse than the left). His hands are held in the same position he has been holding them since I wakened on Friday morning. His circulation is slowing down. His feet are like ice though his hands are still very warm. Cyanosis (something that causes discoloration to appear in certain places on the human body as life slips away) has begun to appear, shades of purple and blue are appearing on his knees, across the bridge of his nose and on his upper lip. Under his fingernails the color seems to deepen more each time I look at them. His head is held almost rigidly in place but his jaw is slack, the correct term is that it has "dropped". He has breathed only through his open mouth since last Friday. His tongue is a purplish hue pushed toward the back of his mouth which causes the snore.


I know he is not suffering, but I am, as I watch him... as I listen to him... as I wait with him.


That reminds me of a time when he was hospitalized (there were so many of those). Because he was being discharged (he had been admitted through the ER in his pajamas a couple of nights previously), I had run home to get him clothes. As I walked in the house, the phone began to ring. It was Dad and he had no memory that I had just left him ten minutes before. He thought he was at a movie theater and he wanted a ride home. He was impatient because he thought he had been there waiting for me all afternoon. When I assured him I would be there in just a minute, he began to cry. Again he insisted that he was tired of waiting and he just wanted to go home and eat. He then shouted at me, "I am sitting here waiting, waiting, waiting, BECAUSE I love you!" The entire situation was founded in the delusions of a demented mind, but those words have replayed themselves a number of times since they were originally hurled at me. They have been an odd litany for me over the past few weeks, but never more so than throughout this seemingly endless night. My mind screams, “Dad, I am sitting here waiting, waiting, waiting, BECAUSE I love you!”

It's 4:00 am. That means time for vitals, assessments, and all the medical stuff again. Well, no significant change in any of the numbers, only his BP has dropped a bit. However, the physical changes are pronounced. His fingers are now turning shades of purple in addition to his bluish fingernails. His eyes and cheeks are suddenly sunken and hollow. His breathing is erratic and the bouts of apnea are worsening. I take great consolation in the fact that he is in absolutely NO pain, he is in his own home instead of a cold institution, and that there isn't a nurse alive who could love him as much as I do or care for him as gently.

6:00 am and the sun is finally rising. We have made it through another night. Morning brings with it more rigidity to his worn out body. The blood in his feet is gathering at the back of his heels (called pooling) and he is developing flat spots where they rest against the mattress. The signs are slowly coming together. His BP is the highest it has been since midnight (which is still abnormally low for him). His feet are cold now as his body temperature begins to drop.

At 8:00 am his blood pressure has dropped significantly again. His breathing pattern has changed drastically. His breaths per minute have slowed down slightly. The bouts of apnea have lessened for now. There are no fluid sounds in his throat and he is back to a slight snore.

9:00 am if you didn’t know what the shadow of death looked like you would probably think he is simply sleeping.

10:00 am and everything is changing now. His breaths per minute are down to about 20. His oxygen saturation is down to 46%. His pupils are fixed and have begun to dilate. I have bumped the oxygen up to 4 liters. I know we are nearing the end of his life. I repeatedly assure him that Mom is waiting for him and it is okay to go join her. I tell him frequently that I love him and it is finally time to go. There is nothing more I can do.

Noon brings major changes. His blood pressure has fallen to 79/43. His pulse is at 46 beats a minute. His body temperature continues to fall. I know in my heart that I will not be checking his vital signs at 2:00 pm. I whisper my goodbye in his ear and leave him alone with his daughter. I know how much she needs this time with him. It is her time to say goodbye, to read him psalms and to pray with him.

At 1:30 pm I am on the phone with one of my nephews when Richard rushes up and says I need to check on Dad. ”Get your stethoscope,” he shouts as I toss him my phone mid sentence and rush to Dad. As I approach the bed, I see that he is still breathing… barely. I listen to his heart beating very faintly. I put my left hand on his now cold forehead. He took three breaths and his heartbeat faded away. At 1:35 pm Dad’s soul left his body and he is finally at peace. He is finally reunited with those who have gone before him. Most importantly, he has left behind the Alzheimer’s that robbed his mind. Now he is once again whole.