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.

In These Final Hours

I have felt a presence these last few hours so strongly I have glanced around rooms…
A mere whisper of movement, a tiny breeze that touches my skin to leave a shiver in its wake…
So strongly I have felt it, I called out your name softly so as not to disturb… either of you.

I watch him sleeping and marvel at the sense of peace I feel wash over me…
At the peace I see erasing the lines time and life have chiseled into his face…
I feel comforted to know that you await him with open arms… anxious to be by his side once again.

Like you, I have loved him… and cared for him… I have devoted this part of my life to him…
My arms feel empty at the thought of him preparing to take wing and fly away from me…
My heart overflows as I feel you hovering nearby, eager to begin your next chapter… with him.

I bow my head and pray knowing that the time to depart his life here on earth draws ever nearer…
I am honored to be here with him, with them, privileged to have had them call me daughter…
I am humbled by the love they still share and blessed to have borne witness to its enduring power…

There will be dancing on the clouds of Heaven soon, while a host of angels sing and rejoice…
Before long this precious father-in-law of mine and his beloved bride will finally be reunited…
Never again to be separated by… time… space… life… or death… together for all eternity…
together they will forever soar free.

It's Sunday and Time Is Marching On...

Sunday, October 21, 2012

Around 3:45 this morning, I called hospice. Dad could no longer swallow and was choking. I knew it was time, but I needed them to tell me it was. The nurse assured me it was time to start administering atropine drops to reduce secretions and a combination of Roxanol and Xanax to keep him pain-free. Because he was in distress, I gave him the prescribed dosage. He settled into a deep and peaceful sleep. For now, he seems to only need the meds every 4-6 hours.

The grandchildren and great-grandchildren that live locally were here most of the day. The children don’t hesitate to run in and out of his bedroom. Little Tyler is only 4 years old and he goes and “checks on” his Pop every 10 minutes or so. I cannot help the smile that crosses my face every time I hear that little voice shout, “Hi, Pop!” when he enters the room. The dog periodically jumps up on the bed and slinks forward to lick Dad’s face. His only living daughter spent a great deal of the afternoon by his side. As these things occur, I am reminded that we are a family and this is life.

It reminds me of all the reasons I had my youngest daughter at home, rather than a hospital. There I was at peace, surrounded by those closest to me. Here he is at peace, surrounded by those closest to him. There a life was welcomed in a virtually pain-free environment. Here a life is waiting to enter the Kingdom of Heaven in a completely pain-free environment.

This is a celebration of life tinged with a hint of great sadness. To lose one you love is always heart-wrenchingly sad. But, there is great joy at the thought of him finally freed from the Alzheimer’s that was slowly destroying him. There is great joy at the thought of him finally being reunited with his beloved bride of nearly 70 years.

Without a shadow of a doubt, it’s going to be another very long night and I’m betting it’s going to end up being just me and him. Together, waiting, as time marches on…

It's Just the Two of Us Here

Yep, it’s official. Dad has a Urinary Tract Infection (UTI). It took until Tuesday to get a viable sample. Because it was almost closing time at the lab, it was Wednesday before we got the results. I am not a patient person by nature but this has been a ridiculously long drawn out process. A normal person would go to the ER and they would diagnose it quickly, hand you a prescription for an antibiotic then send you on your merry way. Dad is on hospice so things are no longer normal. I cannot take Dad to the hospital this time because they would admit him. I promised him that he would die at home. I will honor that promise.

By Tuesday night, he was aggressive and combative, obviously not in his right mind. Every time I got within arms-reach, he would grab my arms in a grip stronger than I could have ever dream he was capable of. He would squeeze them tighter and tighter until I could break free. He laughed and told me he wanted to break them. He would claw and pinch. When I fed him, he spit the food at me and was convinced I was trying to poison him. He tried to bite me multiple times.

On Wednesday the tests results came back that he had a raging UTI. For a variety of reasons, they had to grow a culture to determine which antibiotic to put him on, which meant waiting another 24 hours. While the nurse was here she got to see him trying to break my arm. She said it even scared her. He was getting worse and we both knew it. They started him on pain medication believing his combativeness was caused by pain he couldn’t communicate to us. Apparently they were right because the behaviors stopped as soon as he started taking it.

By noon on Thursday Dad had become less responsive, sleeping constantly. Barely rousing to eat, drink and take meds. Steadfastly, he refused to open his eyes. That afternoon, the culture results came back…contaminated. Once again, we needed a urine sample. It was getting harder and harder to get one.

Friday dawned and I was shocked to see the further rate of deterioration. He is beginning to look gaunt. He doesn’t respond to anything but pain (ie. If I move him to change his diaper he moans). His oxygen saturation level has dropped to a consistent 89. I started him on 2 liters of oxygen and called hospice. We quickly agreed it would be best to get a nurse out here to get a sample using a catheter since it was obvious there was no other way to get one. It was also obvious we were running out of time.

A new nurse came out and she seemed to understand my frustration at the whole situation. Once we had the sample, she got the doctor on the phone. She requested that she be allowed to call in a prescription for a standard antibiotic, Cipro to buy us time to get the lab results. He started it as soon as I could pick it up, but I have to wonder if it’s already too late. This is the point where I have to have faith in medical science and BELIEVE that it might work.

This morning Dad was aware of me when I gave him his meds, crushed up and swimming in water. My heart swelled to nearly bursting when he croaked out a labored, “I love you”. I still can’t get him to open his eyes. But he did squeeze my hand weakly in response to my squeezing his, which is more than I’ve gotten since Wednesday. The threat of aspiration hangs over us as I continue to try to get water, Ensure and medications down his throat. I know I am fighting a losing battle. Still, I must continue to try.

Dad is 90 years old. He’ll reach 91 if he sees Nov. 11th. His medical history is unbelievable. His list of current diseases and conditions is quite lengthy. The number of pills he takes daily is staggering, even now. He lost his bride two and a half years ago. All of his old friends are gone now. He has buried two of his daughters. He has zero quality of life and has had for quite a while now. He has given up and is ready to go.

His body is slowly shutting down as I sit here listening to him breathe, the sound separate from the steady rise and fall of the oxygen machine. This afternoon, Richard helped me get him cleaned up and get his bedding changed. He roused as we finally got him resettled and actually opened his eyes. Dad focused his eyes briefly on his son and whispered, “I love you”. He tried to talk more but the effort was simply too much. He managed to keep his eyes open through almost half an Ensure and a bit of water. His eyes trying to focus as he followed my movements. Eventually, his eyelids softly closed, his eyelashes fanning out against his sunken skin.

He has been sleeping ever since. It is just the two of us here. I hold his wrinkled hand tightly. My voice rings loudly in my ears as I talk to him while coaxing him to swallow “one more dropperful of water”. Each time I succeed my heart rejoices. Each time he chokes, my heart plummets. Every once in a while, he tries to clear his throat then all settles back to the rhythms of man and machine. And time marches on…

New Orleans Is Next to Heaven

I know I have been absent for a while. I can honestly say that I have been completely and utterly overwhelmed by life. When life is coming at you, all at once, from every angle, it gets hard to put thoughts in order sometimes. There is also the unbelievable exhaustion that is caused by the mind that seems to be playing catch-up with the body (in my case, the battered and bruised body). But, the longer between writing the more I need it, if for no other reason than to exercise my demons and short comings.

I was blessed to get to go with Mama (and my sister) to her first Radiation Oncology appointment. Hearing the hope and BELIEF in this doctor’s voice that we could buy Mama some time with radiation and chemotherapy led me to set up a non-profit organization that will help pay her medical bills. I named it “Hope for Ann” and so far, we have raised almost $4,000 in less than a month! A dear friend, Terri, organized an all-day benefit last weekend, that enabled us to raise over $3,000 alone! Unfortunately, it is only a drop in the bucket of her mounting medical bills.
Mama and I had a long talk and I plan to keep “Hope for Ann” going for a long time to come. We will single out one person at a time, with terminal cancer, and we will raise funds to help them pay their medical bills. Some of my amazing friends have offered to embark on this journey with me. I can never thank them enough for their love and support. I can never thank EVERYONE involved enough for all they have done and are continuing to do.

I also have to mention that I planned to shave my head bald as a show of solidarity for my mom. She vehemently opposed the idea so I chopped all my hair off to donate to Pink Hearts Fund http://pinkheartfunds.org a group that makes wigs for children with cancer. My youngest daughter did the same as well as a couple of our friends. I am also now the proud owner of a white ribbon (for lung cancer) with my mom’s initials tattooed over my heart and my oldest daughter is sporting a new tat of a white ribbon on her foot. Solidarity at its finest!

Dad has had more ups and downs than are even imaginable. For the most part, he was doing pretty well… until I went out of town. I was given a trip to Colorado for the wedding of one of my “adopted” kids. One of the biggest honors of my life was getting to stand in as the “mother-of-the-groom” and it was truly one of the greatest trips I have ever taken in my life. I will cling to that always. As is the nature of a caregiver, I have to force back the feelings that so much could have been avoided “if only I hadn’t left him”. I left on Sept. 21st and returned on the 24th. What a difference a few days can make!

The week before I left town, I took Dad to see his primary physician. He changed his medications and it was decided that we would switch to hospice as soon as our time with home health ran out. A couple of days before I left, Dad’s beloved physical therapist, Helen, had to tell him that it was her last visit. That was a very hard day for both of us. Helen and I have become friends and she was the first person I told that we were calling in hospice. Dad was aware enough of the loss that he acted out horribly the rest of the day. His world had tilted out of balance and he knew it. Now, add to that the awareness that I was going out of town (most importantly, I wasn’t going to Ms. which he is used to) and throw in the fact that I had my oldest daughter come from out-of-state to take care of him. I mentioned to a couple of people, the doctor included, that he always seems to get sick or injured if I go away and prayed that things would be okay here while I was gone.

God has his own agenda. Apparently, he was doing alright on Friday and Saturday but then on Sunday, he only wanted to sleep. That afternoon, he went to the bathroom and fell. My husband, Richard, had to get him up and back into bed. He didn’t eat and barely drank anything all day. That evening, my daughter called concerned by that and the fact that he hadn’t taken any medications that day. I told her to wake him up and make sure he drank a full glass of water and ate a banana while taking his evening meds. She did and he went back to sleep as soon as he was done.

On Monday, he again fell. This time Richard had to call the EMT’s to get him off the floor and back into bed. After monitoring him for over an hour, they decided to not take him to the emergency room. Other than a small abrasion on his lower back, he seemed unharmed. Richard picked me up at the airport and told me what all had been going on in my absence. I didn’t even make it to the car before I knew we would be going to the ER that night and told Richard so. The 45 minute ride home seemed to last hours and I had to control the mind blowing urge to scream, “Hurry!” every few seconds.

I threw my bags aside as I came through the door. When I got to his bedroom, he was trying to push himself back up onto the bed, repeatedly scratching his tailbone on the side board. I grabbed him and called for Richard. When we had him fairly secured on the edge of the bed, I called for an ambulance. After a couple of hours, a bottle of fluids for dehydration, and several tests, it was determined that he had a small crack in his tailbone, multiple abrasions and bruises, but there was no reason to admit him.

The doctor (who we have dealt with many times over the last 9 or 10 years for both Mom and Dad) came in and knelt on the floor beside my chair. He looked me in the eyes and told me that he believed the medication changes were responsible for the falls. Then he asked me something I will never forget, “Take all his diseases and conditions and add them up, now multiple them by losing the person you loved an entire lifetime, then divide it all by 90… would you really want to keep fighting?” I told him that the orders had been signed to start hospice as soon as home health ran out. He suggested I call them both the next morning.

Just like that, we were discharged under one and admitted to the other. It truly couldn’t have been an easier process. Where home health was a tremendous help while Dad was still getting around and fairly self-sufficient, he had progressed beyond their functions. Hospice swept in offering help, supplies, resources, etc. For the first time in 3 years, I know that help is a phone call away and will be until the very end. It is nice to feel less alone in all of this.

The downhill spiral he took while I was gone continued until he was bedridden and slipping farther into his own mind. His Sundowner’s has taken a predictably bad turn over the last couple of months. At app. 4:30 pm EVERYDAY, he becomes increasingly delusional, belligerent and hostile. He invariably stops recognizing his home and anyone in it and is convinced that we are holding him here against his will. He is uncooperative and can physically lash out. He asks frequently where Mom is and why I am keeping her from him, unable to remember that she died in 2010. Eventually he begins to whine that he wants to go home. When asked where home is he replies, “New Orleans”. It wasn’t until last night that he mentioned that Mom always said, “New Orleans was next to Heaven” so he needs to get there to be ready to go. I remember my Grandmama telling me she wanted to “go home”. I remember how peacefully she did. I thank hospice for that and I thank them for their support again.

Last weekend while we went to Ms. for the benefit, Dad was moved to a local nursing home for 5 days of Respite care. Medicare pays for this service for 5 days every 90 days through hospice. Remember that caregiver burnout I was headed for back in Aug.? It finally caught up with me. The break was a great thing for both of us. We couldn’t believe how good he looked when Richard and I arrived to pick him up. He even fed himself all of his lunch while they processed his release. Unfortunately, he thought he had been arrested and that he was in jail. But the gratitude and genuine affection he showered Richard with at “breaking him out of this sh*thole” was nice to see.

He seemed to be in great spirits as we got him home and settled. But as the afternoon shadows lengthened outside, I watched him fade slowly back inside his demented mind. He obviously didn’t recognize me as I searched for ways to stop his mental retreat and by bedtime, we were both exhausted beyond belief.

He is belligerent a lot of the time now and has become increasingly violent toward me. He insists he can do things like standing on his own but he starts to fall if you let go for even a moment. He tries to scoot out of the bed without calling for help and gets stuck halfway through the process. He can no longer do anything unassisted and that frustrates him to no end. The other night, he reached out a hand to me with a smile. When I took his in mine, he yanked me down to him and smacked me in the face with the other one. Instantly, his smile was replaced and a look of absolute hatred replaced it. I jerked away reciting a litany of, “It’s not him, it’s the disease” to myself. I have to recite it a lot, especially when my old bruises have new bruises on them.

Today started early, about 4:45 am. Dad started calling, “Hello? Hellllllooooo?” I struggled to break free from the sheet on my makeshift bed otherwise known as the living room sofa as his voice rose in volume. He had wet the bed and needed cleaning, changing, and to go to the bathroom again. His speech was blurred and he was very unsteady, completely unable to do anything at all. Once clean and dry, he instantly fell back asleep.

He slept until the nurse’s aide arrived to bathe him. He is concerned that he missed the school bus today despite reassurances that today is a teacher planning day and there was no school. He believes he is a little boy and is waiting for his mommy to get home from work. When the nurse arrived she asked him how old he was, he replied that he was 56. When she asked where he was, he said he was in his home. When she asked where his home was, he said in England.

The rate of deterioration seems to be hurtling us ahead at a lightning fast pace. He is slurring his words and he is beginning to forget how to eat. Drinking water from a sippy cup with a straw is beyond him most of the time. He frequently chokes on food or drink. We are past the point of hoping for good days. Now, we can only hope for good moments. The washer and dryer are in near constant use, loaded with sheets, blankets and pajamas. Note to other caregivers: I have finally given up on the bottoms unless he is up and in the wheelchair. He was going through them faster than I could wash and dry them. It has also lightened my load because we aren’t struggling in and out of them all day, every day.

After seeing him today and helping me get him onto the potty chair, our nurse has decided to order us a Hoyer lift. This is an assistive device that allows patients in hospitals and nursing homes and those receiving home health care to be transferred between a bed and a chair or other similar resting places, using hydraulic power and slings. My back is thrilled at the thought of some relief. Moving a 6 foot tall man who weighs app. 195 pounds would take its toll on anybody. Moving said man all by oneself is possible but unbelievably difficult.

Hospice has come to my rescue. They have provided me with all the medical equipment I need to provide the best care I can here at home. They take care of his prescriptions, his Depends, wipes, pads, razors, shaving cream, medical supplies, etc. If we run low on anything, all I have to do is call and they will deliver it to me. They send someone to bathe him 3 times a week. We have an assigned nurse who is gentle and caring when dealing with him (which is a couple of times a week).
{Sometime & a wrenched back later} They just delivered the Hoyer lift. Whoever designed that thing obviously never considered its use with someone who suffers from severe incontinence, Crohn’s Disease & Prostate problems. This can only get more interesting. I will do my best to keep you posted.

Turns Out I'm Only Human After All

I read an article this morning that really made me stop and evaluate a few things, “Compassion Fatigue Strikes Family, Even Animal Caregivers” by SUSAN DONALDSON JAMES | Good Morning America. The article states that thousands of Americans are suffering from compassion fatigue, a term used to describe the symptoms of secondary post-traumatic stress caused by caregiving.

Caring for others too much can hurt, according to the Compassion Fatigue Awareness Project, no matter how old you are or in what capacity you're providing care. "You take on the pain of others and suffer, bottled up, angry and suppressing feelings," said project founder Patricia Smith. "Your impulse is to rescue. You don't have any personal boundaries, but you become isolated and lose your self-care in the process."

Without paying attention to their own needs, caregivers can turn to destructive behaviors. "It's a natural consequence of stress," said Smith. "In healthy caregiving you are 100 percent present in their care with empathy and compassion. But it's unhealthy when things in your own life are not resolved and you take on their suffering as your own."

More than 65 million Americans, about 29 percent of the population, is providing care for someone who is chronically ill or disabled and spend an average of 20 hours a week looking after a loved one, according to the National Alliance for Caregiving in collaboration with AARP.


Just last night, I melted down emotionally and could not stop the flood of tears that washed down my face. I was on the phone with a friend and I admitted that I find the pain of others quite overwhelming sometimes. I said I wished I could just stop caring so much. I was informed I couldn’t do that because it is WHO I am.
When I got off the phone, I felt a serious need to apologize for breaking down. I mentally kicked myself for allowing the day to “get the best of me”, for temporarily losing control in the face of severe adversity.

I looked back over recent text messages from friends and I realized that when I’m asked “How are you doing?” my replies usually revolve around Dad, Peggy (the 89 yr old lady I work for as an overnight caregiver), the kids, etc. I guess they are my barometer. But I also noticed the number of times certain friends have responded, “But, how are YOU doing?” I know they are genuinely concerned but I don’t want to burden others with my feelings.

I usually reply, “I’m fine, just tired.” There you go, I admit it. I am suffering from Caregiver Fatigue (CF). I also admit to suffering from Superman (or in my case Superwoman) Complex. I find it nearly impossible to admit that life overwhelms me sometimes. I would much rather convince the world and myself that I can handle anything, anytime. I can’t stand to let, what I perceive to be, my weaknesses show except to a VERY select few. This, of course, becomes a factor in the never ending cycle of CF.

I have spent my whole life caring for others. I have always put the needs and wishes of others before my own. I honestly wouldn’t have a clue how to behave any differently. It IS who I am. There comes a point where even I have to realize that it can wreck your emotional health (and in some cases, your physical health as well).

Yesterday, I started my day, after an almost sleepless night with Peggy, to find that she is growing weaker instead of better. (A couple of weeks ago her Home Health nurse recommended that it was time to bring hospice in. Her daughter, who is also her power of attorney, is vehemently against the idea, stating that her “girls”, meaning we caregivers, can handle it). Here, I will go on the record and say that the additional help would be most welcome for all of us.

Add to that… getting potentially bad news and seriously bad news from two different people closest to me.

Then, I spent several hours listening to Dad tell me he thinks “it would just be best to go ahead and die”. If that weren’t enough, he seemed to take great satisfaction in coming up with various ways he could “end it himself”. As much as I know it is his Alzheimer’s talking, I couldn’t help getting upset by it. Not to mention being completely frazzled by trying to keep 4 children out of the room so they would hear as little as possible of what he was saying.

Ok, so reading back through my day yesterday gives me pause. I have every right to fall apart occasionally. I have every right to feel sadness and pain. Maybe, if I claim those rights and get off my own back, I will be able to deal with the stress and fatigue a bit better. I am doing the best I can with all I deal with and I need to give myself a break from judging myself so harshly. I need to stop being my own worst enemy and get off my back a bit. Because in the end, I have to remind myself that I am only human.

A Step Away From Dementia

I want to take a step away from Dementia (though it is something that both my mother-in-law and my grandmother suffered with). I want to talk about death. I want to talk about life…
As many of you know, I lost my mother-in-law to COPD & Congestive Heart Failure in April 2010. She was hospitalized for more than a week. She was on a ventilator for 5 days before it was finally cut-off. When the respirator was turned off on that Fri, I stayed by her side. The only time I left was for less than half an hour to take Dad home and hand him over to Richard.
One of the hardest things I’ve ever done in my life was to sit there for 24 hours with her, knowing that the end was coming and there was nothing I could do to help. It was unbelievably painful to watch her struggle to take 8 breaths a minute for over 3 hours. The only consolation I had was in knowing the morphine and Ativan she was receiving by IV were ensuring she couldn’t feel a thing. It was explained to me by the nurse that the hospital we were in practiced “Comfort Care”. She carefully outlined what that involved. As a family member, and her caregiver, I had the right to tell them when I thought she was in pain and they could give her extra morphine. They couldn’t do it unless I told them to give her more relief. She explained that it would slow down her breathing and enable her to die more peacefully and completely pain-free.
Another of the hardest things was explaining to Dad that he had to tell Mom it was ok to die. And one of the most beautiful things I’ve ever seen was her doing exactly that after he said it. She died with dignity. The two most profound moments in life are birth and death. There can be beauty in both.
6 months after Mom passed away, my beloved sister-in-law got up on 10-10-10. She fixed herself a glass of milk and a cup of coffee, sat down in her favorite chair, turned on her favorite movie channel, sat back and her heart stopped beating. Not a heart attack, a heart disease that no one knew she had. But the look on her face was one of peace.

On Feb. 28th, my oldest daughter gave birth to a baby girl, 7 weeks early and weighing only 4 lbs 8 ozs. Naturally, I got there as fast as I could. 11 hours later, I saw my new granddaughter for the first time and my heart filled with love. That night as I stood next to my 92 year old grandmother’s bed, she held my hand and said, “I just want to go home, Baby.” She had made similar statements many times in the recent past but this time, I knew in my heart, was different. I shivered as my heart filled with love.
The following morning she had difficulties that brought the hospice nurse out. My grandmother was in end stage COPD, a result of being in Congestive Heart Failure. It was quickly apparent that she was sliding downhill at a rapid rate. No more assisting her out of bed. No more solid food…soft foods and liquids only. All medications were to be crushed and mixed with pudding or yogurt. At 2 a.m. the following morning, I attempted to give Grandmama her meds, unsuccessfully. The nurse-practitioner (a family friend), officially declared that she could no longer swallow anything but liquids and she was removed from soft foods.
By the next morning, Hospice had taken her off liquids as well and it was decided to begin comfort care medications by mouth. Most commonly used is a combination of Ativan and Morphine. It is measured into a syringe and slowly administered under the tongue. It is massaged into the skin by rubbing the cheek, chin, etc. closest to where it is placed under the tongue. There were Certified Nursing Assistant’s there throughout the day but they can’t legally administer the medications. I, as a family member, could. So, I did.
Here, finally, was a gift I could give my grandmother. She had given me so many amazing gifts throughout my life. She gave me the gift of life itself. She gave me my morals and ethics. She gave me the capacity to love unconditionally. I could make a list a mile long but I won’t because many are too obvious for words. I felt overwhelmingly honored to know that I could help her pass painlessly…peacefully…with dignity.
The peace that surrounded me throughout the night showed me a beauty I had never known. I watched her snoring for several hours. I watched her breathing patterns change. I listened as her snoring stopped and her breathing became shallower but quieter. I watched her pulse change as the night wore on and I knew what the changes meant. And I administered her medications, on time, every time.
I knew at 6:00 a.m., when I gave her the last dose of medications, that it wouldn’t be much longer. I was shocked to discover I wasn’t heartbroken to know the end was near. I have never in my life known such peace as I felt at 7:13 a.m. when she took her last breath with my hand resting on her chest. My angel had gone Home. God was with me the entire time…and He was with her. And He got my attention once and for all.
With every turn my grandmother took for the worst over a 36 hour period, my granddaughter took a turn for the better. There is no doubt in my mind that the two were connected. As my grandmother was in her final moments, the baby took a turn for the worst that put her back on the machine we had just gotten rid of. She rebounded quickly after Grandmama passed on. I am blessed to have witnessed such things.
Life and death are completely entwined. They go together hand-in-hand and will for all eternity. You cannot have one without the other. And there is beauty in both. We must simply open our eyes and our hearts to see it…