WORTH A LISTEN


I heard this song today. It reached out to my heart. I hope it reaches your's, too.


https://www.youtube.com/watch?v=C4kXequ2Lls

An exciting new voice is being heard in the community.


http://thecaregiversvoice.com/the-caregivers-voice-video-channel/the-caregivers-voice-video-channel-debut/

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!"

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…

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.

Back With Things to Say

April 2, 2011

I am the first to admit it's been a while. I apologize to my readers and I apologize to myself. So much has happened since last August. I realized today that I haven't been able to write because I have been too bogged down in the day-to-day chaos of just living here. I am going to give a quick overview and tell you that Dad has been hospitalized 3 times since Aug. Once for Crohn's Disease, once for dehydration and once for his heart. Last Oct. his oldest living daughter (and one of my dearest friends EVER) died very unexpectedly and our lives again were shattered. Ironically, Dad's Alzheimer's provided him protection from the realities of it all.

Living with someone who suffers from Dementia/Alzheimer's is similar to living in a war ravaged third world country. Unpredictability and instability become the norm. At any given moment, (with no rhyme or reason) anyone can be seen as the enemy and suddenly clarity ceases to exist. It happens in the blink of an eye. Being the caregiver of someone who is completely irrational at times and requires 24/7 care is without a doubt the most frustrating, exasperating and exhausting role I have ever taken on. But the times when it is satisfying, fulfilling and rewarding makes it all worth it. Unfortunately, there is absolutely no way to find such a thing as balance when dealing with Dementia.

In essence, I am dealing with an 89 year old child most days. Frequently, he is aware that he is misbehaving but is unable to control the behavior. And if he misbehaves, his illness enables him to forget it the moment anything happens. I am firmly convinced that most of the negative behavior he exhibits is born of his overwhelming sense of frustration. The limitations that have been imposed on him by his many physical ailments, his age, and his mental instability are taking a friendly, out-going, active, humorous, hard working, life loving man and making him a shell of his former self. (Though, I have to admit, he still has an awesome sense of humor at times!) He is so seldom animated anymore that I have to be grudgingly grateful for even the bad behaviors.

Here, I'll give you an example. When we left our last doctor's appointment the other day, Dad insisted on collapsing his walker and putting it in the back seat of the car unaided. I stood by helplessly watching his struggle. After several minutes, I stepped forward to help. Out of nowhere, I received a forearm across my chest that sent me reeling backward. Dad turned to me shaking with rage and yelled, "I can f-ing do it myself!" His frustration mounted as he continued to fight with walker and I stood terrified he was going to give himself a heart attack with the strain. A couple of minutes later, he finally got it shoved in (in a position that put a wheel directly into the back of my head).
For so many reasons, I wanted to rest my head on the steering wheel and cry. My frustration at it all enabled me to see his frustration so much more clearly than I already do. Those are the moments when I can hear my heart crack a bit more in the surrounding silence. As I started the car, I glanced over at him. On his face I could clearly see his pride, his sense of accomplishment in having successfully accomplished a task he had set for himself. And I could feel the crack slowly beginning to heal.

This One is About Me

Much of my “free” time lately has been spent in reflection, contemplation, meditation and prayer. It unfortunately, sucked away my ability to write. Since school let out for the summer, I have been unable to take my solitary morning walks. As summer has progressed, I have come to realize the importance of finding a way to begin them again when school starts. I know I need the peacefulness and vigorous exercise to center myself. It is a personal way of rejuvenation. I am hoping it will relieve some of the lethargy that has threatened to consume me this long, hot summer.

When last I wrote, Dad had just come home from the hospital. He still has no memory of the 27 days he was in either a rehab facility or the hospital. For the 1st time since I moved here, I have had real, medically trained professionals coming in to help me with him. For the 1st time since moving here I have had any help at all.
Dad is doing amazingly well. He moves around the house frequently without his walker (the wheelchair is, at least temporarily, a thing of the past). He has gotten up on a few mornings and made his own breakfast. He has unloaded the dishwasher on many occasions (virtually nothing ends up where it belongs, so cooking has become something of an adventure). He sets the table for dinner (ALWAYS incorrectly but he tries SOOOOO hard). He is eager to help and he and I both know it’s because he KNOWS he is slipping more and more into the world of Alzheimer’s.
Unlike after Mom died he no longer lays in bed all day or sleeps all the time. He rarely even takes a nap currently. He may sit in his chair most of the time but he gets up and fixes himself a drink more often than he asks me to get him one. He reads the newspaper everyday. He reads magazines and even watches the TV unmuted more each day. Now that he knows the reason he quit reading books (he can’t remember what he has read once he puts the book down because there is too much for his brain to process and hold on to). Magazines and newspaper articles are short so easier to grasp and retain. They are less daunting in a lot of ways.

Once again, we are making great strides on the physical side of things. Meanwhile, his Alzheimer’s days are steadily getting worse. He has become argumentative. So much so, I have begun to arrange a moment alone with his nurse and therapists to communicate any concerns I may have. I often laugh to myself when I think of Mom’s ingenious plan to start flying a warning flag like they do at the beach. A way of warning everyone what kind of day they can expect. We are most often on at least a yellow flag day (the last 2 days have been red flags for sure).

I went home for an overnight trip last week and was startled to see that my grandmother is deteriorating at a fairly quick pace. I left over 2 hours later than I had intended because I organized her medications and made med lists and gave them specific instructions on things she should be doing. I was still so distraught on Monday when our home health nurse came I told her about it. She immediately got on the phone to a supervisor in her company who in the space of 24 hours had the ball rolling to get them in to help my mother take care of my grandmother. We are arranging everything by phone while my mother is on vacation. By the time she returns, we should be ready to have all the different departments in to make their evaluations. My grandmother is finally getting the help I have wanted for her for over a year and Medicare WILL PAY FOR IT!!! I just wish I could convince her to move in here so I could look after her myself!

Life has begun to get increasingly harder and I find the need for introspection quite necessary. I also find that I roll into bed every night praying for the strength to get through the following day. The demands of my family have grown bigger and more complicated. I find myself quite weary at the end of every day rather than just occasional ones.

I know there will come a time where I will find peace for myself. I know that time is not yet. My peace will come from within and it will be the most solitary thing I ever do. But for now, my life is on hold as I hold hands, change diapers, kiss & bandage enough injuries to keep a walk-in clinic in business, cook, clean, chauffeur, listen to people's sad tales of their problems(and try to offer good advice), attempt to be a good friend to my friends, a good daughter, grand daughter, sister, mother and most importantly, try to be a good mate to a husband who is paralyzed with fear at dealing with his own father’s illnesses and recently, at times, life in general.
But for now, the pain I feel that emanates from this family (Dad, his children, his grandchildren, and even his great-grandchildren) drains the very life out of me at times. So if I should temporarily go into hiding on here… please feel free to message me. Trust me, a good, swift kick in the pants just might be what I need!

I Went Home and Came Home

April 8, 2010

I returned this evening from visiting my Grandmama, Mama and my sister for 2 days. I was startled, as I always am, to realize that my grandmother is 91 years old and in far better mental and physical condition than either of my in-laws. She is very tiny and frail. Her skin is unbelievably soft and her wrinkles add charm to her face. She is surprisingly agile for her age (though she does use a cane or walker much of the time). She is a woman to be admired!

What surprises me most is the realization that she has signs of early Dementia. I am totally aware that she is VERY lucky to have only recently begun to show Dementia related behaviors. But, for me, it is very difficult to see happening.

She told me a story, in which she repeatedly made reference to my mother having been gone with her sister. Problem is, Mama doesn’t have a sister. When I relayed the story to my own sister, I discovered that on the day in question, Mama was with my sister. I told Mama, I think it’s a classic case of substituting words when the proper thoughts can’t be assembled.

Cognitive function is the term used to describe a person's state of consciousness (alertness and orientation), memory, and attention span. I told Mama I think it’s time to have Grandmama tested for a Dementia related illness. In just 2 days time I saw obvious evidence of deterioration of all of the above.
There are medications that can help slow the progression and deterioration of the mind. There are herbal supplements that can help, as well as vitamins, minerals and compounds. I told her of the possible meds a doctor might prescribe. I warned her that they could be referred to a neurologist and/or a psychiatrist. Many medications for Dementia related illnesses are only prescribed by a psychiatrist.

I know what it looks like because I am surrounded by it at home. To me it was quite painfully glaring. If there is a way to slow it down, I will do everything in my power to see to it that it’s done.

I also discovered, that I need to be with her more. My heart breaks that I can’t spend more time with her than I do. I have committed to being here, taking care of my in-laws and I know how desperately they need me. My grandmother knows it too. She applauds what I am doing with sadness in her eyes. And I know for a fact that she prays for me constantly.
I’ve heard it said, that you can’t go home… I disagree. I went home (if only for a very short time) and I found a place that I remember from my youth. I found a sense of recharging my batteries just by being surrounded by my all female family (Karen & Janice included, sorry, Johnny). And I found the most special woman I know floundering to assemble her thoughts and struggling to make a simple sandwich.

She helped raise me and I wouldn’t be who I am without her constant support, encouragement, and unwavering love. I have tried before, and am still trying, to convince her to move in with us here. I could take care of her so easily here. She and Mom are very good friends and have been since I got married over 28 years ago. They would have such a good time together. And Grandmama would feel needed and useful “helping take care of” Mom. I wouldn’t have to worry about her (and I do… so much).
I know in my heart, she will never do it. Like my in-laws, she wants to stay in her home. I truly understand that. She lived there with my grandfather. Grandaddy died there. She is comfortable there, surrounded by her things, in her space. I just wish I could help more. But, I will do what I can. And I will visit more often. I want to spend every moment I can with her. I so totally get that it will one day be too late and I want no regrets more than I will already have…