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Worth a read...
http://www.bloomberg.com/news/2014-11-03/dementia-crisis-roils-japan-as-10-000-seniors-go-missing.html
Happy Summer!!!
10 years ago
Showing posts with label Caregivers for Elderly. Show all posts
Showing posts with label Caregivers for Elderly. Show all posts
Wednesday, November 5, 2014
Saturday, October 11, 2014
Tuesday, October 22, 2013
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!"
Wednesday, July 31, 2013
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
Monday, November 5, 2012
Grief: Adrift on a Sea That Has No Direction
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.
Monday, October 22, 2012
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.
Saturday, October 20, 2012
It's Just the Two of Us Here
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…
Monday, October 15, 2012
"Why Won't You Let Me Go?"
“Who are you?”
“What are you doing?”
“Why are you touching me?”
“Get away,” (slap, slap, slap)
“Stop!” (slap, slap, slap) “Stop!”
(struggle, slap, struggle) “Help! Call the police!”
“Get me a phone they are holding me hostage…”
(Sob) “I want my Mommy. Please.”
(shaky hand grips my wrist)
“Why won’t you let me see her?”
“Why are you doing this to me?”
(shaky hand wipes wet eyes)
“I just want to go home.” (body shudders once)
“Why won’t you let me go?”
Momentary Leap Into the World of Lucidity
“What time is it?”
(struggling attempt to rise)
“What can I do to help you today?”
(eyes focus on me, clear and comprehending)
“I miss my wife.”
“Do you think I will ever get to see her again?”
“How did everything get so fucked up?”
(shaky hand reaches for me)
“I know you didn’t sign up for this.” (sigh)
“I don’t understand why you have stayed.”
“I want you to know I’d be dead without you.”
(squeeze tightly) “Please don’t leave me, okay?”
(eyes search mine) “Can I ask you a question?”
“Why won’t you let me go?”
Sunday, October 14, 2012
3 Days of Decline
This insidious disease spread slowly through his brain. His rate of decline amazingly having its own pace. But things have taken a surprising (to me) turn. His physical and mental decline are accelerating faster and faster. They have reached a point far beyond my control. Far beyond anyone's control.
Day before yesterday he decided to give up. He no longer wishes to live. More than anything on earth, he wants to “go home”. He spent the morning waiting alternately for his “Mommy” or the school bus. His speech was starting to slur. When asked where he was, he repeatedly responded, “England”. He constantly fretted saying that he doesn’t understand why we are keeping him here against his will. He was still able to help with his transfers from bed to potty chair and back. But, I could easily see he was growing weaker.
Yesterday his speech not only slurred but his words rarely made sense. He slept almost constantly and it was a tremendous struggle to get him to wake up long enough to force food and drink into him. At one point, trying to get him onto the potty, we ended up falling on the floor together. On the bright side, when we went down I was able to completely break his fall…with my body. It took almost 20 minutes to get him off me and rolled into a position that allowed me to drag him backward to rest his back against the side of the bed so I could go get Richard (he was downstairs asleep) to come help me get him up and back into bed.
Today has been different. He has slept much of the day. Sometimes he is a little bit clear, other times he is a lot hazy. He is in diapers now and he he seems to have no control over his body. Richard has gotten his first clear picture of how serious things have become. He has been a big help today and for that I am grateful. I know how difficult it is for him (after all, this is his father) but I am glad he finally sees clearly what our lives, Dad’s and mine, are like now. I spoke to hospice about my growing concerns. I also requested that we check him for a urinary tract infection. If he has one, some of what is going on may be explained by that. I guess we will know more tomorrow. Richard cooked dinner tonight and we (even Jordyn) ate it in Dad’s room with him. He ate it all, sometimes lucid, sometimes not. His imaginary world is now his constant companion. I watch him slipping farther away, a little more each day. My heart hurts and I am just plain tired.
Tuesday, February 21, 2012
Balls in the Air
When we are born they take care of us. They feed us and change us and see to our constant needs. They keep us safe and teach us right from wrong. They hold us when we are frightened and comfort us when we are hurt. They don’t ask for anything in return, they do it all because they love us.
Being a family caregiver to someone with any form of Dementia is the most difficult job you will ever have. You have to step into the role of parenting a parent or grandparent. We do for them, as they did for us, because we love them.
Like a baby, they often cannot express themselves well enough to tell where it hurts or why they are frightened. They rely on us to make it better. They are no longer capable of knowing right from wrong so we must gently guide them in the right direction. They have no concept of what is safe and what is not so we must do all in our power to keep them from injury. It can drain every bit of energy from you, leaving you exhausted almost constantly, in a much more wearing kind of way than being a new parent.
There are always times when you will be exasperated. For example, when Dad brings me a handful of light bulbs (removed from every lamp in his bedroom) and says he doesn’t understand why they all burn out at the same time. A couple of times a week, at least, he accidentally turns off the wall switch and suddenly, they no longer work. We have been over this more times than I can count but he just doesn’t understand. So, I smile and put them all back. With the flip of a switch, his world is momentarily right again. And I am an undeserved heroine.
The examples of exasperation are so great in number I could easily write an entire book on that subject alone. So can any caregiver. It is a common bond we all share along with exhaustion, worry, prayer, at times anger, and frustration… the list is never-ending.
Then there is the other side of the coin, the rewards we get from what we are doing. The love we give and receive in return, the joy at the tiniest of accomplishments. The satisfaction of doing something right, something that prolongs the life of someone we love. Here too, the list is never-ending.
We caregivers are jugglers. And we sometimes drop the ball. We wouldn’t be human if we didn’t but the trick is learning to not beat ourselves up for it. The people in each of our lives who never pick up the ball to begin with are the ones who are losing. They will never know how much they have missed. Odds are, they will never care. Some people care too much. Some people don’t care enough. That’s just the way it is.
As for me, I’m just trying to keep my head held high and my balls in the air. And if I shed a tear or two along the way, I know it is alright. I will wipe my eyes and keep going for as long as I am needed.
Being a family caregiver to someone with any form of Dementia is the most difficult job you will ever have. You have to step into the role of parenting a parent or grandparent. We do for them, as they did for us, because we love them.
Like a baby, they often cannot express themselves well enough to tell where it hurts or why they are frightened. They rely on us to make it better. They are no longer capable of knowing right from wrong so we must gently guide them in the right direction. They have no concept of what is safe and what is not so we must do all in our power to keep them from injury. It can drain every bit of energy from you, leaving you exhausted almost constantly, in a much more wearing kind of way than being a new parent.
There are always times when you will be exasperated. For example, when Dad brings me a handful of light bulbs (removed from every lamp in his bedroom) and says he doesn’t understand why they all burn out at the same time. A couple of times a week, at least, he accidentally turns off the wall switch and suddenly, they no longer work. We have been over this more times than I can count but he just doesn’t understand. So, I smile and put them all back. With the flip of a switch, his world is momentarily right again. And I am an undeserved heroine.
The examples of exasperation are so great in number I could easily write an entire book on that subject alone. So can any caregiver. It is a common bond we all share along with exhaustion, worry, prayer, at times anger, and frustration… the list is never-ending.
Then there is the other side of the coin, the rewards we get from what we are doing. The love we give and receive in return, the joy at the tiniest of accomplishments. The satisfaction of doing something right, something that prolongs the life of someone we love. Here too, the list is never-ending.
We caregivers are jugglers. And we sometimes drop the ball. We wouldn’t be human if we didn’t but the trick is learning to not beat ourselves up for it. The people in each of our lives who never pick up the ball to begin with are the ones who are losing. They will never know how much they have missed. Odds are, they will never care. Some people care too much. Some people don’t care enough. That’s just the way it is.
As for me, I’m just trying to keep my head held high and my balls in the air. And if I shed a tear or two along the way, I know it is alright. I will wipe my eyes and keep going for as long as I am needed.
Friday, April 29, 2011
Hold Onto It
April 28, 2011
I’ve said it before and I am going to say it again, “You can not reason with a demented mind. It is absolutely, positively impossible.” I promise you that any attempts to do so will result in a battle fueled by frustration for all parties concerned. No one will walk away victorious. The key is, knowing when it’s time to walk away.
Whenever possible, I try to change the subject but the level of his current fixation determines whether that will work or not. At other times, a distraction will work to sidetrack his thoughts. But if all else fails, there is simply no other choice…it’s time to walk away.
Sometimes when I retreat, I feel as if I am running away but I’ve come to understand that in reality, it can become simply a matter of my survival. When you are caring for someone you love, you have to remember to first take care of yourself. Nobody is going to do it for you, anymore than they will volunteer to take the weight off your shoulders. That’s just the way it is.
There is nothing easy when you are trying to function 24/7 with someone who has Alzheimer’s. It isn’t easy for the person living it and it isn’t easy for the person taking care of them. Hell, the bottom line is, it isn’t easy for anyone who comes in contact with it!
Dad has been more confused, more disoriented, more depressed, more uncommunicative, more apt to fall into favorite repetitive stories, and even less steady on his feet for the past few weeks. His lab work is good and he isn’t on any new meds that would be causing any more side effects than usual. His weight, Pulse Oxygen and Blood Pressure have been running consistently in very good range for him. He eats well and sleeps well. He is mentally deteriorating much faster now while he seems to have, in many ways stopped his physical deterioration.
He has been much more antagonistic than usual. He acts as if he is spoiling for an argument sometimes. I don’t know if it’s the Alzheimer’s or if he is somehow aware that Easter Sunday 2011 made it exactly 1 year since Mom died. It could easily be a combination of both or something all together different.
I can’t believe it’s been a whole year. I can picture the last 24 hrs of her life so clearly, down to the minutest details. I have often wished over this past year that I could erase parts of it. At the same time, I have prayed that I will never forget others.
Dad doesn’t have that luxury. The Alzheimer’s that plagues him is in control. It takes away as many good memories as it does the bad. Over time it changes details, people, names, dates, times, places, and events. It spins deluded, convoluted, and quite often nonsensical memories that trail in its wake.
Dad is starting to have a lot more episodes where he doesn’t recognize the family that lives locally or even in his home. Often, he becomes agitated for no apparent reason. Until recently, it was fairly easy to isolate things that disturbed him and once they were corrected to his satisfaction, he would settle down. Lately, his reasoning makes no sense so it’s virtually impossible to figure it out or to correct it.
The hardest of all is watching him becoming more delusional. Tonight at dinner, he told me an elaborate story about how he was once a weatherman. It started out that he had to learn all about weather as a pilot, “Not during the war of course because the military told you all you needed to know about the weather. It was their job to worry about it. All you had to worry about over there was doing your job and keeping your ass from getting shot down so you could go home.” I was floored when his story turned from the usual wartime memories to end up with him explaining that he was a weatherman on T.V. “for quite some time until they brought in that bald headed guy I can’t stand (Jim Cantore)”. If I had been a stranger listening to the tale he was telling, I would probably have believed him because he sounded so sure of the details. He even went so far as to say that he hasn’t liked Jim Cantore since the day he met him and knew he was going to be his replacement. “Of course, that was long before your time.” He assured me. I nodded and asked questions when it seemed he wanted me to but mostly, I just let him spin his fantasy until it played out. Sometimes, the greatest gift we can give as a caregiver is to simply listen.
At another point today, Dad wanted to know where everybody was. I explained that Melissa had taken all four of the kids home to her house. He quietly said, “I never would have thought you were that kind of woman.” Startled, I asked what he meant. He replied, “I never would have thought you were the type of woman who would give your children to somebody else to raise. I would think you would want to do it yourself.”
“Dad, three of those children are Melissa’s. Jordyn is mine. We take care of hers when she’s at work and she takes care of them and Jordyn when she isn’t. We help each other out.”
“I know that!” He interjected sharply before he shook his head sadly, “Who helps her with them? She shouldn’t have to take care of all those children by herself! That’s too much for her to do.”
“We do.” I said softly. “We help her a lot, Dad. And she helps me a lot by taking Jordyn and giving us a break from taking care of kids. I think we both need a break sometimes.”
“I love those children and I think most of them are the cutest kids I have ever seen. I want them here. They belong at home with you. Besides, she doesn’t have any help over wherever she is with them.” His agitation steadily grew, “Children should be with their mother!”
“Dad,” I quietly tried to reach him, “They are. Cameryn, Ayla and TyTy are Melissa’s children. Jordyn is mine. I am helping her raise her children and she is helping me raise mine. We are a blended family. I thank God every day that we have most of my children and grandchildren living near us but sometimes we all need a break. Melissa’s children need to be with her at their home.”
He rose from his chair and glared at me as he excused himself to go to the bathroom. On his way out of the room, he said quite clearly, “She shouldn’t have to do it alone. And if you were a good mother, you wouldn’t let her. You would be raising your own damn children.”
With tears in my eyes, I made my way downstairs. It was lost. Not a battle… not a war… but a piece of my heart. There are things about Alzheimer’s you cannot escape. There are things you cannot ignore. There are things you will never be able to forget. There are things that break your heart and attempt to shatter your very self. If you don’t have strength to draw on from the very depths of your soul, my advice to you is to get out. Put your loved ones in the hands of someone who can be detached to some degree because this a job that will breathe joy into you at times and suck it right out of you at others. I promise you this, it can be very hard to pick up the shattered pieces and go on sometimes. But if this is what you are meant to do, you will do it because it’s the only thing you can do. And if you are doing this all because you love someone then the strength you seek is already inside you. Find it… use it… hold onto it!
I’ve said it before and I am going to say it again, “You can not reason with a demented mind. It is absolutely, positively impossible.” I promise you that any attempts to do so will result in a battle fueled by frustration for all parties concerned. No one will walk away victorious. The key is, knowing when it’s time to walk away.
Whenever possible, I try to change the subject but the level of his current fixation determines whether that will work or not. At other times, a distraction will work to sidetrack his thoughts. But if all else fails, there is simply no other choice…it’s time to walk away.
Sometimes when I retreat, I feel as if I am running away but I’ve come to understand that in reality, it can become simply a matter of my survival. When you are caring for someone you love, you have to remember to first take care of yourself. Nobody is going to do it for you, anymore than they will volunteer to take the weight off your shoulders. That’s just the way it is.
There is nothing easy when you are trying to function 24/7 with someone who has Alzheimer’s. It isn’t easy for the person living it and it isn’t easy for the person taking care of them. Hell, the bottom line is, it isn’t easy for anyone who comes in contact with it!
Dad has been more confused, more disoriented, more depressed, more uncommunicative, more apt to fall into favorite repetitive stories, and even less steady on his feet for the past few weeks. His lab work is good and he isn’t on any new meds that would be causing any more side effects than usual. His weight, Pulse Oxygen and Blood Pressure have been running consistently in very good range for him. He eats well and sleeps well. He is mentally deteriorating much faster now while he seems to have, in many ways stopped his physical deterioration.
He has been much more antagonistic than usual. He acts as if he is spoiling for an argument sometimes. I don’t know if it’s the Alzheimer’s or if he is somehow aware that Easter Sunday 2011 made it exactly 1 year since Mom died. It could easily be a combination of both or something all together different.
I can’t believe it’s been a whole year. I can picture the last 24 hrs of her life so clearly, down to the minutest details. I have often wished over this past year that I could erase parts of it. At the same time, I have prayed that I will never forget others.
Dad doesn’t have that luxury. The Alzheimer’s that plagues him is in control. It takes away as many good memories as it does the bad. Over time it changes details, people, names, dates, times, places, and events. It spins deluded, convoluted, and quite often nonsensical memories that trail in its wake.
Dad is starting to have a lot more episodes where he doesn’t recognize the family that lives locally or even in his home. Often, he becomes agitated for no apparent reason. Until recently, it was fairly easy to isolate things that disturbed him and once they were corrected to his satisfaction, he would settle down. Lately, his reasoning makes no sense so it’s virtually impossible to figure it out or to correct it.
The hardest of all is watching him becoming more delusional. Tonight at dinner, he told me an elaborate story about how he was once a weatherman. It started out that he had to learn all about weather as a pilot, “Not during the war of course because the military told you all you needed to know about the weather. It was their job to worry about it. All you had to worry about over there was doing your job and keeping your ass from getting shot down so you could go home.” I was floored when his story turned from the usual wartime memories to end up with him explaining that he was a weatherman on T.V. “for quite some time until they brought in that bald headed guy I can’t stand (Jim Cantore)”. If I had been a stranger listening to the tale he was telling, I would probably have believed him because he sounded so sure of the details. He even went so far as to say that he hasn’t liked Jim Cantore since the day he met him and knew he was going to be his replacement. “Of course, that was long before your time.” He assured me. I nodded and asked questions when it seemed he wanted me to but mostly, I just let him spin his fantasy until it played out. Sometimes, the greatest gift we can give as a caregiver is to simply listen.
At another point today, Dad wanted to know where everybody was. I explained that Melissa had taken all four of the kids home to her house. He quietly said, “I never would have thought you were that kind of woman.” Startled, I asked what he meant. He replied, “I never would have thought you were the type of woman who would give your children to somebody else to raise. I would think you would want to do it yourself.”
“Dad, three of those children are Melissa’s. Jordyn is mine. We take care of hers when she’s at work and she takes care of them and Jordyn when she isn’t. We help each other out.”
“I know that!” He interjected sharply before he shook his head sadly, “Who helps her with them? She shouldn’t have to take care of all those children by herself! That’s too much for her to do.”
“We do.” I said softly. “We help her a lot, Dad. And she helps me a lot by taking Jordyn and giving us a break from taking care of kids. I think we both need a break sometimes.”
“I love those children and I think most of them are the cutest kids I have ever seen. I want them here. They belong at home with you. Besides, she doesn’t have any help over wherever she is with them.” His agitation steadily grew, “Children should be with their mother!”
“Dad,” I quietly tried to reach him, “They are. Cameryn, Ayla and TyTy are Melissa’s children. Jordyn is mine. I am helping her raise her children and she is helping me raise mine. We are a blended family. I thank God every day that we have most of my children and grandchildren living near us but sometimes we all need a break. Melissa’s children need to be with her at their home.”
He rose from his chair and glared at me as he excused himself to go to the bathroom. On his way out of the room, he said quite clearly, “She shouldn’t have to do it alone. And if you were a good mother, you wouldn’t let her. You would be raising your own damn children.”
With tears in my eyes, I made my way downstairs. It was lost. Not a battle… not a war… but a piece of my heart. There are things about Alzheimer’s you cannot escape. There are things you cannot ignore. There are things you will never be able to forget. There are things that break your heart and attempt to shatter your very self. If you don’t have strength to draw on from the very depths of your soul, my advice to you is to get out. Put your loved ones in the hands of someone who can be detached to some degree because this a job that will breathe joy into you at times and suck it right out of you at others. I promise you this, it can be very hard to pick up the shattered pieces and go on sometimes. But if this is what you are meant to do, you will do it because it’s the only thing you can do. And if you are doing this all because you love someone then the strength you seek is already inside you. Find it… use it… hold onto it!
Tuesday, April 12, 2011
Cannot vs. Can
The move into the beginning of the Severe Stage of Alzheimer’s kind of took me by surprise. It happened gradually. Over the last few weeks, Dad has become more confused, more disoriented, more prone to emotional outbursts, more combative, more likely to blame others for things he has done, more intense on the things he fixates on, more likely to make things up to fill in memory gaps in the stories he repeatedly tells. Then you have the things he is less… less able to recognize family members who live outside our home, less able to remember something that happened moments before, less able to complete a simple task, even with direction.
There is a wonderful poem (anonymous) that was written for Cancer patients. I am going to share it here. It is full of promise.
What Cancer CANNOT Do
Cancer is so limited---
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot invade the soul,
It cannot steal eternal life,
It cannot conquer the spirit.
Now, let’s relate that to Alzheimer’s…
What Alzheimer’s CAN Do
Alzheimer’s is so limiting---
It can cripple love,
It can shatter hope,
It can corrode faith,
It can destroy peace,
It can kill friendship,
It can suppress memories,
It can silence courage,
It can invade the soul,
It can conquer the spirit.
I purposely left out one line of the poem as it is the only thing the two have in common… IT CANNOT STEAL ETERNAL LIFE! It is a robbing disease. It steals everything from you. With Alzheimer’s, there is NO promise other than it will rob you blind.
Do I sound angry? I have a right to be! Day in and day out, I watch this disease steal a tiny bit more of someone I love very much.
I pray for strength, understanding and patience. I pray a miracle will happen and someone will someday find a cause and a cure. I pray for all the others who are in my shoes providing full time care to their loved ones. I also pray that the people who read this never have to LIVE it. I know I couldn’t do any of this if I didn’t believe in the power of prayer.
I’m not preaching to anyone. I am simply telling it the way I see it because I am here living it. I am dealing with Dementia.
There is a wonderful poem (anonymous) that was written for Cancer patients. I am going to share it here. It is full of promise.
What Cancer CANNOT Do
Cancer is so limited---
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot invade the soul,
It cannot steal eternal life,
It cannot conquer the spirit.
Now, let’s relate that to Alzheimer’s…
What Alzheimer’s CAN Do
Alzheimer’s is so limiting---
It can cripple love,
It can shatter hope,
It can corrode faith,
It can destroy peace,
It can kill friendship,
It can suppress memories,
It can silence courage,
It can invade the soul,
It can conquer the spirit.
I purposely left out one line of the poem as it is the only thing the two have in common… IT CANNOT STEAL ETERNAL LIFE! It is a robbing disease. It steals everything from you. With Alzheimer’s, there is NO promise other than it will rob you blind.
Do I sound angry? I have a right to be! Day in and day out, I watch this disease steal a tiny bit more of someone I love very much.
I pray for strength, understanding and patience. I pray a miracle will happen and someone will someday find a cause and a cure. I pray for all the others who are in my shoes providing full time care to their loved ones. I also pray that the people who read this never have to LIVE it. I know I couldn’t do any of this if I didn’t believe in the power of prayer.
I’m not preaching to anyone. I am simply telling it the way I see it because I am here living it. I am dealing with Dementia.
Monday, April 4, 2011
I'm On a Soapbox (Let Me Vent)
There is no logic to Dementia or Alzheimer's. There is no consistency and so far there is no solution. There is no cure. There is little hope. At best, there are a myriad of drugs that can slow its progression but most of them are extremely expensive and many are slow to get approval by the FDA. Worse yet, most of them aren’t capable of making a drastic difference, they simply slow things down a little. Alzheimer’s is insidious beyond belief.
Recent changes to Medicare Prescription Plans have made a great many of these types of medications ineligible for coverage. Others are so ridiculously priced to begin with that the portion you are left paying out-of-pocket (for a 30 day supply) costs more than what an average family spends on groceries for a week. Dad has a monthly injection I give him that is $1485 PER SHOT! With his old insurance, his co-pay was $50 a month. With the new Medicare Plan his co-pay is currently $791.
Introducing Medicare Part D otherwise referred to as Donut Hole Insurance. There are 4 stages to this nightmare insurance policy brought to you by the US Government (via a letter Dad received a few days ago)…
Stage 1- Yearly Deductible is around $300 (we had that met by the 2nd week of Jan.) Stage 2- Initial Coverage the plan covers part of the cost and you cover the rest (in our case they cover about 35%) until you reach app. $3,000 year-to-date “total drug costs” (we’re over ½ way there). Stage 3 Coverage Gap (which I estimate we will enter within the next 4 weeks)- You will receive a discount on brand name drugs and you pay ONLY 93% of the costs on generic drugs. You stay in this stage until the amount of year-to-date “out-of-pocket costs” reaches app $5,000. At this rate it shouldn’t take us very long to move to Stage 4- Catastrophic Coverage. During this payment stage, the plan pays most of the cost for your covered drugs. You generally stay in this stage for the rest of the plan year.
***Please note the ambiguous wording given by them. Phone calls are even more frustrating because everyone insists this is the best solution for someone who takes as many different medications as Dad does. Currently, he takes 29 different medications orally and 2 different types of injections at home.
How exactly does the government expect to prolong the lives of the elderly when they allow the pharmaceutical companies to pillage, rape and plunder the American people? How do they expect the elderly to pay their rent or mortgages, buy groceries, while paying outrageous costs for medical care and prescription medications? How can they hold their heads up knowing that there is no such thing as a decent government run nursing home in this country (and if there is, I stand corrected and am amazed)? How can they close their eyes to the injustices, neglect and abuse that the American elderly are subjected to without punishing the offenders to the highest letter the law will allow? I often wonder what these people do with the elderly in their own lives (parents, grandparents, etc.)
If I were an elected official, I would bend over backward for this dwindling segment of the population. I would bust my ass to keep them alive as long as possible. You see, unlike subsequent generations, the elderly still have faith in the government. They always pay their taxes, they don’t ever cheat the government, the elderly go out of their way to follow the very letter of the law. They have unwavering devotion to our country and yet most government offices seem to relegate them to the back burner in every case. You get better health care assistance if you are a crack addict with 5 kids living in the projects and selling sex for hire than you do if you are elderly.
It infuriates me to see the way so many Americans treat the elderly, when they aren’t ignoring them entirely. Our nursing homes are more often than not substandard and the funding is so sparse (no matter who it’s run by) that there is a shortage of both Registered Nurses and LPNs (the ones there are, are overworked and usually underpaid), a shortage of doctors who give a damn, a shortage of Caregivers that have more than the minimum qualifications. I can’t think of a single country in the WORLD that treats the elderly so poorly!
I am angry and I am going to keep making it my business to demand answers from the medical people we encounter regularly, our insurance companies, Medicare, Social Security, the Federal Government in general.
I am going to continue to fight a government that allows crimes against the elderly go unpunished. A system that will allow someone to neglect or abuse an elderly person and then let them open a business that provides elderly care is a system that needs to change. I am only one small voice but I will S-C-R-E-A-M to be heard!
Recent changes to Medicare Prescription Plans have made a great many of these types of medications ineligible for coverage. Others are so ridiculously priced to begin with that the portion you are left paying out-of-pocket (for a 30 day supply) costs more than what an average family spends on groceries for a week. Dad has a monthly injection I give him that is $1485 PER SHOT! With his old insurance, his co-pay was $50 a month. With the new Medicare Plan his co-pay is currently $791.
Introducing Medicare Part D otherwise referred to as Donut Hole Insurance. There are 4 stages to this nightmare insurance policy brought to you by the US Government (via a letter Dad received a few days ago)…
Stage 1- Yearly Deductible is around $300 (we had that met by the 2nd week of Jan.) Stage 2- Initial Coverage the plan covers part of the cost and you cover the rest (in our case they cover about 35%) until you reach app. $3,000 year-to-date “total drug costs” (we’re over ½ way there). Stage 3 Coverage Gap (which I estimate we will enter within the next 4 weeks)- You will receive a discount on brand name drugs and you pay ONLY 93% of the costs on generic drugs. You stay in this stage until the amount of year-to-date “out-of-pocket costs” reaches app $5,000. At this rate it shouldn’t take us very long to move to Stage 4- Catastrophic Coverage. During this payment stage, the plan pays most of the cost for your covered drugs. You generally stay in this stage for the rest of the plan year.
***Please note the ambiguous wording given by them. Phone calls are even more frustrating because everyone insists this is the best solution for someone who takes as many different medications as Dad does. Currently, he takes 29 different medications orally and 2 different types of injections at home.
How exactly does the government expect to prolong the lives of the elderly when they allow the pharmaceutical companies to pillage, rape and plunder the American people? How do they expect the elderly to pay their rent or mortgages, buy groceries, while paying outrageous costs for medical care and prescription medications? How can they hold their heads up knowing that there is no such thing as a decent government run nursing home in this country (and if there is, I stand corrected and am amazed)? How can they close their eyes to the injustices, neglect and abuse that the American elderly are subjected to without punishing the offenders to the highest letter the law will allow? I often wonder what these people do with the elderly in their own lives (parents, grandparents, etc.)
If I were an elected official, I would bend over backward for this dwindling segment of the population. I would bust my ass to keep them alive as long as possible. You see, unlike subsequent generations, the elderly still have faith in the government. They always pay their taxes, they don’t ever cheat the government, the elderly go out of their way to follow the very letter of the law. They have unwavering devotion to our country and yet most government offices seem to relegate them to the back burner in every case. You get better health care assistance if you are a crack addict with 5 kids living in the projects and selling sex for hire than you do if you are elderly.
It infuriates me to see the way so many Americans treat the elderly, when they aren’t ignoring them entirely. Our nursing homes are more often than not substandard and the funding is so sparse (no matter who it’s run by) that there is a shortage of both Registered Nurses and LPNs (the ones there are, are overworked and usually underpaid), a shortage of doctors who give a damn, a shortage of Caregivers that have more than the minimum qualifications. I can’t think of a single country in the WORLD that treats the elderly so poorly!
I am angry and I am going to keep making it my business to demand answers from the medical people we encounter regularly, our insurance companies, Medicare, Social Security, the Federal Government in general.
I am going to continue to fight a government that allows crimes against the elderly go unpunished. A system that will allow someone to neglect or abuse an elderly person and then let them open a business that provides elderly care is a system that needs to change. I am only one small voice but I will S-C-R-E-A-M to be heard!
Sunday, April 3, 2011
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.
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.
Monday, August 16, 2010
The Package Inspector
This is a story I have debated telling since the day it began. I have finally decided to tell it simply because it’s too funny (and sad) not to share it. Please note, Dad does not remember anything about the 27 days of our hospital/rehab/hospital ordeal in June and July. I am thankful he can’t remember these particular events. I hope you will agree, it’s hysterical (and sad) and, that it’s for the best that he doesn’t remember…
On the second day Dad was in rehab, he was sitting in his wheelchair while I straightened up his room. An elderly woman wheeled in and headed straight for him. She rolled to a stop next to him.
“May I help you?” he asked with obvious surprise.
“No,” she replied.
I said hello to her and she turned an icy stare my way. “Go away,” she demanded. She then reached a shaky hand over and placed it on Dad’s knee. He looked at me, shrugged his shoulders and mouthed, “CRAZY”.
I stood there with my mouth gaping as I watched her smile and put her hand back on his leg (on his thigh this time). He politely told her hello. She began humming under her breath as she slowly started to rub his leg. When she didn’t respond, he asked again if he could help her. Once again, there was no response.
Not at all sure what I should do, I casually made my way over to the bed. As I straightened the linens, I pressed the nurse call button. I turned around to see her hand groping his crotch. Thanks to the Depends he was wearing, I don’t think he felt a thing. He was looking from her to me and appeared completely oblivious to where her hand was. I was frantically searching my mind for a way to handle the situation when the nurse walked in. She took the whole scene in with a quick glance.
“Now, Ms. G, let’s leave these nice folks alone to visit.” The nurse gently but firmly disengaged Ms. G’s hand and started to wheel her out.
I thanked the nurse as they were passing me. The old lady turned her head to look at me and leaned in my direction. Her voice was a loud, scratchy hiss, “BITCH! He’s mine and you can’t have him!”
My mouth dropped open as I looked from her enraged face to the smiling face of the nurse. “Welcome to the neighborhood. Ms. G used to have a “friend” in this room. She has trouble remembering he’s gone. She knows she’s not supposed to be in here so just call us if she comes back. Sorry.”
She leaned down and said to the old lady, “Come on, Ms. G, I’ll take you back to your room.”
As they made it to the door, Ms. G started to whine, “It’s my job. I’m the package inspector. Let me finish my job. Why won’t you leave us alone and let me do my job…”
Dad looked at me and shrugged his shoulders. “Poor thing,” he said, “she’s crazy.” He shook his head sadly as he stared at the empty doorway. And as he does with anything distasteful to him, he promptly forgot any of it ever happened.
Our second encounter of another kind with Ms. G came a couple of days later. Dad was stretched out on his bed behind me while I was gathering his daily laundry to be washed overnight and returned the following morning I heard him say, “Well… hello.”
I turned from the closet to see Ms. G wheeled up next to the bed with her hand up the cuff of Dad’s pants leg.
“May I help you?” Dad asked very politely while looking like a deer caught in headlights.
“I’m going to help you,” she said as she slid her hand further up his leg.
He cleared his throat and asked, “What’s your name?”
She began to hum by way of a reply and continued her upward trek, now somewhere in the region of his knee.
With no hesitation this time, I jumped for the nurse call button and summonsed help. “Ms. G, don’t you think you should go back to your own room now?”
She turned to stare blankly at me before she demanded through clenched teeth, “Get out! Can’t you see we want to be alone?”
She had made it to Dad’s thigh by now and realized she could go no higher than his lower thigh with his pants on. Not to be deterred, she simply dropped her other hand onto his lap and began groping him. I was beyond relieved when the nurse walked in. She immediately began trying to untangle Ms. G’s hand from Dad’s pants leg with one hand while she attempted to remove the still groping hand with the other.
As soon as she had a hand free, Ms. G reached a hand out to Dad. Much to my surprise, he asked the nurse to wait a minute and he took it in his own, patting it softly. “Thank you for stopping by,” he told her politely.
She grasped his hand and pulled it to her cheek. “Was it as good for you,” she asked, “as it was for me?”
As the nurse ushered her out of the room, Dad looked up at me with tear-filled eyes. “Poor thing,” he said, “She’s crazy you know. Poor, crazy, lonely thing.”
I am happy to say that Ms. G was successfully kept out of his room after that (or at least to my knowledge she was). But, from then on, when we would encounter her in the halls, Dad would sadly shake his head and say, “Poor thing. Poor crazy, lonely thing”.
And to this day I am convinced he wasn’t at all aware that she tried to feel him up. I’m not sure which I am more thankful for in this case… the Alzheimer’s or the Depends!
On the second day Dad was in rehab, he was sitting in his wheelchair while I straightened up his room. An elderly woman wheeled in and headed straight for him. She rolled to a stop next to him.
“May I help you?” he asked with obvious surprise.
“No,” she replied.
I said hello to her and she turned an icy stare my way. “Go away,” she demanded. She then reached a shaky hand over and placed it on Dad’s knee. He looked at me, shrugged his shoulders and mouthed, “CRAZY”.
I stood there with my mouth gaping as I watched her smile and put her hand back on his leg (on his thigh this time). He politely told her hello. She began humming under her breath as she slowly started to rub his leg. When she didn’t respond, he asked again if he could help her. Once again, there was no response.
Not at all sure what I should do, I casually made my way over to the bed. As I straightened the linens, I pressed the nurse call button. I turned around to see her hand groping his crotch. Thanks to the Depends he was wearing, I don’t think he felt a thing. He was looking from her to me and appeared completely oblivious to where her hand was. I was frantically searching my mind for a way to handle the situation when the nurse walked in. She took the whole scene in with a quick glance.
“Now, Ms. G, let’s leave these nice folks alone to visit.” The nurse gently but firmly disengaged Ms. G’s hand and started to wheel her out.
I thanked the nurse as they were passing me. The old lady turned her head to look at me and leaned in my direction. Her voice was a loud, scratchy hiss, “BITCH! He’s mine and you can’t have him!”
My mouth dropped open as I looked from her enraged face to the smiling face of the nurse. “Welcome to the neighborhood. Ms. G used to have a “friend” in this room. She has trouble remembering he’s gone. She knows she’s not supposed to be in here so just call us if she comes back. Sorry.”
She leaned down and said to the old lady, “Come on, Ms. G, I’ll take you back to your room.”
As they made it to the door, Ms. G started to whine, “It’s my job. I’m the package inspector. Let me finish my job. Why won’t you leave us alone and let me do my job…”
Dad looked at me and shrugged his shoulders. “Poor thing,” he said, “she’s crazy.” He shook his head sadly as he stared at the empty doorway. And as he does with anything distasteful to him, he promptly forgot any of it ever happened.
Our second encounter of another kind with Ms. G came a couple of days later. Dad was stretched out on his bed behind me while I was gathering his daily laundry to be washed overnight and returned the following morning I heard him say, “Well… hello.”
I turned from the closet to see Ms. G wheeled up next to the bed with her hand up the cuff of Dad’s pants leg.
“May I help you?” Dad asked very politely while looking like a deer caught in headlights.
“I’m going to help you,” she said as she slid her hand further up his leg.
He cleared his throat and asked, “What’s your name?”
She began to hum by way of a reply and continued her upward trek, now somewhere in the region of his knee.
With no hesitation this time, I jumped for the nurse call button and summonsed help. “Ms. G, don’t you think you should go back to your own room now?”
She turned to stare blankly at me before she demanded through clenched teeth, “Get out! Can’t you see we want to be alone?”
She had made it to Dad’s thigh by now and realized she could go no higher than his lower thigh with his pants on. Not to be deterred, she simply dropped her other hand onto his lap and began groping him. I was beyond relieved when the nurse walked in. She immediately began trying to untangle Ms. G’s hand from Dad’s pants leg with one hand while she attempted to remove the still groping hand with the other.
As soon as she had a hand free, Ms. G reached a hand out to Dad. Much to my surprise, he asked the nurse to wait a minute and he took it in his own, patting it softly. “Thank you for stopping by,” he told her politely.
She grasped his hand and pulled it to her cheek. “Was it as good for you,” she asked, “as it was for me?”
As the nurse ushered her out of the room, Dad looked up at me with tear-filled eyes. “Poor thing,” he said, “She’s crazy you know. Poor, crazy, lonely thing.”
I am happy to say that Ms. G was successfully kept out of his room after that (or at least to my knowledge she was). But, from then on, when we would encounter her in the halls, Dad would sadly shake his head and say, “Poor thing. Poor crazy, lonely thing”.
And to this day I am convinced he wasn’t at all aware that she tried to feel him up. I’m not sure which I am more thankful for in this case… the Alzheimer’s or the Depends!
Sunday, August 15, 2010
A Sense of Humor Matters
August 14, 2010
Dad has been in Physical Therapy, Occupational Therapy and Speech Therapy for a month now. Signs of physical improvement are so great he was released from OT this week and PT has been reduced to twice a week. But as his physical capabilities have increased, his mental capabilities have slowly been decreasing.
At a doctor’s appointment on Friday, Dad was asked to fill out a questionnaire. He asked me how old his parents were when they died and what their medical history was (2 questions I don’t know the answers to). When I told him I wasn’t sure, he proceeded to make up answers. He couldn’t remember how many children he has, their ages or if they are living or deceased. Finally, he became to frustrated to finish it and asked me if I would do it for him. My heart breaks to watch him struggle with the tiniest of things, things that most of us take for granted every day in our own lives.
On a note of levity, I cracked up when I came to the section regarding his educational background. He had listed that he had completed 2 years of college, then checked the box that said, “reads and writes poorly”. I explained they were trying to determine literacy. He insisted (with a twinkle in his eyes), that he can’t even read his own writing.
For almost every negative we encounter together, he manages to find humor somehow, and for that I am eternally grateful.
When the doctor came into the examining room, he announced that the lab work looked good. I was overjoyed to hear that his kidney function had gone from 32% three months ago to 50% currently. The doctor and I both burst out laughing at his cheerful response, “That’s great! Now I can start pissing on myself more often!”
Tonight ended on rather a sour note. Dad lives for watching football games on TV. It doesn’t matter who is playing, or what league it is, and he usually has it muted so you can’t hear a thing. It doesn’t matter to him it’s about WATCHING the game. He asked me all day what day it was. And I told him repeatedly it was Sat. He started looking for a game on TV about 7:00. After an hour of me trying to check the listings on the TV Guide channel, with him taking the remote away periodically to channel surf (his version, which means randomly pushing buttons or not pointing it at the TV when he IS pushing them), he finally gave up. Not because he believed there wasn’t a game on, but rather because he was angry he couldn’t locate the one he was sure WAS on.
He insisted there had to be one on because the newspaper had listed all of today’s game times. I tried to point out it didn’t say anything about it being on TV. In a fit of pique, he threw down the newspaper and the remote and announced he was going to bed because “the damn TV is broken anyway!”
We’ll see what tomorrow brings…
Dad has been in Physical Therapy, Occupational Therapy and Speech Therapy for a month now. Signs of physical improvement are so great he was released from OT this week and PT has been reduced to twice a week. But as his physical capabilities have increased, his mental capabilities have slowly been decreasing.
At a doctor’s appointment on Friday, Dad was asked to fill out a questionnaire. He asked me how old his parents were when they died and what their medical history was (2 questions I don’t know the answers to). When I told him I wasn’t sure, he proceeded to make up answers. He couldn’t remember how many children he has, their ages or if they are living or deceased. Finally, he became to frustrated to finish it and asked me if I would do it for him. My heart breaks to watch him struggle with the tiniest of things, things that most of us take for granted every day in our own lives.
On a note of levity, I cracked up when I came to the section regarding his educational background. He had listed that he had completed 2 years of college, then checked the box that said, “reads and writes poorly”. I explained they were trying to determine literacy. He insisted (with a twinkle in his eyes), that he can’t even read his own writing.
For almost every negative we encounter together, he manages to find humor somehow, and for that I am eternally grateful.
When the doctor came into the examining room, he announced that the lab work looked good. I was overjoyed to hear that his kidney function had gone from 32% three months ago to 50% currently. The doctor and I both burst out laughing at his cheerful response, “That’s great! Now I can start pissing on myself more often!”
Tonight ended on rather a sour note. Dad lives for watching football games on TV. It doesn’t matter who is playing, or what league it is, and he usually has it muted so you can’t hear a thing. It doesn’t matter to him it’s about WATCHING the game. He asked me all day what day it was. And I told him repeatedly it was Sat. He started looking for a game on TV about 7:00. After an hour of me trying to check the listings on the TV Guide channel, with him taking the remote away periodically to channel surf (his version, which means randomly pushing buttons or not pointing it at the TV when he IS pushing them), he finally gave up. Not because he believed there wasn’t a game on, but rather because he was angry he couldn’t locate the one he was sure WAS on.
He insisted there had to be one on because the newspaper had listed all of today’s game times. I tried to point out it didn’t say anything about it being on TV. In a fit of pique, he threw down the newspaper and the remote and announced he was going to bed because “the damn TV is broken anyway!”
We’ll see what tomorrow brings…
Friday, May 21, 2010
May 20, 2010
I got up this morning excited at the prospect of going for a long walk on the beach. My solitary walks have become a vital part of my mental health routine. I haven’t been able to resume the habit since 3 days before Mom was hospitalized (over a month ago).
I realized I had neither hat nor sunglasses as I headed home from getting the boys off to school. I decided to go home, change into my swimsuit (might as well get some sun) and grab both. But, when I arrived, Richard was up and getting ready to go job hunting. I, of course, have to be here so I settled on a compromise of going later when he got back home.
As usual, God had a plan. If I had gone, I would have missed a very important telephone call. Just before Richard left, the house phone rang and he said it was for me. I absolutely never get calls on that phone. He brought it to me and sat down to see who it was.
It was the State Attorney’s office calling to tell me, “In light of your mother’s recent death, we don’t have enough evidence to take Ms. M (T, the infamous ex-caregiver) to trial. Her deposition is null and void because she can’t testify now.
We want to offer her a diversion package that would, of course, include a stipulation that she can never have contact with anyone in the family again. If she did, she would be incarcerated.”
“But what about stopping her from being able to do this again?” I asked as I felt panic begin to rise inside me. “Don’t you get that she preys on the elderly? She takes their money and drains them dry!”
“Well, we do not have the authority to take away her license.”
“What license?” I was almost shrieking. “She is not licensed to practice in the medical field. She let it lapse a couple of years ago and hasn’t renewed it as of last week. Look it up on the internet. I do every couple of months! Her business license???”
He interjected, “You would have to get in touch with the licensing bureau about that…”
“Look, Mom couldn’t have testified anyway. I have tried to tell you that before. She had DEMENTIA. I want to know what can be done to stop T from going out and doing the same thing to other elderly people?” I cried, “The elderly need protection from people like her! I don’t care whether she goes to jail or not. I just don’t want her doing this to anybody else!”
His voice filled with compassion at my outburst, “I will see if we can get a condition set into motion that she can NOT work with the elderly again. I’ll see what I can do and give you a call back, probably this afternoon.”
“I’m here to help you,” he reminded softly. “If this goes forward, your dad is going to have to come in and give us a deposition.”
My voice with thick with the frustration I felt, “He isn’t capable of that! He has Alzheimer’s. He is so confused on the T issue, he thinks she was stealing their pills and going to Mexico to sell them. Half the time, he will tell you that and the other half of the time, He will tell you he thinks she is in jail. He can’t remember what he ate for dinner 5 minutes after he leaves the table!”
“If we attempt to prosecute, we won’t have any choice. His condition will be taken into consideration but he will HAVE to give us the deposition. Let me see if I can get the no elderly condition to go through first.”
As I hung up the phone, I was livid! I get that Mom was T’s main victim. I get that maybe T shouldn’t go to jail over the missing pills (I still think, with good reason, someone else was stealing them). But what about the unauthorized charges on Dad’s credit card? What about the evidence of neglect (and her poor judgment) as time went on? What about the things that were stolen from the house (yes, I know it couldn’t be proven but she and her employees were the only ones here when the items of considerable value went missing)! I do not get why she should be allowed to have ANY opportunity to EVER prey on another elderly person again.
I am indignant! I am furious! I am in physical pain at the thought that she will get a slap on the wrist after all she has put this family through. And I am sickened by the possibility of not being able to prevent it from happening to someone else…
***** If you are lost about T and how she fits in, please see “It Only Takes One Bad Caregiver to Ruin You” **** originally published on this blog on March 22, 2010.
I got up this morning excited at the prospect of going for a long walk on the beach. My solitary walks have become a vital part of my mental health routine. I haven’t been able to resume the habit since 3 days before Mom was hospitalized (over a month ago).
I realized I had neither hat nor sunglasses as I headed home from getting the boys off to school. I decided to go home, change into my swimsuit (might as well get some sun) and grab both. But, when I arrived, Richard was up and getting ready to go job hunting. I, of course, have to be here so I settled on a compromise of going later when he got back home.
As usual, God had a plan. If I had gone, I would have missed a very important telephone call. Just before Richard left, the house phone rang and he said it was for me. I absolutely never get calls on that phone. He brought it to me and sat down to see who it was.
It was the State Attorney’s office calling to tell me, “In light of your mother’s recent death, we don’t have enough evidence to take Ms. M (T, the infamous ex-caregiver) to trial. Her deposition is null and void because she can’t testify now.
We want to offer her a diversion package that would, of course, include a stipulation that she can never have contact with anyone in the family again. If she did, she would be incarcerated.”
“But what about stopping her from being able to do this again?” I asked as I felt panic begin to rise inside me. “Don’t you get that she preys on the elderly? She takes their money and drains them dry!”
“Well, we do not have the authority to take away her license.”
“What license?” I was almost shrieking. “She is not licensed to practice in the medical field. She let it lapse a couple of years ago and hasn’t renewed it as of last week. Look it up on the internet. I do every couple of months! Her business license???”
He interjected, “You would have to get in touch with the licensing bureau about that…”
“Look, Mom couldn’t have testified anyway. I have tried to tell you that before. She had DEMENTIA. I want to know what can be done to stop T from going out and doing the same thing to other elderly people?” I cried, “The elderly need protection from people like her! I don’t care whether she goes to jail or not. I just don’t want her doing this to anybody else!”
His voice filled with compassion at my outburst, “I will see if we can get a condition set into motion that she can NOT work with the elderly again. I’ll see what I can do and give you a call back, probably this afternoon.”
“I’m here to help you,” he reminded softly. “If this goes forward, your dad is going to have to come in and give us a deposition.”
My voice with thick with the frustration I felt, “He isn’t capable of that! He has Alzheimer’s. He is so confused on the T issue, he thinks she was stealing their pills and going to Mexico to sell them. Half the time, he will tell you that and the other half of the time, He will tell you he thinks she is in jail. He can’t remember what he ate for dinner 5 minutes after he leaves the table!”
“If we attempt to prosecute, we won’t have any choice. His condition will be taken into consideration but he will HAVE to give us the deposition. Let me see if I can get the no elderly condition to go through first.”
As I hung up the phone, I was livid! I get that Mom was T’s main victim. I get that maybe T shouldn’t go to jail over the missing pills (I still think, with good reason, someone else was stealing them). But what about the unauthorized charges on Dad’s credit card? What about the evidence of neglect (and her poor judgment) as time went on? What about the things that were stolen from the house (yes, I know it couldn’t be proven but she and her employees were the only ones here when the items of considerable value went missing)! I do not get why she should be allowed to have ANY opportunity to EVER prey on another elderly person again.
I am indignant! I am furious! I am in physical pain at the thought that she will get a slap on the wrist after all she has put this family through. And I am sickened by the possibility of not being able to prevent it from happening to someone else…
***** If you are lost about T and how she fits in, please see “It Only Takes One Bad Caregiver to Ruin You” **** originally published on this blog on March 22, 2010.
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