Tuesday I called the nursing home to check on Dad. I spoke with the Supervisor and she immediately apologized to me about not calling me on Monday. Dad lost 6 pounds in one week, so his physician took him off his Alzheimer's medication, Aracept. Apparently Aracept has a side effect of weight loss. Funny how this had never been an issue in the three and a half years Dad has been in the nursing home...
I reminded her it is suppose to be in Dad's chart to notify me with any change in medication or change of treatment and it also states I can be called on my land line or cell any time of the day or night...she apologized and told me, "It would never happen again."....
I asked how Dad was eating, if he was nauseated, throwing up, constipated or had diarrhea. She told me Dad was eating at 70, 80, 90 and 100% and he had no complaints or problems other than the weight loss. I told her we wanted Dad back on the Aracept ASAP and called Dad's physician immediately after I hung up from the nursing home...
Within the hour, I had Dad back on the Aracept. I had emailed Dad's physician because I wanted him to know how unhappy I was with the nursing home and ask about his reasons for removing Dad from his Alzheimer's meds and inquire if he thought the severe weight loss could be caused by cancer...Dad has a history of prostate problems he ignored prior to entering the nursing home and I wanted to make sure the doctor had that information.
Wednesday, Dad's physician answered my email letting me know he ordered blood tests and a list of all Dad's medications. He explained he wanted to switch Dad from Aracept to Namenda as Namenda is better for later stages of Alzheimer's and does not have the weight loss side effect. If this had been explained to me by the Supervisor of the nursing home, I would not have been so upset.
Dad's physician said he hoped there would not be a problem with Hospice for Dad taking the Namenda. In my reply email to the doctor, I told him if he felt it was best for Dad, that is what we will do, the HELL with hospice! If they don't like it, we will fire them. Normally, I cannot sing my praises for hospice high or loud enough...but in Dad's case, with the hospice organization we are using, I am not impressed.
There has been a steady change of personnel each six month period and I am not informed until I call and inquire why I am not getting my weekly reports... not good.
Today, I got the results of the blood tests done on Dad and remarkably, no infection, kidneys good, thyroid levels good, sugar good although Dad is now considered borderline diabetic. Dad weighs 134 pounds and the doctor feels Dad is advancing further into the later stages of Alzheimer's and the best plan is to keep Dad happy --- so we are in total agreement.
The doctor explained the more sugar in the diet can often present more infections (reason for the diabetic diet...again, not explained to me) but since Dad is losing so much weight, the Doctor felt a regular diet was better for him. We cannot afford any infections with Dad's pinkie toe cancer, eye cancer, upper lip cancer, melanoma on his temple, and the teeth the visiting dentist wants to pull....which we will not allow as long as Dad is not in pain...but Dad won't eat if he has the more bland food. The doctor put Dad on an appetite enhancer, Megase, to help Dad want to eat...
The doctor also explained further testing on Dad to check for cancer is too invasive for Dad...so we just keep him happy and pain free. The doctor continues to do the cryotherapy treatments to prevent infection and the growth getting too much larger.
I call less and less attempting to connect with Dad as he seems to be always sleeping when I call. I call and check on him, talk to the caregivers, but Dad seems so much more out of it...
I know from experience with my Mother in law's Alzheimer's, the later stages of Alzheimer's, often the patient loses weight, loses appetite, even forgets how to eat, wants to sleep more, and basically succumbs to the rhythm of the body doing its work to shut down...
I told the doctor if Dad is in the later stages of Alzheimer's and does not want to eat, we knew it would be worse for his body to force food into him...it would interfere with the body shutting down. Most people think it is cruel and their loved one will starve to death unless they put in a feeding tube or persuade them to eat...
Nothing could be further from the truth. When the body is shutting down, food, even liquid supplements complicate and interfere with the process, often causing the patient more problems and even pain. It is actually a very peaceful process. I witnessed it with my Mother in law. I sat by her bedside the last two weeks of her life, and her face glowed...she never flinched in pain, instead smiled occasionally being very calm and quiet.
Dad often will look like he is ready to check out....then perk up, full of personality...but I just can't shake this sense of dread I have...the process will begin in God's perfect timing...
We are prepared, arrangements are made, we accept God's will, but it still does not make it any easier...
Thursday, January 31, 2013
Sunday, January 27, 2013
I Didn't Go...
I ended up not going to CA. I have been checking on Dad almost daily and he is eating much better now that he is not eating the diabetic food...his attitude has improved as well and he is re-joining the activities and back to his joyful self.
I am relieved to hear this. We have such a full travel schedule planned this year...each month from February through July, both of us or myself alone with be traveling to California for various family events...so I will be popping in to see Dad more often.
Between expected deliveries for my daughter and my nephew's wife, baby showers, bridal and bachelor/bachelorette parties, my daughter and niece's weddings, graduations, birthdays, company visiting, and family celebrations, we will be doing good if we are still standing by August!
My left ankle is still mending and the more I can rest it and let it heal the better it will be for me in moving around and doing all the running around we have to do.
Thank you to everyone for all your concern, prayers and positive thoughts for my Dad. I love you all!
I am relieved to hear this. We have such a full travel schedule planned this year...each month from February through July, both of us or myself alone with be traveling to California for various family events...so I will be popping in to see Dad more often.
Between expected deliveries for my daughter and my nephew's wife, baby showers, bridal and bachelor/bachelorette parties, my daughter and niece's weddings, graduations, birthdays, company visiting, and family celebrations, we will be doing good if we are still standing by August!
My left ankle is still mending and the more I can rest it and let it heal the better it will be for me in moving around and doing all the running around we have to do.
Thank you to everyone for all your concern, prayers and positive thoughts for my Dad. I love you all!
Friday, January 18, 2013
A Much Better Visit...
Mom went to visit Dad today. She found him sitting in his wheel chair in the hallway by the nurses station...when she called to him, he opened his eyes, saw her, smiled and called her "Lynnie".
They chatted and Dad seemed so much better in his disposition. The male caregiver came over to tell Mom Dad was eating so much better. He told Mom they all help him if he doesn't want to feed himself. He reminded Dad to make sure he eats all his food otherwise Donna will call and get upset when she finds out... Mom had to muffle a chuckle... Several other staff members came over to visit Dad and Mom.
"Pickles" came over and ask Dad if he knew her name. Dad answered, "That's a very good question!" and everyone laughed. Dad nicknamed her but some times can't remember her name...so Mom helped him remember and Dad laughed out loud.
"Pickles" told Mom she gave Dad his shower this morning, but had to cut it short as Dad was trying to get her to join him in the shower...more laughter commenced...
Dad turned when he heard the food carts coming down the hallways...even if he didn't hear it, I have no doubt he could smell it. It always smells so good. Dad turned to Mom and told her he was hungry.
Dad was wheeled into the lunch room and served immediately. Mom fed him his baked fish with tartar sauce, scalloped potatoes with cheese, mixed vegetables, cold slaw, red jello, bread and butter, coffee, milk with ice cream for dessert. Dad ate every morsel.
Several of the usual residents ate near by. The staff had posted signs around asking family members to not visit their loved ones if they were ill. Mom visited with the other residents as she always does when she visits Dad.
Dad wasn't very talkative. He only answered Mom when she asked him a specific question. Dad rambled on about dating someone because it was his job and some other stuff which did not make any sense.
Mom meant to bring her cell phone so I could talk with Dad...but she forgot to charge her batteries and the phone was dead. She was very happy to have the horrible previous visit erased from her memory replacing it with the much better one today.
I am so relieved to hear about this good visit, Dad's increased appetite and better attitude.
They chatted and Dad seemed so much better in his disposition. The male caregiver came over to tell Mom Dad was eating so much better. He told Mom they all help him if he doesn't want to feed himself. He reminded Dad to make sure he eats all his food otherwise Donna will call and get upset when she finds out... Mom had to muffle a chuckle... Several other staff members came over to visit Dad and Mom.
"Pickles" came over and ask Dad if he knew her name. Dad answered, "That's a very good question!" and everyone laughed. Dad nicknamed her but some times can't remember her name...so Mom helped him remember and Dad laughed out loud.
"Pickles" told Mom she gave Dad his shower this morning, but had to cut it short as Dad was trying to get her to join him in the shower...more laughter commenced...
Dad turned when he heard the food carts coming down the hallways...even if he didn't hear it, I have no doubt he could smell it. It always smells so good. Dad turned to Mom and told her he was hungry.
Dad was wheeled into the lunch room and served immediately. Mom fed him his baked fish with tartar sauce, scalloped potatoes with cheese, mixed vegetables, cold slaw, red jello, bread and butter, coffee, milk with ice cream for dessert. Dad ate every morsel.
Several of the usual residents ate near by. The staff had posted signs around asking family members to not visit their loved ones if they were ill. Mom visited with the other residents as she always does when she visits Dad.
Dad wasn't very talkative. He only answered Mom when she asked him a specific question. Dad rambled on about dating someone because it was his job and some other stuff which did not make any sense.
Mom meant to bring her cell phone so I could talk with Dad...but she forgot to charge her batteries and the phone was dead. She was very happy to have the horrible previous visit erased from her memory replacing it with the much better one today.
I am so relieved to hear about this good visit, Dad's increased appetite and better attitude.
Thursday, January 17, 2013
Warming Up For California...
The weather is beginning to warm up finally...or at least, giving us a break from the cold spell we had this past week. It was in the low 20's here. Colder than it has been in five years. California even had some snow...
I've been calling the nursing home and the hospice nurse checked in with me this week. Dad is doing much better. Since changing his diet to regular instead of that phantom diabetic diet, Dad's appetite has perked up and he is eating much better. He also has re-joined the activities.
I spoke with Dad's male caregiver and he told me he has been sitting with Dad, helping him eat while visiting with Dad. He thinks Dad was lonesome and needed some company. I agreed and told him Dad prefers to have someone feed him because of his crippled hands from his Rheumatoid Arthritis.
This week and into next is suppose to be warmer weather, so I will take a few days and go stay with Mom and visit Dad. I want to find out how Dad was put on the diabetic diet and generally observe Dad so I can see if he is beginning to slow down or if it was the change in his diet...
Its odd...as much as I want to see Dad...I also resist. I have to psych myself up for a visit with Dad. I must prepare myself for whatever I might see or hear him say.... I must accept the Dad I want to remember is so very different from the man I visit in the nursing home...
I'm relieved Dad has been doing better because I always listen to my instincts before I decide to get in my car and travel to California... my gut feeling has to signal me...telling me it is time to go...
I've been calling the nursing home and the hospice nurse checked in with me this week. Dad is doing much better. Since changing his diet to regular instead of that phantom diabetic diet, Dad's appetite has perked up and he is eating much better. He also has re-joined the activities.
I spoke with Dad's male caregiver and he told me he has been sitting with Dad, helping him eat while visiting with Dad. He thinks Dad was lonesome and needed some company. I agreed and told him Dad prefers to have someone feed him because of his crippled hands from his Rheumatoid Arthritis.
This week and into next is suppose to be warmer weather, so I will take a few days and go stay with Mom and visit Dad. I want to find out how Dad was put on the diabetic diet and generally observe Dad so I can see if he is beginning to slow down or if it was the change in his diet...
Its odd...as much as I want to see Dad...I also resist. I have to psych myself up for a visit with Dad. I must prepare myself for whatever I might see or hear him say.... I must accept the Dad I want to remember is so very different from the man I visit in the nursing home...
I'm relieved Dad has been doing better because I always listen to my instincts before I decide to get in my car and travel to California... my gut feeling has to signal me...telling me it is time to go...
Tuesday, January 8, 2013
GRANT 4404....
Yesterday was Mom and Dad's anniversary of the first day they met, 68 years ago. Mom was working as a Fashion Illustrator at Rhodes Department Store. She and Jeanie, an Art School friend, had been hosting the opening of Mom's bosses' Art Gallery and they were walking up a windy hill in Seattle, on their way to the bus station. As they walked they noticed three Marines following them at a respectful distance...
As they walked up the hill, they stopped to pretend to look in a store window to check out the Marines. They noticed the Marines were checking them out as well. A short distance later, the three Marine, one of whom was my Dad, stopped the girls and Dad made sure he claimed Mom.
After a wee bit of flirting, Mom informed Dad she and Jeanie had to catch the bus. Dad asked for her phone number so he could see her again. Mom gave Dad her phone number, Grant 4404. Dad never wrote it down and has never forgotten it...even now, despite his Alzheimer's.
When we celebrated Dad's 92nd birthday last November, he regaled us with one of his favorite stories of how he met Mom, and repeated her phone number from memory...
Since it was their special day, Mom wanted to visit Dad. When she arrived at the nursing station, Dad's male caregiver let her know Dad had his morning shower, but wanted to return to bed and was asleep in his room.
When Mom walked into Dad's room, Dad was lying in bed with his mouth wide open...it startled Mom..he looked dead. She walked over and kissed him. He could barely open his eyes, but seeing her, he smiled. Mom told Dad the date and asked if he remembered why it was such a special day.... Groggy, Dad asked if it was her birthday....
Mom told him it was 68 years ago they met on the hill in Seattle...
Dad smiled, but kept his eyes closed.
She attempted to start a conversation to remind him but it was obvious he did not remember....
Dad mumbled some nonsense and then began to snore...
Mom tried again to wake him, telling Dad how concerned we all are with him not eating his meals... She asked him if he would promise to eat a good lunch...
Dad mumbled he would eat...
Mom patted his hand and thanked him...
Dad opened his eyes, looked at her and asked, "Are you still here?"
Mom's heart was heavy. She sat and watched Dad snore. She had brought him a nice, warm, cozy jacket since he has been so cold lately...but as she started to put it in his closet, she realized she had not marked it. The jacket is too nice to lose, so she decided to take it back home with her to mark it with permanent ink.
Dad was tucked in tight with several blankets over him and still snoring loudly...
Feeling depressed she decided not to wait until lunch time...
As she walked out the male caregiver came over to her and she told him how unresponsive Dad has been lately. Mom told him she was concerned with Dad's lack of appetite. He informed Mom about new orders to put Dad on an appetite stimulator and mentioned Dad was on a diabetic diet...
Mom was so upset she did not even realize he had said diabetic diet until later on the phone when she told me about her depressing visit. I told her I would call the nursing home and find out why as Dad is on a diabetic diet when HE IS NOT DIABETIC!
It took me several phone calls before I finally could speak with someone because they were passing out medication and serving dinners. The nurse told me Hospice had ordered the diabetic diet.... I could not believe it. No one informed me of such a change and both Mom and I remember me confirming Dad was NOT DIABETIC at Dad's last Care Conference.
I attempted to call the the Hospice LVN and RN and could not reach either of them....so I called the supervisor of Hospice and discovered there had been some new changes as of 2013 and only RNs would be visiting Dad from now on....and, a new RN had been assigned and she gave me his name and number. I told her about Dad being on a diabetic diet and she promised she would get to the bottom of it and call me.
Right after she hung up, the male nurse called and he also promised to straighten everything out tomorrow (today) and would call me on my cell phone.
Today, they both called, confirming Dad's diet had been changed to NO RESTRICTIONS...regular diet and regular ice cream. If they have been feeding him diabetic food, no wonder Dad has lost 13 pounds in the past month!!!!
Our family decided when Dad first went into the nursing home three and a half years ago, we wanted Dad to eat what he wanted. He LOVES to eat, so with all he has to deal with, the last thing we wanted to do was deprive him of eating.
I called the nursing home after the Hospice staff called me this morning. The male caregiver told me Dad had his shower and refused to go to the activity room for coffee, cake and music. Dad wanted to go back to bed. When the staff tried to persuade Dad, he got angry and told them he wanted to go back to bed.
I have talked to Mom and I think I may arrange a trip to California to stay with her and visit my Dad. I think he needs some extra cheering up...
As they walked up the hill, they stopped to pretend to look in a store window to check out the Marines. They noticed the Marines were checking them out as well. A short distance later, the three Marine, one of whom was my Dad, stopped the girls and Dad made sure he claimed Mom.
After a wee bit of flirting, Mom informed Dad she and Jeanie had to catch the bus. Dad asked for her phone number so he could see her again. Mom gave Dad her phone number, Grant 4404. Dad never wrote it down and has never forgotten it...even now, despite his Alzheimer's.
When we celebrated Dad's 92nd birthday last November, he regaled us with one of his favorite stories of how he met Mom, and repeated her phone number from memory...
Since it was their special day, Mom wanted to visit Dad. When she arrived at the nursing station, Dad's male caregiver let her know Dad had his morning shower, but wanted to return to bed and was asleep in his room.
When Mom walked into Dad's room, Dad was lying in bed with his mouth wide open...it startled Mom..he looked dead. She walked over and kissed him. He could barely open his eyes, but seeing her, he smiled. Mom told Dad the date and asked if he remembered why it was such a special day.... Groggy, Dad asked if it was her birthday....
Mom told him it was 68 years ago they met on the hill in Seattle...
Dad smiled, but kept his eyes closed.
She attempted to start a conversation to remind him but it was obvious he did not remember....
Dad mumbled some nonsense and then began to snore...
Mom tried again to wake him, telling Dad how concerned we all are with him not eating his meals... She asked him if he would promise to eat a good lunch...
Dad mumbled he would eat...
Mom patted his hand and thanked him...
Dad opened his eyes, looked at her and asked, "Are you still here?"
Mom's heart was heavy. She sat and watched Dad snore. She had brought him a nice, warm, cozy jacket since he has been so cold lately...but as she started to put it in his closet, she realized she had not marked it. The jacket is too nice to lose, so she decided to take it back home with her to mark it with permanent ink.
Dad was tucked in tight with several blankets over him and still snoring loudly...
Feeling depressed she decided not to wait until lunch time...
As she walked out the male caregiver came over to her and she told him how unresponsive Dad has been lately. Mom told him she was concerned with Dad's lack of appetite. He informed Mom about new orders to put Dad on an appetite stimulator and mentioned Dad was on a diabetic diet...
Mom was so upset she did not even realize he had said diabetic diet until later on the phone when she told me about her depressing visit. I told her I would call the nursing home and find out why as Dad is on a diabetic diet when HE IS NOT DIABETIC!
It took me several phone calls before I finally could speak with someone because they were passing out medication and serving dinners. The nurse told me Hospice had ordered the diabetic diet.... I could not believe it. No one informed me of such a change and both Mom and I remember me confirming Dad was NOT DIABETIC at Dad's last Care Conference.
I attempted to call the the Hospice LVN and RN and could not reach either of them....so I called the supervisor of Hospice and discovered there had been some new changes as of 2013 and only RNs would be visiting Dad from now on....and, a new RN had been assigned and she gave me his name and number. I told her about Dad being on a diabetic diet and she promised she would get to the bottom of it and call me.
Right after she hung up, the male nurse called and he also promised to straighten everything out tomorrow (today) and would call me on my cell phone.
Today, they both called, confirming Dad's diet had been changed to NO RESTRICTIONS...regular diet and regular ice cream. If they have been feeding him diabetic food, no wonder Dad has lost 13 pounds in the past month!!!!
Our family decided when Dad first went into the nursing home three and a half years ago, we wanted Dad to eat what he wanted. He LOVES to eat, so with all he has to deal with, the last thing we wanted to do was deprive him of eating.
I called the nursing home after the Hospice staff called me this morning. The male caregiver told me Dad had his shower and refused to go to the activity room for coffee, cake and music. Dad wanted to go back to bed. When the staff tried to persuade Dad, he got angry and told them he wanted to go back to bed.
I have talked to Mom and I think I may arrange a trip to California to stay with her and visit my Dad. I think he needs some extra cheering up...
Sunday, January 6, 2013
I Don't Want To....
I have been trying to talk to Dad for over a week now... This morning the nursing home called to inform me Dad's left pinkie toe has enlarged quite a bit in one week's time. Last week it was 11.5cm x 12.5cm wide and 2.5cm high; this morning it was 13 cm x 12.5cm wide and 4.5cm high. Dad is not complaining, but the wound care doctor visited and suggested Dad's primary doctor be notified.
The other day, they told me Dad had lost 13 pounds in one month. He now weighs 138 pounds.
He is sleeping a lot and not wanting to get out of bed...
The nurse mentioned Dad was still in bed. He did not want to get up because he was cold. I asked if I could speak to him. The nurse gave me to one of his male care givers and he told me to hang on while he went to Dad's room to help him on the phone because Dad doesn't know to answer it...
I could hear the caregiver talking to Dad telling him his daughter was on the phone...
"I don't want to...I don't want to..."
I could hear phone noise, then Dad said, "Hello...."
"Hi Papa-doots!"
"Oh, my dear...I have missed you so much. I want you close to me all the time..I want you here with me right now..."
"I have missed you Dad...I love you so much."
"I love you too dear....I want you here right now..."
I could not help myself...I felt so guilty for not visiting him at Christmas....I had just got over a cold and Mom had said he had a cough, and we always rush around to see everyone when we drive to California for Christmas, and I made the decision to stay at my oldest daughter's home longer....to see her, her family, my youngest daughter, her fiance and my youngest grand son....I wanted more time with them...to spend the day instead of a few short hours...so I did not visit Dad....
"I know...I want to be with you too...and give you lots of hugs and kisses...I was sick over Christmas (I lied to him...) so I sent you a card...I did not want to get you sick... Did you get my card?"
"Oh...yes...I think I did get it....but I am scared of cards...they come and go, it snows and then they go...cards don't like me anymore...I don't like cards anymore...they scare me..."
I was not sure if he meant greeting cards or playing cards..." Dad, do you mean cards in the mail or playing cards?"
"I don't like cards...they look scary to me..."
I figured he meant playing cards..."Well Daddy, you don't have to look at cards...how about listening to some nice music?"
"I love you dear...I want you here with me..."
I was starting to cry....so I changed the subject and asked if he enjoyed his visit with Mom and my sister Holly....
DEAD SILENCE....
"Dad? Papa-Doots? ..... Daddy?"
NO ANSWER...
I began to sing our song...the song Dad sang to me as a baby in my crib....Bye, Bye, Blackbird....
NOTHING....
I kept singing...until I began to sob....
I hung up....composed myself...and re-dialed the nursing home...asking someone to help my Father as I think he may have dropped the phone...
The male caregiver came on the line and asked me to please hold again and he would help Dad get on the phone...
"I don't want to...I DON'T WANT TO!!"
Pickles, his female caregiver came on the line..."I am so sorry, but he does not want to talk".
"It's OK...he is probably tired....it was almost noon...and it is so cold now...I asked Pickles if she would please put a warm blanket on Dad...she told me he already had two blankets on him. I asked if she would please warm one in the dryer and put it over him....I could tell Dad was lonely and scared and a nice warm blanket would calm him and quiet him so maybe he could take a nice nap...
If he just had the treatment on his toe, and he saw it, I knew it would upset him...
I feel so sad... My strong Father is now like a frightened child...and I feel as if I have abandoned him...
Each year after his birthday, I wonder if we will get to celebrate another birthday with him. He is 92 years old. He needs dental care, has rampant skin cancers ravaging his body, and his mind is a twisted car wreck... it is just a matter of time. It is like living on the edge of a cliff.
I miss my Dad.
It gets harder and harder talking about him with my siblings...we all know, we all feel it...but we just can't bring ourselves to speak the reality of it...we just continue to be grateful for the time we have with him...yet, each time we see him, with his right eye half closed with skin cancer, his growing melanoma on his left temple, and his covered left foot, more bulbous inside his sock than the visit before...it is just horrible.
It's bad enough with the Alzheimer's...but watching him get eaten up by the skin cancer is so cruel....
He was no stranger to skin cancer. He loved the outdoors, his hands in the soil, swimming in the ocean, lakes and family swimming pools...he didn't use sun screen until late in life... Half his left nostril was distorted from cancer being removed...maybe he couldn't handle it anymore...
When he lived at home with Mom....his dementia made him so suspicious and paranoid. The small blister on his left pinkie toe was so treatable...but he refused to go to the doctor....when I told him I thought the redness on his lower lid, which had not healed, was cancerous and he needed to go to the Opthamologist, he got upset with me; telling me it was not cancer....it was parasites...and he was collecting them in a jar. He showed me. I could see black specs on cotton inside an empty medication bottle...
I tried to tell him it was not parasites...it is a wound not healing...which is a sign of cancer...I begged him to go to the doctor...
He told me he was not stupid and he was going to take it to a lab not covered by his insurance, because they were in on it...he would take it to a different lab and they would confirm it was parasites...
I remember how sad and afraid I was....because he was presenting all the signs and symptoms of this insidious disease which claims the intelligence and personality of so many as technology allows them to live into their 80's and 90's, only to be robbed of their life and family as they knew once knew it...
I want Dad to have dignity. I don't want him to slowly decay away...while he alive...
I am not even sure if Dad can express pain...or discomfort...maybe he sleeps to escape...
Maybe his time on earth is growing to an end...
Just the thought of my Dad's death, makes me cry.
I don't want to think about it...I don't want to....
The other day, they told me Dad had lost 13 pounds in one month. He now weighs 138 pounds.
He is sleeping a lot and not wanting to get out of bed...
The nurse mentioned Dad was still in bed. He did not want to get up because he was cold. I asked if I could speak to him. The nurse gave me to one of his male care givers and he told me to hang on while he went to Dad's room to help him on the phone because Dad doesn't know to answer it...
I could hear the caregiver talking to Dad telling him his daughter was on the phone...
"I don't want to...I don't want to..."
I could hear phone noise, then Dad said, "Hello...."
"Hi Papa-doots!"
"Oh, my dear...I have missed you so much. I want you close to me all the time..I want you here with me right now..."
"I have missed you Dad...I love you so much."
"I love you too dear....I want you here right now..."
I could not help myself...I felt so guilty for not visiting him at Christmas....I had just got over a cold and Mom had said he had a cough, and we always rush around to see everyone when we drive to California for Christmas, and I made the decision to stay at my oldest daughter's home longer....to see her, her family, my youngest daughter, her fiance and my youngest grand son....I wanted more time with them...to spend the day instead of a few short hours...so I did not visit Dad....
"I know...I want to be with you too...and give you lots of hugs and kisses...I was sick over Christmas (I lied to him...) so I sent you a card...I did not want to get you sick... Did you get my card?"
"Oh...yes...I think I did get it....but I am scared of cards...they come and go, it snows and then they go...cards don't like me anymore...I don't like cards anymore...they scare me..."
I was not sure if he meant greeting cards or playing cards..." Dad, do you mean cards in the mail or playing cards?"
"I don't like cards...they look scary to me..."
I figured he meant playing cards..."Well Daddy, you don't have to look at cards...how about listening to some nice music?"
"I love you dear...I want you here with me..."
I was starting to cry....so I changed the subject and asked if he enjoyed his visit with Mom and my sister Holly....
DEAD SILENCE....
"Dad? Papa-Doots? ..... Daddy?"
NO ANSWER...
I began to sing our song...the song Dad sang to me as a baby in my crib....Bye, Bye, Blackbird....
NOTHING....
I kept singing...until I began to sob....
I hung up....composed myself...and re-dialed the nursing home...asking someone to help my Father as I think he may have dropped the phone...
The male caregiver came on the line and asked me to please hold again and he would help Dad get on the phone...
"I don't want to...I DON'T WANT TO!!"
Pickles, his female caregiver came on the line..."I am so sorry, but he does not want to talk".
"It's OK...he is probably tired....it was almost noon...and it is so cold now...I asked Pickles if she would please put a warm blanket on Dad...she told me he already had two blankets on him. I asked if she would please warm one in the dryer and put it over him....I could tell Dad was lonely and scared and a nice warm blanket would calm him and quiet him so maybe he could take a nice nap...
If he just had the treatment on his toe, and he saw it, I knew it would upset him...
I feel so sad... My strong Father is now like a frightened child...and I feel as if I have abandoned him...
Each year after his birthday, I wonder if we will get to celebrate another birthday with him. He is 92 years old. He needs dental care, has rampant skin cancers ravaging his body, and his mind is a twisted car wreck... it is just a matter of time. It is like living on the edge of a cliff.
I miss my Dad.
It gets harder and harder talking about him with my siblings...we all know, we all feel it...but we just can't bring ourselves to speak the reality of it...we just continue to be grateful for the time we have with him...yet, each time we see him, with his right eye half closed with skin cancer, his growing melanoma on his left temple, and his covered left foot, more bulbous inside his sock than the visit before...it is just horrible.
It's bad enough with the Alzheimer's...but watching him get eaten up by the skin cancer is so cruel....
He was no stranger to skin cancer. He loved the outdoors, his hands in the soil, swimming in the ocean, lakes and family swimming pools...he didn't use sun screen until late in life... Half his left nostril was distorted from cancer being removed...maybe he couldn't handle it anymore...
When he lived at home with Mom....his dementia made him so suspicious and paranoid. The small blister on his left pinkie toe was so treatable...but he refused to go to the doctor....when I told him I thought the redness on his lower lid, which had not healed, was cancerous and he needed to go to the Opthamologist, he got upset with me; telling me it was not cancer....it was parasites...and he was collecting them in a jar. He showed me. I could see black specs on cotton inside an empty medication bottle...
I tried to tell him it was not parasites...it is a wound not healing...which is a sign of cancer...I begged him to go to the doctor...
He told me he was not stupid and he was going to take it to a lab not covered by his insurance, because they were in on it...he would take it to a different lab and they would confirm it was parasites...
I remember how sad and afraid I was....because he was presenting all the signs and symptoms of this insidious disease which claims the intelligence and personality of so many as technology allows them to live into their 80's and 90's, only to be robbed of their life and family as they knew once knew it...
I want Dad to have dignity. I don't want him to slowly decay away...while he alive...
I am not even sure if Dad can express pain...or discomfort...maybe he sleeps to escape...
Maybe his time on earth is growing to an end...
Just the thought of my Dad's death, makes me cry.
I don't want to think about it...I don't want to....
Tuesday, January 1, 2013
Holidays and Hand Grenades....
Mom and my sister went to visit Dad Sunday... Dad did not recognize my sister... He was in "WWII combat mode", cutting off the heads of Boa Constrictors with a machete while hacking his way through the jungles, climbing palm trees, tossing hand grenades, fighting alongside John Wayne....and the planes were bombing regularly as they flew low over head. Dad said John Wayne was shot while trying to raise the flag, but rolled down a roll to escape, only to be killed later on. Mom thinks he may have had a nightmare, or had seen the film Iwo Jima recently....
Both Mom and my sister listened and stayed involved in Dad's stories...noting Dad's right eye was practically closed. Dad seemed to have more difficulty than normal in hearing either of them talk, so they nodded and smiled a lot.
I used to work in the Dental field and just cannot fathom such disregard for dental health....but unless Dad is in pain, the last thing he needs is another open wound. The male nurse who is one of Dad's regular caretakers, knew how we feel about pulling Dad's teeth and called me for permission to cancel the order. He assured me Dad is not in pain and has no problems eating. Dad would not allow the dentist to even take x-rays, I know he would not permit an injection and never an extraction. He still has all of his teeth.
Mom and Holly observed Dad's appetite for themselves when his lunch arrived... He had what looked like homemade chicken soup with fresh vegetables and big succulent chunks of white meat chicken with noodles, biscuit, diced beets, green jello with pineapple, ice cream, cookie, milk and coffee. Everything looked and smelled so good, it made Mom and Holly hungry, so after their visit they headed for a restaurant for lunch, only to be caught in a hail storm. It hailed so hard, my sister thought it would dent her car...but luckily, it didn't.
My sister and her husband just finished a complete remodel of their kitchen. Thanksgiving their kitchen was totally gutted.... it was finished around 2pm on Christmas Eve, just in time for our yearly family Christmas Eve party. We were all there, except Dad. We each visit him separately... We start off the evening by putting names of famous people on the backs of everyone, even the children, and then have to guess who we are by asking yes or no questions.
We had a wonderful potluck dinner with everyone bringing something and my sister and her family providing the ham or pork roast...this year it was ham. After we played our "white elephant gift exchange", which we all thoroughly enjoy and always brings a lot of laughter...
We played a new dice game called LCR. The dice have one dot, an L, an R and a C on each side. Each person starts with three dollar bills. As we each roll the dice, if dots are rolled, the person keeps their money and the person next to them takes a turn. If an L is rolled, a dollar goes to the person on their left, an R, the dollar goes to the person on their right and a C, the dollar goes into the pot in the center of the table.
It was a lot of fun and just when you think you are out with no money....the person next to you passes you a dollar and you are back in. If you have one dollar, you only roll one die. If you have two or more dollars, you roll both dice.
I ended up winning the first game and won $60. After everyone left, 8 of us played and my husband Jerry won the pot of $24. Everyone joked and said next year the "Vegas" people couldn't play... it was really a fun night.
The next morning, we spent at my oldest daughter and her family's home in Beaumont, joined by my youngest daughter, her fiance and their son Jacob. My daughter made the family traditional "monkey bread" and then a delicious meal for lunch. We opened presents, visited and enjoyed the day together. That night, my youngest daughter's family met us at El Torito near our hotel and treated us to dinner. Jerry and I were fast asleep by 8pm.
Wednesday, we checked out of our hotel and drove to Irvine to spend the day and night with one of my husband's son's family and our two grand daughters. The girls had some gift cards so we all went to Downtown Disney for them to shop and spend their "holiday money". We enjoyed a yummy family style lunch at Stone Fire Grill. We had so much left over, we took it back to their house and dined on it later that night for dinner.
Thursday we headed back to Riverside, to stay with Jerry's only daughter's family and see his youngest son, the Marine. We laughed, talked and enjoyed a wonderful crock pot roast.
Friday morning we were on the freeway driving back to Nevada. Normally, we celebrate with his daughter's family AFTER going to my sister's house on Christmas Eve, but we are always so tired, we decided to take an extra day and spend it with them instead. It was so much better for all of us and we decided to do the same plan next year.
In the past we are rushing around trying to visit at two or three places per day and it is just too much stress. We fight the California traffic, which is always worse around the holidays. I feel very guilty I did not see Dad this trip....he has had a cough, I am just getting over a cold, and it was just too much running around. I have attempted to call and talk to him, but have not been successful. He has been in the shower, sleeping, eating, the staff passing out meds or he has been enjoying activities.
He has no concept of time and recall, and I know he is kept busy with holiday events and activities at the nursing home. They always have extra music, food and entertainment and as much as he enjoys it, it also exhausts him as well.
We will be returning to California in February, so we will definitely see him then.
Hope everyone had a wonderful Christmas and a Blessed New Year to you all....
Both Mom and my sister listened and stayed involved in Dad's stories...noting Dad's right eye was practically closed. Dad seemed to have more difficulty than normal in hearing either of them talk, so they nodded and smiled a lot.
Dad, looking happy
Dad with his lady love...Mom
I received a call from the nursing home yesterday, informing me the visiting Dentist placed an order to have one of Dad's teeth extracted. I had spoken to the nursing home and have spoken to the gal at the Dental office, asking if they could clean out the tooth and place temporary fillings....but of course, Medi-Cal will not. They pull rather than fill.
Mom and Holly observed Dad's appetite for themselves when his lunch arrived... He had what looked like homemade chicken soup with fresh vegetables and big succulent chunks of white meat chicken with noodles, biscuit, diced beets, green jello with pineapple, ice cream, cookie, milk and coffee. Everything looked and smelled so good, it made Mom and Holly hungry, so after their visit they headed for a restaurant for lunch, only to be caught in a hail storm. It hailed so hard, my sister thought it would dent her car...but luckily, it didn't.
My sister and her husband just finished a complete remodel of their kitchen. Thanksgiving their kitchen was totally gutted.... it was finished around 2pm on Christmas Eve, just in time for our yearly family Christmas Eve party. We were all there, except Dad. We each visit him separately... We start off the evening by putting names of famous people on the backs of everyone, even the children, and then have to guess who we are by asking yes or no questions.
We had a wonderful potluck dinner with everyone bringing something and my sister and her family providing the ham or pork roast...this year it was ham. After we played our "white elephant gift exchange", which we all thoroughly enjoy and always brings a lot of laughter...
We played a new dice game called LCR. The dice have one dot, an L, an R and a C on each side. Each person starts with three dollar bills. As we each roll the dice, if dots are rolled, the person keeps their money and the person next to them takes a turn. If an L is rolled, a dollar goes to the person on their left, an R, the dollar goes to the person on their right and a C, the dollar goes into the pot in the center of the table.
It was a lot of fun and just when you think you are out with no money....the person next to you passes you a dollar and you are back in. If you have one dollar, you only roll one die. If you have two or more dollars, you roll both dice.
I ended up winning the first game and won $60. After everyone left, 8 of us played and my husband Jerry won the pot of $24. Everyone joked and said next year the "Vegas" people couldn't play... it was really a fun night.
The next morning, we spent at my oldest daughter and her family's home in Beaumont, joined by my youngest daughter, her fiance and their son Jacob. My daughter made the family traditional "monkey bread" and then a delicious meal for lunch. We opened presents, visited and enjoyed the day together. That night, my youngest daughter's family met us at El Torito near our hotel and treated us to dinner. Jerry and I were fast asleep by 8pm.
Wednesday, we checked out of our hotel and drove to Irvine to spend the day and night with one of my husband's son's family and our two grand daughters. The girls had some gift cards so we all went to Downtown Disney for them to shop and spend their "holiday money". We enjoyed a yummy family style lunch at Stone Fire Grill. We had so much left over, we took it back to their house and dined on it later that night for dinner.
Thursday we headed back to Riverside, to stay with Jerry's only daughter's family and see his youngest son, the Marine. We laughed, talked and enjoyed a wonderful crock pot roast.
Friday morning we were on the freeway driving back to Nevada. Normally, we celebrate with his daughter's family AFTER going to my sister's house on Christmas Eve, but we are always so tired, we decided to take an extra day and spend it with them instead. It was so much better for all of us and we decided to do the same plan next year.
In the past we are rushing around trying to visit at two or three places per day and it is just too much stress. We fight the California traffic, which is always worse around the holidays. I feel very guilty I did not see Dad this trip....he has had a cough, I am just getting over a cold, and it was just too much running around. I have attempted to call and talk to him, but have not been successful. He has been in the shower, sleeping, eating, the staff passing out meds or he has been enjoying activities.
He has no concept of time and recall, and I know he is kept busy with holiday events and activities at the nursing home. They always have extra music, food and entertainment and as much as he enjoys it, it also exhausts him as well.
We will be returning to California in February, so we will definitely see him then.
Hope everyone had a wonderful Christmas and a Blessed New Year to you all....
Subscribe to:
Posts (Atom)