Thursday, October 28, 2010

Thursday Intervention

After the Thursday fall, I had gone into Mom's bathroom and had found an assortment of over the counter pain killers in her medicine cabinet.  Concerned because of her AD and how she has not been comprehending the problem of combining certain medications, I felt it was time to take all of the over the counter meds out of her medicine c cabinet except for her Tylenol arthritis. My mind was not made up as to whether or not she should keep even that in her medicine cabinet, so after giving her the Tylenol Arthritis after her fall, I placed it in the kitchen with a note saying what time I had given it to her.

I went ahead to my meeting and when I got done, I had a text message from my SS saying that "Grandma is on the rampage and wants to talk to you about her medicines."

I'm going to try to make a long story short here:

I got home and Mom didn't say a word about the medicine. Even when I asked if her head was hurting and if the Tylenol had helped. Nothing.

So before my DD and SS got ready to leave again, I went into Mom and Dad's living room and sat down and asked her how she was again. I knew we were headed for a blowup and I honestly didn't want to face it alone.

As it turns out- we ended up having a family intervention. My DH, my DD, my SS and I all talked with Mom about her disease and what we are trying to accomplish by having her live with us. Mom explained her frustration about not being able "to do anything for herself" anymore.

We pointed out that she is still able to do many things for herself. She can dress herself and pick out her own clothes. She showers by herself, she can still watch TV and read and do her Soduko. She can feed herself. She is doing her own laundry and making her own beds. She helps out in the kitchen by setting the table. She fixes her own breakfast and her own lunch. She can pray and she can talk and she can visit with people.

I explained that some things I have to do. Somethings I have to make decisions about. I can't pretend she doesn't have a problem and I can't ignore my responsibility as her daughter to take care of her.

I told her, that if it gets to the point where she will not accept my giving her medication to her as the doctors have prescribed, she will have to live in a place where she receives her medication by an RN.

My SS and DD told her over and over that we love her and that we are trying to keep her out of a nursing home. But they were also honest about how difficult is has been when she has been so nasty to us. At that point Mom cracked a hurtful "joke" and my DD said, "See Grandma- that's not funny to us. That may be funny to you- but it is hurtful to us."

I know it may not sound possible, but I think Mom got it. At least for awhile. There were lots of tears and lots of hugs.  I pray it lasts.

Thursday Fall

Never a dull moment in this household! Thursday morning my DD (dear daughter) and my SS (sweet son) planned on taking dad to his eye doctor appointment. Mom would of course be going too.

On the way out of the house into the garage are two steps. Before my parents moved in, my DH (dear husband) made the bottom step larger to match the step my parents had in their garage,  so when stepping down to that first step, there is more room to get your balance. He had also installed hand rails and had covered the step with carpeting so it  would not be slippery.

Mom always tries to carry her purse, (or as Dad calls it her security blanket) her cane, and at least two books while going down the steps. She doesn't want "help."

Well, as they were getting ready to leave, I heard a big BANG and a thud and Mom crying. She had tried to go down the step with all of her stuff and had either

a) slipped and fallen because she was wearing slick bottom shoes with no traction.

b) fallen because her knee buckled

c) lost her balance and fell

However it happened, she went down HARD on her bottom and hit the back of her head on the door frame.

Change of plans. My SS took my dad to the eye doctor. My DD stayed home with Mom and made sure she was okay. I gave Mom some Tylenol and got ready for my appointment with my new accountability group.

Wednesday, October 27, 2010

More Surgery for Dad

A quick post...

Dad saw the thoracic/cardiovascular surgeon today as a recheck after his triple A surgery. While there, I mentioned that Dad is also supposed to see him because he had a MRI while in the hospital for his TIA. Dr. C knew nothing about the MRI or that Dad had a TIA. Couldn't find the MRI on the computer. His assistant got a copy for him. I told Dr. C we had been told his carotid artery was 65% blocked. It is.

Long story short: Dad is having his right carotid artery cleaned out on November 11th. Usual hospital stay- 2 days. I'm praying for less than a week.

Prayer welcome and appreciated. I will write more later...

Monday, October 25, 2010

Okay- so...more conversation about cough medicine

Okay- so last night went fine. Mom was really tired and I had to wake her up in her chair to take her medicines. She went to bed probably around 11:00 PM and slept until 7:30 AM. Yeah! No coughing or anything! She says she felt good.

So... at 9:30 AM we had to leave for a doctor's appointment for my Dad. Mom wanted cough medicine. I told her I would give it to her at 10AM. She raised a fit and kept yelling at me even after we got in the car. I turned on the radio. She started screaming- "Okay then! Try and drown me out."

I turned off the radio.

"Mom, I will give it to you at 10AM."

"I'm going to ask your Dad's doctor if I should be able to take it."

"No- you won't. This is Dad's appointment and it is about him. If you need to see the doctor, I will take you."

I asked Mom if she had taken her inhaler.

"Yes! As soon as I got up. That just makes it easier to breathe. It doesn't help the cough."

Right before we got to the doctor's office, she took out her inhaler and took a puff on it.

"Mom, I thought you had used your inhaler."

"Yes, I did."

"You can only use it 4 times a day."

"Yes, two puffs four times a day."

Get to the clinic and ask Mom if she needs to see a doctor.

"No! I just need my cough medicine."

I pour her medicine and try to hand it to her. She just looks at me and makes no move to take it. In the mean time, Dad is getting out of the car.

"Do you want this?"

"Yes!" Grabs it out of my hand.

We go in to Dad's appointment, which went very well.

There is a coffee shop in the clinic, so they go in for a cappuccino and I get an iced tea. They sit in there and talk to the barista (my dad worked with her for a while when he worked briefly for Star Bucks)

The pharmacy is right next door so I go there and ask if there is ANY cough medicine she can take along with Mucinex. No. Nothing. Nada. And they explain why.

I go out and explain to Mom and she doesn't believe it. I ask if she would like to talk to the pharmacist. She wants to and she does, and she gets the same result. Except now in talking to the pharmacist, she decides she will take Delsym cough medicine at night (12 hour dose) and then Mucinex during the day if she needs it. Okay. Fine. Buy Delsym.

On the way home, Mom uses her inhaler two more times. Ask her again about how often she should use it. She gets mad. Decide I just need to call doctor.

10:00 PM. Take Mom's meds to her.

"I don't want that. I want my Mucinex and my Robitussin."

"you can have one of the other. But you and the pharmacist said you were going to take Delsym."

"Why won't you listen to me?"

"Do you want Delsym or Mucinex?"

"Mucinex. I'm going to write all of this down and show Dr. P. She will understand I need both!"

"Okay. Good night Mom."

Sunday, October 24, 2010

Conversations with Mom

Condensed version...really!

Saturday morning I found an empty bottle of Robitussin DM on the counter. 

When I saw Mom, I asked her if it was hers and she said yes and that she needed it refilled. I really didn't think anything of it until later in the day when she asked if I had bought her some more yet. 

"Do you need it today?"

"Well, don't make a special trip, but I usually take it every night before bed."

Warning buzzer goes off in my head...

"You do? But you also take Mucinex DM at bedtime. I think they are the same drug."

"No they aren't. I take the Mucinex to break up my cough and I take the Robitussin to stop my coughing at night so I can sleep."

"I'll have to check the labels Mom."


"Mom, the two medicines are the same. You really shouldn't take both at the same time."

"THEY ARE NOT THE SAME! I need the Mucinex for long-term nighttime protection and the Robitussin to stop my cough. The Robitussin gets in the system faster because it is liquid. I ALWAYS take this. I will not overdose."

After dinner, my DH and I go to the store. He talks about buying a bottle of Robitussin and replacing the contents with red sugar water. It is tempting- but we decide thats not a good idea in case she (or someone else) really needs the Robitussin. We buy a bottle- the only one they had was sugar free. 

Come home. I reread the labels and tell Mom I can'[t give her both- she can take one or the other.

She starts yelling at me about being a nurse etc etc etc. I tell her I will call the Patient Advisory Nurse at the hospital where she worked for 40 years and ask them what they think. Mom is furious. I call anyhow.

The Patient Advisory Nurse tells me not to give both meds. 

I tell Mom. 

"You didn't talk to a real nurse! I'm a real nurse! I know more about medicine than you ever will. It's just d*mn cough medicine. Did you tell them I have asthma? Do you want me to keep your father up all night coughing?"

I walk away and at 10:00 I bring her medicine. 

"I can't believe you will not listen to me and give me my cough medicine! I'll be up all night!"

"Mom- I'm doing the best I can. I'm following the instructions given to me by a Registered Nurse. I read about it on the internet. I will give you one or the other."

She takes her pills and takes the Mucinex DM. She glares at me and when I tell her good night she says:

"It won't be a good night. Thanks for nothing."

Sunday morning I get up at 5:30 and see the light on in Mom's living room. She's coughing. Not a lot- its her normal first of the morning cough when she hacks up phlegm. I get my coffee and go in to take my shower.

At 7:00 AM Mom is in the kitchen waiting for me. She is mad- it is all written in her face and her body language.

"Did you her me last night? I coughed ALL NIGHT LONG."

" No Mom, I didn't hear you."

"Well good for you. I'm sure I kept your Dad awake all night. I finally got up at 4:00 AM and came out here. All I've done is cough. I can't sleep. Would you PLEASE give me some cough medicine!!"

"Mom, the Mucinex DM is 12 hour. You had some at 10:00 AM."

"I want it NOW!"

"Mom, I'll call the patient advisory nurse."

"Don't you call anyone? Who are you going to call? Well I hope she's a real nurse. And you tell her I'm a nurse too etc etc etc..."

I call the patient advisory nurse. I explain what is going on and that my mom has Alzheimer's and that she is a retired nurse. I put the nurse on speaker phone and she can her my mom yelling at me about the cough medicine.

Nurse: "She can't take those medicines together, especially with asthma. Is she taking her Flonase and her albuterol inhaler?"

I ask Mom.

"I take the Flonase at night. And I can't take the inhaler all the time, it's not good for my heart."

"Mom, aren't you supposed to take it 4 times a day?" 

"I take it PRN (medical speak for "as needed") I always take it before bed. I don't know why you won't just give me the cough syrup. It is just cough syrup!!! I have never over dosed on medication and I have never given anyone else the wrong dose. Is she a real nurse? Where is she at? Is she at (mom's) hospital? Does she know I'm a nurse? "

Nurse: It isn't "just cough syrup."

Nurse: Is she wheezing?"

 "I haven't heard her wheeze. Mom are you wheezing?"

"I don't know. I can't hear it if I'm wheezing."

"Can't you feel it when you're wheezing?"

Nurse: Have her take a couple of deep breaths."

"Mom, take a couple of deep breaths."

No wheezing- no coughing.

Nurse: "Tell her she can have the Robitussin DM at 10:00 AM. Her records indicate she is supposed to be taking the plain Mucinex- not the DM. Then she could have both. If she gets worse, bring her in to the ER."

"Are you documenting this?"

Nurse: "Yes, it will be in her records."

Hang up.

"Mom- you can have the Robitussin at 10AM. D (my husband) will give it to you then. I have to get ready for my job- I have a church service in just a bit."

"Go! I don't care!"

I left.

After church- at 11:30 AM I come home to find the Robitussin dose cup sitting at Mom's place at the table with the medicine still in the cup.

Mom comes out of her living room. I don't want to ask- but I have to...

"Are you feeling better?"


"Did D give you the Robitussin that is sitting here?"

"He gave me something. But I don't know if it is Robitussin. So I didn't take it! I want to see the bottle."

I get the bottle and the box.

"Mom- it is sugar free and has no added coloring or flavors. That's why it is clear and not red."

Looking at the box. "I'm not diabetic. I don't need this."

"Mom, it is the only Robitussin DM they had at the grocery store. Anyone can take it, its not just for diabetics."

Mom read the box and bottle. "I can't think straight. I'm too tired from coughing all night."

I haven't heard her cough since I got home. "Are you still coughing?"

"I don't know. I haven't tried to cough." (?????)

"Do you want to see a doctor?"

"No, I just needed my cough medicine."

"Are you going to take it now?"

"I don't know. (pout) I haven't decided.

"If you take it, I need to know what time you took it."

"Why? Its just cough medicine!"

"Just let me know, okay? If its still sitting here in an hour, I'm throwing it away.

Five minutes later, she hands me the empty cup and a note saying she took it at noon.

What will tonight bring I wonder?

Saturday, October 23, 2010

Another Thought

When I first started writing this blog I thought it would mainly be about my Mom and about Alzheimer's. As it turns out Care Giving is really what it is about. It is also about my struggles to do the right thing and still have a life of my own, as well as my parent's struggles to live the end of their lives with grace and dignity.

I should know that sometimes a piece of writing takes on a life of its own. How many times have I started a sermon with one thought in mind to find out I have been led in a different direction entirely? And so it is with this.

Dealing with my mother's Alzheimer's and my dad's health concerns gives me a lot to think about as far as my own life and how I have or have not taken care of myself. It, as they say, gives me pause.

So today I took a time out and walked down to the river to pray. (and yes that is the title of a song by Alison Krause from the movie  O Brother Where Art Thou? And yes, I did sing it while I sat there.

I also sang:

When peace, like a river, attendeth my way,
when sorrows like sea billows roll;
whatever my lot, thou hast taught me to say,
It is well, it is well with my soul.
It is well with my soul,

it is well, it is well with my soul.

(And the horses didn't seem to mind...)

It was a beautiful fall day in the seventies and this was my view from the rivers edge.

They did notice me at first, but the water and the grass were much more interesting to them than me.

The water was calm even though the wind was blowing. It was so nice to just sit and relax.

For those of you who worry that I don't take time for myself, here is proof that at least for an hour and a half today- I did. And it was wonderful.


Friday, October 22, 2010

Updates on Dad

Dad's mini-stroke was determined to be a mini-stroke and not a TIA- because according to his doctors -a TIA lasts for 10 minutes or less and Dad's lasted at least a half an hour. That's not what it says on the Mayo Clinic website, but if that's the terminology they wish to use, then that's okay with me. I am thinking mini-stroke may be more accurate because to me it seems there are residual effects from the incident. His personality seems to have changed slightly, understanding and quick response seems to have diminished. Perhaps its just because I see him all the time and when he is different, it stands out.

Dad came home on Monday afternoon the 18th. He was started on Coumadin/Warfarin. I know this is very common and there were a LOT of questions why Dad hasn't been on this before. He had a stroke in the late 90's and he has had major heart surgery. Whatever the reasoning, he is on it now. They want his INR to be between 2-3.

We were worried about this because he seems to have issues with clotting, and he bruises very easily, but the INR test done in the hospital was only 1.1 and the test done the the 20th and 22nd were 1.2 and 1.4- so he has a way to go before he hits the desired 2-3.

On Sunday, the 17th, Urology was brought in for a consult because he wasn't fully voiding. The urologist talked about putting him on a "shrinker and relaxer" for his prostate.He said he had to see if the hospital had it because it is so new and is a combo of Flomax and Avadart. To make a long story shorter, he forgot to prescribe it and there were NO NOTES in his medical records to even show this particular doctor saw my dad. My daughter was there when the doc came in and knew him from a surgery my grandson had. So, we finally got the prescription and have found out this is SO new the pharmacies around here have to order it. It will not be available until Monday afternoon. It is also so new it is not listed on the website.

My daughter asked Dad how he was feeling about what happened. Dad said it reminds him of his favorite song by Frank Sinatra-  My Way

Dad has always loved the song- but his emphasis now is on the first line. "And now the end is near; and so I face the final curtain."

I don't know if that is true. I don't know if the end is near; but if he feels that way, it might delay in his getting better.

Not an easy subject to discuss and made even harder because it is nearly impossible to get Dad alone long enough for a good discussion.

I'm not sure how I feel about this.

Lots of things to think and pray about.

Sunday, October 17, 2010

My Dad

Last night around 11:30 pm, Dad had a mini-stroke. Ar first they told us it was a TIA, but since it lasted longer than ten minutes, it's classified as a mini stroke.

Mom and I got home from the ER at 3 AM and went to bed. I was up at 6 AM to get ready for church. I went to the first service and then left- my Lay Leader took care of the 2nd service. It was Laity Sunday so I didn't have to do a lot any way.

My daughter was up at the hospital early to be eyes and ears again. Finally got HIPPA  (spelling?) forms signed so she can legally talk  to the doctors and nurses and get information.

Echo cardiogram done, head CT done, blood work etc. MRI will come tomorrow. Dr. on call upset that my dad has never been on Coumadin, a blood thinner, even after his stroke in 97 and since he has A-fib.

There are more questions than answers at this point.

Mom is confused of course- lack of sleep and all of this is hindering my capability to think straight. I'm sure it is worse for her...

Missed my first Book Club pot luck at church tonight.

Thank God for these people in my church who just step up and do what needs to be done.

Dinner and then bed are on the agenda. More to come as more is known.

Tuesday, October 12, 2010

A Very Nice Day

Monday was a holiday-Columbus Day. My secretary had the day scheduled off and I decided I NEEDED to take a full day off. So other than one phone call to the church to find out why my secretary was working on her day off (!?!) I basically avoided church stuff.

I told Dad the night before we would go somewhere- but we kept it a surprise for Mom so if something happened and I couldn't go, it wouldn't be too big a disappointment.

Nothing got in the way- in fact the opposite happened. There roofers came to re-roof the parsonage and so getting away for the day was a REALLY good idea.

So we left the house and drove to Arcola Illinois and went to Rockome Gardens. This is a place Mom and I have been to before and she remembered it so that was great. We bought Mom a disposable camera so she could take pictures- she used to love to take pictures. Rockome Gardens is in Amish country- and so we went to the Amish Interpretive Center and watched a short film on the Amish and looked at all of the museum displays.

We took a buggy ride and also rode on the little "train" they have. We also got ice cream (Of Course!) It was a beautiful day and walking around was slow, but that was fine with me.

We went into the Raggedy Ann and Andy Shop, but that was the only shop we really went into. In the old days, we would have hit every shop in the place.

We didn't go to the petting zoo, or the haunted cave or some of the other features. It was really in sharp contrast to the year before when I took my daughter and grandchildren there! No one was running and no one wanted to play on the play ground or go inside the tepee. Or feed the animals!

We left there and went to Yoder's Kitchen in Arthur Illinois to eat. There was a 45 minute wait and we waited. The place was so busy! We ate around 2:30 PM and then traveled home. The food was good and people were still waiting to get in when we left. I'm not sure when their lunch crowd ends and their supper crowd begins!

It was a good day. Everyone was patient. Dad and I were both relaxed and Mom was enjoying being out.

Dad said he was tired, but in a good way and slept very well.

Mom didn't sleep well, but she can't seem to sleep more than 5 hours a night, even taking a sleep aid prescribed by the doctor. She is up most mornings very early. But she did enjoy the day and I am very grateful!

Monday, October 11, 2010

Privacy issues...long...

The one advantage to being so tired you can't seem to think straight is that you don't know what things should bother you and what shouldn't so you kind of let them all pass. At least that is what it seemed like to me this past weekend. Or I suppose you could let everything bother you... but that doesn't seem to be very helpful. 

I'm not sure how one can distance themselves from Alzheimer's when it is invading your home.  I need to distance myself from the AD, but I can't distance myself from my Mom and sometimes I can't separate the two.

Mother daughter relationships can be complicated. Our has always been (within my memory), which is a shame. Unfortunately with the AD, old issues sometimes come up and it is Soho hard to distance myself from those old issues and deal with the AD of now.

My mom loved (and loves) me very much. But she was very protective. There were a lot of things she didn't want me to do because I could get hurt. I remember she didn't want me to go to the sled hill with the others kids. I had a sled- but no sled hill for me! But then when she was at work, Dad would take me to the sled hill. And then when I survived- we told Mom. She thought the out-of-doors was a dangerous and scary place! Wasps, and bees and all sorts of wildlife were out there ready to kill me, or sting me and what if I went into anaphylactic shock!?! Dad stepped in a lot when it was time for me to try new things.

Mom wanted to know who every phone call was from and  what we talked about.

She wanted to read every letter I received, wanted to know what people meant when they wrote things in my year book. She worried about the kids I hung out with and the boys I liked. I think that's normal- but many times it just went to the extreme. And the kids she thought were nice and welcomed into our home...well, lets just say some had her fooled.

So, I rebelled. Dad, bless his heart knew I needed privacy and in my shelving unit in my bedroom, created a space with a door that locked. And I had the only keys. I'm sure the conversation between my Mom and Dad was quite colorful when she saw what had occurred!

Now, I still feel that feeling of rebellion when Mom questions me about what I am doing, where I am going, who called, what they said. When she sees me barefoot going outside to get the newspaper she warns me of the dangers and it makes me want to scream- "I'm an adult!" Of course, doing that would not be very adult-like so I try to just smile. She wants to look at my mail and doesn't understand when I tell her no.

So here I am having trouble at the age of 55, trying to differentiate between my past rebellion and my current need for privacy within my own home. And there are times I feel so two-faced... when I go through her things and look for medication she's hidden instead of taken, when I sort her mail before giving it to her...when I invade her privacy. When I say to myself, "I am trying to protect her." When I realize that someday, when I am older, my own privacy may be in jeapordy...

I won't even go into the realizations that have occurred concerning my relationship to my own daughter...

I try to tell her what I can- but in my work there are times when confidentiality is important. And I can't trust her to remember NOT to say something. And there are times I just don't want to tell her every little thing that I am doing.

Mom follows us around- and I'm sure that's the AD. And she stands and just watches. And I know sometimes she is probably just lonely or feeling lost.

So- any thoughts out there about privacy and AD? About getting over past issues that have come home to roost? About guilt and boundaries and privacy? i obviously don't have the answers!

Wednesday, October 6, 2010


Dad is anxious and worried. This is new- I've never really seen him this way before and it is difficult in many ways. The more anxious he is, the more anxious Mom gets. The more anxious he is the more anxious I get, but can't show it...

He says this "thing" with his heart is really bothering him. I can imagine! And he wasn't happy that the doctor upped his new medication- he doesn't like the new one and is afraid it is making things worse.

They are trying to reassure him that sometimes it takes awhile to adjust the medications.

He's sleeping late today which seems to mean he didn't get to sleep until late.

Today he goes in for a sonogram of his kidneys.

Okay- so here is the big question- (and I know there is no answer...)

Mom has Alzheimer's.

Dad doesn't.

If I were running the universe (thank God I'm not!) people with Alzheimer's would get the bad diseases and illnesses so they wouldn't have to suffer as long... 

Or would that be too unfair?

As I keep telling myself- and everyone else- life isn't fair.

Got to go. I get to run away for awhile this morning for a hair appointment. "My Friends" as my hairdresser calls my gray hair are getting a pick-me-up for fall.

Emailing me.

I've had a couple of requests for my email address and so I have set up an address with hotmail. I hope you understand that I am trying to protect the anonymity of my parents, my family and my congregation as I do this. While most people you "meet" on the web are lovely people, I have run into a few not-so-lovely ones...

If you would like to email me and you don't already know me- please email me at

Tuesday, October 5, 2010


As I'm writing, I'm sitting here waiting for the cardiology department to call my dad back. Since his surgery, his heart rate has been high (99 or above) and since changing his BP medication, his BP is high.

Yesterday, Dad got a heart monitor to wear for 24 hours. Last night, he didn't sleep well and kept taking his BP and it was high all night. He is anxious and upset. This of course means Mom is anxious and upset too.

Of course, this means I must remain calm and composed and I'm doing the best I can. Sunday, our parish nurse took MY blood pressure and it was high for me- 136/86. I usually run about 105/70. Sooo.... I guess all of this is stressing me out more than I knew or wanted to know. Now I'm taking my BP daily too.

I've also made a deal with my husband. He is going to give me a $1.00 for every 1/2 hour I walk on the treadmill. The money is going to the church, so I can't let them down. It should benefit all of us.

Mom is upset because my DH didn't clean out the dryer lint after his last load of laundry. Today this is a BIG DEAL, which shows me she is anxious.

My husband tells me I let all of this bother me too much. That I "worry" too much and that I need to stop "babysitting" my parents.  We've had quite a discussion about this. Maybe its the difference between men and women. Or maybe its that I live with this everyday, that I am responsible for their medical visits and medication and their finances and that I am a pastor taking care of other people as well. And maybe its because I don't get to leave and go fishing on my boat every single day I have off from work. Or maybe its because I don't have a day off. Hmmm...

Well, fishing season will be over soon and then maybe he can take on some of these things that I am doing. Time will tell!