Are We Having Fun Yet?

So today, I ended up taking my Dad to the eye doctor, out to lunch at Arby’s, to pick out a walker for Mom, picked out new glasses for Dad, and then went for an iced Mocha for Dad. (Iced tea for me please) Then to the grocery store, and then to the post office, because I forgot it was a holiday. It was supposed to rain/sleet and snow. But it didn’t. Thank You Yahweh!

My dear sweet daughter came over with two of my grandchildren to stay with Mom. I had already called the dentist office and they couldn’t see her until Tuesday. So- we lied. On the  Alzheimer’s boards they call this “therapeutic fibbing.”  Lies/fibs told to make things easier on all. I told Mom we were waiting yet to see if the dentist could see her today and told her she had to stay home with my daughter. It worked out well because she had fun with the grandkids and she got to play cards (Spite & Malice) and make origami seed pots with my daughter.

When we got to the eye doctor, I called my Dear Daughter (whose name really means ‘dear one”) and pretended I was the dentist to let her know to tell Mom her appointment would be tomorrow. Mom wasn’t upset at all- except for the fact she wanted to pick out her own walker. As it turned out- there was no choosing, it had to fit her height and with her short legs, there was only one she could actually use.

When we brought it home- she was disappointed. She thought it would have a motor…? Then we figured out she thought we were getting her a scooter. Why I have no idea. But we got her to use it a bit. Hopefully she will use it and be steadier on her feet.

I came in to my home office to do some work- I left the house at 11AM and didn’t get home until 4PM.  Mom came in to my office and asked me to remove her Medic Alert Bracelet. She said she needed a rest from it. She said it hurts and is too tight. She said it hurts her bones. She said she would put it back on at bedtime, but she really needed a break from it.

 Pickles!* (*Enter your own personal swear words here) I was so conflicted! The voices in my head were saying:

“No! You can’t take it off! It doesn’t really bother her! This is an excuse. She doesn’t want to wear it. She needs it. You can’t take it off and put it on and take it off and put it on…”

“But I don’t know if it hurts or not.  It’s possible it does hurt. Her skin looks fine and I know it’s not too tight, but maybe it would be more comfortable looser? But not too loose- I don’t want it to get caught on something. How can I possibly know if it is really bothering her? And if I take it off- will she let me put it back on?”

“You can’t play this game! She will get used to it. And its for her own safety. And you don’t need one more thing to do every day--- on-off-on-off-on-off…”

“But how do I know? What if it does hurt? How annoying is it? If I can’t believe anything she says, how will I know when things are wrong and when they are not?

“Aggh! Do I have to deal with this now?? I need to work!”

“Okay- I’ll take it off. I don’t really think this is necessary. I think you just need to get used to it. But I’ll take it off.”

“Thank you- it really does hurt and I really don’t need it and I really would never go outside on my own…”

“We don’t know that.”

“But I won’t…”

“Okay there. it’s off. I need to get back to work.”

“You seem angry.”

“Mom I just need to be alone so I can work!”

She leaves. Instead of working- I look up adult day care. The county we used to live in has Adult Day Care and and Alzheimer's unit. It is one of the places Dr. P has recommended. I will call tomorrow.

While Dad and I were gone, I tried to talk to him about pre-arranging and pre-paying funerals. He doesn’t believe that’s necessary. (Bless my in-laws! They have ALL of that taken care off!) I tried to explain what could happen if one of them was in a nursing home and one of them died. How the state might get all of the money and that would leave little or nothing for funeral arrangements, but if they were paid a head of time we would be one step ahead. He thinks his $60,000 life insurance policy (which is really $20,000) and is made out to pay to Mom will cover his funeral. (But what about Mom?) And I don’t even know if that’s true- if Mom is left the money and she is  in a nursing home under Medicaid I would think it would go to Medicaid. Another thing to ask the attorney.

He also told me if Mom goes into a nursing home, he wants to stay with us. And of course- Mom isn’t “bad enough” to be placed.

Maybe not. But I don’t know how much longer I can do this. And here comes Mr. Guilt again… Are we having fun yet???

Doing the right thing stinks

I ordered medical alert bracelets for Mom and Dad.  Mom’s was through the Alzheimer’s Association Safe Return program. Dad’s is one I ordered off of Amazon.Com because he takes warfarin (a blood thinner)

Mom’s came first, so I waited until Dad’s came in and then I gave them to both of them yesterday. Both of the bracelets were loose, so my DH had to take out links.

Mom’s was intrigued at first. She liked the idea that it had on the bracelet itself her first name, that she was hard of hearing, that she had allergies, that she has asthma and high blood pressure and that she couldn’t have an MRI (although she had forgotten why) It also has an 800 number that can be called and other medical info can be given as well as who to contact if she were to get lost.

She liked it, but after I put it on her, she said we wouldn’t wear it all the time. I told her she really needed to wear it at home and wherever she went. In other words- all the time.

I gave her her night time pills and she asked me to take off the bracelet. I told her she needed to keep it on. She wasn’t happy.

I started to get ready for bed and she followed me and insisted I take it off.

“I can’t sleep with this on. I’m not used to having things on my right wrist.”

“Would you like me to put it on your left wrist?”

“No. I have too many things on my left wrist (watch). You need to take this off so I can sleep.”

“Mom, the idea is to have it on all the time. It’s a safety precaution.”

“I don’t want it.”

“Dr. P wants you to have one.”

“I don’t remember that.”

“Its true.”

“I’m not that bad yet.”

“The idea is to wear it before you get that bad. It only takes one time for you to get confused and leave the house for you to get into trouble.”

“I won’t do that.”

“Mom, I have to leave it on.”

“Then I’ll find a way to get it off myself.”

“Mom- wearing this bracelet will keep you home and out of a nursing home longer. If you take it off I’ll have to talk to Dr. P about other alternatives”

“I didn’t know wearing a bracelet could keep you out of a nursing home. If I’d known that I’d have started wearing one years ago. (sarcasm…) Take it off!”

“No. I’m going to bed. I love you.”

“yeah right.”

So- now I’ve taken away a bit more of her autonomy and her dignity. I’ve opened up the wounds from last night.

How can doing the right thing seem to be so bad at times? This stinks.

 

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."


Later:


"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?"


"No."


"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?

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!

Realization

How do I explain this? On some level I knew this, but this morning it really hit home. I have in the past, resented my mother for trying to control my life.  Those feelings resurface when Mom gives me unwanted and unsolicited advice or makes derogatory comments on the way I "do things". (Apologies to my daughter for the times- I'm afraid it might be many times- I have done the same)

What I realized this morning is I am now doing the same for/to Mom. She doesn't want me to tell her how to spend "her" money. She doesn't want me to tell her how to take her medication. She doesn't want me setting up doctors appointments. She would be angry to know I go through her closet and pull out the dirty clothes. She would be upset even more to know I have things set up with the bank to let me know when her checking account balance goes below a certain point.

She would be furious if she knew I was seeing an attorney to talk about setting up a trust, or that I've even considered going to court to get guardianship.

There is a fine line I suppose. I am fortunate in having my father's full support. I can't imagine what it would be like if Dad were not here, or even worse, if he disapproved of my taking over things. And what would I do without my DH who reminds me that the disease is talking- not my Mom? And my daughter who comes when she can, even though she is busy with her family?

I don't feel guilty for doing what I am doing. And I don't feel like I should get the martyrdom award of the year either. But finally realizing this on all levels, I hope will make me more patient and understanding in how I respond to Mom and her needs.

God knows I don't have all the answers; I just pray God will guide me to make as few mistakes as possible.