Been gone far too long!

Many of you have sent such sweet messages. I know I’ve been gone far too long and will hopefully get back to blogging again.

Of course, many things have happened and I can’t possibly recall it all- that’s why the blogging is so good.

Mom is doing okay. She is for the most part happy at the nursing home. She is, however, asking again for a new roommate. If she gets one, it will be her third. The good news is she and her old roommate are speaking again. What I really think is happening is that Mom is a nurse living in a nursing home. She sees patients all over the place and she can’t seem to help trying to “help” them.

Right now, she and her roommate aren’t getting along and when I visited the other day it was apparent to me that neither one of them could hear or understand what the other was saying. They both took what was said wrong and both got mad. If it weren’t so sad, it would be comical…

My brother came and took Dad on a trip to Washington DC and mom did okay with it. She’s been giving Dad a bit of hell since he got back, but I wouldn’t expect any different.

I try to visit once a week. Dad goes 3-4 times a week. I can’t go much more than that at this time, because the longer the visit, the dicier things get. We get along fine for about an hour. Then the “Oh I’m so glad to see you!” wears off and the complaining starts.

I am taking better care of myself- I’ve joined an exercise class (kind of a boot camp for women) that meets three mornings a week (5AM!) It helps with stress and it helps me physically as well.

My Alzheimer’s support group is doing well- we’ve met twice and have about 8 members so far.

 

I will write more soon.

 

Daughter

Alzheimer's Association 2011 Alzheimer's Disease Facts and Figures

If you don't know some who has had Alzheimer's change their lives- you will. Please share this.

65%…

Took a class today to become a support group facilitator through the Alzheimer’s Association. Very interesting and very helpful. But one fact shook me- and as I was the only caregiver in the group (the others were all professionals-nurses etc) the instructor told me a head of time that this might get to me….

 

The mortality rate is 65% higher for caregivers of someone who has Alzheimer’s than for the Alzheimer’s victim.

65%…

Dad- No- REALLY???? You said WHAT???

From my daughter to me on Wednesday night:

Okay this is probably stupid and not something to lose sleep over but I just can't seem to let it go. So I'm hoping if I say something I might be able to sleep.
After we got back and you left I was talking to grandpa and I asked him about Friday. He gave me a funny look and I said do you want to go walk out at the mall? He replied "I know your grandmother is going to want to go. Kirklands is having a big sale and lost their lease"

I didn't know what to say... My head was saying did we not just go through all this ? She's not a person u can take shopping..
I'm sitting there worried about staying there with them while you guys are gone and he wants to take her shopping at the mall?!?!?!

All I said was I am not taking her to the mall. And he changed the subject. I don't know why it's driving me nuts but it just keeps repeating in my head. I know grandpa doesn't want to acknowledge everything but is he really that oblivious?

She's gone. She's lost and every day I see her it's so much worse.

I just wanted to cry in the ER... I did this evening. That's not my grandmother. She's not even a normal person.... Sorry you already know all that. I just needed to tell u about grandpa and saying grandma is going to want to go to the mall
I love you and think about you every day

Me to my daughter: What gets me about that is that he knows Gma would be going to Daycare- why would he even think you would be taking her to the mall?
Probably when you said that, he had the Kirklands thing on his mind and was thinking- sure, yeah, Gma would like to do that.
Probably if you had said- "No Gpa- AFTER we drop Gma off at daycare" it would have brought him back to reality. I don't know.

After we went to Wal-Mart for Valentines- he knows how difficult shopping can be with her. But old habits die hard.
He knows. He looks across the table every day at her. He knows.

My daughter to me:

There are times and things he says and does sometimes..
It's like either he doesn't know, is refusing to admit it, or just doesn't care. I don't know anymore. It's hard for me since he was my only close friend for years, and right now there are times when I really don't understand or like him.
Thank you though I do feel better about yesterday. I hope today goes much better for you guys and I'll see you tomorrow.

Friday- My daughter took Mom to Daycare and took Dad to the mall. When they got home, my daughter told me she was glad they had gone to the mall. And she said she was certain Dad wouldn’t say anything to Mom because the last time they went to the mall he indicated it wouldn’t be good to tell her- it would just upset her. My daughter was happy to spend the time with him.

 

After Dinner- I sent this to my daughter… (Gpa is my Dad, Gma is my mother)

Dinner
Gpa: I don't think I told you, Cheryl and I went to the mall today.

Gma: You went to the mall? Well I wish I had...

Gpa: Yeah- we went to the Hallmark store and saw so and so and whose it and so and so etc.

Gma: You went to the mall? Did you see so and so?

Gpa: No she wasn't there. They're closing the store on Sunday.

Gma: Why are they closing the store? Can I go see them before they close?

Gpa: No you can't.

Gma: But I want to. If I had known you were going to the mall... Why did you go?

Me: (Whispering to Gpa) To get your glasses fixed.

Gpa: To go to the Hallmark store and say goodbye to everyone.

Gma: I wanted to go. Why didn't I get to go?

Me: I sent them to get Dad’s glasses fixed.

Gma: Did you get your glasses at the Mall?

Gpa: No

Me: No, he got them right by the mall.

Gma: Well that’s not where I get my glasses! I want to go to the mall.

Gpa: You can’t.

Thanks a lot Dad!

Another very long day…

The day started out beautifully. Warm 54 degree February weather. The sun shining and the ice melting. I was putting my laundry together to wash and looking forward to a calm and productive day. I could hear my mom walking into our living room and then I heard her voice and knew something was wrong.

She had lost control of her bowels while in her living room and she had tried to clean it up with the clothes she was wearing at the time.(Her night clothes)

This is the second time this has happened. The last time she had taken extra stool softeners because she was constipated. This time she says she hadn’t taken anything. It just happened.

She was calm, but obviously upset. All I could say was it would be okay and I would get it cleaned up. I told her she needed to get a shower. She thought she had cleaned herself up enough, but I insisted she take a shower. She said she couldn’t because her dirty clothes were in the tub. So I got some gloves and a plastic bag and got her clothes and put them to soak in the washer.

Dad woke up (in this case he is lucky he can’t smell much anymore) and I told him what happened. Mom got out some clean clothes and went in to take her shower. Mom told me she wanted to get some “diapers” so she wouldn’t have to worry about having this happen again.

My husband got down the SpotBot  and I got to work. Mom had her bedroom door closed. I peaked in to see if I could see any spots on the floor there. She had her bathroom door open and the shower running so I closed the door and planned on checking later.

Some time passed and all of a sudden I heard Dad yelling that Mom had fallen. I went into the bathroom and she was sitting on the floor in her bra and panties. She said she had fallen off of the toilet and hit her head and arm.

My DH had to come I and help me get her up and we got her walker. I called her doctor and they wanted her to go to the ER since she hit her head.

Dad wanted me to call an ambulance in case something was going on that we weren’t aware of. He was afraid if I tried to driver her she might get worse. So, we made the trip in the ambulance.

The ER was VERY busy and Mom was put in a bed in the hallway. I’m pretty sure in the ambulance the EMT did the basic tests for stroke and took her vitals etc. In the hallway, they took her BP (206/89) temp and put the Pulse Oximeter on. Her readings were in the high 60’s- right around 68. At one point it got up to 80, but quickly went down. Her Oxygen levels were above 95.

Of course we had to wait a long time, because of how busy they were. That’s when Mom told me I need to make an appointment for her with Pam to get her hair done! What??? She decided that her hair didn’t look good. Of course she hadn’t even had a chance to comb it that day. I’m not calling Pam!

The D.O. talked to Mom and tested her reflexes and looked at her arm.  Neither her nurse nor the D.O. seemed to understand what a cochlear implant was or that there was actually a magnet under Mom’s skin on her skull. Mom had said she hit that when she fell. The D.O. told Mom to put ice on her arm. Mom needed to use the bathroom and when she got up she was dizzy, so the D.O. wrote a prescription for Antivert. I was told it is a prescription med for vertigo or dizziness.

And then she was let go.

We got home about 2 pm and had lunch. Mom was really out of it by then. We insisted she use her walker and she got mad at Dad and I stepped in and told her Dad loves her and that is why he wants her to use it. She said she really didn’t think he loved her. When I said he did she calmly said, “Oh shut up.” I let it go and she used the walker.

I went to Pamida to get her prescription filled and to buy some Depends. The “prescription” turned out to be an over the counter med available OTC for the last 25 years (I was told) evidently its active ingredient is Meclizine- the same ingredient in Dramamine. I went ahead and got it.

I gave her a dose when I got home although she didn’t really want it. I’ll call Dr. P and see what she thinks about Mom taking it… And she said she can’t wear the Depends as they contain plastic and she is “allergic” to plastic. News to me. She said she would wear them if she needed them- and of course the AD keeps her from understanding there is no way to tell when she is going to need them.

She was quiet throughout dinner that night and when I got home from a meeting that evening Dad came to me and asked me to give Mom one of his pain pills. (Hydrocodone) I told him no. I’m not going to let them share pain meds! This was common practice when they lived by themselves, but I am DEFINITELY not comfortable with this.It’s illegal for one thing for me to give Mom Dad’s prescription pain meds and I have no idea how it would interact with all of the other meds Mom takes. Mom was not happy with me (again!) but some things I will not budge on.

Aggravating day..

Life gets in the way…

Mom had been up early, upset because she didn’t sleep well the night before.The night before she wanted me to wait to give her sleeping pill to her until later in the evening, but I always give it to her at 10pm so I can get to bed. She refused to take it at 10pm, so she didn’t get it. And she didn’t sleep well. And of course it was my fault.

My daughter has a bad cold and fell back asleep this morning. She was going to take Mom to daycare. I tried calling her when she didn’t show up at her normal time and got her voice mail right off the bat. Her husband’s phone was out of minutes so I couldn’t reach him. So my husband and I took Mom to daycare so her could see where to go and how to check her in etc…

Mom and Dad were both worried about my daughter and after my initial mad I was too.  Its hard when you can’t get a hold of someone to find out what is going on and in this day and age where we expect instant communication it makes it harder.

Instead of coming right home, my DH wanted to stop and do a bit of shopping, which of course made sense since we were already near the store. But it cut into my already busy and late starting day.

The good thing was I found out at the daycare how Mom and the hairdresser got along and I am sure this is going to work out. The daycare director had gone to the hairdresser and explained how with Alzheimer’s patients it is important for them to still have some control in the areas they can control and in this case it is how my mother’s hair is done. The hairdresser, even though she works in the nursing home, doesn’t necessarily work with AD patients. She was very willing to listen and to adapt. So the hair dresser used a hand mirror so Mom could see how she was rolling it etc and they got along just fine. Yeah!

I worked on my attitude all day. Life happens and while I’m human and get aggravated at the same things everyone else get’s aggravated with I’m also trying to remember that how I feel is my choice.

I’ve been working a bit with my therapist on this- actually we had just discussed it. So I was given the opportunity to be tested and practice… The  aggravation was the things in my nice green planner didn’t get done! But- tomorrow is another day.

Seems unreasonable to say my whole day was “ruined” by the way the day started out but that is what I was letting happen. I was grateful for prayer group on Wednesday night to get me back to center. Looking forward to Thursday! 

A Blessed Day!~

This morning when Mom got up she immediately got dressed and put on her makeup. She was ready to go visit an Adult Day (Care) Program. The only glitch in the morning was Mom couldn’t find her purse. But the mystery was solved when she went to get her cereal out of the cupboard and found it there. Mom swears Dad put it there. Dad told Mom if she wants to see who put it there she should look in the mirror.

  It was really kind of funny.

But the highlight of the day was taking Mom to Adult Daycare. She wasn’t too sure about it, but then once we got there, she fit right in.

I filled out paper work and visited with the staff and then left and ran some errands. I came back about 2:45 pm and found Mom sitting and visiting with people. I asked her if she was ready to go home and she said:

“Do I have to go now? There are still more things to do! I want to stay for the whole day.”

I almost cried. I couldn’t believe how happy she was. She stayed for a snack of animal crackers and then decided she could come home. But she definitely wants to go back.

She talked the whole way home about what she did. “Volley Ball” with a balloon, snacks, poetry, lunch, another exercise class, a game called “You Be The Judge.” She loved the staff and felt good with the people. She also found out they have Mass on Friday’s morning and that she can get her hair done. She asked if she can go back.

I asked Mom how often she wants to go, and she asked what she can afford. I asked her if she wanted to start at 2 days a week and she immediately asked if she could go at least three and preferably four…

We will get a schedule set up and get her going! She wants to go on Monday. She is so excited.

I am so happy. This may mean a world of difference for all of us. Thank you, thank you, thank you Lord!

Something for me…

Today I went to see a counselor/life coach/therapist. This is a good thing for me. I’ve done this at various times in my life. Sometimes when things overwhelm and seem too confusing its good to have someone that does not have an emotional stake in what is going on to give an impartial assessment.

I think God sent me to this particular person. I Googled “life coach” in the area close by- and the first one that I looked at is the one I chose to contact. Verified by Psychology Today. A Christian. 10+ years experience (I’m not sure how that is possible- she looks like she’s about 19 or 20!)

We got in contact through email and met for the first time today. I‘ve forgotten how difficult it is to try to explain your whole life in an hour or less! Oh my goodness! And of course after I left I thought- “ should have told her this- I should have told her that…”

My DH and I saw a marriage counselor a few years ago (the best money we EVER spent!) and when I saw her privately she told me two things I’ll never forget. “You have to live your life now- you can’t wait until your parents give you their approval or until they die. You will never be able to please your mother.”

And then after a family meeting which included our parents) “Please don’t tell your mother what I told you. I do not want her showing up at my door.”

I listened to her. And while that may seem to some to be odd that my old therapist would say that, she had good reason. 

I should have told my new therapist this… I will next time I see her.  I love Mom and have always loved her.But sometimes we weren’t good for each other… I’m not sure what that means for our lives now. But I think we are making the best we can of it. Praying working with SM (my therapist) will help me make sense of what I need to be doing to get things under control in my life so I can live it the way God intends me to live it…

Another LONGGG Day…

I was up early again- always am up early on Sundays. It’s a habit and I like it. I like being at the church at 8AM and having a full hour to greet people and work out any problems that may come up.

Mom was up at 6AM but didn’t come looking for me. So I took her pills to her at 7AM. She looked at me in surprise.

“What are you doing up so early?”

“Well, I’m here to give you your pills.”

“Already? It’s early.”

“Yes, you need these before breakfast.”

Takes the pills.

I finish getting ready for church.

At 7:55AM I go in to give her the after breakfast pills. She normally eats as soon as she receives her before breakfast pills, But not today…

“Why are you bringing me these? I haven’t eaten yet. I never eat before 8AM.”

Smile. Leave and go to church. The pills can wait till I get home…

**************************

Meet in the afternoon with the family of the deceased. We have her memorial service pretty well planned I think. I go home and lay on the couch and nap while The Boy watches football. DH is at work.

Someone is shaking me awake and talking to me. Its Mom. I don’t hear what she says.

“What do you want Mom?”

Ignores me-to The Boy:

“Are you watching football?””

Makes comments about the Bears and the Packers.

“Mom- what did you want?”

“What do you mean what do I want?”

“I didn’t hear what you said. You woke me up.”

“You were sleeping? I thought you were watching football.”

“No- what did you want.”

“I don’t know. Oh yes- When are we having dinner? Oh wait- don’t tell me. DH is working so it won’t be until about 7PM.”

“That’s right.”

“Well- that was a stupid thing for you to ask me!”

“What? Mom?”

“Of course I know  when we are going to eat- why would you even ask me?”

“Huh?”

Mom walks out.

Good night Gracie…

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.

 

Sometimes Good Days are Really Bad Days in Disguise

Mom had a series of pretty good days. She did well with her doctor’s appointments on Tuesday and it was a relief to talk with her and the doctor about Adult Day (Care) Programs. Wednesday, she really seemed to be doing pretty good too. She laughed some. It was a little confusing for her because  it was cleaning day, but the weather was bad and so the cleaning ladies postponed until Thursday.

 

Wed night, Mom thought the next day was Friday and was anxious to get her hair permed. Thursday she was “with it” and was a little put out that the cleaning ladies were late and also wasn’t happy that I was at the church all day. But she was okay.

 

Friday was hair day and Mom was up and dressed and had her hearing aid in at 6:30 AM! She was so looking forward to her perm. I’ve learned now to write notes and leave them on the kitchen counter to let her know where I am, and what time she needs to be ready if we go somewhere.

Mom got her perm on Friday morning and when I went to pick her up she was angry and upset. She was cold. She said she had never been so cold in her life. She told Pam she wasn’t coming back for a perm until summer. Pam told me the perm solution was cold and she thought it kind of chilled Mom to the bone. Mom was not happy and even though we told her how nice her hair looked- it didn’t make much difference. She was with it and she was angry.

At dinner, she lost a crown on one of her teeth. And when I called, I found out the dentist would be closed on Saturday.

That night when I went to give her pills to her, she was sitting in her chair with her hands over her face. It was such a picture of hopelessness…

I asked her what was wrong. She looked at me and said,

“I’m depressed. I’m very depressed. I hate this.”

“What are depressed about Mom?”

“What do you mean, what am I depressed about?? I’ve had bad hearing all my life, I have lichen planus in my mouth, things don’t taste right, sweet things taste salty. My mouth is always a mess. And now- and now I have this awful Alzheimer’s! I’ve tried to be a good person. I say my rosary and pray and I can’t help but end my prayers with WHY?”

“I know Mom it isn’t fair.”

“I’m stuck living here. No no! Don’t get me wrong! I’m grateful to be here, but I didn’t want to end up here. This place is lovely. But it’s not mine. I can’t have my own money anymore. I can’t drive. I can’t talk on the telephone. I can’t go to the mall and visit with people. I can’t go to my own hairdresser. I can’t I can’t I can’t!

There was a silence.

“Mom, try counting your blessings…”

“You don’t think I count my blessings every day?!” She was yelling.

“Mom, I’ll talk with you, but if the yelling starts and an argument starts, I’m going to bed.”

“I’m sorry! I don’t want to argue. I know I have blessings. But sometimes I wonder if there is any reason why I shouldn’t  just give up.”

“Because you don’t give up. Because God is with you even when you feel alone. Mom, let’s see about you going to one of the Adult Day Programs Dr. P talked about. At least you would get out of the house once a week or so and you could be around other people going through the same thing you are going through.”

“I think I need to do that.”

“I do too. I love you Mom.”

“I love you too. And I don’t mean to be ungrateful. I am amazed at every thing you do for your father and I. I know its not easy.”

“no- sometimes its not.”

“you need to go to bed. Thank you for talking to me.”

“okay Mom.”

“Good night.”

“Good night.”

Hug. Kiss.

She was having a “Good Day.” She knew what was going on. And it made her so sad. Good days are not always good. Good days are knowing how bad things really are. She was for a few minutes, my Mom. And she knew- she knew how much she had lost and was losing. And I don’t think Good Days are always good. Sometimes they are painful. Sometimes they are bad.

 

 

Irony

Saturday Mom had a bad day. I don’t know how else to put it except she was really out of it. There is a vacant look in her eyes on these days. She seems to lose interest in anything happening around her. When you talk with her, she will forget what you’ve said within moments.

There is usually little anger on those days- she just seems dead in spirit.

Sunday I was up at 4:30 with a lot to do before worship. I don’t do well staying up late- I get a lot more done in the early hours than I do when I stay up past 10pm. I had decided to change the beginning of my sermon and I needed to get some fruit together for our 1st Sunday Fellowship (Held on the second Sunday this month because of the holidays) So I was up and dressed and busy when Mom got up at 6:30.

I heard her in the kitchen at 6:30. I went in to check on her and found  she had set up her cereal to put in the microwave. I waited about 15 minutes and went in her living room to give her her pills.

She was a little out of it, but seemed  more tired than anything else. She did not have her hearing aid in so we really couldn’t talk.

I had my breakfast and continued to get ready for church. As I think I said in my last blog, I try to be at the church at 8AM. Of course living right next door makes it pretty easy!

At 8AM Mom sill hadn’t fixed her breakfast- which means I couldn’t give her her after breakfast pills. I went in and told her I was going to church and left a note explaining I would give her her pills after I got home from church.

My son came over to the church about 8:45. Mom had eaten breakfast. He said he went into the bathroom ( “his and Dad’s bathroom”) to get dressed and heard Gma (our abbreviation for Grandma) standing outside the door talking to herself.

“I wanted to use that bathroom. I guess I’ll have to use my bathroom. But I don’t want to wake up D- I’ll have to be quiet.”

My son said the next thing he heard was Gma and Gpa’s bedroom door opening and Gma yelling “Good Morning!”

Church went well and then I went home.Mom had already eaten lunch. I gave Mom her pills.  I walked in to her living room and said, “Here’s your after breakfast pills for after lunch.”  mom heard me say, “You forgot your pills after breakfast.” And she got angry. She started yelling at me that she didn’t forget her pills, I was late.

This always surprises me when she does this. I know she must have been waiting o say something. She was upset and it wouldn’t have mattered probably what I said.

I got her to calm down and gave her the pills. She no longer had the look in her eyes of being out of it, she had the look in her eyes that means she ready for a fight…

A little bit later, Fred called. Fred is from a Catholic church in the area that does home visits and brings communion to shut ins. Fred had come over earlier in the week and Mom really liked him. So he called and asked if he could bring Mom communion. I went into her living room to tell her Fred was coming.

“Mom?”

“WHAT?”

“Mom, Fred called and…

“WHAT? Who called?”

“Fred called and…

“What did he say?”

“”Fred called and he’s coming over to give you communion.”

“When will he get here?”

“Soon- I don’t know the exact time.”

I started to walk out and she stopped me.

“You looked upset when you were telling me that. Why?”

“I guess because you interrupted me when I was trying to tell you something.”

“I didn’t interrupt you.”

“Yes you did.”

“You have to get my attention first. I don’t hear well.”

“Okay Mom.” Turn to leave.

“Where are you going! We need to “discuss” this.”

I walked out- if I had stayed it would have been a no win fight.

Dad was aggravated by being woken up so early and so last night he asked me if I could give Mom her sleeping pill later at night so maybe she would sleep later in the day. He feels she should sleep till 8AM like he does.

After my last blog about the schedule I’ve got Mom on, I almost laughed. But I was too tired. I told him I couldn’t stay up late to do that. He asked if he could give her the pill at 11 PM. I’ll admit I was slightly irritated. Dad doesn’t always remember to take his pills on time and last week forgot to take his bedtime pills twice. So I told him yes, we would try it, but reminded him that sometimes he forgets his pills.

And then I got mad at myself for saying yes. I don’t need Mom to sleep later! I’ve got things to do. I have to work. I can’t wait around for people to get up. So I got myself all worked up and ticked off. My own doing. No one else’s.

It was suggested I hire someone to be here in the mornings to give Mom her pills whenever she gets up. I’m going to look into it, but I believe state laws prohibit anyone giving meds unless they are licensed to do so, and in my state I believe you have to be an RN.

A Different Kettle of Fish

Since Mom and Dad moved in with us last in March of 2009, my mother has been drinking tea she makes in the microwave.

 

My DH has been concerned that she might get it too hot and burn herself, but I’ve been more afraid of her using the stove. Mom has a cup of tea with her from the moment she gets up to the moment she goes to bed. She reheats her tea in the microwave many times a day. Many times we find it in the microwave, completely forgotten. My DH was considering buying her a small microwave for Christmas because she was getting upset whenever anyone else wanted to use it.

But within the last couple of weeks, Mom has decided that she wants to use the tea kettle on top of the stove.

 

It has a very LOUD whistle. And that is good, except if Mom isn’t in the kitchen, she can’t hear it. And if she is in the kitchen without her hearing aids, she can’t hear it . So, I’ve told her if she uses the stove to make tea, she must stay in the kitchen the whole time the tea kettle is on the stove. I knew saying this was rather pointless. Mom gets distracted and has difficulty staying with one thing for very long. She has done pretty good- but she has been switching back and forth  from the tea kettle to the microwave and then back.

But in the last couple of days- the tea kettle has become an issue. It has been left unattended and its piercing scream brings me running! And that is good- but what if Mom and Dad are here by themselves and Mom leaves it that way. Dad won’t hear it if he is asleep with the door closed and if Mom is not in the room or has her hearing aids out- then it could be a dangerous situation.  And when my DH is asleep he hears nothing either. So my DH decided to hide the tea kettle.

After waking up from a needed Sunday afternoon nap, I went into the kitchen to find a very small pan of water on the stove. Uh oh.

So I got out the tea kettle and then went in to talk to Mom and Dad. I told her the tea kettle was out again, but said reminded her she has to stay in the kitchen with it. Her reply was of course that she NEVER leaves the kitchen when making tea. Dad disagreed with her and that began a mini-argument. I told Mom it was a safety issue. She told me she doesn’t like making tea with the microwave.  She only likes tea made with the the tea kettle. I told her that was fine, but she has to stay in the kitchen- it’s a safety issue. She laughed.

Dad got mad and told her it wasn’t funny.

Then she started giggling. She put her newspaper up to her face and pulled it down like she was playing peek-a-boo and she started giggling. Dad got really upset and I tried to calm him down.

I said “Mom, if you leave it on and leave the kitchen we might have to take the knobs off the stove.” She said “Well, then I guess I’ll have to move!” And started giggling again. It was kind of…cute. Like a small child. It was better than the anger. But it cause Dad to be upset. And I almost burst out laughing- which would have made it worse for Dad.

This is a different kettle of fish.

I think its time for an electric tea kettle with an automatic shut off…

A month gone by…

Its been over a month since I’ve written on this blog. Lots of things have happened- after all life doesn’t ever stand still. Many conversations have come and gone. Christmas, Christmas shopping, snow storms, conversations- all have occurred and are mostly forgotten.

Is Mom worse than she was when she moved here in March? Definitely. But that shouldn’t be a surprise. I think she enjoyed Christmas. When she remembered it was Christmas… Those were strange conversations! But all in all it went okay.

My DH and I went away for a few days after Christmas, but our vacation was cut short by the death of a church member. I could have had someone else do the service and stayed on vacation- but I needed to be here for her family and the church family. My two nights away really wasn’t enough and I will have to look for some other ways to “get away.”

My DH and I were both getting testy before we left and even though the time gone wasn’t enough- it was still better than nothing. We did do some talking and we did enjoy not being home…

My daughter and two of her kids came and stayed with my parents while we were gone and I think it went well. My son and daughter talked to me at length when I got back about changes they see that need to be made and I’m seriously considering them.

Today we actually close on Mom and Dad’s Condo- Mom doesn’t know. I am doing all the signing as power of attorney. She will want to spend the money (we’ve had this discussion many, many times) and it really needs to be taken care of so we have it to take care of her. (and Dad if need be) Even though she wouldn’t have access to the money- she would truly make life miserable for the rest of us if she knew it was in the bank and she couldn’t spend it.

So today is the day to close on the condo and to finish creating the funeral service for the Angel of our town. I hope to get back to writing on a daily or close to daily schedule again.

 

Change of Plans

It is not quite 5 AM and we should be almost to the hospital for Dad’s surgery.

Yesterday afternoon the hospital called us at about 2:30 pm to confirm the time of Dad’s surgery and went through all the pre-surgical questions and gave me all of the pre-surgical instructions.

Twenty minutes later I get a phone call from the doctor’s office.

Them: “Dr. C has rescheduled your father’s surgery to 11/15. Monday.”

Me: 11:15? We just got the call to be there at 5:30 AM.

Them:  No- not 11:15 AM—Monday -- Nov 15th. You will probably need to have him here at 5:30 AM. We will call you on Friday afternoon to verify the time.

Me: Wait- no. He is scheduled for tomorrow.

Them: Dr. C had to change the day. There’s an emergency surgery scheduled tomorrow now.

Me: But- wait. We have everything arranged. People have taken time off work, schedules have been re-arranged. I don’t understand.

Them: Dr. C had to change the date of the surgery. I’m sorry.

Me: I am too. Good bye. (CLICK)

Earlier in the day I spoke with my daughter who had unbeknownst to me made arrangements to make sure she was available to come and stay at our house last night, so she would be able to help me get my folks up and out early this morning.

She and my son had figured it all out:

Where they were going to leave my son’s car so he could attend class on Thursday evening.

My son-in-law had made arrangements at work to take Wed night and Thu night off so he could stay at home with the kids so my DD could be here with us. (He’s a truck driver) This means he has to pick up a couple of Sunday night runs to make up for the lost money, but he was willing to do that.

She had planned on bringing dinner so I wouldn’t have to worry about it since I had meetings last night.

I called her. And told her that if they were still in Big Town they should probably just pick up my son’s vehicle and bring it home.

Agggh. I don’t feel like writing this all out.

To shorten an already long story- I called the hospital “patient relations” hot line and told them what was going on. I cried. I explained  how difficult it has been with getting these appointments and the lack of communication within the hospital about my dad’s care.

They called the doctor’s office and someone from there called me back. I again explained my concerns- my dad has to wait 5 more days. He has been waiting for the next stroke. He has been off of his blood thinner and now will be for 5 more days. My mother has Alzheimer’s. We have to take her into consideration and make plans for someone to be with her at the hospital at all times. All our plans were made.  This is a disruption in the lives of more than one person. etc etc.

She was sympathetic. The doctor had a tough choice to make. He chose to treat someone else he thinks is more in danger than my dad. Now all his surgery’s are backed up.

So here we are. The wait is still on.  I can’t read how Dad is taking it. I don’t think it has hit Mom yet (although we told her) that Monday is her birthday.

I think I have calmed down. Went to prayer group and apologized to God for being so anxious. Felt more calm after that.

Switching gears now and gearing up for Monday.

 

 

Catching Up- a day at the clinic

Spent all day yesterday at the Hospital/Clinic with Dad as he went through all of his pre-op appointments. Surgery is scheduled for November 11th.

He had 9 appointments in all. The first one was at 8:00 am and the last at 3:00 pm. All looked good for the surgery. He will probably be the first surgery of the day- and will probably need to be at the hospital at 5:30 am on the 11th. We will be called the afternoon before.

It was a quiet and peaceful day. Mom stayed home with my DH and Dad and I were able to spend our time in silence and in quiet conversation. Some good discussion, but mostly quiet. And both of us grateful that Mom wasn't with us.

That may sound harsh, but one doctor's appointment for Dad with Mom there is a trial.  Getting from one place to another is a slow process and it is wrought with interruption.  When another appointment or two is added...

There are always people she "thinks" she knows and she feels she must stop and talk. When she finds out she doesn't know them, then they must hear the long explanation of how she was a nurse here for 40 years etc etc etc.

And then there are people she does know from the auxiliary and we must stop and talk to each one. 

Then there are the pregnant ladies who must know that mom was once a nurse in OB at this very hospital and she must know who their doctor is. And then we pray we can get her away before she starts touching their "baby bumps."

There are the ladies taking home their babies in the waiting area for someone to get the car and pick them up. We try to steer clear of those, Mom wants to look at the babies closely and touch them and while we know she means well, others do not.

There are the patients in wheel chairs Mom thinks she must push or help them figure out how the wheel chair works.

There are the complaints about how she should have brought her cane as her knees hurt or how she wish she had left her cane at home, she doesn't need it. There is the juggling of two books, and a heavy purse (and sometimes a cane as well) and the occasional water bottle or coffee or both.

There is the irritation when we tell her we must hurry and there is the resignation  (on our part) when we realize that is not going to happen.

There is the meal or snack that must be eaten out and the indecision as to what that should be. There is the questioning of everyone with her as to what they are going to eat and then the painful decision making as to what she will eat. There is the "I will not leave this table until I finish my coffee/tea I just poured" even if we are running late for another appointment.

There is the constant questioning as to what everyone is saying/has said or possibly will say. Not just our own conversations, but those of the people around us.

So- it was a quiet and peaceful day for Dad and I. Just the two of us, our own thoughts, speaking when we wished to and visiting if we wished with people we wished to visit with. (bad grammar I know)

My DH on the other hand,  took Mom to get her hair done and then took her out to lunch at a favorite local pizza restaurant. While there, Mom started talking (loudly) about  being fitted for her first diaphragm at the gynecologist office!

They had some other discussions as well and when my DH went to leave, a gentleman stopped him and told him the table-talk about the gynecologist office was inappropriate.  D politely (I hope!) asked the man if they have a family member with Alzheimer's and pointed out that chances are if they don't they will and he hoped the best for them.

Mom seemed to enjoy her time with my DH.  And how fun for him to hear the old diaphragm story! Love that man!

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.

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."

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?