Sunday, November 28, 2010
Mom: Your dad is taking a nap.
Mom: I don’t think our grandson is in there. The light is off.
Me: No, he’s in the garage working on his car.
Mom: But the bathroom door is CLOSED. (panicky)
Me: You can open the door Mom.
Mom: Are you sure its okay?
Mom: (relieved) Good!
I hear Mom and Dad in the kitchen arguing. I can hear the microwave running.
I walk in and Mom is holding her cup with a teabag in it. Dad is microwaving a potpie. I can see the problem.
Me: Are we having problems sharing?
Mom: Yes! Your father won’t let me use the microwave!
Dad: I am fixing my lunch!
Mom: Well how much longer? I just want to make a cup of tea.
Dad: Use the tea kettle!
Mom: No! I will wait for the microwave.
Dad: I’ll just stop it now and let you use it.
Me: No Dad. Finish heating your lunch Mom can wait a minute.
Saturday, November 27, 2010
As can be expected, going somewhere else and being around a lot of different people is difficult for someone with Alzheimer’s. It is also difficult for someone with a profound hearing loss. And when you put the two together it makes it even more difficult.
It was nice I wasn’t cooking so there wasn’t any fallout as far as the food goes. No complaints from Mom. The night before there were complaints as I didn’t make the acorn squash the same way she used to make it and so it wasn’t right. Sometimes I don’t think she realizes she talks under her breath and that I can hear her what she says. Other times I’m not so sure. I just keep telling myself that I really am a decent cook and I can’t take what she says to heart, but it is hard.
Mom gave my son-in-law a hard time at first- out of the blue wanted to know “What is your problem?” when he was talking with my son. This lead to a confusing bit of conversation. My SIL hasn’t had many one on one confusing conversations with Mom yet, so this one kind of threw him. He wasn’t sure what to say or do. She was upset with him and he didn’t know why.
One of the most curious things that happened was when Mom went to the closet and got her coat and put it on. None of us were ready to leave yet…but it was obvious she was ready! My DH got a bit upset- he didn’t say anything to Mom, but he remained in his seat. He wasn’t ready to leave his parents yet and I don’t blame him. In the end, we left earlier than we would have liked to.
Wednesday, November 24, 2010
At times it seems to me that Mom just doesn’t trust me. That feeling is of course hurtful. But upon reflection, something happened yesterday that made me realize it isn’t just me.
My DD (dear daughter) was over and I asked her to look at Mom’s printer to see if it would be possible to get it to work. Mom has an older computer with Windows XP. I’ve looked into getting her a new printer, but haven’t found one that is compatible with her computer and operating system.
DD let me know it wasn’t going to work and so I suggested she look to see if she could get Mom’s computer to print on Dad’s printer through the network. Dad has a Mac. My DD was able to get it all to work (beauty and brains all in one package!) and the day was saved.
But then Mom came back to DD and told her she couldn’t find her “spell checker.” She suggested DD had done something to her computer when she set it up to print on Dad’s printer and lost her spell checker.
DD explained that was not the case (not possible) and Mom went back to her computer. She came back and said she found her spell checker, but it wasn’t spelling right.
Mom came looking for a dictionary. I asked her what she was having problems with and she told me she needed to know how to spell “poinsettia.” She said the spell checker was wrong.
So she got the dictionary, looked it up and took it to Dad and asked him if the dictionary was right!
She didn’t trust the spell checker and she didn’t trust the dictionary. If she can’t trust those two things, why would I think she would trust me or trust anyone else for that matter? If it doesn’t agree with her way of thinking- its wrong. That’s the Alzheimer’s. There is no reasoning. Its not personal. Its just what it is.
Now from the outside- this may seem a no brainer. But really, think about it. If someone you loves, someone you are trying to help and take care of, just doesn’t believe what you say- its hard not to take it personally.
This is a learning process for me as I’m sure it is for others. When you become a caregiver for someone with Alzheimer’s you aren’t given an instruction booklet that explains exactly what you will go through. There are many books, many websites etc., but you don’t know and cannot expect to know what it will be like until you go through it. Alzheimer’s victims are not all the same and their reaction to the disease is not going to be the same.
It’s a journey. A bumpy, rocky journey with some light hearted moments and some painful moments and some just really absurd moments.
The realizations of the reality come in bits and pieces…
Tuesday, November 23, 2010
My daughter writes her own blog titled “Life’s Small Blessings.” She recently just wrote about the things she is thankful for. It is a lovely piece of writing and I am so proud of her.
I know that in that piece she only wrote briefly about our relationship, but it was enough to prompt me to respond to her. I would like to share that response.
Sweet daughter- you whose name means "Dear One" --we have always been more alike than we ever were different.
Don't let that scare you. That's why at times we clashed- you had to find your own identity and you have done that admirably. I had to let you find that identity and those things that made you so much like me were also those things that scared me.
But you are your own person. We may share some of the same traits (and I see that in your writing) but you are your own person with your own life to lead, your own path to follow.
As time goes own, we will celebrate our differences as well as our alikeness and we will praise God for it all.
What a blessing you have been to me. During the good times and during the bad. My first born. My dear one, my gift from God.
Could I make it through all of what is happening right now without you? Yes. God would get me through. But I am so happy (and that word is not enough) that you are here with me, going through this with me. Being my friend as well as my daughter. I love you- the girl you were and the woman you have become.
You are one of MY blessings...
Monday, November 22, 2010
Sunday, November 21, 2010
Dad is still in the hospital though we are hoping he will come home today. His heart rate and blood pressure are not cooperating with each other, so to make a long story short, they have rearranged his heart meds in hope that this will bring his heart rate down without bottoming out his BP.
Its been a long week. Hospital visits where you stay in the room waiting for a doctor to come in to find out some news are exhausting. That was Friday. I sat in the chair in Dad ‘s room from 9am until we finally heard something at 4pm. When I got up to use the bathroom, I told my son not to let a doctor leave if they should happen to come in.
Mom hasn’t seen Dad in two days. Friday is of course hair day, and I went in early (before her hair appointment) so I could ‘catch’ the doctor and find out what was happening. That led to the all day event of sitting in the chair. When I got home, Mom was angry she hadn’t gone with me. She thought I left after her hair appointment and just didn’t take her with me. I tried to explain I left at 8:30am and she wasn’t even dressed yet.
Then yesterday- the fog was so heavy we couldn’t even see across the street. Dad called and said he would be there at least until Sunday morning. I asked him if he would mind if we stayed home and he was fine with that. He knows I’ve missed a lot at church and needed to get ready for Sunday.
So Mom missed seeing him for two days. I’m praying he’ll be able to come home today.
Wednesday, November 17, 2010
Note: I write this blog for many reasons. Part of it is therapy. Part of it is to vent. Part of it is to chronicle events. I’m not nearly perfect enough to have been given this task of caregiver, but with God’s help I will muddle through. I wish my posts were always upbeat and showed what a wonderful human being I am. But I’m trying to keep it real…
When you are the caregiver or the parent of a small child, you teach as well as love and nurture. You get excited when a child makes progress and learns new things. Talking, walking and potty training are some of the biggest early steps we celebrate. And then there are the later accomplishments that seem to pop up all the time- learning how to read, to write, to add and subtract. Learning how to defrag the hard drive of the computer…
All these things are accomplishments we relish as parents. We don’t get too frustrated (usually) because we know that there are steps that have to be taken before certain things are learned. usually crawling comes before pulling up which comes before walking.
Tying shoes is something that takes a lot of patience. And we don’t get upset because we know someday they will understand and tying shoes will be second nature.
When you are the caregiver of an adult with Alzheimer’s there is no learning. There are no accomplishments that are celebrated. No one thinks, “Yeah! Mom forgot how to tie her shoes today!” There is no way to know what the next step will be.
What is known today may not be known tomorrow and what is known now maybe forgotten in two hours, only to resurrect itself in three days. It is confusing not only to the person with AD, but to all those around them.
Friends who see the person with AD sometimes make comments like, “He really doesn’t seem that bad.” Of course, they haven’t been with the AD patient in the pizza parlor when the person talks about private intimate details of their sex life loud enough for all to hear.
What is cute in a child, for example- “Hey Daddy! I just went poo!” is not so endearing when an adult yells it across the room in a crowded public venue.
Caregivers need help. Lots of help and support and understanding. This emotional roller coaster is overwhelming at times. The rabbit holes we go down lead us more times than not to the Mad Tea Party and to the Red Queen shouting “Off with their heads!”
Would I give up being a caregiver? Hell yes! I’d give up my mom swearing at me and complaining to me and accusing me of things I haven’t done. I’d give up waiting for the next shoe to drop. I’d give up watching my mom try to cut her meat and needing help. I’d give up playing pharmacist and nurse and ‘baby sitter’ and meanest daughter in the whole wide world. I’d give up the lack of privacy. I’d give up the repetitive questioning and the probability (the reality) that things will only get worse. I’d give it all up. But I won’t. I love my mom and though she is not the same person she once was, she is still my mom.
Dad is still in the hospital in ICU. Sat up in a chair most of the day. Walked around. But BP kept going too low- 96/46. 98/56. 101/56…
They ended up giving him dopamine to increase his blood pressure. Last night it seems BP was okay- but heart rate wasn’t. I don’t know all the details.
I am trying to eat a heart healthy diet. I really am tired of Cardiology and all this entails and would rather give up chocolate cake and greasy hamburgers than to end up with a scar going down my chest and both sides of my neck. My cholesterol has “always” been too high and I can’t take statin drugs. And its up to me what I put in my mouth.
Eating out is a pain- what you think might be healthy sometimes turn out to be horrible. Case in point- we have been eating a lot at Perkins because it is close to the hospital-
I chose to eat the Cavatappi Marinara Pasta with Chicken. Sounds healthy- pasta, marinara sauce and grilled chicken. Okay- without the sliced hoagie and whipped butter- the dish had 970 calories and 53 grams of fat! Why?? And using their calculator I have found they have NO heart healthy dishes on their menu. When I have time (HA!) I will write them a letter. Their broccoli has 5 grams of fat…
Mom is having a really difficult time with this hospitalization. She seems to be losing words. She misses Dad so much! Even though they mainly watch TV together, its having that warm presence in the room with you that matters to her.
She got a birthday card from my mother-in-law and didn’t know who that was- she thought it was from my daughter.
She asked for two magazines in the surgical waiting room when she wanted rubber bands.
She can’t remember the names of her best friend’s children. She is upset because her best friend has grey hair and doesn’t remember she has had it for many years.
She thinks I have control over whether or not her emails get to the people they are sent to and thinks I am not letting them through.
She found some medication in her robe pocket and in a moment of clarity realized she needed to give them to me. The next day, she tells me someone must have put them in her pocket to make her think she is going crazy, but she would NEVER do that.
She keeps telling people Dad had surgery in his chest.
My church’s boiler died and decisions are being made on what to do now. I’m not much help, as I am not around right now.
Church services still need to be planned, and sermons’ written.
Bills need to be paid, banking done, people called, laundry, meals etc. Life just keeps on happening. So much going on…
Monday, November 15, 2010
Just a quick post- Dad is doing well after having carotid artery surgery this morning. He is sitting up in bed taking nourishment and entertaining his nurses. He does have a wonderful black eye, probably from the tape they used to tape his eyes shut during surgery…
He is in ICU but hopefully will be in a step-down or regular room tomorrow.
God is good!
Thursday, November 11, 2010
Mom is having a difficult time remembering when Dad is going to have his surgery. It happens to be her birthday that day (November 15) and it seems she has not been able to put those two ideas together. She did have a doctor’s appointment scheduled for that day, but I have canceled it. The office is to call me with a new day and time.
Mom scratched off her appointment from her calendar, but keeps asking me and Dad why she can’t go. And then she wants the new date and time- but there isn’t one yet. So this is confusing to her as well.
She wants me to take her to Mass on Saturday night and I will try to do so. She said she is having trouble following the Mass on TV.
Today has been a hard day for her. I hope tomorrow is better.
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.
Monday, November 8, 2010
I believe I may go totally insane. One person should not, cannot be responsible for so much stuff!
How- how can I be at my parents condo so the water company can replace a meter that for some strange reason all of a sudden needs replaced when they don’t even live there and are not using any water??? Why can’t they realize that when its sitting empty and the toilet is not even being flushed that they aren’t using any water??? How hard is that to understand???
Why- why do I keep getting letters from the same financial groups of my parents telling me that they can’t find the POA’s I’ve sent in. Or that once they find the POA’s they need to verify my signature by having a paper notarized and then they can’t find the @$#@^ POA’s again and I need to send them again and then the notary date is out of date and the cycle just keeps going and going and going.
Why- why does the Health Care Insurance company (for Medicare) that my parents have put in one blank piece of paper for every piece of paper with printing on it? And why don’t they print something on the backs of paper except “This page is intentionally left blank?” A statement that could be printed on two pieces of paper takes 8 pieces of paper! It is ridiculous.
Why-how- does a major cable company like Mediacom announce a rate hike and then have a nationwide outage of phone and internet service? And why is it intermittent and why do I have to be here between 12-5 so they can check my system when my system was working fine until this so called nationwide outage?
And why is the church- 50 feet from my house- having no problems with its service?
Why did I just find an obviously used paper plate in the cabinet? Crumbs don’t lie!
And why am I worked up over all this …stuff…?
Dad: The first words your mother said to me were:"I'm angry with you!"
Me: Why is she angry?
Dad: I asked her why and she said: "If you don't know why, I'm not going to tell you!"
Me: Laughing- Better you than me Dad!
Dad: Thanks kid- your time will come!
Scene: Giving Mom her after breakfast pills
Mom: My mouth is a mess.
Me: Do you have a lesion from your Lichen Planus?
Mom: I think so.
Me: Are you using the dental paste the doctor gave you?
Mom: It's not really a paste. But there is the other medicine you told me I could take, but I don't like it either. I need a steroid.
Me: The last time we went into the doctors, they wouldn't give you a steroid for that.
Mom: I need that steroid that starts with the letter "P." I think...
Me: We can talk to Dr. P when we see her next week, but now you should use the topical medicine they gave you.
Mom: Why can't I remember what that steroid is? I need to take it.
Me: Use the topical stuff and then we can ask about the steroid.
Mom: They probably won't give me a steroid because I refuse to take them. They make me feel crazy. I don't like that feeling.
Me: Okay. Mom, if you don't use the topical medicine the way its prescribed it won't get better.
Mom: I KNOW THAT.
Scene: Drinking coffee with Mom in her living room. Quiet and then:
Mom: You got me eating blueberries with my cereal and I like it.
Mom: I've never seen them so cheap.
Mom: The blueberries.
Mom: I've never seen them so cheap.
Me: I'm not following...
Mom: When you bought blueberries they were cheap.
Mom: How did you get them so cheap?
Me: I don't know...
Mom: Don't you understand what I'm talking about?? (upset)
Me: No, I guess not... maybe I need more coffee?
Mom: Well I thought I could make myself more clear.
Saturday, November 6, 2010
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!