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.

 

Conversations

Mom: Your Dad’s bathroom door is closed.
Me: Okay…
Mom: Your dad is taking a nap.
Me: Okay…?
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?
Me: Yes
Mom: (relieved) Good!

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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.
Mom pouts.

Thanksgiving

Thanksgiving Day! My only responsibilities were to take a grape salad to my mother-in-law and father-in-law’s house. Dad took the last bottle of his wine we had in the fridge as he always takes wine as a hostess gift.
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.

A Realization

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…

My Daughter

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...
Mom

Dad is home

Dad is home. He came home yesterday and is tired, but very glad to be here.  Praying things will settle down in the hospital area for awhile!

Dad Still in Hospital

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.

Caregivers

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.

So much going on…

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.

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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…

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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.

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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.

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Bills need to be paid, banking done, people called, laundry, meals etc. Life just keeps on happening. So much going on…

Dad’s Latest Surgery

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!