Tuesday, September 28, 2010

Thoughts on Anonymous' Response

Anonymous said...

I think maybe you should adjust your view of "she denies." How about "sadly, she has lost the memory, so for her, it did not happen"

I have been mulling this over since I read it. I am taking a look at my attitude about what is going on in our lives and how I feel about it. I am also trying even harder to be empathetic to what is going on in my mom's world. I aapreciate the remarks, because they have really made me think.

I know this may seem strange to some, but I am still going through the shock and awe of what this disease does and how it has changed and is changing my mom.

Yes- it is sad that she has lost the memory so for her it did not happen. Its more than sad.

It is also puzzling and disturbing to me when these things happen and I am forced to realize, again and again and again that reasoning powers leave the mind of someone with this disease. And so even though they can see a picture of themselves at an event, they can't accept they must have been there.

I'm not upset with my mom that she can't remember. Perhaps using the word "denies" makes it sound accusatory. I can see that.

Everyday I look at my mom and remember all of the wonderful attributes she had. How much I loved talking to her, going out to lunch, playing cards. How I used to go to her when the kids were sick for advice. How we could joke and laugh and have fun together. How she comforted me when I needed comforting.

And now when we talk, I can't help feel the loss. I can't do any of those things with her in the same way. We can still go out for lunch of course, and if Mom had her way we would do so every day.

I had hoped going through pictures would be a good thing. I had hoped it would bring some memories- good memories to the surface and that she would feel good about those times in our lives. But instead she looks at them and sees times she doesn't remember and so she thinks she wasn't included.

She says, "I must not have been invited." Over and over again, even when she herself is in the picture. And that is terribly sad! Who would want to look at pictures of events and feel as if they were left out?

Yes- she denies being a part of the event , even when she herself is in the picture. And it is sad, and scary, and awful, and in a sense amazing tho obviously not in a good way.

I love my mother. And sometimes the woman I see on a daily basis isn't anything like my mother. But I still love my mother.

Friday, September 24, 2010

Tough Days

Tough couple of days. Emotions running high. Praying for a weekend of peace...

Dad is so tired. He says he feel "better." But anything he does wears him out. Getting up and eating breakfast wears him out. Getting up and eating dinner wears him out. Taking a shower wears him out. The emotional up and downs with Mom wears him out. He takes a lot of mini naps in his chair and two or three real naps in his bed during the day. He is frustrated that he isn't bouncing back faster.

We've talked that the reality may be that he will take much longer to "bounce back" It may be months- not weeks before he feels able to do some of the things he did before the surgery.

He is worried. Worried that he will die before Mom dies. He asked if I thought it was selfish to want Mom to go first. He doesn't want to think of her in this condition without him. I've probably added to his fear by telling him he has to stick around because I need help with Mom. While I meant that as an encouragement for him to keep on truckin', it was also most likely said in a moment of desperation and Dad picked up on that.

Mom has lashed out at me a couple of times this week in a very hurtful manner. I KNOW it is the Alzheimer's. I KNOW it isn't really "my Mom." But it is so hard to hear those unkind and mean words coming out of my mother's mouth... The blame and accusations. The anger and paranoia and fear. Reasoning goes out the door when Alzheimer's makes it home in your home.

My church secretary and I "compare notes" on my Mom's behavior and that of her young first grade son. Her son has had health problems from birth and many major heart surgeries. He had a couple of slight strokes a year ago after surgery that slightly injured part of the frontal lobe of the brain. Mom's CT scan showed some deterioration in the frontal lobe of the brain as well. We share many of the same frustrations. Some of the same behavioral problems. But his condition is and will continue (we pray) to get better. Mom's won't.

Mom sensed I had withdrawn from her yesterday. I really had to. Thank goodness my daughter came with my grandson and occupied some of Mom's time. But even that became problematic for awhile.

Mom is sorting through pictures, a task I gave her when she was complaining about being bored. Going through pictures with Cheryl and seeing events that took place, she denies she was at the events and believes she wasn't invited. Even a baby shower she gave for my sister-in-law at her home is suspect. She looks at the pictures and is upset that the shower was held in her old home. Even when she is in the pictures- she denies their existence.

She saw things in the pictures she used to own and got upset because she either no longer owns them or gave them away (to me) too soon.

She denies she ever knew I had a home daycare and that she visited frequently and helped take the kids on trips. She denies my daughter was home schooled for a while and she helped. She denies ever seeing my cats. She believes that we kept her away and did not invite her to multiple birthday parties and Christmas events. Even when she is in the pictures.

So my daughter had to end the trip down "memory" lane as it got Mom upset.

Well, time for morning meds and time to see what today will be like...

Saturday, September 18, 2010

Rambling thoughts on Alzheimer's

I’ve had some time to think these past couple of weeks. When someone you love has Alzheimer’s you find out that the disease itself is not what you thought it would be.

It’s not just about forgetfulness. It’s not just about senility, it’s about loss.

At first I thought it was going to be about Mom forgetting to do the laundry. Or putting her keys in the freezer and her ice cream in the oven. I thought it was going to be a very gradual, but reasonable decline. A predictable decline. That once something was forgotten, it would always be forgotten. That once a skill was lost, it wouldn’t even be remembered.

In my mind, she would forget words, then how to do something. I pictured myself as being patient and loving throughout this. I mean, how bad could it be to be with someone who forgets what day it is?

But it isn’t an orderly, gradual decline. And there is NOTHING reasonable about it.

Some call it the “unlearning.” I guess that might be one way to describe it- but that isn’t entirely accurate either, for something known on Monday may not be known on Tuesday or Wednesday, but then be back again on Thursday.

There is no sense to this disease. There is a person you love sitting next to you. They look like your loved one. They sound like your loved one and they may even know some of the things your loved one knows…but they aren’t the same person any more.

And when does this happen? You think back and you see signs that were there- 3, 4, 5, or more years ago. But at the time they seemed insignificant. They were all explained away. And probably still could be except for the total of the changes in the person sitting next to you.

I pictured in my mind my Mom loving me the same way she did when I was a child. But she doesn’t. She still loves me, I know that. But there is no longer any nurturing towards me. Strangers, people she barely knows get that part of her now when it shows up. I’m the bad guy. I’m the person who taught her how to do Sudoku (which she sometimes blames for her memory loss) I’m the one who took her to the doctor, I’m the one who said she needed to move in with us. I’m the one who took over paying her bills. I’m the one who took away the car keys. I’m the one who stops her from self-medicating. I’m the one who told her she can’t give Dad his medication. I’m the one who locked up her medications.

I’m the one who tells her no. “No- You can’t go out and buy new shoes every month. You can’t go out to eat every day. You can’t go to the mall and walk every day. I can’t take you where you want to go when you want to go there.”

I’m the she argues with. I’m the one who feels the brunt of her frustration, her anger, her loss.

Others do to of course-Dad, my daughter, my husband, my son. Depending on the situation, they will feel her anger, they will feel her frustration. She can be downright mean to my daughter- sometimes I think she mixes up my daughter and myself. When the two of us are with my mom, it seems worse. She seems very defensive.

I’ve been accused by my mother’s hairdresser -of all people -of taking away all of the things she enjoys for no reason. According to this woman there is nothing wrong with my mother, she just has a hearing loss. Of course she should know- she sees her all of one hour a week, and most of that time my mother has her hearing aids out. So the one place Mom could go and get emotional support, a friendly familiar face and caring, instead has turned into a place she goes where someone is giving her unrealistic expectations, telling her seditious things in order to make her more upset. Instead of working with us to make Mom’s life easier, she works against us and Mom comes home feeling as if we are the enemy. I’ve hesitated changing hairdressers for her because she likes this woman and it is something familiar. But now it has turned into a battle and I don’t have the time, patience or stomach for it.

Alzheimer’s is not for sissies. It is not what I expected. It is not anything that can be planned for. You can’t protect against it. You can’t pretend it doesn’t exist. You can’t control it. There are moments of light. Moments of remembrance. But it is a terrible, terrible roller coaster ride with no seat belts and no way to get off. It takes prisoner of not just the victim, but the victim’s family and friends.

It is about loss. Every day it is about loss. There is not a day that goes by when you can pretend it isn’t happening. Everything in your life revolves around it. It is about loss, sacrifice and it is about love. Only people with great love in their hearts can deal with this on a daily basis without going insane. Love, support, and friendship are all important.

And for me- if I didn’t have my faith- if I didn’t have that Rock to cling to, those strong arms of others to lift me up- if I didn’t have the Body of Christ behind me, filling in the gaps when I can’t do it all, lifting me up in prayer, reminding me over and over and over again how much God loves us- I would have fallen out of the roller coaster a long time ago.

Rambling thoughts I needed to put on paper…

Thursday, September 16, 2010

Back again!

I can't believe it has been this long since I last wrote. One month and one day. A lot can happen in a month.

When I last wrote on Aug 15, Dad was concerned about what would happen with Mom after his surgery- her hair appointments etc. Well, in the very early morning hours of Sunday, September 5th, Dad woke me up-. He had terrible pain in his gut- like someone had kicked him. We called 911 and I road into the ER with him in the ambulance. My DH stayed home to wait for Mom to wake up.

Dad was admitted to the hospital.

To make a long story shorter- Dad's surgery was moved up- although it took a number of days to get that settled. He had surgery on Thursday Sept 9th. The 8th was his 86th birthday and his plans to celebrate birthdays with his great-granddaughter didn't happen.

Dad did well during surgery and things looked good. But being 86 and having had major heart surgery five years ago brought on some minor- albeit annoying and sometimes scary problems.

He came home today from the hospital. I am surprised and pleased. Yesterday- he couldn’t get out of bed or a chair by himself. His nurse over night worked with him over and over and over again until Dad got it. He so desperately wanted to come home and not go to a nursing home. And that sweet, stubborn man made it!

These were rough days for my mom. And for us. Besides the emotional ups and downs and the worry about Dad, things with Mom got worse. She had “stomping feet and yelling” temper tantrums at the hospital. She wanted to touch the machines, she wanted to check his IV’s, she wanted to be his nurse. I ended up calling her doctor and got her some anti-anxiety medicine to take and it did help some.

So much has happened- little things that just seemed to blow up into big issues. Missing money from her purse that was later found in her purse. Being accused of stealing the money and then accused of outing it back.

Finding hidden medicines in places I didn’t think to look, which made me realize I now have to watch her take every pill. I changed her schedule to accommodate mine and still give her the meds at the appropriate times. I try to get ready for bed at 10 pm. So I am giving Mom her nighttime pills- including her “relaxation” pill at 10 PM. She hates it and gives me grief- but it has to be that way.

She fell asleep on night in her chair and I woke her up at 10 PM to give her the meds. She seemed fine and even joked about falling asleep early. I gave her the meds and we both went to bed. The next day, she told my daughter she woke up in her chair and I was forcing pills down her throat and she almost choked to death. Ouch.

And her hair! Oh my goodness! I can’t even describe how many, HOW MANY times I have been asked about her hair appointments. And how many times she has said something to my daughter and my husband! She had a perm scheduled for this Saturday 45 minutes away and I rescheduled it. No way was I going to sit around waiting for that when I have spent so little time at work. My daughter couldn’t take her and knowing there was a possibility that Dad would be coming home- I couldn’t see leaving him alone for at least 3 hours and being that far away from him.

Sooo. Changed the perm to Wednesday the 22nd. My daughter will take her. This has been repeated over and over and over again. I have even sent her an email with the details. It doesn’t matter.

She wanted to go in on Friday for her regular hair appointment and we aren’t going. I set up an appointment locally for tomorrow with someone I know will do a good job- and for less than half the price. Mom is not happy. But that is the way it is.

This hair thing has to change- there are issues with the beautician telling Mom things that aren’t true and feeding Mom’s paranoia. She is rude and inconsiderate when I have tried to talk with her. I’ve let it go, because Mom does enjoy this so much and she has gone there for years. But after the perm, we may have to make other arrangements.

This will be continued later-probably tomorrow- now it is pill time…