What does Alzheimer's take from you?

Everything you ever owned, everything you ever thought you would get, and things you never even thought about. It's a long, slow slide into darkness, with no hope of stopping.

A beautiful statue, left out in the elements, worn away, until it’s only the shape of a person but not really the person that once was. Alzheimer's ...it wears away the edges that made my Mom who she was, one who lived for her kids, her animals, and her rosebushes, and turned her into a person with a sometimes confused and sometimes fearful stare.

I often wonder what she is thinking about when she is staring off into space. It is not a blank or empty stare, it is a stare that is so full it makes me look up to just be sure I cannot see anything too. But as always all I see is a blank wall. I ask her sometimes, "What do you see?" or "What are you thinking?" and sometimes she will look at me so intently, it sometimes seems like she is trying to force whatever she is thinking into my brain. Other times it is as if she is saying that as much as she would like to tell me, she cannot. Maybe she is doing her personal business with God and so it is confidential.

Anyway, even though Alzheimer's is what it is I do feel like Mom is so much better then she was a couple of months ago. I don't know why! I have been researching her medication and so consequently decreasing some and eliminating some which may be helping. I do notify the Dr. with each change, he is very tolerant of me researching what works.

Or maybe it is that she not only feels at home, I often think she believes this is her home and we are just hanging out for awhile. There is an air about her that is hard to explain but even the dogs respond to her sometimes as if she is the pack leader. It is a regalness that is my Mom that she always had in the Roaring Springs house. I think it is that recliner ... it is the best seat in the house, it is the hub and she knows it is hers ... she has the power!

So stinkin' cute!

My Mom is so stinkin' cute! When I first started being my Mom's person almost 2 years ago I looked forward to the day when she knew I was her person and I do think it is here for sure. I have felt it for a long time but now it is different because I know that she knows it too.

Our relationship with me as her person started with the look that said ...
I will be polite but do not start acting like we really know each other.

And then it goes like this ...
Ok, you look familiar and best I can remember you were nice enough last time I saw you.

We advance to this ...
I am having issues, you may be my last hope!

Then finally ...
Oh there you are, all is right in my world!

There is something about the peace that comes over her face when I come into view that is ahhh-mazing! There is just no way I can feel frustrated with her for anything when I see that look! (And as we know she can be a toot sometimes) I am still not positive she remembers from time to time that I am her daughter but that is ok!

I do have a hard time when she gets into the chattering a lot! MOST of the time, as long as she is using her inside voice, I am okay with it, because I think she is talking in her own way. But sometimes it goes on and on and on, thank goodness not often though. Most of the time it starts in her sleep as if she is having a dream!

Mom is doing pretty well overall. We have conversations ... granted all she can give are one word, maybe two word, responses. But she totally follows what is being talked about. She has opinions, she enjoys the dogs but she does not hesitate to fuss at them when they get rowdy. Or tonight when I was telling her I would get her medicine and then we would get ready for bed. I wait for a response, I like to keep her participating in the conversations. OK? I said, silence ... OK? silence ... I am going to get your pudding and then we will go to bed, OK? Finally she said with sarcasm, OOOOOOOKAAAAAY! Some things never change right? Sometimes I have doubts if Mom even has Alzheimer's and her aphasia is being mistaken as ALZ. Or maybe it is because usually she is only in her room at night, the rest of the time she is up and about with us. Maybe that is keeping her from zoning out. It is so hard to tell! If she could talk I think her diagnosis would be different.

Birthday Party weekend!

We had a good weekend celebrating Louis and Jennifer's birthdays. Megan, John, Jennifer, Allison, Matthew, Braeden, Lexy, and Carissa were all here. Mom really seemed to enjoy the company and probably most of all some different faces.

Mom is on Hospice care now but that does not mean she is at deaths door by any means. Hospice is a higher level of care and attention than Home Health but with Hospice we let God's will be done without intervening except what is needed to make sure she is comfortable and not in pain. The philosophy of it is really not any different than what I was working from but being on Hospice care gets her an Aide out here 3x a week and a Nurse 2x a week. On Home Health she does not get near that much attention. They say that often times on Hospice, patients do better and live longer because they are not constantly poked and prodded! Plus when the time comes for Mom to complete this journey I am not required to call an ambulance to come get her, take her to the hospital where she will sit until ... On hospice I will call the RN who will come right out and Mom will be able to complete her journey and start a new one in her room with her stuff and her family close. How much nicer is that for her. When the Nurse was telling me about how Hospice works and to let her know if I was interested I said, "Ya know I feel like I must have missed something because I cannot see why I would not want this for Mom, why would I have to think about it?" And so it is ...

Mom sure has ups and downs ... sometimes she goes for days and will not eat or drink, barely wakes up, until I get to where I am thinking the end is imminent. I get all misty eyed when I am around her, she looks at me with a furrowed brow as if to say "Don't be sad, it is okay". And just about the time I start to consider calling everyone I wake her up the next morning and she is bright eyed and bushy tailed, hungry, cannot wait to get up, talking as much as she is capable of, smiling ... oh yes smiling as if to say, "Ha, I fooled ya, I am just fine!". And the cycle starts again, she will be wonderful for 2 or 3 days, so much so that I want to think SHE IS HEALED ... she is the first one in history to have reversed this terrible disease! And then once again she deteriorates and the strange behavior begins again like it did tonight! I am getting her ready for bed and she is yelling and fussing and so I start to sing. As usual that calms her but tonight only for a while. In a bit she is slapping the air in my direction saying "Shut-up, Shut-up, Shut-up!" That was so different for her. First of all when we were kids shut-up was as bad as any cuss word and second my singing always calms her. Hmmm maybe I was just really off key tonight! ; ) So we will see what tomorrow brings!

This is Mom dressed up for our company!

What insightful questions from such young boys!

My Grandsons Matthew and Braeden got here last night. They are 9 and 8 and when Mom has her Sundowner's chattering and yelling it makes them a little uncomfortable but they are getting much more used to it. So much so that they are asking questions and I like that, it shows so much maturity that such young boys would care to ask. When Mom started Matthew came in and said "Is she singing?". I said No. I am so disappointed that I did not say yes because I think it kind of scares Matthew and I think what he was trying to do is make it okay by confirming it was just her singing, very much out of tune but singing nonetheless. I mean Matthew is used to hearing singing out of tune from all of us! I did explain that what happens sometimes is when people get old they get a disease that affects their brain and so even though they can think something they cannot get it from their brain to their mouth and so it comes out like that. Braeden, without missing a beat said, "Does SHE know what she is saying?" I said yes. What insightful questions I thought! Maybe when she does it again I will say ya know Matthew, I think you are right, I think she is singing!

"Well why are you yelling?"

I hear Mom yelling and chattering and it has to be pretty loud for me to hear her in the office! So I go in there and get right up to her face and say "Mom, what is wrong?". She stops and says "Nothing". I say, "Well why are you yelling?". And in the most innocent and serious tone she says, "I'm not". I just buried my head in her chest laughing! She is so stinking cute sometimes!

“She doesn’t know me, but I still know who she is.”

It was a busy morning, approximately 8:30 am, when an elderly gentleman, in his 80′s, arrived to have stitches removed from his thumb. He stated that he was in a hurry as he had an appointment at 9:00 am. I took his vital signs and had him take a seat, knowing it would be over an hour before someone would to able to see him.

I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound. On exam, it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound.

While taking care of his wound, we began to engage in conversation. I asked him if he had a doctor’s appointment this morning, as he was in such a hurry. The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife. I then inquired as to her health. He told me that she had been there for a while and that she was a victim of Alzheimer Disease.

As we talked, and I finished dressing his wound, I asked if she would be worried if he was a bit late. He replied that she no longer knew who he was, that she had not recognized him in five years now.

I was surprised, and asked him. “And you still go every morning, even though she doesn’t know who you are?”

He smiled as he patted my hand and said. “She doesn’t know me, but I still know who she is.” Author Unknown

I remember you with my heart ...

Jennifer and Mom




I wonder who decided that a person's worth was measured by what they do and not who they are. Maybe nobody did, maybe this is just some rule we impose on ourselves. Or maybe this is something I have imposed on myself. Most of the time I am ruled by my heart and when I do that I feel like taking care of my Mom is a valuable thing. But then there are times, not often but none the less overwhelming, when I let my head do the ruling. It is those times that I put too much value on what a person does out there ... in the world, in the workplace, instead of what you do in the home and with your family. And so then my self esteem plummets and I do the ugly cry and I tell Louis I feel like I do not have anything to contribute to the conversation because all I do is change diapers all day. And he says I do not think that, we have conversations, you stay connected to the news and you read, we have things to talk about. He is right I know ...

One thing that I do notice is how caught up I get in Mom and the little things she does and says, the things she says with her eyes. But those things are hard to share with people that do not have a similar experience. When we talk about things in the workplace pretty much anyone can relate at some level, have something to compare it to. I compare talking about my Mom to talking about workplace issues with someone who has never worked outside the home, or talking about your new baby with someone who has never had kids.

If you are around my Mom for less than 72 hours or you have never cared for someone with Alzheimers it will be pretty hard for you to buy into my stories about her. It will be easy for you to think, "There is no way, I have been around Grace, there is nothing there, she is out of it, she does not have the cognitive ability to understand that." I can totally understand my brother's frustration now when he took care of my Mom. He had these experiences with her and he wanted so badly for family to believe that there was a lot more to Mom than meets the eyes. I was guilty of sometimes feeling like he wanted so badly for that to be the case that he imagined her having moments of such clarity and humor. I have learned that he was right because she still has those moments, there is so much behind those eyes if you look deep enough. And she is much farther along in the disease now than she was then.

I posted a poem earlier in the blog and here it is again. I love it because it so clearly says what I believe is in Mom's eyes when family comes around. I have always told people that she may not remember who you are but I think she remembers that you represent a good feeling and a good memory. I was just not talented enough to put it in a poem.

I remember you with my heart.
My mind can't say your name.
I can’t recall where I knew you,
or who you are,
or who I am.
Maybe I grew up with you.
Maybe we were family together.
Did we walk together yesterday?
There’s something wrong -
with my memory.
But I do know you.
I know I know you.
I know I love you.
I know how you made me feel.
I remember the feelings -
we had together.
My heart remembers.
It cries out in loneliness for you.
For the feelings you give me now.
Today, I’m happy that you have come.
When you leave -
my mind will not remember -
that you were here.
But my heart still remembers.
Remembers the feeling of warmth
and love returned.
Remembers that I am less lonely -
and happier today -
because you have come.
Please, please don’t forget me.
Please don’t stay away just
because of how my mind works.
I can still feel you.
I can still remember you with my heart.
A Memory of the heart is really -
the most important memory of all.

Author Unknown