The Journey

The last couple of days Mom has been sleeping almost constantly. She will not eat or drink ... most of the time I cannot get her to take her medicine as it would require her to open her mouth. She is not sick, no fever or infection. My hospice info tells me these are signs of the end of her journey but I am not convinced because she smiled some today so we will see!

Not much new here!

Well I have not written much because all has been pretty uneventful. We are on a good schedule, Mom is very much at home. She has been a little grumpy today. :) I asked her if she was mad at me and she very sternly said "Yes I is!" Five minutes later I asked her if she was still mad at me and she got the most confused look on her face, like she was saying, "Why would I be mad at you?"

We are watching the Rangers play, Mom is very tuned into sports and Sunday Mass on TV. Anything else she seems pretty oblivious.

I liked this picture ... it made me think of my Dad. Ya know I think my Dad would have really liked Facebook! All of you who knew him, don't ya know he would have loved getting on it to see what was up with his friends so he could comment on it next time he saw them. And of course posting his thoughts on things ... oh yeah!

Ventured out ...

Tuesday we both had to go with Jennifer so I got a sitter for Mom and we were gone for SEVEN hours! I liked the sitter, and she was highly recommended by Mom's nurse so I did not worry a bit while were gone but it was like coming home to a new baby the first time you leave them with a sitter. I came in the door and first thing I said is "Where is Mom?" I went to greet her and it was weird how much I really had missed her.

Wednesday I went to do some errands while Mom took a nap. I had a feeling I should have left right when she laid down but then I figured Louis would handle it okay, and if he really needed me he would call. Well sure enough she woke up and my phone rang. Louis asked, "When your Mom wakes up does she usually like a drink?" I hesitated, confused by the question, and he said "Well because I tried and she did not want any". So I thought to myself, well then I guess she does not like a drink when she wakes up. MEN! So I told him I was almost finished and I would be on my way home. I thought about it after we hung up and since I know Louis here is what I think went on in his head:

Mom wakes up ... he thinks, "Oh NO, now what do I do?" ... "I know, I will call Beverly and let her know" ... "Oh no I cannot do that, it is already too hard to get her to go do something, if I stress her out she won't go again" ... "But that still leaves me here with Grace and she is awake and I have not been properly trained in the 'wake-up from a nap' routine." ... "Oh okay, I know, I will just call and calmly ask her a question while mentioning that she is up. And she will come home without me even asking, I know because I read her like a book!!".

LOL ... and Louis I read you like a book! ;) Thanks though for making this adventure so easy for me every single day!

Wednesday and all day Thursday into Friday morning Mom would not eat, drink or take her medicine. And she was in the worst mood, literally clamping her jaw shut so I could not even hope to get anything in her mouth! I know it is okay if she does not eat or take meds once in awhile but it is so hard to shift gears from being the person who makes all of her decisions for her, thinking I know what is best for her, to letting her have a day to make her own decisions!

Friday was great, kids here, Mom is engaged and interested while we played Pictionary. Although I told Bunni, I was not sure if it was an engaged and interested, having a good time kind of mood or if it was an engaged and interested, you better not break anything kind of mood! Bunni said she was probably saying that it could be worse ... they could be playing charades, jumping up and down screaming!

Saturday Mom got up a little earlier than usual probably because of all the activity. She is in a good mood today though, very talkative and responsive! In this picture Jennifer just got finished painting her nails a very pretty red and was telling her how beautiful she is! Mom looked all embarrassed while at the same time loving the compliment with a slight smile and said "Oh I don't know".

“Here I am.”

I often find it hard to write because I feel like those that have been around my Mom will find my stories unbelievable or figments of my imagination brought about by my strong desire to "believe" my Mom is not as "gone" as some might think.

Do not get me wrong, sometimes I find myself telling myself to get a grip, Mom's brain is like the one in the picture I posted here early on. "No it is NOT", I say as I stomp my foot because Mom responds to so many things appropriately whether it is a couple of words or a smile or a shake of her head to convey disbelief or a smirk to tell me she thinks I am silly! She just cannot put sentences together. It is like the filament in a light bulb ... when the filament breaks the bulb goes out but that does not mean there is no electricity to feed the bulb it is just that the filament broke! In Mom's case that piece of "filament" that ensures that Mom's thoughts get to her vocal chords has broken. So imagine the frustration for Mom as she tries so hard to tell me something that I can tell is so important to her and I do not have a clue what she is saying. I can see the pain in her eyes and hear it in her voice. To really get Mom you have to be able to read her aura. Aura has been described as a map of the thoughts and feelings surrounding a person. And to really read that map it helps to know a person's history and personality before the disease. And you have to be in tune with their rhythm and the only way to do that is to be with them day in and day out. Just being around someone in bursts of small doses will leave you feeling as if there is nothing there but let me tell you there is! She will sometimes be interested and engaged in you and sometimes she will not. If she is not it is just because she is just not interested ... it does not mean that she is missing in action!

Just got Mom in bed. Before that she was sitting in her recliner and I said, "Mom are you ready to go to bed? Are you tired?" She said "No". I said "I know, you are so comfortable and enjoying the movie huh?" She said meekly, "Yea". I said, "I know but it is bedtime" Sounding defeated she said, "Okay". Louis goes to get her up and in defiance she goes stiff which makes her impossible to move. I said "Mom I need to get you up out of this chair while Louis is here because I cannot do it by myself". "Ok" she said and worked with him. You see she gets it, she understands what is going on! And one thing about Mom is if I approach things in a way that she is helping me she will comply.

We have talked about how having Mom here now is not much different than when she would visit years ago. She was always quiet, never talked much, and was a wonderful listener. Just like she did when we would sit around the dining room table in RS and I would be talking to Dad about some thing and she never talked much but she would look at me and listen and her eyes told me how proud she was of me. It is the same now ... when there are conversations going on she will listen so intently and I will catch her looking at me, smiling, sometimes as if to say you are so funny and other times you are so smart.

So if you hear Mom chattering she has a reason. Maybe she is cold ... maybe she is wondering where we are ... maybe she does not like that the people in the movie are arguing ... maybe she is watching Sunday Mass and we are being too loud or talking ... maybe the dogs are being too rowdy! But anyway 95% of the time she has a reason and it is not just jabbering. The other 5% of the time we have become quite skilled at tuning it out! ; )

I was glad to see my thoughts verbalized in this book.

“Much of our loved one’s suffering is invisible, at least to the outside world. Sometimes we’re the only one who knows the pain is there, where it comes from and how severe it is. We try to explain it to others, but they aren’t around to witness it, day in and day out, the way we are. We stand alone along side our loved ones as the vessel holding in all the fear and sorrow and hurt.

We are the “holy watchers,” the keeper of the flame of love. Some day, just being there as caring witnesses is the most important gift we give.

Be with me dear God, as I say to my dear one, “Here I am.”

Pat Samples - Comfort and Be Comforted: Reflections for Caregivers

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.