For all caregivers and loved ones coping with the disease or similar ones

 "When I spill something on my nice clean dress or maybe forget to tie my shoe please be patient and perhaps reminisce about the many hours I spent with you.  When I taught you how to eat with care, plus tying laces and your numbers, too.  Dressing yourself and combing your hair, those were precious hours spent with you.  So when I forget what I was about to say, just give me a minute - or maybe two.  It probably wasn't important anyway, and I would much rather listen just to you.  If I tell the story one more time, and you know the ending through and through, please remember your first nursery rhyme when I rehearsed it a hundred times with you.  When my legs are tired and its hard to stand or walk the steady pace that I would like to, please take me carefully by the hand, and guide me now as I so often did for you," - Danielle Hollister 
(Thanks Trisha for sending me this)



Blessed are they who understand
My faltering steps and palsied hand,
Blessed are they who know my ears today
Must strain to catch the words they say.
Blessed are they who seem that my eyes
Are dim and my wits are slow.
Blesses are they who look away when coffee
Spilled on the table today.
Blessed are they with a cherry smile
Who stop to chat for a little while.
Blessed are they who never say,
"You've told that story twice today."
Blessed are they who know the ways to
Bring back yesterdays.
Blessed are they who make it known
That I'm loved, respected and not alone.
Blessed are they who know I'm at a loss To find the strength to carry my cross.
Blessed are they who ease the days On my journey Home in loving ways.
~~ Author Unknown ~~

Phillies

We were watching the Phillies game and then Mother went to bed and then in extra innings she came back. It was a few innnings later and Mother had fallen asleep, so, I didn't want to wake her. I sat and watch the game and all of the sudden the never ending game had ended and the Phillies were announcing about Charlie's new feats and also the teams new feat...Mother woke up and said, "Wow" and now she is back to sleeping. That's my sport's Momma!

Big girls are beautiful

We were just joking around and Melanie started singing, "Big girls are beautiful" and my Mother went hoot, hoot, giggling like a mating owl. She hasn't had a sensor now for years but it's still funny when she reacts to certain jokes or statements. I'm not sure if this is my Mom's sense of humor or just Mother's disease...I don't have enough memory of my Mom to differentiate  the two. I just knew my Mom has this kind sensitive woman and not someone to make such jokes. Of course it's funny but I don't think that's how Mom would react especially because she gets upset when we make fun of each other. Good or bad there is still communication and love, i'll take it.

Keeping it together

Even though it's hard to deal with, it's more important to keep it together for Mother's sake. When she is upset or crying it's so difficult to not cry or dwell on the issue because even though it's about her, we are affected too. There's time and a place for me to deal with the disease but when Mother is upset it is necessary to remember she is hurting, too. She cries more, is confused more, and becomes less and less dependent each day. I never imagined picking out diapers for my Mother nor did I think that making it fun for her would make her day. Life is strange.

Days and nights get more and more difficult. Today, when Mother started crying and talking about her thoughts (hallucinations) it was really hard to stay calm myself, let alone calm her down. She kept talking about my father and her father. Neither of which led to a happy ending. My Dad and Mom have been divorced since I was 10, but, things are cordial between them. She gets upset about him sometimes; I usually just try to distract her with something else but tonight was hopeless. After that, she wanted to talk about her Father. She said he was here and telling her he wasn't just made her cry and say, "I know, I know." Needless to say these last 36 hours have been quite interesting and stressful. I know by keeping her safe and reassuring her that all is okay what really matters. She is now watching her favorite Phillies and mumbling about the Fathers...let's go Ativan.

Let me show you

Mother gets concerned about the strangest things. She made me follow her around the house while she pointed to different things.  She pointed to the kitchen floor and since I'm fluent in dementia I knew she was on her home renovation kick and wanted to get new flooring for the kitchen. After this, she brought me upstairs and pointed to our extra flooring we put in the foyer and said, "It's so big; can I have it?" Of course I told her it was hers and she told me that she was going to do the flooring. This was short-lived. She quickly turned her attention to wondering if the people were out.

The stealthy sloth

We always have to have a close eye on Mother because even though she moves a little slower than most (and by most I mean everyone) she still manages to secretly do things. I went upstairs for 5 minutes and returned to find Mother with a snack of hers.

I giggled and said, "Mother, what are you doing?" She pointed and started talking about the babies. I know how she works and she was just trying to distract me from her box of honey buns. Every time I mention her doing something intentionally she always smiles. Sometimes when she gets upset I will say are you just playing with me or being silly and she smiles. This is a sick but funny game she is playing.

Our little sleeping beauty

Mother likes to sleep a lot; she lives the life of a cat. Most of it is because of the medicine but also I secretly think that when she is sleeping she is in a state of bliss. Here's our sleeping beauty in action:

Crickets!

Mother was eating her special ice cream and all of the sudden there was a cricket on the ground and it absolutely  freaked out Mother. She was going crazy for about 20 minutes. Even the word cricket made her get scared. Her ice cream that night was mint chocolate chip and for some reason she thought that the chocolate pieces were crickets. She had already eaten half of the ice cream so we wanted to make sure she ate the rest because it had her medicine in it. After removing the cricket from the house we tried to get her to eat her ice cream and this is what happened:

Patience is the key with dementia. Try, try, and try again. Also, notice her best friend next to her? :)

The infamous frown!

It's hard to capture a picture of this intense frown that Mother gives but I attempted to show at least part of it

Yes, that is Mother 'napping' with her frown. This doesn't show the intensity of the frown but we know when that frown starts to come out when she is awake that she is about to start a little melt down. It's a good cue for us. We usually try to make sure the frown doesn't come out but guess what? dementia is unpredictable!

The smallest but most important things matter to Mother

It's important to remember that it's hard to win with dementia. One day your normal routine may not work and you have to adjust to make sure your loved one is happy or well, safe and comfortable. We try to avoid waking Mother up from naps so when Melanie went to work the last week she didn't wake Mother up before she left. Mother woke up and was extremely angry. She kept asking Kendra where Melanie was and once she told her she was at work she was livid because she didn't say goodbye. I got home and asked Mother about Melanie and what she did and she just shook her head and disgust. She in her own little demented way kept talking about how mad she was at Melanie. We told Melanie about how mad Mother was so when Melanie got home from work she had made her a handmade "I'm sorry" card. She gave it to Mother and said she was sorry. Although, you could tell that she was still mad she loved the card and gave a little smile. The saying is true that a smile can mean the world to someone and that's what Mother's smile does for us.

Projecting anger onto sloppy joes

I never knew that Mother had such anger in her and especially not Sloppy Joe anger. Depth perception is a bit off with Mother's disease and this causes her to spill a bit. I know making Sloppy Joe's wasn't the smartest idea but I thought I was being clever by giving her a fork would help out the situation. I was definitely wrong and Mother was so angry. She enjoyed the food but got must of it everywhere and was moaning about it for hours. Not real sentences but little fragments about how annoyed she was at the meal. I know I will never be making her them again. It's kind of funny to watch the difference of Mother's demeanor when I gave her food compared to when Melanie gives her food; she tends to think my food is going to poison her so I just tell her Melanie made it. She's used to her girl Melanie making her meals. You really have to stick to a good routine.

I have to go home!

Mother, Melanie, and Kendra surprised me at work on Saturday. It was so nice to see them. They had just eaten so Mother had food all over her and they even put a full 'bib' on her. It wasn't embarrassing or anything just a few spots. At first when things started to go downhill I felt a little embarrassed when I was in public with Mother because of the silly things she does but now I don't care because she's so beautiful inside and out. People don't know that she's sick and I certainly shouldn't have to worry about people and the way they react to her. So what if she waves at random people, says random things, walks really slow, etc..., people should look at everyone as a human being and treat them with kindness. Okay, I'm done with my dementia public service announcement and now will finish my story.

Mother was at the bar sitting with the ladies and she started to get her serious frown on and started complaining about how she wanted to go home, to our actual home and not die which like her use of baby because it takes some decoding to differentiate the two. She turns to us and finally tells us she has to go home and be with the babies, the dog and the cat. She was seriously distraught over the fact that she had been away from  her babies for a few hours. She often does this but this time she apparently missed them a lot. Their visit was cut short so Mother could go home to be with her babies and to have a medicated snack. The anxiety she gets even over being with her babies really takes a toll on her and it is necessary to make sure she gets her medicine.

Sometimes the best medicine for Mother is just the love of her granddaughters, Julia and Lily. Mother always wants to hold the baby. She gets a little nervous when she gets upset or fussy but with a little bit of reassurance she will try to calm her

Mother is such a gooney bird.

I was making Mother a special snack and when I went to give it to her she was sitting there will the pillow on top of her head. I have no idea how it got there but it looked like she sat down and scooted her head below it. I asked her what she was doing and she really didn't notice nor did she care that it was there so I just let her go. After a few minutes I returned to see if she was eating her snack and this was her

I tried to ask her about it again and she just kind of became a little agitated so once again I let her go because if it's not hurting her then there's no need to get her in a mood. She stayed like that until she got up to go to the bathroom. It was a good hour of so...

Oh Mother

As previously mentioned Mother loves pulling at her eyebrow hairs and other facial hair but we figured out if we tell her specifically to stop playing with her eyebrows she will immediately respond with "Shut up, bitch." Who would have ever thought that hearing my Mother say those three little words could make me smile so much. She usually giggles afterwards or gives us the finger so it just makes it even better.

The past few weeks flew by but also seem like they've brought a lot of changes. Mother continues to become more and more agitated which is sometimes tough but with a good dose of Ativan life is good for both her and us. Warning: Waking up a sedated person leads to very weird conversations and events. Normally if Mother is 'resting her eyes' on the couch we try not to bother her because it's just better that way. Whenever we do wake her she will open her eyes (barely) and yell something funny. Usually, she will say something along the shut up, bitch lines, "be quiet!", or the ever so popular "where are we going?" The other night I was trying to get her to go to her bed and was walking her up when she followed the kitten into the kitchen and started commanding the cat to do things...to get me!

I was able to write down exactly what she said, " Get her, bitch. She's a bad bitch. These people are following me. I'm dying. I'm not coming back here." I just kind of distracted her and led her up to bed where I had to coax her to lay into the bed and to stop looking out the window at those people.