New blog address

Hello everyone - Chrissy's Moments now has a new home:  http://www.chrissysmoments.wordpress.com/

Crazy Around Here

Before you continue reading, let me just say this post is written with the usual heartfelt respect and love. Let me just say it has been crazy around here for the past couple weeks as Chrissy is more rattled that usual. I think she is aware that there are some changes going on inside her unbalanced and sick brain. These days, two behaviors pretty much comprise her repertoire of communication: excessive quietness and getting mad. Interestingly though not with everyone; my sister who visited with her last week said they had “an absolutely wonderful time ..happy and conversational.” Yeah, I wish she would visit more often!

“Hear my cry, O God, listen to my prayer, from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I.” Psalm 61:1-2.

New Shower

For the past eight months or so Chrissy has struggled with increased urinary tract infections, and bath tub issues that included slips,falls, and blood. Well, now let me say she now has a new shower - thanks to her son (the plumber)! This shower pretty much does everything but dry her off - okay, I am exaggerating. There is skid-proof flooring, a spacious seat, multiple hand rails within her range of reach, two shower heads/one hand held that is within her range of motion - and, these can work together or independently. Last night it was shower time; I had both shower heads turned on and strategically placed (or aimed), an aromatherapy vanilla-lavender tablet in the floor, and Chrissy some decaf ice tea. After she was in I ask how she was doing - she replied, “I can just sit here and do nothing.”   Thank you my sweet brother.
 

This photo does not do the shower justice.  It's larger and you can't see the other shower head or seat.  Anyway, it is very nice, and is big deal around here as keeping Chrissy clean will be much less stressful for both of us.

Cooking together

Knowing that I would have Chrissy with me in our home Saturday and Sunday, I found five or so recipes that required vegetables, fruit, and chicken be chopped, sliced, rinsed, and such. While sitting at the kitchen table and listening to music, she peeled everything: zucchini, squash, cucumbers, grape tomatoes, granny smith apples, and even baby carrots!  Didn't even matter, I was so pleased that she was staying put and not wanting to leave.  Once prepared, our dishes had minimal visual appeal and that was just fine.  Though I will need to rethink future recipes with chicken, maybe just pick up a rotisserie bird and skip handling the raw meat.  Nonetheless, she was out of her house and content!

Please let it be a uti

Please let it be a urinary tract infection

The past couple weeks Chrissy has struggled more so with daytime urinary incontinence so I was really surprised with the two calls last night, long after she had gone to bed, that she was having trouble with her bladder.   Now I'm thinking it might be another uti.  I am actually hoping it is a urinary tract infection and not that she now is unable to recognize her need to go.  A couple days ago I began encouraging her to go to the bathroom every couple hours to "just see."  Many times she would return and say, "I guess I did need to go!"  Not my ideal; I had remembered reading that Bob at http://www.alzheimersreadingroom.com/  believes in patterns and uses this with his mother. 

Knowing that I would be writing this morning about my hope that Chrissy's struggle was another uti and not progression of ...... the word I hesitate to write out in this sentence.  I thought I would research urinary incontinence, and of course the first place was The Alzheimer's Reading Room - look what I found:  Keeping The Love Alive: The Magic of Water by Sheryl Lynn.  I know the importance of water but geez, never thought that "the act of drinking  water would stimulate her dehydrated brain to wake up."  Even sips of water.

I now have a plan - going today to purchase three pretty glasses that are small and lightweight.  We will establish these as Chrissy's water glasses for morning, noon, and evening.  We will continue every few hours with encouragement or reminders to go to the bathroom and "just try."  I'll also pick up a few lemons for her to try, thus giving her a choice, water plain or with lemon.  And, of course, a doctor's visit to check for a uti.

Alzheimer's Reading Room: What is it like to be an Alzheimer’s Caregiver? Judy Dearing#more

Alzheimer's Reading Room: What is it like to be an Alzheimer’s Caregiver? Judy Dearing

Good Day

Here is Ms. Chrissy peeling an apple while relaxing on our deck! Yesterday was such a good day for her. She stayed at my house for almost two hours and later went with me to run errands. It has been way over a year since she has been that active.

Later that afternoon I walked in her house and found all the bed linens in the hallway floor, three shelves emptied. She was looking for a particular bed sheet that had my name on it. Chrissy has a generous spirit and tends to give her best away sometimes. I labeled some of her linens hoping they might stay around. Anyway, after gathering everything off the floor, guess where we found her soft bed sheet? Yes, on her bed! Her only comment was, "I knew it was here somewhere." So, our project for today is to match, fold, and put away bed linens.

Doe-Rae-Me

I'm happy to write that Chrissy's absent stare and dark place seems to have finally moved on. This one lasted much longer, maybe because back and leg pain was present also. This is different because, for the most part of these past seven years, she has not focused on pain, almost like it's not even recognized.

Today at lunch we were around the table and I leaned in toward her and said, "guess what we did this morning" to which she promptly pointed that finger and said, "did you skip church this morning?!" Now this was just too funny because while we did attend church this morning, we slipped out early - after the music and before the pastor began. Typical of Chrissy before dementia - parental mode with that legalistic finger! My sweet man just grinned at her pointed finger!

this snapshot was a pose - she normally doesn't smile when she points her finger

More and more Chrissy will look over at me as if to say something but has forgotten that quickly. The other night while watching TV she looked over and said, "doe-rae-me" and just grinned! When I asked what she was talking about she smiled and said, "I need some doe-rae-me!" Money! She was asking me to go to her bank and get her some money! I so wished I had a picture of her happy face when I guessed her reference to money.

Difficult week.

Whew - a hard week with Chrissy. She has been in the Alzheimer's dark hole for more than a week now. Unlike the other times, she's holding her head down more and staring off in space. I ask her what she's looking at and she will say the TV, but not so. She starts to speak and then says she has forgotten what she was going to say. And she is eating only small amounts. Yesterday, up until 6 that evening she had only a few bites of ice cream, and that was with much coaxing. For dinner she ate a few bites of the meat and vegetable - no dessert though, and that is so not Chrissy. 

Chrissy called today to say that Emily, her grand-daughter called her and would be visiting a few days this week. Then she told me to go to the bank because she needs greenback (money)! Mother loves loves loves Emily.

I am told to expect continued decline and that this disease is terminal. But often, knowing something and living it are quite different.

Busy Month

Chrissy has had some challenges this month. April has been a busy and stressful month for us and she clearly has felt the stress. Today is the 25th and so far we have had weekend company three times (all good), experienced termite sprawlers and exterminators in Chrissy's home, Sam, our Schnauzer, spent the day at the vets and returned home with her little leg and paw wrapped, along with medication twice a day, and last - I've had bronchitis!

Man oh man, we are all tired around here! Out of all of the above, Chrissy seemed to struggle most with Sam being hurt, bandaged, and medicated. A lot of repetitive Sam questions. When I was sick, she assumed her life-long role of "taking care." Even with the company, she did really well. For the most part, I tried to keep our schedules the same. With the annoying and unpleasant pests, she packed her red bag and stayed with us - worrying some, but mostly content.

She seems so weak and is very unsteady on her feet. I make sure she has her walker and have asked her two helpers to do the same.

The other evening we were watching her show, Andy Griffith, and when a commercial came one I muted it and said I wanted to close my eyes and have quiet for a few minutes. I asked her to tell me when Andy came back on and I'd turn on the sound. She said okay, and I really believed she understood. After more than a few minutes I opened my eyes and the show was back on. I looked at her and she was just watching; I turned the sound back on and said you were suppose to tell me when Andy came on - to which she replied, "it's just Barney and Aunt Bee."  She is just too funny sometimes!

Swinging

Here is a shot of Chrissy swinging with my sweet man! Over the weekend we had family and friends visit and Chrissy enjoyed time with the in and out visits.  She graciously shared her swing!

Bandage Box

This morning I received a call from Chrissy stating that she had fallen last night and had cut her arm. As her skin is so incredibly thin, it tears easily. I rushed over and found her sitting on the sofa with a bloody two inch place. She had brought the "bandage box" in and had it sitting on the coffee table. As I began to work on her arm she stated, "your grey hair makes me feel old" and continued with, "you need to put on some lipstick"! Nothing about how or where she had fallen. Nor did I let her know that I'd rushed over and was not yet ready for the day.

Last night she was complaining about her hair bothering her and we agreed that this morning it would be shampooed and I'd roll it up. So after bandaging her arm together I returned home to get myself ready. A little over an hour I'm back there and could see she had already shampooed her hair and it was practically dry. I so wanted to tell her, yet again, that she wasn't to do that unless someone's with her but didn't as those words are pretty much useless. Anyway, Ms. Chrissy insists that she has not washed her hair - even though the wet towel is lying on her chair, hair rollers are on the table, shampoo is out and her sink is wet!
So - okay, I just put in her hair barrettes.

I realize that for the past three hours I didn't argue or fuss or try to reason with Chrissy....I just went along. Later I called my sister to talk with her and relate the morning events. So this morning I am thankful that I live next door to my little mother, that I have one sibling out of six who provides encouragement, and for the Alzheimer's Reading Room, http://www.alzheimersreadingroom.com/.

And, while cognitively I know there will only be continued decline, as this insidious disease is ultimately fatal; my desire is to show her love and to communicate this love in whatever way she understands...              
she is still here.

Chrissy, Wilma, and Sasha

Wilma and Sasha (the schnauzer), visited Chrissy a for a long weekend.  They live in KY and come down every couple months or so. Chrissy loved having their time together.  Wilma provides me ongoing encouragement as she is one who understands the essence of caregiving, unfortunately, from experience. 

Crissy's Birthday

Chrissy's Favorite Guys!

Coconut Cream Birthday Cake!

Birthday Flowers!

Can't Understand

So the other evening while Chrissy and I were talking, I was holding Sam, our miniature Schnauzer. As one thing led to another, I thought it might be a good time to bring up another one of her family stories; one that I've been trying to get recorded. I looked at her after talking a bit about this one story, with the hope that she would continue on telling the story. She then says to me, "Judy Denise, - you know that dog can't understand a word you're saying!"

Gingerbread Cake

As my work has overflowed to Fridays, and along with some other factors, Chrissy now has assistance during the day for three hours, five days a week. We continue to have our Home Helpers' lady three days and have someone who is able to clean on the other two days. I wonder how long this will work, two different ladies. Each morning this week we have gone over and over who it is that's coming that afternoon. Yesterday Chrissy called to tell me she was sitting in her chair - just watching "what's her name" clean! Earlier they had gingerbread cake and coffee together. She loves to sit at the kitchen table and talk. I am so thankful there is money to cover her care, at least for now, and thankful that my father had planned well. Yesterday I ask her what she was having for lunch, wondering if she was eating what I set out. Nope, Chrissy was having gingerbread cake, and yes, this was before her helper arrived. That evening after I prepared dinner, she told me to put it in the refrigerator - she was having "ginger cake"! Cake as a meal, three times in one day. Oh my.

 

I have been thinking about the above phone conversation. I recall stories of how hard her life was as a child, growing up, I remember the large gardens she worked, and I can't even imagine raising seven children. So, she has help now, and Alzheimer's.

Mornings alone seem okay for Chrissy as it takes her hours to get dressed and moving around. Afternoons are different though as she will attempt to cook on her own - huge mess, burners on and all, or will wander outside or downstairs - not steady enough on her feet inside - fallen - steps and all - she isn't even steady inside, or gets lonely and starts calling me or my sweet man - repeatedly, or thinks she will take a Tylenol and gets a pain pill - really not good at all, or starts to look for something and pulls out whatever's in the drawers - I have to put it back when I come in because she's then too tired. All that's an overview, there is much more. She gets afraid when she's alone for more than three or four hours and her mind goes into that black hole. More so though, it's a safety issue.

Popcorn!

The other evening I was scanning facebook and a new friend posted she was making popcorn the old fashion way: on the stove with oil, butter, and salt. In conversation with Chrissy I mentioned this post, along with my question as to how much oil. My little mother just looked at me and then said she was sure she could pop corn, so off to the kitchen we went. I set out two skillets for her to choose from and turned on the burner - and Chrissy did everything else! I was watching, waiting for the kernels to pop and she told me that "a watched pot never pops!" I am so proud of her popcorn and she looks pleased also!

Emily

Photo credit - Psychiatric Interviewing: the Art of Understanding by Shawn Christopher Shea, M.D. 

My niece, Emily, came over to spend time with Chrissy, her grandmother, on Monday and spent the night as well.  I had talked with Chrissy earlier in the day and could hear happiness in her voice.   These two share a connection that I've not seen between Chrissy and any other family member or friend.  When they are together there is so much laughter, almost no topic or person is off limits, and thoughts and opinions are voiced freely - not with the tone of gossip.  Pretty much, they can look at each other and crack up laughing about something!  I stopped by that evening after work and found them at the kitchen table fully engaged as usual with the deck of cards between them!  Emily couldn't understand why she has to search for the cards each time she visits as she clearly remembers always putting them in the first drawer.  Chrissy just laughs and tells her that she takes them out of the drawer and puts them up so they will know where to find them!  Of course, that gets them both laughing hysterically.  Their next topic, which I truly can not even repeat much less post, took them even to a higher level of laughter - seriously.  It's seems there is a visceral connection, beyond words or family relationship or dynamics.  While I laughed with them, I watched both hold each others eyes, knowing these two beautiful women, grandmother and grand-daughter, are also communicating love without words -  each from their own place of unspoken pain.        

An enlightening article by Angil Tarach, RN GCM; posted on Alzheimer's Reading Room, February 2nd.  I was a bit surprised by my reaction and will ponder on this more.

Alzheimer's Reading Room: Beautiful Does Not Always Mean Better

Three Beautiful Sisters

Maxine, Mag, and Chrissy - with beautiful smiles.  Aunt Mag is now in heaven.  I wonder how old they were when this picture was taken. 

Doctors and Family Not Good at Detecting Alzheimer's and Dementia

Really informative post by Bob DeMarco - thought it might be of interest to some.

Doctors and Family Not Good at Detecting Alzheimer's and Dementia