Just Rambling.

I had the dreaded stomach virus all weekend, Friday evening through Sunday. My sweet man was in SC hunting so it was just myself with Chrissy and Sam, my husband's dog. My little mother has always been one to care for and continues to do so as best she can even with this "brain death", Bob DeMarco's words. So Saturday I had hoped to stay at home and check in with her by phone, thinking once she knew I wasn't well and just next door, that would be okay. In less than an hour, after answering repeated phone calls where she was just checking on me, I thought I might as well be on her sofa and throwing up in her bathroom. I kid you not, with every trip to the bathroom she would follow and just kept yelling out my name - as if hearing her would make me stop throwing up! She would lean over me and say "we use to always give our kids sprite" - I'd say okay and off she went to get sprite. Another time it was "we use to always give our kids jello," and with assistance, we both had jello that afternoon. Later that evening her phone rang as she was in her bedroom; I took the phone to her knowing she wouldn't want to miss a call. Afterwards she comes into the living room, lays the phone down, and clearly states - "please do not disturb me again" - Those words are so out of character - she is such a hoot sometimes! It simply says she was worn out.

The following day I was still on her sofa, different jammies, and no longer throwing up. Mother wanted to repay my husband for picking up some trash bags for her. Handing the money over she stated she "wasn't broke yet, badly bent but not broke." Never ever have I heard that phrase from her!

I'm back at work today and have just checked messages, two of which are from Chrissy reminding me to eat something for lunch.

Update

Looks like Chrissy will have some extra help on Friday afternoons from 1:00 - 4:00. Chrissy knows and likes this person as she is the one who already comes once a month to do house cleaning. Normally, I don't work on Fridays, plus my sister usually will come over on Friday mornings. Recently she was unable to come and I had a full day scheduled at work; fortunately, I called my brother and he was able to come by Chrissy's that afternoon. That got us talking about need for a backup person, in addition to the lady with Home Helpers on Monday, Tuesday, and Thursday afternoons. As I'm having to be at the office more and more on Fridays, having someone scheduled for that afternoon is just where we're at now.

In the past couple weeks, Chrissy's social activity has increased. She's had several people come and visit with her, which she enjoys, and she's had phone conversations with two long-time friends from KY. I wish she was able to get out and about - well, I wish a lot of things!

I am so thankful she has not been sick. And, I'm thankful she is doing as well as she is.

Alzheimer's Reading Room: Alzheimer's Disease -- The Front Row

Today was hair and nails day and Chrissy put on her lipstick and waved hello!  We have been together, all day until evening, for four consecutive days so this wave may indeed be a goodbye -just leave wave!

Bob DeMarco from the Alzheimer's Reading Room wrote an article today about caregivers and I have pondered his words off and on since this morning. While I have included the link below, should it not work, you can go to http://www.alzheimer'sreadingroom.com/ and the post is Alzheimer's Disease - The Front Row.  

Alzheimer's Reading Room: Alzheimer's Disease -- The Front Row

Love, Mother

Wednesday, December 23, 2009

Love, Mother
Okay, so up until yesterday we were still working on completing Chrissy's gifts to her children and grandchildren. I had addressed the envelopes, written out the checks - her gift of $25.00, and laid out eight Christmas cards. Each family has one check, even the adult grand-kids are included. Chrissy's task was to sign each card. She talked for days about what she should write - most would say "love mother" and a couple would say "love mama". I finally began encouraging her to get started - just write a few out at a time. Yesterday morning, to help her along, I wrote on her notepad "Love mother" as an example and as a reminder, "Chrissy, sign these cards today." Know that she usually doesn't respond well with words that lean toward a suggestion, much less something that sounds like a directive - a clear "no" is almost always her response. I have been working for over a year learning how to communicate with her in this Alzheimer's state - much by using touch, facial expressions, and laughter, but more on that later. Chrissy uses a notepad to write reminders for herself, such as "call Judy at 12" or "I took my pills." I know her writing and know that most generally, it is not legible. And, her writing is kinda all over the place and pressured, not positioned or in a straight line. Signing eight cards is not something I can even imagine her doing in one day. So, I just question who the little bird was that helped her out? Not asking around though, just thankful.So, you might wonder why I even give this thought. More and more in my mind I hear Bob from http://www.alzheimersreadingroom.com/ saying let her do as much as she can for herself because once something is forgotten, it can't be relearned. And I know that writing your name is memory from a different part of the brain. I hear the neurologist's words from her last appointment saying there has been a noticeable decline and that Chrissy had scored in late moderate or early severe stage. And that likely in three years, she will not know her children, this according to the neurologist's experience, research, and all. Alzheimer's is an insidious disease. I really thought for the most part she was doing well.Whatever, today I choose to linger in this complicated mental state of optimisim and denial. I really just don't want to lose anymore of my mother.
Posted by Judy at 9:00 AM

3 comments:

ladyd said...
Understand...some the hardest lessons for me to learn as my mother has progressed through the various stages of dementia, have been to accept the changes that go with. The sooner I accept, the sooner I adapt to each change, the less stressed we will all be, the less grief we will all endure at my denial. The optimisim, is gone, hope for reversal of the stages is gone. Her end is too near, but how near is that, appears to be her decision as she is in the last stages of it all.
December 23, 2009 1:37 PM

Oh Dear said...
You have a precious mother and I know she feels the same about you. Love you.
December 23, 2009 10:44

Snowfall

We have snow, about 6-8 inches and Chrissy is on the phone letting people know! Thursday, before the snowfall, she was focused on the one present under her tree, from her daughter-in-law. Last year she just had to know what her present was, so the gift was opened and then rewrapped; looks like with the snow she now has a new focus. Most days, Chrissy always looks forward to what the mailman might bring and more so with the season as she loves opening Christmas cards. It’s interesting to me that she remembers friends from thirty years or more. She recalled a time when she and two friends were making cream candy and as it was being pulled outside, the dog snatched it away! Chrissy said she just laughed at her friends because they were so mad! Yesterday she received a card that played music and just laughed as she opened and shut it several times. I love love love hearing her laugh!

Slow Learner

While there are many instances where it’s clear that I am indeed a slow learner, the latest with Chrissy only confirms such. Last week after I had gotten home and settled in Chrissy called, frantically saying her freezer had broken and the ice cream was melting. My sweet man volunteered to go over and check things out. He returned a while later with three cartons of ice cream - of all the food in her freezer, the ice cream was her only concern! Seems that the freezer door had not been fully closed and I then remembered several times lately that I had found the door partly open. Chrissy will open the door and not close it completely, if course thinking she has, much like when speaking, she will not complete sentences or even say the entire word and then insist that it's me who can't hear! The next morning when going there before work, I was greeted with “where’s my ice cream?” I told her I had forgotten to bring it; she seemed okay and continued talking about something else. Early the next morning, before I’m even up moving around, she calls to remind me not to forget her ice cream! So now, before going home, I will definitely check to make sure the freezer door is completely closed.
Such is life with my mother!

Too funny!

Okay, - I just couldn't help but post Ms. Chrissy's latest comment. Seems like I am always mentioning the walker or I am bringing it out from its assigned place in mother's dining room corner. Yesterday after church I stopped to pick her up and take her next door to our house for the afternoon. In driving her back to her home and after finally getting her inside the front door, where she just stops moving, as gently as I can muster, I told her all three of her doctors have explained the importance of and told her to use the walker. Still standing firmly in the doorway and with a most perplexed expression, Chrissy looked at me and said, "why - Judy Denise, I don't have three doctors!" And then, she just stood there and started laughing! Can you guess what she focused on for the remainder of the evening?

So the thought does cross my mind that after six full years with Chrissy's Alzheimer's, having advanced degrees, most weeks researching dementia, numerous interactions with other caregivers, consultations with professionals, and $$ spent on therapy, why would I continue to try and rationalize with my mother??! Who knows why at times I continue to try and make sense of things.

I do know that this intrinsic and powerful relationship with her, such a gentle woman who journeys daily without the love of her life, without cognitive or physical stability, is indeed a priority in my life. And while there are times of aggravation and frustration, there are also days when I am grateful to live next door and honored to be her daughter and caregiver.

Birthday Card

A couple weeks ago Chrissy wanted a funny birthday card to send my sister in KY. I brought in four cards and she chose the one she liked best. I agreed to address the envelope and mail it once she had written a note or signed the card. Chrissy most always includes a check for birthdays and visits. Long story short, the card ended up missing and for days, off and on, we looked everywhere we could think off. Finally we pulled out the other cards and she decided on the next best card but was "too tired" to sign her name or write anything down. The following day my sister called to thank mother for her birthday money! Chrissy had forgotten that she had given the card to her youngest daughter to mail!

Looking for things in and around that house occurs so frequently that it is unbelievably comfortable. Either Chrissy has misplaced the item, someone while cleaning has put it up somewhere, company is in and rearranges to help out, and of course there is always my contribution to this dance. We know to start opening drawers, cabinets, and closets and we just find all kinds of new things!

Neurologist apt.

Chrissy's annual neurologist appointment is Wednesday. Friday evening she was going on and on about why it is she has to go. After a while of being quite my little mother ask me if I would help her study for those questions the doctor always asks! I told her absolutely.

Today while we were eating lunch Chrissy said the tree in her yard was much prettier than any of ours. She wanted her picture taken with the beautiful tree. She's holding a little pumpkin that sits on her front porch.

Where is the trash can??

A few days ago Chrissy told me that my sweet man took her bathroom trash can, seriously! Now, he does get her trash from the garage and takes it to the dump whenever he takes ours. I can't even imagine him going through the hallway into her bedroom to get to the bathroom trash - not happening, besides that's my job! Anyway I really thought we would find her container but after a few days of it missing I ventured to Wal-Mart and picked her up a new one, same color and almost the same size. Later the trash can was found outside on the deck by her flowers. As I was thinking about that I remembered one morning when I found the bird-feeder in the back bathroom. Chrissy most likely just got them mixed up - she loves to be busy and I can just see her moving along as she thinks she's helping out!

I'll provide a little more information on the bird-feeder task. Each evening Chrissy says "take in the bird-feeder" or will ask if I remembered to take it in. Then each morning it is put the bird-feeder back out as it hangs on a post off the deck. This daily ritual began last summer when one evening we saw a large raccoon sitting on the deck rail as he feasted on the bird food. I tried to run it off with a broom but that critter just looked at me and kept eating! I soon heeded Chrissy's advice that we should leave it alone and go back inside. Of all things for her to remember and fixate on. She knows that I don't particularly care for the bird-feeder task so in an effort to help me she frequently sets it outside the back door before I get there in the mornings. Just for clarification, that does not help.

I told her I was going to write about the missing trash can and wanted to take her picture holding it to post on the blog. Her reply, "no, let's leave it where it's at - it might get lost again!"

Cooking Together

Chrissy has spent most of her life preparing food and while her desire to cook is still with her, she is unable to remember ingredients or follow the process on her own. We seem to have settled into a rhythm of cooking together, something we really never have been able to manage. So, much of this past weekend Chrissy spent at my house and we baked and cooked!

I had recently stumbled on a new website, http://www.theothermama.com/, and found a microwave apple crisp recipe that I thought might be good to create with my mom. Sure enough, Chrissy sat at the table,peeled and cut up all the apples and stirred the mixture as I measured and poured. After baking, we added French Vanilla ice cream and at 11:00 AM we decided that recipe was a keeper. Next we began working on a crock pot chicken and vegetable soup I had printed out earlier from Rachel Olsen with Proverbs 31 Ministries, http://www.rachelolsen.blogspot.com/ With this recipe I just opened ingredients and sat them out for Chrissy to dump in the crock pot. I even was comfortable letting her add seasonings as I knew much of their flavor would be lost by adding them so early. The soup turned out well and is also a keeper! The following day while looking at the October issue of Southern Living we found a recipe for caramelized apples. So, I brought up more apples from downstairs and again, Chrissy peeled and stirred. With this dish, everyone agreed our own recipe was better; we use butter, much more brown sugar, and cinnamon. That afternoon we made a chicken and rice casserole, a recipe I have used for years and know by memory. While Ms. Chrissy poured and stirred, she asked several times if I was sure about the recipe, the ingredient or the amount, as I didn't have anything to follow. That evening when I prepared Chrissy's plate of casserole, she grinned and said she had already tasted it and it was no good! She continued laughing and said I had done something wrong and there was no use of trying to fix it! She then requested vienna sausages, seriously!
Chrissy is such a hoot.

Time Away

Oh my, it has been over a month since my last post! We have been on vacation with friends and returned fully rested. While away, Chrissy took a fall one morning as she was coming in the back door from the deck, ending up with soreness and a bruised and scraped elbow. When the lady who stays with her arrived, Chrissy told her that she was dizzy but didn't say a word about falling. That afternoon I received a call from the lady that mother was missing me and wanted to know when I was coming back. While I am so thankful nothing was broke as it could have been so much worse, I just hate it that she was alone when hurt.

Moving along, while my sister from KY was in visiting mother, her precious daughter came over and the three of them played rummy! Of course Chrissy loves all her grandchildren but this granddaughter brings out the laughter whenever she and Chrissy are together. I hear that Chrissy plays really well and that she won more times than not! While allowances were made whenever a card was laid down and Chrissy would change her mind, both my sister and niece agree that she plays rummy really well and it's just amazing!

Chrissy's Company

Chrissy loves having company drop by, which is good because these past few weeks she's had four or so visits. A dear lady from her Sunday School class stopped in one morning with two peaches and the current issue of Journey magazine. This woman is so faithful to visit my mother. Another day, while at the office I called home and asked her what she was doing; to which she replied, "I'm talking with this man and his wife." While she couldn't get their names out, eventually she was able to say "Ed's friends."

Over the weekend I was at the grocery and thought I'd call her. This time I was told that she couldn't talk with me as she was talking with this man who does the same kind of work as her grandson - in law enforcement - and then she hung up the phone! That made me stop the cart in mid isle and I immediately called back - she said "he has his kids with him" and then hung up again - I kid you not, no hello or goodbye - only a few words, then click. I headed out the door wondering who I might call to check on her as my sweet man was golfing in S.C. I was almost to my car when Chrissy called and started chattering that the man had left and that his children were selling something for school; she had contributed $2.00 to each child, - way out of character as Ms. Chrissy is usually as tight as the bark on a tree. We continued to talk with me stating very clearly that she not hang up until I said goodbye (doesn't always work as we've stated such before!). Back inside, I returned to the cart - still in mid isle where I had left it and continued with the list though much less focused. Once home, we were able to place the mystery man's idenity as mother remembered his parents lived in our neighborhood. She seemed a bit flustered, probably because of my anxiety and all the questions! She repeated several times that I should know she wouldn't just let anyone inside! As I was unpacking her groceries my sweet Chrissy commented that I sure didn't get her very much!

Last year, she would go out and about with me and would be fine. She even looked forward to weekend trips to Tuesday Morning. This year it is so different in that she wants to stay home, most all of the time, so I keep tabs on her with the phone and that usually works okay. I know the day is coming when there will be a new plan.

Update on Blood Tests

I heard from her doctor this morning and learned that Ms. Chrissy's blood work is almost better than mine! Her B12 level is three times higher than mine - go figure! You all know that her main food group is sugar. Seriously there is something sweet with every meal and often dessert is her meal. I had the doctor's office fax the results - I am just floored!

Health Concerns

My little mother's health has declined these past few weeks. She seems to have no energy at all; she seems exhausted with even the slightest task. Friday we went to her family doctor to have blood work, including a B12 level. I really must get her established with a geriatric physician. I guess it's also time for the annual neurologist appointment.

The other day Chrissy was talking about my sister who mother believes to be very forgetful - and then she made reference to something I had forgotten. She paused and said, "and I'm the one taking medicine!"

Today she spent a few hours with me at my house. I lured her over with green beans to string! Once inside, she wandered over to the kitchen table and found a plastic bag with seven tomatoes. She counted out three, laid them aside and said "that leaves you four and me three - okay?" I just love it!

Evenings continue to be most difficult for her. The past few weeks while watching TV, she will lay her head over on her chair while rocking and just stare off. This is unusual for her as she always watches her favorite shows at night. Her convesation is even more repetitive.

Pizza and Ice Cream

Some days Chrissy will keep our dog, Sam, for company. One recent rainy day I had a phone message from Chrissy that Sam didn't like the rain storm - that was it, just one sentence, no hello or goodbye. Within an hour another one sentence message - Sam was shaking. A little later there was another message that said, "Judy I'm spending the night with you." I called my sweet man and he went to stay with Chrissy until I arrived home from work. The above photo was taken that evening. We ordered pizza and had ice cream and strawberries for dessert. I am so blessed that Chrissy most often is easy, flexible and precious - and to have a sweet man who loves my mother. I hear struggles from other caregivers that their loved one requires constant care and that the disease is more progressed, making care so difficult. My heart aches for those who have little support and greater family stress.

New Recipe

A few weeks ago I found a new adult version recipe for macaroni and cheese that I wanted to try. I knew I would have extended time with Chrissie over the Memorial Day holiday and thought she and I might cook together. I looked forward to the complicated recipe knowing that mother usually enjoys “helping out.” Chrissie had the task of stirring the roux – around 15 minutes. When I added dry mustard, cayenne, and garlic to the roux mixture she calmly asked that I reread the recipe. While stirring she stated several times “everyone likes the macaroni and cheese you always fix.” Later when blending three cheeses with the roux mixture she commented “I don’t know why you want to make it different.” When mixing the topping she continued with “you don’t change something that’s already good.” During dinner she kept looking at my husband and when he commented that the macaroni sure was different, Chrissie immediately and boldly said “I told her but she didn’t listen to me…she never listened when she was growing up either!”

Another note:

While reading on The New Old Age site I came across a blog written by Paula Span that included comments from Dr. Ronald C. Petersen, a neurologist at the Mayo Clinic who chairs the medical and scientific advisory board of the Alzheimer’s Association. He stated, “As their families know, Alzheimer’s sufferers may experience days of comparative lucidity alternating with days of bewilderment. Cognitive ability may even vary throughout the day; a person might be relatively sharp in the morning and by evening be quite confused.” I have never read or heard this stated so clearly before and am trying to research Dr. Petersen’s entire article. I know Chrissie has good and bad days and she does have the uncanny ability to “pull it together” whenever company comes.

Favorite Things

I thought this might be fun for Ms. Chrissy; the questions are from a favorite site, http://www.marybethwhalen.blogspot.com/ . Interestingly, she answered most immediately and more that a few really surprised me!

20 Of My Favorite Things

1. Color- light blue
2. Dessert- cheesecake
3. Smell- lilac
4. Flower- red geraniums
5. Animal- Sam and Sasha (miniature schnauzers - mine and Wilma's)
6. Month- I like all of them
7. Beverage- Ale-8's (soft drink produced in Winchester, KY.)
8. Pair of shoes- tennis shoes
9. Snack- cheetos
10. Song- many pretty songs
11. Book- my Bible
12. Fruit- peaches
13. Hairstyle- the same one
14. Piece of clothing- jeans and pink blouse
15. Store to clothes shop- Belks
16. Season- spring
17. Hobby- use to be working in flowers
18. Thing to collect- never collected anything
19. Movie- Driving Miss Daisy
20. Restaurant- Kelsey’s

Alzheimer's series - HBO - May10

The Alzheimer's Project begins Sunday, May 10th on HBO.

Sunday 5/10 9 p.m. The Memory Loss Tapes
Monday 5/11 7:30.Grandpa do you know who I am?
Monday 5/11 8:00 & Tuesday 5/12 8:00 (2 parts) Momentum in Science
Tuesday 5/12 7:00 Caregivers

This series is also produced on DVD so if you don't subscribe to HBO you can contact your local library and request they order the DVD series.

Absent Look

The "absent" look now seems to be with Ms. Chrissy more frequent and for longer periods. A couple weekends ago it lasted from Friday evening through Sunday, the longest ever. During the episode she is very quiet and slow to respond. This latest spell left her struggling for words more so than usual.

On a different note, my little mother loves to help out. I hosted bookclub the other evening and Chrissy rinsed and sliced strawberries, which was most helpful. Spring has also ushered in her desire to redecorate. Chrissy has changed living room rugs and had furniture moved from downstairs to upstairs. This evening she's talking about freezing strawberries! Another day.