My dear friend Becca doesn't blog - she has both her hands full, but always takes time to stop by on Wednesday to share her story of caring for "the mom". I decided to post her comments so more of you can meet her - she is joy all wrapped up in a beautiful person.
Here is her take on Random...
Random – to me is anything and everything. It amazes me the random
things the mom has stored away in her long term memory bank. Mom can
hardly carry on a conversation with you but she is an amazing 42 player.
She was a professional banker back in the day and was really good with
numbers. Not sure if that has anything to do with it or not.
She has a lot of memories from her childhood and we can get out old
photos and she can tell me who is in the photos and where they were in
the pics. You can show her current pics and she has no idea. It’s
kinda scary how all of that works. Short term memory seems to be
non-existent.
When visiting the mom in rehab daily, other residents try to talk to
her. She knows many of them from the past but doesn’t want to have much
to do with them even though she use to be the social butterfly.
Mom
asks why she is in a nursing home with all these old people? Mind you
mom is 82 and doesn’t realize she is like many of them. Her decline is
frightening to me because her desire to get up and go has diminished.
Sleeping the day away seems to be the routine except for the twice a day
therapy.
Each day I try to bring her little dog Chloe to see her. It is strange
to me and seems unfair that her dog and possessions are more important
to her than the people that love her. Mom has always been all about
“the stuff”.
Yesterday, I bought the mom two new lounge dresses to wear thinking she
might get up out of bed and get out of her room. It probably won’t make
any difference but she is like a child when she gets a present.
Our
conversation was extremely one sided and she asked at least 10 times
where she was and when she was coming home. Rehab does not think she is
safe enough to leave the facility yet. They told me she races her
walker and forgets how to use the brakes. Falling and breaking a hip is
a huge concern.
When they tell her to slow down and take her time she
gets distracted and starts looking into the other resident’s rooms
stopping at each one to see what they are doing. Extremes must be part
of it.
Well today is a new day that the Lord has made. Let’s see what He has
in store for us. Remember to pray for the people affected by the
tornado and mass destruction because they are much worse off than we
are. Have a blessed day. Love yalls!
Wednesday, April 30, 2014
Random Acts of Alzheimer's
Another week, another Wednesday, another word.
This week's One Word Wednesday prompt is RANDOM and I am becoming quite an expert on that!
I completely underestimated the effects of Alzheimer's on mom. I knew about the short term memory loss. I knew about the loss of names and faces. But I was not expecting how RANDOM mom's actions could be. How the brain can take something you have done every day for the past 75+ year and turn it around and upside down and have it come out in the most unexpected way is baffling to me.
It's a beautiful afternoon and the sun is shining. That means mom has taken her favorite seat on the couch by the big front windows to enjoy the day. I join her in the living room and sit down at the computer to spend some time in blogland. My husband is at work, the kids are in school - mom is heading in the direction of a nap.
All the while, Sophie, our rescue beast, is stretched out long in front of the window right by mom's feet. She loves looking out the window more than mom. Besides, it's her job. She fancies herself a watchdog.
Well, something caught Sophie's eye and she decided to bark. Goodbye nap. Goodbye uneventful afternoon. Mom was ready to chat!
Mom always opens every conversation with "Is there anything we're supposed to do today?" It's a slippery slope, because how you answer and how she hears determines how many times she will ask it. She can grab on to this question with the strength of 10 men and not let it go.
On this particular day, I believe I answered with "Nothing special, just enjoying the sunshine." And out of nowhere, mom launched into an argument based entirely on information she had been given by our dog in an earlier conversation. And nothing about this argument seemed strange to mom. Not even the talking dog.
I tried to fluff it off - didn't want to make her feel silly for thinking Sophie had been talking to her. That didn't work. Tried to point blank tell her that dogs can't talk - even our beautiful Sophie, who is quite brilliant.
Nothing worked. She was convinced that Sophie had told her she had an appointment with her doctor. She had details - the time, how soon we needed to leave. And that wasn't all. They talked about what dress she should wear to see Lisa's play this evening. I'm Lisa and I can assure you I am not doing any theater these days. (Aside from my brilliant performances pretending to be excited about answering the same question 30 times a day)
Nothing swayed her. She was up and looking for her "pocketbook" (she hasn't carried a purse since she got her walker) so she would be ready to leave and a phone so she could call me (because everyone here is "stupid and lazy"). At one point she looked right at Sophie and tried to get her to tell me what they had talked about. I think Sophie wagged her tail and laid back down.
And then it stopped. Just like that.
Five minutes later she asked me "Is there anything we're supposed to do today?" and without hesitation, I said "NO." I didn't want to muddy the water and get her all upset again. I guess it worked because she smiled, said thank you and closed her eyes for a nap.
Just one of the more RANDOM acts of Alzheimer's.
This week's One Word Wednesday prompt is RANDOM and I am becoming quite an expert on that!
I completely underestimated the effects of Alzheimer's on mom. I knew about the short term memory loss. I knew about the loss of names and faces. But I was not expecting how RANDOM mom's actions could be. How the brain can take something you have done every day for the past 75+ year and turn it around and upside down and have it come out in the most unexpected way is baffling to me.
It's a beautiful afternoon and the sun is shining. That means mom has taken her favorite seat on the couch by the big front windows to enjoy the day. I join her in the living room and sit down at the computer to spend some time in blogland. My husband is at work, the kids are in school - mom is heading in the direction of a nap.
All the while, Sophie, our rescue beast, is stretched out long in front of the window right by mom's feet. She loves looking out the window more than mom. Besides, it's her job. She fancies herself a watchdog.
 |
| She's more of a sunshine dog than a watch dog |
Mom always opens every conversation with "Is there anything we're supposed to do today?" It's a slippery slope, because how you answer and how she hears determines how many times she will ask it. She can grab on to this question with the strength of 10 men and not let it go.
On this particular day, I believe I answered with "Nothing special, just enjoying the sunshine." And out of nowhere, mom launched into an argument based entirely on information she had been given by our dog in an earlier conversation. And nothing about this argument seemed strange to mom. Not even the talking dog.
I tried to fluff it off - didn't want to make her feel silly for thinking Sophie had been talking to her. That didn't work. Tried to point blank tell her that dogs can't talk - even our beautiful Sophie, who is quite brilliant.
 | ||||
| "I see that you have theatre tickets for this evening, m'lady" |
Nothing worked. She was convinced that Sophie had told her she had an appointment with her doctor. She had details - the time, how soon we needed to leave. And that wasn't all. They talked about what dress she should wear to see Lisa's play this evening. I'm Lisa and I can assure you I am not doing any theater these days. (Aside from my brilliant performances pretending to be excited about answering the same question 30 times a day)
Nothing swayed her. She was up and looking for her "pocketbook" (she hasn't carried a purse since she got her walker) so she would be ready to leave and a phone so she could call me (because everyone here is "stupid and lazy"). At one point she looked right at Sophie and tried to get her to tell me what they had talked about. I think Sophie wagged her tail and laid back down.
And then it stopped. Just like that.
Five minutes later she asked me "Is there anything we're supposed to do today?" and without hesitation, I said "NO." I didn't want to muddy the water and get her all upset again. I guess it worked because she smiled, said thank you and closed her eyes for a nap.
Just one of the more RANDOM acts of Alzheimer's.
Wednesday, April 23, 2014
One Word Wednesday: Always
Some words comfort. Some excite. Some words bring back memories. And some words strike fear straight into my heart.
And some words do it ALL.
ALWAYS is one of those words for me. There can be a lot of pressure in ALWAYS. A lot of commitment too. When a bad thing is for ALWAYS it takes the breath away.
All the very smart, self improvement people and lots of other evolved souls will tell you and try and teach you to "live in the moment". I find it nearly impossible. I meditate - not often enough, but in short bursts to calm myself and I am horrible. My mind wanders. My list making tendencies kick in. My eyes peek. My toes tap. "The moment" is elusive.
Guess what? When you have advanced stage Alzheimer's - all you have is "the moment". You have no idea what has happened. You have no idea what is supposed to or going to happen. It's supposed to be Nirvana, right?
What I"ve learned lately is that CHOOSING to live in the moment and having a disease FORCE you to live in the moment is different. Choosing comes with discipline and thought and practice and peace. Alzheimer's takes all of that away from you. The choice. The intent.
It also creates a weird flashing in mom's brain. Flashes of memories, but just bits and pieces most of the time. No whole stories. Just a word or a place or a thought she can't capture.
Alzheimer's steals your ALWAYS.
Mom has no idea how old she is. No idea where she is. She asks for people long dead. She calls a blanket a newspaper. She asks if her nose is on right. I show her pictures and she has no stories to go along with them.
I read that her short term memory would disappear. I understood that she might call me a name from her past. I was not prepared for her to forget herself. I was not prepared for her to be cold, then cover herself with a blanket and ask ME if she was warmer.
I didn't expect her to get too weak to walk and not be able to remember that.
I thought I'd ask her questions and she'd tell me stories about her past. Her loves. Her friends. Her family. Her first kiss. Her recipe for pecan pie. But it's all gone. I asked her today what she would want to see if we went back to her hometown and she smiled and me and it was clear - she had no idea what I was talking about.
These days we can talk about the weather. I can tell her the names of the hosts of the Today show as often as she can ask. I can tell her why her back is hurting. I can sing "You are My Sunshine" with her as we exercise. But no stories. No memories. No connection. No always.
And some words do it ALL.
ALWAYS is one of those words for me. There can be a lot of pressure in ALWAYS. A lot of commitment too. When a bad thing is for ALWAYS it takes the breath away.
All the very smart, self improvement people and lots of other evolved souls will tell you and try and teach you to "live in the moment". I find it nearly impossible. I meditate - not often enough, but in short bursts to calm myself and I am horrible. My mind wanders. My list making tendencies kick in. My eyes peek. My toes tap. "The moment" is elusive.
Guess what? When you have advanced stage Alzheimer's - all you have is "the moment". You have no idea what has happened. You have no idea what is supposed to or going to happen. It's supposed to be Nirvana, right?
What I"ve learned lately is that CHOOSING to live in the moment and having a disease FORCE you to live in the moment is different. Choosing comes with discipline and thought and practice and peace. Alzheimer's takes all of that away from you. The choice. The intent.
It also creates a weird flashing in mom's brain. Flashes of memories, but just bits and pieces most of the time. No whole stories. Just a word or a place or a thought she can't capture.
Alzheimer's steals your ALWAYS.
Mom has no idea how old she is. No idea where she is. She asks for people long dead. She calls a blanket a newspaper. She asks if her nose is on right. I show her pictures and she has no stories to go along with them.
I read that her short term memory would disappear. I understood that she might call me a name from her past. I was not prepared for her to forget herself. I was not prepared for her to be cold, then cover herself with a blanket and ask ME if she was warmer.
I didn't expect her to get too weak to walk and not be able to remember that.
I thought I'd ask her questions and she'd tell me stories about her past. Her loves. Her friends. Her family. Her first kiss. Her recipe for pecan pie. But it's all gone. I asked her today what she would want to see if we went back to her hometown and she smiled and me and it was clear - she had no idea what I was talking about.
These days we can talk about the weather. I can tell her the names of the hosts of the Today show as often as she can ask. I can tell her why her back is hurting. I can sing "You are My Sunshine" with her as we exercise. But no stories. No memories. No connection. No always.
Wednesday, April 16, 2014
One Word Wednesday: ESCAPE
I've always loved the idea of escaping - even before I was a full time caregiver. A flight somewhere, a beach, a good book, a beverage with a kick! I excel at escaping!
I've really had to rethink escaping these days. I don't have siblings. I don't have money. There are few (really no!) resources for Alzheimer's patients and their carers. But sanity is a must in the caregiving game!
Therefore, escape is necessary.
My favorite place, time and activity that is just for me (which means it qualifies as an escape) is lap swimming at 5am. How bizarre that setting an alarm for 4:25am, putting on a swimsuit in front of strangers and pushing myself to the cardio limit would be an escape?
But it is. No one can bother you when you have your face in the water. They can't start a conversation. They can't ask you to get them anything. They may put their legs in your lane to show that they'd like to share, but I don't even have to speak to acknowledge them. I just have to raise my head slightly at the end, nod and scootch to one side. I don't even have to smile if I don't want to.
I don't even count laps anymore. I swim for 40 minutes. That way I don't have to focus on or be responsible for anything. I can daydream. I can create a story as to why there is a hairband on the bottom of the pool - who did it belong to? Who were they at the pool with? How old are they? What color was their suit? Did they stop for a smoothie on their way out?
I also get to tick off the exercise box that all of us who fear Alzheimer's need to tick off every day. Maria Shriver's special series on Alzheimer's said 20 minutes of cardio a day might just stave off the effects of Alzheimer's for a day....I can work with that!
I get to see people that aren't my family. I gave them all nicknames so I don't have to bother learning their real names - Super Swimmer, Murph Trunks swimmer, Long Tall swimmer, Face Mask swimmer, Gray Back swimmer (sorry for that mental picture, ladies), WWE swimmer, Think Pink swimmer, the hateful couple swimmers, Crossman swimmer...and Mr. Suspenders - he water walks, but he's one of us. I don't have to talk to them, but I can. I don't have to worry about them, but I do if they're not there for a few days. I don't have to feed them or dress them or do their laundry and ... cherry on the top of these swimmers.... I don't have to answer any questions for them! Not even once!
I have other escapes in my day - I watch Jimmy Fallon while I make dinner and I laugh! I take 5-10 minutes for myself every morning after the kids are dropped off for school and mom has had her breakfast and the beds are made to just meditate and stretch. I sneak upstairs for this, so I have to be careful not to yoga-breathe myself into a nap! I pray. I blog. I put headphones on at least once a day and take at least a one-song vacation. Something delicious - Al Jarreau, Justin Timberlake, James Taylor, Earth, Wind and Fire, Big Daddy Weave, Toby Mac, Christina, Michael Buble ....ahhhhh ...musical escape....
I've also been known to sneak my face into the freezer with a spoon for some ice cream therapy or run through McDonald's to have a near-religious experience with a fountain Coke Zero and there have been a couple of 2am tiptoes to the fridge for a Redd's Apple Ale and a game of 2048 on the computer before I try and go back to sleep....do any other caregivers find sleep elusive??? Or is it just my age?
And then there's Target...my great escape. 2 hours alone at Target without a list to speak of....is it just too embarrassing to admit that Target is now my beach.
So, there you have it - my many ways to escape!
I've really had to rethink escaping these days. I don't have siblings. I don't have money. There are few (really no!) resources for Alzheimer's patients and their carers. But sanity is a must in the caregiving game!
Therefore, escape is necessary.
My favorite place, time and activity that is just for me (which means it qualifies as an escape) is lap swimming at 5am. How bizarre that setting an alarm for 4:25am, putting on a swimsuit in front of strangers and pushing myself to the cardio limit would be an escape?
But it is. No one can bother you when you have your face in the water. They can't start a conversation. They can't ask you to get them anything. They may put their legs in your lane to show that they'd like to share, but I don't even have to speak to acknowledge them. I just have to raise my head slightly at the end, nod and scootch to one side. I don't even have to smile if I don't want to.
I don't even count laps anymore. I swim for 40 minutes. That way I don't have to focus on or be responsible for anything. I can daydream. I can create a story as to why there is a hairband on the bottom of the pool - who did it belong to? Who were they at the pool with? How old are they? What color was their suit? Did they stop for a smoothie on their way out?
I also get to tick off the exercise box that all of us who fear Alzheimer's need to tick off every day. Maria Shriver's special series on Alzheimer's said 20 minutes of cardio a day might just stave off the effects of Alzheimer's for a day....I can work with that!
I get to see people that aren't my family. I gave them all nicknames so I don't have to bother learning their real names - Super Swimmer, Murph Trunks swimmer, Long Tall swimmer, Face Mask swimmer, Gray Back swimmer (sorry for that mental picture, ladies), WWE swimmer, Think Pink swimmer, the hateful couple swimmers, Crossman swimmer...and Mr. Suspenders - he water walks, but he's one of us. I don't have to talk to them, but I can. I don't have to worry about them, but I do if they're not there for a few days. I don't have to feed them or dress them or do their laundry and ... cherry on the top of these swimmers.... I don't have to answer any questions for them! Not even once!
I have other escapes in my day - I watch Jimmy Fallon while I make dinner and I laugh! I take 5-10 minutes for myself every morning after the kids are dropped off for school and mom has had her breakfast and the beds are made to just meditate and stretch. I sneak upstairs for this, so I have to be careful not to yoga-breathe myself into a nap! I pray. I blog. I put headphones on at least once a day and take at least a one-song vacation. Something delicious - Al Jarreau, Justin Timberlake, James Taylor, Earth, Wind and Fire, Big Daddy Weave, Toby Mac, Christina, Michael Buble ....ahhhhh ...musical escape....
I've also been known to sneak my face into the freezer with a spoon for some ice cream therapy or run through McDonald's to have a near-religious experience with a fountain Coke Zero and there have been a couple of 2am tiptoes to the fridge for a Redd's Apple Ale and a game of 2048 on the computer before I try and go back to sleep....do any other caregivers find sleep elusive??? Or is it just my age?
And then there's Target...my great escape. 2 hours alone at Target without a list to speak of....is it just too embarrassing to admit that Target is now my beach.
So, there you have it - my many ways to escape!
Tuesday, April 1, 2014
One Word Wednesday: Gratitude
Thank you Ann Voskamp for writing One Thousand Gifts. And thank you Nook for making it a "Deal of the Day" on just the right day. And thank you evil recumbent bike for giving me 45 minutes with nothing else to do but plow through the heart-wrenching first chapter and get me to the blessing before I gave up on the book.
Thank you.
The simplest of phrases. The biggest of life-changers.
Learning to seek out reasons to be thankful. To write down and define and photograph and share all the things I am thankful for. To take the time to look deeply at situations and find the grace that may be hidden way, way down inside. It has made me a better mother. A better wife. A better caregiver.
Don't get me wrong - I am so far from mastering the art of living thankfully! I fall down and grumble and feel sorry for myself often. And then I get back up, take a deep breath and add something to my list of 1000 gifts. I am surprised most days at how simple it is to find something to add...
Fresh blueberries. A robin at the bird feeder. The big Texas sky. My daughter singing. My son shooting baskets in the backyard. Billy Joel and Jimmy Fallon's doo-wap duet on the Tonight Show. Belly laughs. That delightful canned whipped cream!
Even on the bad days with mom - days when she is paranoid (the worst days for us) - I find gratitude in being there for her. In the way she still knows - even though she doesn't remember anything else - that I am someone who will never let anything bad happen to her.
I choose to be thankful for things that could make me nuts - like our morning routine. I choose to focus on what is good about staying on routine. To celebrate the things mom gets right because we have a routine. I choose to NOT resent routine. Resentment would spoil the morning and leave no room for tiny celebrations. Resentment would sour the taste of breakfast and make conversation strained.
Thank you has become one of my go-to prayers in the hard times. Along about the 44th time of telling mom what day it is, it would be easy to be resentful. But if I break it down with a grateful heart - I realize I can be thankful that I still know what day it is. I can still comprehend and answer simple questions. I still have my mom alive to pester me. I have a strong, loud voice that she can hear better than a lot of other voices.
Today, in the midst of 3 piles of laundry that needed to be done, meals that needed to be planned and prepared, kids that needed picked up, dropped off, chauffeured here and there, a house that needs some cleaning and bills that always need to be paid...I got to sit and hold my mom's hand so she could relax and stop shaking. I got to brush her hair and stand beside her for moral support while she did her physical therapy.
Caregiving is a gift. It may not be the fast, cherry red convertible that I dreamed of, but it's a reliable sedan that gets me where I need to be. I just need to remember that. And say thank you!
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