In seven minutes...

I was out with Riley and this is what Ashley recorded. A snap shot of life here with Gmom, who recovered physically great from colon cancer surgery, but mentally...well take a peek.

4:15 Mary I want to go back to the hospital please right now
4:16 I want to go back
4:16 Mary I want to go back to the hospital please
4:16 Mary whats wrongs with me please answer me I don't want Tim to answer
*bangs cup*
4:17 Mary I want some more water
4:18 MAAARRRYYY
4:18 You're going to make me go back to the hospital aren't you? I don't want to go!
4:18 MAAAARRRYYYY
4:20 Cilantro hormonal, hormonal cilantro, hormonal, hormonal, cilantro cilantro
4:20 Mary what's wrong with me?!
4:21 Oh my god
4:22 Mary what's wrong with me?

This went on, but Ashley stopped recording.We have answered these questions for a month now. Tiring for her and for us...
 

Parenting my Mama...on strange behavior and sleep deprivation

It's going on 4 weeks now and Gmom is still "lunar". She is just not with us mentally like she use to be. She is so needy and clingy and confused and with that comes all kinds of strange behaviors. For those who are parents, remember the days of little kids needing another glass of water, another story, another reassurance that this is no boogie man under the bed...Now take an 80 year old mama, with those same needs, same fears, and same mischievousness...and you can kind of imagine my night time routine. I tuck her in, she gets up to pee. She wants to eat, I say it's bed time, she gets grumpy, shakes her head No, I use the "this is what you are going to do" voice, she does it...Back in bed. 40 minutes later..."MARRRRYYYY"...And she has no reason to call, most of the time she forgets why she called me altogether...and on it goes. I was with her more than 12 times last night but I stopped keeping track. I slept on the couch near her room so I could catch her quickly before she woke the whole house. I tucked her in, I said "I love you" kissed her forehead and shut her door. 20-45 minutes later she was up to pee or screaming my name again. She sleeps with her TV on and I have this feeling it over stimulates her sometimes, so to make a concrete action to her screaming, I let her know, "wake me again and the TV is off for the night". My rationale is she is a creature of habit, and once something happens regularly, she expects it. If we can get her to sleep at night in a quiet room and be awake in the day in a TV loud room, that would be great. If the TV being off tells her, it's night you need to sleep and not yell "MAARRRRYYYYY" every 15 minutes...wonderful. Well the TV being off last night caused her so much stress, she forgot about the fear of the hospital.

Some of the things I find helpful, as with a young child, is to say it how it is going to be...You are going to do this, this is going to happen. I am not very good at this style of talking, though. Me and my kids have conversations, we each have input and decisions are consensual...Mom isn't listening, isn't hearing, isn't aware that 5 other people are being kept from sleep by her antics. There is no consensual with deal with her...And she is starting to not like me, saying mean things, which like the kid who is angry, I let wash over me like water off a ducks back. At least I have had a lot of practice...thank you Riley.

On the sunnier side of our new new, my kids have been especially loving to me, telling me how much they love me more than usually, stopping to give me hugs as I tend yet again to the screamie meamie. They are gentle and caring, which bouys me up. Tim is fed up with Gmom. He has had enough. He is worried for my health, my sanity...He would like her living elsewhere if she can not find a way to stop yelling all the time. Tough decisions lay ahead for us. For the last 2.5 years we have coped and helped and loved and shared our home with gmom as a family. I feel like if she and I were the only ones, we could manage. But I am a wife and mother too...and my family needs me...whole, loving me...not worn out tired frustrated daughter to a lunar bell.

And just when you think she has left the building completely, she's back...Since I started this post, I  left to pick up Riley, take him to his orthodontist appointment and am now home again. I was gone for about an hour. Well, Gmom seems more relaxed today, more here in the now, less panicky. And she actually sat and listened to me express what happened last night, since she doesn't remember past 20 seconds. Big things make impressions with her, though, so turning off her TV last night after the 6th time she called for me at 11pm and the subsequent multiply panic freaky callouts that happened following this did leave some kind of memory with her. I am hoping having a concrete consequence can help shape her a new new routine, one that does not include massive amounts of night waking, screaming, and other oddness. We shall see...

Trying to make it work...for everyone

No sleep...the end...for anyone...ok my teensTessa and Riley have not been bothered by Gmom's big midnight calls. Tim and Ashley (in college) on the other hand are weary from the many calls for help. I tend to sleep through about half the calling and go and harass her the other half and help as needed. Her lack of sleeping and panicky nights have been going on for more than 2 weeks and we are done, finished, talking care homes and apartment living. At least she stopped hacking and retching, that made the whole house vibrate as she somehow amplifyed the noise with the bowl bedside.That was LOUD.

I called the advice nurse Tuesday. Wow that was the worse conversation I have ever had. She must have had a triple latte because she was buzz talking and interrupting everything I said. And then she would say, "Oh I don't need all the details" What, I haven't given you any because you have talked over me for the entire call. Plus my mom needed help while I was on the phone. I hung up mad and it was early and I was tired, like all nighter from college during finals tired. Not good. I then emailed her doc and he responded with "it sounds like a need for psychiatry". I called psychiatry Tuesday. They took a message. I called again Wednesday, they said "we will get you on the calender" in a message. I called again Thursday and they told me, "oh, she's on a wait list. By the way, the wait list is out 50 days at least." FIFTY DAYS...I told them "NOT OK give me options or we all will be in psychiatry." They gave me another number, I left another message...We got no sleep again last night.

Today I emailed the doctor, told him the details and then I realized I could email her old psychiatrist, the one who wrote a prescription for sleep meds 3 years ago...AND she said "yes I can help you, yes I will send that right to the your pharmacy and if you have questions please let me know"...We have always called this doctor Dr. Sunshine because she was the first who saw mom when she was getting loopy. She put her on vitamin D and told her to get outside in the sun for at least 30 minutes everyday...Doctor Sunshine you sent your rays of sunlight and sleeping potion our way on this blustery day and I thank you so much. On top of having meds tonight we woke Gmom up every 45 minutes from 7am until 9pm tonight. I set a little timer and hopped on her bed and chatted and she laughed at my wake up Gmom antics. I got her up to the table more than usually also and Tessa and I bought her an Elmo coloring book. She colored Big Bird so yellow.

I just gave her that little white pill...oh please do your magic and help her relax and sleep and forget that she yells out "MAAAARRRRYYYY" every 45 minutes from 2 am until 7 am.

That's an interesting thing about dementia habits. She gets a habit and it  seem all encompassing and then it fade away and another habit takes hold. Sleep over retching, yelling, and potty breaks...I am visualizing it oh so clearly....Sleep... I see her now so comfy in her blankets, clean from her shower and in fresh linens. Sleeping...Sleeping...ah..Good Night.

She's getting on our nerves

Gmom has been panicky and anxiety filled and overall cranky lately. She yells out for me day and night and when I ask what is up or how can I help you, she has nothing to say. I leave and 1 minute later she is screaming for me again..."can I have chocolate," or "do I have to go", or "when do they take me"...over and over and OVER again. Yes. you can tell I am getting annoyed...Trying so hard to get through to her, in a kind loving way, TO BE NICE OR ELSE. I know yelling is not going to help, but I did raise my voice yesterday.

I had helped her in the bathroom, I got her water and then told her I was sitting down to play a game with the family. 3 minutes later she starts screaming, "Mary".. I ignored it. "Mary" again, it's getting to me. "MARY" so loud I jump in my skin a bit...and so I Yelled...I told her to leave me a lone for a few minutes, that I just helped her and I wanted to spend 20 minutes playing a game with my kids and hubby. And you know what, it just makes her feel bad, and me feel bad...will she remember? No...will she scream out for me again? Yes. Breathing, releasing, relaxing. I am just not sure we all can handle living with her when she is so demanding, so loud and forceful in her requests, and so unable to filter herself these days. I have a call in to her doc to maybe change her meds, add a sleeping med, and another call in to the surgeon...Hurry up and schedule this already...

The other side of this is she keeps retching, keeps thinking she needs to throw up. Whenever she gets stressed. like after I chewed her out for interrupting my game, she gets all panicky and retches. The sound is loud and fills the house and we all are tired of it. She also is waking up Ashley who is in her 2nd semester of college and has a very full schedule and no room for missed sleep, so...overall, the family is being affected in many ways and we won't be able to continue long term living with her if she keeps up the cranky screaming retching panic attacks. Options now...and working with her docs...and surgery...t

Finding a Way to Understanding

Well, I did get away yesterday. I went to prune roses at one of my favorite client's homes. I love the work I did. I got to use my femanly strength to dig out old old roses after carefully pruning the keepers. I almost broke a shovel handle. There is nothing like good physical work with a purpose and strong wind to blow away the stagnant airs of a bad night's sleep. I went out again later in the evening too, as last night was the yearly swim banquet for our local swim committee, Sierra Nevada. Riley was awarded for his top in the Nation swims, our age group coach and head coach both received awards and one of our senior swimmer's received female swimmer of the year. It was a good night out and the Davis Aquadarts were the Grand supremes...(a little too much toddler and Tiara with Tessa lately).

I had a break through, thinking about helping my mom get to a place of making a decision. She knows what surgery looks like and is scared, as anyone one be. What she can't grasp is what not having surgery will be like. That is a bigger scarier unknown to me. What does colon cancer look like when left untreated? What happens when a  colon blocks from a large tumor. We have all been told, but we don't really know. None of us have experienced these things, and my mom especially is having a very real hard time seeing this path. It seems when she says no to surgery, she thinks life will continue as it is now, which is warm and comfy and easy for her. She is doing amazing, the water weight she had is resolving itself and she is moving better than she has. Today she is active in our conversations, is clear in her eyes, and seems a bit more here. So today when she asks me again, what happens if I don't have surgery...I will try to paint that very real scary picture for her, so she can see that not having surgery is also very scary, and painful, and could result in death too. Surgery may be scary, but...as my sister pointed out, it could go just fine...she could wind up cancer free and strong following this procedure. She could, after recover, add years to her life. We don't know though, and that leaves us in a place of indecision and confusion.

Lots of Night Waking

Gmom has been up and down averaging 25 times a day...for the past THREE days and nights. Not sure what this is all about. She says, "aren't I suppose to go to the bathroom?" and "I thought I needed to go." This is also being combined with a huge increase in her anxiety, so bad she started retching again. I am at a "guess what is up" phase with her right now. She feels no pain, is not uncomfortable at any level, only panic attacky. In the past, prior to the great hemorrhage of 2011, I felt like her retching attacks were a sign of anxiety. They came along when I travelled to New York, twice this summer and lingered for a few weeks. They came again when I travelled to a weekend swim meet, they were there the morning of the great hemorrhage, and they are here today. Retching, no product...hmmm...what do you think?

Once this am when I went in to check how she was, after hearing  her retch (I am liking saying this word), I asked her what was wrong and she said.." I am dying from pancreatic cancer..." oh boy...dementia sure gets in the way sometimes. I got a little fussy, a little firm in my tone trying to explain what is going on...that she has colon cancer and has denied treatment surgery so far...for the 1,000 time. See I do have a limit sometimes...I have reached it today, with the waking, the retching, and the confusion, coupled with my own hormonal swinging, I am fried from her busy scared self...I want someone else to do the talking, the figuring out how to phrase an answer to her question that she might understand...for a minute at least. When she is not stressing out about surgery, dying, and needing a new diaper, she is grunting like an ornery teenager, the ones I have read about, that don't answer questions, that give no eye contact, that are barely audible and then sulk...That's my momma right now, between retching, and calling me to fix her oxygen machine (when it is not broken), she is sulking and barely answering any of MY questions.

And then my sweet husband, somehow seeing my mom's little girl inside, reminds me...It won't do any good to talk firm, it only makes her feel bad, and she won't remember anyhow...Boy talk about falling head over heals in love more with my honey...He is my stone to lead into, the pillar who will hold me up as I want to scream...

Yes, No, Yes, No...

And so it goes. So far in the past 3 days, Gmom has said yes to surgery and no to surgery and yes again. Yesterday she woke up panicking and called me to her room to ask, "Did I have my surgery?" It is all so confusing to her and while we all believe surgery is the right choice, she doesn't. Not really. I tried last night to break down what it was about surgery that she didn't want. She told me she thinks she is too old to have such a big operation. And you know what, I kind of agree. Her age, 80.5 years young does increase her risk of complications. She is appearing more content in letting things be and what happens happens. It's hard to know the fate of this choice, just like it is hard to know the fate of her having a successful colon resection surgery. Bottom line for her, home is comfy and safe and in THIS moment right now that is where she wants to be.

Another Conversation

"Good morning mama, are you ready to get up?"
"No"
"Why?"
"I don't want to go back to the hospital"
"Um...I was wondering if you wanted to get up for breakfast?"
"Oh, yes..."
 Another conversation

Helping to find answers

Every morning I am greeted with big questions from Gmom. Usually it is related to something she is very afraid of. Today's question:

"Do I have to go back to the hospital?"

Remember, we are working to help her decide to have major colon surgery, so I paused, and this is what I said:

"Yes, you will have to go back to the hospital, either sooner if you decide to have surgery or later when your colon blocks and you have emergency surgery."

I liked how I came up with a yes, you do answer. Often I find myself answering to give her comfort in the moment. I could answer, "No, not today" or "not unless you decide on surgery", but is that the truth? No! The truth is, in her condition, she will wind up hospitalized or dead eventually if she doesn't have a surgery or she will walk into the hospital and say, "I am ready, fix this gut of mine".

Dementia makes conversations swirly and what is said in the moment doesn't always stick, so later today I suspect I will be answering her again when she asks,

"Do I have to go to the Hospital again?"

Going to KICK Cancer's Butt...

Today we had the "here is the deal" appointment with the surgeons. Yes, the mass in the colon is cancer. To treat it, we recommend surgery. Yes, gmom is at a higher risk than the average Jane, being 80, and obese, and having an aortic stint, but...she is strong enough to recommend surgery...and to remove the cancer is to stop it from taking over her. Now add dementia...a little tantrum in the doctor's office, a little forgetting where we are and why we are here...and it really is a challenge to figure out...What does this woman really want to do with her body that has an 8cm mass of cancer hanging out in her colon, which is near blocking the darn exit of waste.

My sister and I both participated in the appointment with gmom and it was very helpful to have her there, to be the extra hands maneuvering the chair, to ask the straight out questions, like "what do you recommend, what's your opinion on the risk of surgery vs. not." We were given many different options, some to deal with the possibilities of a blocked colon that do not address the cancer and the big one, take it out, see what the beastly large intestine looks like, and figure out on the spot how to rehook up all the plumbing so that what goes in does come out. Not a pretty picture. It might be several inches, it might be THE ENTIRE COLON...we won't know until we get in there. OK then, let's do this cancer removal project...We just need to make sure Gmom wants this. It looks like she is ready to fight it, she doesn't seem done yet, if you know what I mean... She's got spunk, and humor and a twinkle in her eye, when she's not worrying about cancer and surgery...

For me as I help her become comfortable in her shoes about what she wants, I am saying...Gmom is going to kick cancer's butt...she's going to open up her belly, have the mass removed, get some new plumbing hook ups and so be it...Cancer will not take this lady down...She might take a little time to rebound from such a big surgery, but rebound she will...cancer, and maybe colon free!

Today...Is Going to be a Long Day

Up at 5am to help in the lu, again at 5:45. Up again at 6:45 to help with her air, up again at 7am in the lu. 8 am in the lu, then while surfing the net and sipping my coffee called again for channel changing and 10 minutes later for air help. Just got called again. So...It's 8:20 am and I have visited her room down stairs 8 times. I am going to just keep smiling, just keep breathing, just keep helping, and run the stairs and call it my daily exercise.

Finally Showered...

Well, the week just flew by. Doc appt. Tuesday, Echo cardiogram Friday, PT Wednesday and Thursday. Overall I feel Gmom is strong. She's alert, she's worried, she's more herself than the early part of the week. Being with limited mobility and being weak makes the simple things we all take for granted, moving over in bed, getting up from a chair, stepping into a shower, challenging and scary. Falling is a reality, though she has not once even come close to a fall here. She was admitted to the hospital 36 hours after Tim and I returned from a much needed weekend in Seattle. I had her shower before we left on Dec. 2nd. Sunday she was finally home from the hospital. It was over a week since her last bathing. Monday, weak, Tuesday weak, and prior to the hospital, she could stand for the five or so minutes it took to get her soaped and rinsed. I decided I wanted a shower chair just in case and with all the doctor appointments, I did not get to Woodland until Friday...and by Friday I was feeling maybe she could handle the shower. I did get her hair washed at the kitchen sink. My joke...her BO had BO...if you know what I mean. We did do some bed side washing, but there is nothing like running warm water and a sudsy scrub to clean a body...

Hurray...I just finished her shower. It's Saturday morning, she's been up twice already, and it just seemed right to give it a go. I did not have the chair in with us, she said she was strong enough. Since her hair was washed yesterday, we only took about three minutes to get her clean. We only had one panic attack, and I mean we as I reacted to her panic, and one change up of how we usually do these things, but I am happy to say. GMOM IS A CLEAN BEAN...

Also today, I arranged for Riley to go to a swim meet with a neighbor. That's hard on me, as I really enjoy being at the meets and this is a team run meet which requires all parents to work. I will get to go later, after my sister arrives. She lives a bit over an hour away, and also has family and work...it's not easy really for anyone, but I will feel OK about leaving for a few hours once she is here. With Gmom needing extra hands in the bathroom, I no longer feel comfortable having Tim or the teens take on the full care of her, right now. She is getting better and actually took care of things this am all by her self, but the last thing I want is for anyone to feel they have to do things they are not comfortable with, like wiping your Mother-in-Laws booty...enough said.

I have enjoyed making crafts and working on things with Tessa and being more home than out volunteering does have some perks. Yesterday I made a wreath and tomorrow I plan to work with some thrift store sweaters and make new stockings, seven of them, for the family. Seven, yes, we also have David stay with us over the Holiday's. David is Tim's younger brother, a wonderful, 46 year old man with Downs and possibly early signs of Alzheimer's'...so the sign at my entrance...the one secret Santa just gave me...sums it all up.

"Welcome to the Nut House" with smiling cute acorn nuts!

Home and Decisions and Dementia

Well, after 5 days in the hospital, 2 colonoscopies, 2 x-rays and a whole lot of oxygen, my mom came home on Sunday evening. She was exuberant, loving all the Christmas lights we passed, hugged everyone at home,and sat with the tree for awhile. She also ate, sat by the fire for a bit and was more lively than she has been in months.Our new friend, Mr. Oxygen was at the house, along with several travel companions, we call George. This is new, mom needs oxygen now. She was desating...also known as not having enough oxygen in her body to function well at the hospital.

Night one was tough, she was grateful to be home, but very unsteady on her feet, weak. In the am when I got her up she was messy. That's also new. I watched how the techs at the hospital cleaned her up, so I was comfortable, had the right tools, and kept things light. She did wake several times through the night, but hey, she just got home.

She was not there mentally Monday morning, talking with her eyes closed, grunting, that kind of thing. She was out of it. Seemed drugged. I took it as a need for sleep and kept things really simple for her, though I did get her up several times to walk around the house.

Tuesday she woke up and was messy again...OK...so cleaned her up, reminded her to CALL me when she needed to go...and we started our day. Again she was out of it, so I called the doc and we made an afternoon appt. By the time the appt. came I could tell she was coming out of the fog. Her eyes were opening, she was thinking, mostly worrying, but thinking and being present. She checked out fine at the appt. Me and George, though had some trouble negotiating the wheelchair, tank driving. See my mom she has some mass, weighted in well over 250lbs this last time. I tried to find the humor in it all, me trying to turn, George heading the other way, ramming my mom's feet into walls...Pathetic...

Wednesday mom is herself, though she did wake up messy...oh well. She ate, she laughed, she worried, she asked lots of questions...Now dementia is weird. Sometimes she remembers everything, but right now, the stress of this all, when I went in to wake her Wed. am, she looked all scared and said "Is the ambulance here?" I was like "Why?" and she said..." To take me to my surgery" Um..."no, you do not have any surgery planned" Later on that day she asked, when do I go in for surgery, and promptly said, I am not having surgery.

So backing up a little, mom was diagnosed with colon cancer. She has an 8 cm mass near blocking her colon plus 2 other masses. Surgery is recommended, but mom aslo is having trouble with her oxygen, she has a stint in her aorta, and surgery just may kill her. We do not know. This is real, and big and scary and all options SUCK...End of rant.

Physical therapy came yesterday and is coming again today. I am having OT, and a social worker come. I am taking my mom to a appt. Friday and another one in 2 weeks. That si all I know right now. And I am trying to help gmom see, today is beautiful, today is here, today you are breathing and eating and noticing how cute the cat is. Today you will have an appt. with PT. That is all. We can not know what tomorrow brings, we don't know if she will hemorrhage again, or have her colon blocked. What we do know is it's raining, she's comfortable, taking a nap after having breakfast.

My life is shifting into mom care for my mom and I am going to have to remember that I also have a house full of teens and a wonderful husband. I will be looking into caretakers now. Mom will be diciding what she wants to do about this cancer. She was saying the other day..."boy this dementia sure gets in the way of undersatnding everything everyone is telling me" Now that is one smart lady.

Gmom is going in for surgery

Just a quick update...on Monday night Dec. 6th my mom had a lot of intestinal bleeding. After consulting with the advice nurse we made an appointment for Tuesday am. At that appt. we were kinda rushed over to ER where they quickly got her on an IV and took 8 vials of blood for testing. ER was a 10 hour peaceful ordeal ending with her being admitted to the hospital.

Wednesday was just a hang out and wait day...until the evening when it was decided she needed a colonoscopy and the prep began....Oh joy...My mom can guzzle...she powered down her gallon of juice in 30 minutes and well then things got going...I am really glad I was there as she was unable to get herself from bed to pot and needed help. My help got her there in a minimal amount of mess.

Thursday she had her procedure and they found cancer, 2 spots so far and a very diseased colon, full of diverticulitis. They were only able to move about 3/4 through the colon and so...she was scheduled for another colon prep and scope.

Prep last night was the same. She guzzled, this time sitting on the pot...Somewhere along the line her monitors showed her heart was being irregular, so they, meaning all the staff, rushed in, freaked her out, got her to the bed, and gave her an EKG. More blood taken, more problems finding a good vein...But once in bed she went from freaked to calm, and sad, and worried, but mostly comfortable. She finally was ok with the stuff just filling her diaper, after all she had nothing in her, what was coming out looked just like it went in...

She will have her 2nd colonoscopy this morning...And then we get to find out the plan for surgery. This might not be pretty folks, when a colon is removed, a baggy gets added on the outside...And I know she is going to feel so defeated from this. I actually think in the long term, for someone who has trouble wiping back there anyhow, this just might make things easier for her. It may be different. Will know later today.

Take away the limits and the cravings do change! Unschooling Gramma

Hi,

I originally set this blog up to document our homeschooling life and the changes that came with my mom moving in. It started out being all about my mom, her daily life and what we were experiencing. Getting back to the plan, I want to write today about some changes I have noticed with my mom regarding food.

Gramma, Marie, My mom, Gmom...She lives with us now, has been here since October, and we all have a very nice routine in place. Gramma loves to eat, eats for happiness, eats for sadness. She eats. She loves food. She loves rich foods, sweet foods, hearty foods, tasty foods, fresh foods....Most all foods, except peppermint:-)

She especially loves chocolate. Since the day she moved in, whenever I asked, what do you want from the store, she says, bring chocolate. And so we have. We have had chocolate in the house, good quality dark chocolate, low end holiday chocolate, chocolate milk, hot chocolate. If it is chocolate, we have been keeping it in the house. And we have been giving my mom some at each meal. Nothing too huge, just a piece or two with her breakfast, a piece or 2 after dinner. We make cakes and share them with her. We buy ice cream and give her some....5 months later, she says, enough chocolate, I just really like those fiber bars....Those are just as good as any chocolate I eat. So lets not get anymore candy, ok.

Well then Easter came, and more chocolate. She's still liking chocolate candy, if you put some on her plate she'll eat it. But, in general, Gramma will be happily satisfied with a chocolate chip fiber bar, thank you very much she says.

Wow, February is almost over

February 27th. One more day until March starts and I have zero posts for Feb. When I started writing this blog I had big intentions to make a summary of everyday, as a living diary of our life now that Gramma lives with us. Life, a new job, theater, playing with my kids, shopping trips,and sharing the computer all contribute to my lack of writing, as does my own motivation to actually make a post.

Update. Gramma has been more confused in some ways, less interested in anything other than her meals most days, but what I see is if I make chooses for her, she will go along. I find I am flowing between what my mom needs, what my kids need, each one unique, what I need, what the house needs...And since Gramma is comfortable, it can be easy to keep things simple and not work so hard to entertain her. She hasn't wanted to watch the Olympics with us, nor American Idol, even though Ellen D is a judge. She has asked to watch Good Morning America though. I try to connect with her over food, always asking her for advice how to cook. I recently steamed her some brussel sprouts, having her walk me through the entire process, from cutting the stems, to stemming, to testing if they are done. Tessa continues to keep connected to Gramma, and Ashley is making an effort too. Riley is pleasant at best and walks away when he has trouble coping. I keep talking with him and so far, he is really showing maturity with his tolerance.

Visits from my sister and her kids followed with my mom crying a lot. Somehow she feels when ever someone gives her attention, it's because they know she is dying. She is so very afraid of dying, that she will stay under her covers and hide from life as to not die. I have been light with her and continue to point out how she is living....She enjoys in the moment when she has conversations with her family and friends, but she also has more emotions following the conversations. Lots of hugs, lots of I love you, and so glad we all share this house help her move through the moments. Awhile back she got very sad about her son Mike, who passed away several years ago. We sat and cried and talked about him and what was interesting is it was near his B-day that the sadness came about.

She does remember day to day stuff, sporadically and I think she has more memory than she chooses to use. When asked very specific questions, like who did you taxes, she tells me all about them. When asked if she snacked in the middle of the night, she says, I don't know. When I ask how she liked the midnight snack, she says, I had a fiber bar and a banana, so...she knows, she wants to please, she doesn't ever want to feel she is bugging anyone, she wants to be loved, experience love and stay cozy and warm.

Yesterday we went to Thomas' new shop and it started to pour down rain. We had fun, Gramma had to walk pretty far, and when we were through she lept into the car with so much agility, she looked like a little kid. It was fun to see her out in a rain storm, you could see it was stressing her out, walking was challenging, she wanted to get to the car and out of the rain. We had an umbrella for her to keep her new Do all dry. Fun.

Is the blog broken? An update

No, the blog is not broken, I just keep finding other blogs to read and forget to write on my own. I can say that things have shifted from the new to the more this is our life now. Some of the days are more fluid than others. My mom has shown a whole lot more emotion both joy and frustration, which I think is very good, but at the same time it can be a bit scary too? I went away for my first weekend, leaving Tim and Tessa in charge. From their perspective things went great. My mom spent a lot of time crying yesterday, though, so I'm not sure she enjoyed me being gone. She then wanted to go out and about and that is what we did. I took her to run errands, took her to buy makeup, took her to Target for the first time. She opted to sit at the entrance and not walk in very far, but she went in and talked to someone and had a nice time. She easily gets up and out here, on days she wants too. On other days, she just wants to stay tucked in bed. I let her decide, which sometimes makes her mad because she wants to be told what to do. For those who know me, I don't tell people what to do:-)

We all will be taking a ski vacation on Sunday through Tuesday. I have a friend who is available to be here for my mom, though my mom doesn't know her very well. I am sure it's going to be a bit hard for Gramma and part of me is uncomfortable leaving her, but I need to trust she will be fine, even if she is a bit sad, and we need to carry on as a family and enjoy our life, like going skiing together.

Gramma has been getting into various snacks when we are not available and they are not the most nutritious ones. She made herself a bread butter and sugar sandwich yesterday. She ate the sugar cookies we had left out. We are now putting the butter up at night, just to make sure she is supervised when she uses it. Part of me is glad she is comfortable enough in the house to make her own things in the kitchen and part of me wants to be there to see what she is getting into, because her food cravings are sweet, sweets, and sweeter.

Riley and Tim find some of my mom's habits hard to tolerate and I am making sure to keep the line of communication open. I don't want anyone to feel they are suffering in our living situation and I want to help figure out solutions to problems that come up. Right now my mom is having a struggle showering, as she hates to take one. So on days when it is shower day, I am staying in the bathroom with her and will begin helping her clean herself. She doesn't like this at all. I invested in a hand held shower handle and will install that. She just hates the shower so much she goes in and gets out before she really cleans herself.

She does seem a bit more confused and yet at the same time, more centered. Dementia is weird, unpredictable, and fluid. I'm planning to reach out to the community for some resources on understanding a bit more about caring for an older person with memory issues. I want to make sure she has all the available support as we navigate this phase of her life.

First Feelings of being overwhelmed

I have a cold, and I don't feel great lately and have been very tired at the end of the day and not wanting to actually interact with my family at times. In general, we all support each other when we have these fleeting moments of needing our own personal space. But, with Gramma, everyone in the house always gets me when she comes out for a bit and a bite.

Well, those were last weeks feelings and have vanished, though I was able to chat with all family members about my need for help at times and I think we have a new balance.

Now on to now. Gramma has been a bit ill lately. She caught the cold that I had and was in bed for about 3 days feeling terrible. She didn't eat anything from Monday evening until Thursday morning, when she woke up and asked what's for breakfast. We had a dozy of a day on Thursday, she has lots of toileting issues. I changed lots of sheets, made sure she was comfortable, put the hospital pads on, and made sure she showered and I helped wash her. She sometimes gets sad feeling so dependant, but I try to keep it light and remind her she is loved and we all need help at times. She hasn't been out since she got the cold and yesterday her back hurt. I made her meals and served them in her room, which she liked a lot. Today we will work on getting back to our regular routine, as I help her get up and showered, then dressed and ready to eat a meal at the table.

I have had fun connecting with Gramma over things she likes. We put on the Ellen show now every day at 4 and Tessa and I often sit with my mom and laugh along with Ellen. Yesterday Gramma asked to watch the playoff football game and I'll put the games on for her today. She also likes Ugly Betty, so I'm going to start getting her some netflix season's of that and see if it is on anytime here. Over all Gramma is staying in her room, resting mostly, eating a little, and needing some assistant to maintain her daily hygiene and overall quality of life. She would never shower if she had her way!

Gramma with Thomas, a weekly adventure

Here's a nice New Years Eve picture with Gramma and my good friend Thomas, who is an awesome stylist and very kind soul. He takes great care of my mama each week, gets her chatting and telling stories. He washes then sets her hair, something she has enjoyed as long as I have known my mom. She feels so good after a Thomas date and we always follow up our hair appointment with a soup and hot cocoa at Nugget Market. It makes for a good reason to get up and walk, we walk from the car to the shop, then back to the store and then to the car again. For my mama, walking about 100 feet is her limit, then a break, then we walk again. Our little hair, lunch, car fits perfectly in with her ability to get to each place. I'm looking forward to her joining a dynabands group this week at the senior center. She's finally ready to do more out and about activities.

A memorable day

Wow. That pretty much describes today. Gramma woke up crying this am, said she missed her husband and had a hard time sleeping last night. I don't wonder why, she wouldn't get up yesterday. So....We made a plan to make sure she was up and active. At 9 am I got her up for breakfast, which she had with just me. We chatted, things were normal as normal goes, then off to her room she went, asking to be woken up within an hour. I went in to see her and opened her window up for natural light and started to unpack some of her belonging. Tessa joined me and before long Ashley joined too and all 4 of us were laughing, remembering, having a great time. We must have spent an hour together with Gramma telling us all about where she acquired the item we were looking at. It was a total history of where my mom has travelled in the last 20 years. She rested then for a bit, I took Ashley out to her lessons. At 2 pm, Gramma came out again for lunch, we chatted, she was/is very clear today, asking very deep questions, wondering about who she is , why she is here, etc. She called me in later to ask about where my dad was buried, she remembered the area, we talked about the area and the headstone and things. We talked about Mike, my brother. And then Gramma came out, looking for Ashley wanting Ashley to look something up on the Internet. She wanted to know about DEMENTIA. And she wanted to know about Alzheimer's, so Ashley read to her. Oh, the various things she talked about amazes me. She being so here today, alert, alive. She asked to learn how to be transported around town by herself, not sure I'll let her go that far yet. She wants to go and meet people. She said yes to bingo and to the exercise class at the senior center,things she has said no to. Oh boy this is different. Ashley asked if she thought she would be as clear tomorrow or back to just wanting to be in bed. Who knows.We found a worry stone today and she likes that bronze piece of stone, mentioning just how great it works for her. I'm thinking more worry rocks!

The biggest thing she said is, "I can't just sit her all day in bed watching TV. I need to be out doing things!!" Yes, gramma is homeschooling with us, coming to her own ideas of what is best for her. Trusting that even with dementia, she knows what she needs.

Later tonight at dinner she was asking to be reminded about the twin towers, she wanted to know the state of our country and safety about terrorism. She was remembering, asking, questioning...living. Great to experience her so alert and interested in interacting. Tomorrow we go buy her a new TV, something she asked for and is looking forward to, plus she asked for new lipstick. Davis, Marie Gehlen is now Here!