Friday, November 29, 2013

Picking Bones

After dinner yesterday, Lyn offered to pick the turkey carcass clean of meat.  She's done this for years and it makes her feel like she's got an important job.  It is a very useful job and I'm happy to let her do it.

Mom got her set up at the table so she could comfortably pick the bones and then watched for a few minutes to make sure it was going well.  Very quickly, Mom realized she needed to sit across from Lyn, using the excuse that she needed to finish her wine.  For the first time, Lyn needed direction to place what she had pulled off the bone into the correct pile.  There was one platter for the meat and one for the fat, skin and bones.  Lyn struggled to figure out which was the correct pile.

At one point, Lyn asked Mom "This piece is stuck.  Can I just bite it off?"  Mom encouraged her to use the knife that was on the platter.

I appreciate that.

Thursday, November 28, 2013

Thanksgiving 2013

Today, we will share a small feast.  We are going to watch the Macy's parade, work on a puzzle and play a game or two.  It will be a quiet day with no addional guests.  I am looking forward to it because Lyn offered to help me remove the meat from the turkey carcass after the meal.  I fully intend to put her to work.

We hope you have a good day filled with food and fun.  May you have friends and family helping make the day a success.  May your day be a happy one.

We thank you for reading and joining us in this journey.

Wednesday, November 27, 2013

Learning Each Day

Each day, we learn something new about my sister.  On Sunday, she liked hot chocolate.  On Tuesday, she did not.  On Sunday, she liked ketchup.  On Tuesday she did not.  She does not like almonds unless she sees you eating one.  

There are a few things we are not having to learn.  She still likes spaghetti and does not like posole.  To keep from guessing and getting it wrong, we just ask her.  When we ask, we are prepared for whatever answer she offers up.  If she says "No.  Hot chocolate does not agree with me." We just move on as if the statement has always been true and is not just true this moment.

With tomorrow being Thanksgiving, I am sure she will reject some of the day's offerings.  That is fine.  She will not go hungry.  She says she likes turkey but does not like dressing at all.  She does not like potatoes au gratin but does like scalloped potatoes which also have cheese.

Yes, they are the same.

Tuesday, November 26, 2013

Setting No Expectations

The leader of the Alzheimer's support group that Mom attends has spoken about not setting expectations when interacting with an Alzheimer's patient.  If we do, we set ourselves up for disappointment.  For example, during the later stages of Alzheimer's we hurt ourselves if we go in wondering or hoping if today our name will be remembered because it was last week or yesterday.  The name may not be there when we have an expectation of it being present leading to our disappointment or pain.

A friend wrote to me before Mom and Lyn arrived with similar advice.  She wrote "...remember that no amount of planning will make everything go smooth. But, do remember that even if you burn the turkey because you have a moment with Lyn or your Mom and forget it is cooking, (or if) you make a perfect bird but someone spills the wine causing a meltdown, or if, well, the human psyche just shuts off creating an odd sense of strained silence . . . roll with it. It is worth it in the end."

She points out that the perfection of the meal or the idealized vision of my family gathering is not the important bit.  Instead, it is important to be in the moment, this moment, the here and now and right this minute moment because we won't get a redo.  It is important just that we are here.  The food is there to keep our bodies going.  Our minds and our hearts are nourished by the interactions we foster with each other.

With the prescient advice of both of these ladies in mind, we're setting no expectations for Lyn any longer.  Each day is different with her.  Each day is another opportunity to take a picture, make her laugh or try to keep her engaged with the world around her.  Some days, like Sunday, she meets it with flying colors.  Some days she's going to struggle.  Some days are in-between.  Yesterday was an in-between day.  We made it until the end of dinner before the tears came and that was good enough.

Monday, November 25, 2013

Laughing at Ourselves

Mom and Lyn are here much to our delight.

Over dinner last night, one of my children expressed a wish to not have a particular life challenge.  Mom and I have both had to manage conversations like this and can take them in stride.  I considered my child for a moment before motioning towards each of us seated at the table and saying "I understand.  However, you just got the luck of the genetic draw and each one of us faces our own challenges." My child thought about what I was saying while looking at Aunt Lyn.  A look of understanding and acceptance crossed kiddo's face before the head was nodded.  I waited again and followed with "Take me for example.  I am challenged with this radiant beauty." Kiddo burst out laughing and Mom choked on her bite.  "Sometimes, it helps it you can laugh at yourself."

Lyn, in all earnestness, turned to me and said "You can laugh at yourself.  Just don't do it in a mirror. I tried it and it does not work.  No mmmmmm!"

After dinner wii bowling

She is full of wisdom and the table was ringed in laughter.

Friday, November 22, 2013

We will be waiting

A winter storm is hitting New Mexico.  The forecast indicates there is a break in the weather just in time for Mom and Lyn to fly out here.  As long as their plane can get out, they will make it.  Even if their plane is delayed, we will be here waiting for them.

Thursday, November 21, 2013

Travel Precautions

Traveling with dementia is possible.  Precautions and preparations have to be put into place to smooth the way.  Bumps along the way should be the expectation.

In preparation for this trip, we've taken the following steps to provide Lyn with the supports she needs:

  • Rented an oxygen condenser so that she has the nightly breathing supports she needs.
  • Booked airline tickets using a reservation specialist with the airline so that the airline could be alerted to Lyn's dementia.  This allowed seats to be assigned as close to the front of the plane which will ease her anxiety and facilitate getting on and off the plane.
  • Made reservations that provided direct flights between her home and mine.  The slightly higher cost is worth avoiding the confusion a layover would introduce.
  • Requested pre-boarding access so she can be seated before the confusion of the regular boarding procedures are initiated.
  • Requested the use of a wheel chair at each airport to get Lyn from door to door.  This will allow her to sit back and relax instead of feeling anxiety over which way to go to get to the gate or getting confused or fatigued on the way to a gate.
  • Secured a TSA approved carrier which will keep her meds properly chilled and handily available in Mom's carry-on.  This will allow Mom to provide Lyn with an anti-anxiety med if she needs it which we anticipate she will.
  • Packed copies of her prescriptions and medical information.  These are needed in case TSA questions the meds in the travel carrier.
  • Put a plan into place for how we will interact with Lyn when she gets to baggage claim.  This is the first point at our airport where we can engage with Mom and Lyn after they get off their plane.  My husband and elder child will stay with Mom at baggage claim to collect their bags.  I will take Lyn and my younger child straight to the car where we will wait for the rest of our party.  This way, Lyn will be in a quiet, calm environment.  If she wants to cry or close her eyes and rest her head, she can.  
  • Provided her with a medical alert bracelet.  OK, this last one was done long before this trip.  However, I wanted to include it in the list because, if for any reason something were to happen, the information on the bracelet will be immediately available and used by anyone who helps Lyn.
Most importantly, Lyn is not traveling alone.  She's with an person who is experienced with how to interact with her.

Hopefully, our planning will pay off and the travel days will be successful.

Additional information:
Traveling with Dementia - Elder Care Team

Wednesday, November 20, 2013

Sun in Her Eyes

The day this was taken may have been brisk, but the sun, in typical New Mexico fashion, was bright and in her eyes.  When she comes to VA in a couple of days, she may find she needs her sunglasses less because we tend to be a bit more overcast.

The oxygen condenser arrived yesterday.  One more thing is now in place to make her visit as easy on her as possible.  It may be a challenge for us, but we want her to feel as safe and comfortable as possible.  We expect there to be tears and emotional outbursts.  They're the name of the game right now.  We also know to not take it personally.  It is the disease talking, trying to control, interrupting and being demanding.  We can deal with that.  What's a week with an Alzheimer's patient when you've dealt with traumatized children coming into foster care?

We've got this covered!

Tuesday, November 19, 2013

Suspicious of My Cooking

Over dinner last night, Mom reminded Lyn that she could make a suggestion for what we should have for dinner the night they arrive.

Lyn asked "What does she know how to cook?"
"Just about anything we could think of."  Mom replied.

I realize it has been a while since she's seen me cook and that her Alzheimer's has probably erased what memories of my cooking she may have had.  However, I find this little exchange typical of my sister and highly amusing.  She's suspicious of my cooking and is probably recalling the days, two decades ago, when she had every reason to be suspicious.

Mom is suggesting that their first meal here be something simple.  I will do my best to comply and quietly chuckle to myself as I do so.

Monday, November 18, 2013


We are in the countdown of days until Mom and Lyn brave travel to come visit us.  Lyn is excited but getting nervous.

She's started to worry about where they will park the car.  Mom needed to go by the airport this weekend and showed Lyn where they will park.  Mom will have to repeat her plans to Lyn each day.

Lyn is also worried about when they will pack their bags.  She does not want Mom to pack her carry-on for her.  Lyn wants to pack it herself.  Mom assured Lyn that only Lyn will pack her carry-on.  Mom will respect her request.

I have received confirmation that the oxygen condenser is en route and will arrive on Tuesday.

The room where Lyn will sleep was cleaned this weekend and will be cleaned again just before they arrive. Once I give it a second cleaning, I'll close up the room to keep the cats out.  This will hopefully reduce the allergens for Lyn and make it easier for her to sleep.  I've already picked out a quilt for her to use and taken it to the dry cleaners so that it is nice and clean for her.

When I spoke with her yesterday, Lyn started trying to take control by telling us when we needed to go shopping and what we should do when they arrive in Virginia.  I quickly countered that they will have spent a couple of hours on a plane and had a busy day.  So, I suggested, that we just come to my home and get comfortable for the evening.  She didn't look pleased.  I've offered to fix anything she wants for dinner if she can think of it.  She seems to have accepted this alternate plan for the day they arrive.

We both have a busy schedule for the week before their visit.  However, we're all excited that we'll be seeing each other soon.

Thursday, November 14, 2013


Mom and Lyn recently winterized their home.  The swamp cooler has been shut down for the year and the heat turned on.  Their winter clothes were brought out and the summer clothes put away.  The weather has already turned cold though they may have a warm day here or there.  Mom is already sending me the snow accumulation reports from different locations around the state.

Mom had not yet switched out the bedding on my sister's bed when Lyn remembered it and asked for it.  While Lyn was out, Mom switched out the bedding without supervision.  Lyn started using it that night.

I am not sure how she does it, but I suspect she could sleep in a sauna with a blanket.  The oxygen condenser produces a lot of heat.  Even with that next to her, she sleeps under multiple blankets, a comforter and has her electic blanket on all night.  She also has on flannel pajamas and socks.  No, she does not sweat away the night.

When she comes to visit this month, she will be sleeping in the coolest room of the house.  However, she will have the oxygen condenser warming up the room.  We have no electric blanket, but there are a ton of blankets that we can pile on her.  If she needs wool socks, we will pass some to her.  She will make it though I expect a comment or two if she thinks we should have electric blankets.  If she does, I will tell her we don't have them because my husband and kids can barely keep a regular blanket on all night.  They woul be uncomfortable to sleep in the heat she prefers.  If I attribute it to them, she will accept that answer.

Grandma was the same way.

Wednesday, November 13, 2013

Tuesday, November 12, 2013

Steak and Chinese Food

Last week, Mom was planning to grill some steak for dinner.  When she told this to Lyn who had asked what was for dinner, Lyn quickly informed her "I'm tired of having to eat steak all the time."  They had eaten chicken for several days leading up to this moment.

Mom quickly apologized because she didn't know that Lyn was tired of steak.  She asked what Lyn wanted and Lyn initially said "I don't know."  This is her typical response these days.  However, Mom prompted her again by saying, "If you can think of it, I will fix it."  Lyn thought for a moment and suggested meatloaf.

Mom accepted the suggestion without laughing.  The last time she had made meatloaf, Lyn had told her how much she disliked meatloaf.  (She also now dislikes apple juice and chocolate milk too.)  Mom didn't remind Lyn of her dislike for meatloaf and quickly put one together.

Knowing Lyn's lack of food consistency these days as well as her susceptibility, we've decided to use the power of suggestion on her.  She's never been willing to try Chinese food and we love it.  We have asked her if she would like to get lunch from a little restaurant by my house which serves "Chicken and noodles."  She asked what was in the dish and I described the components of chicken lo mien to her.  She decided that sounded like a good option.  We told her the restaurant served Chinese food too but that she could stick with the chicken and noodles if that was what she wanted.  When asked what else they had, I described a couple of other items by their components and not their names.  Doing it this way met with her approval.

We have used this approach before with success.  I made braised ox tails the last time they were here and we just told her it was beef.  Before serving it to her, I removed the meat from the bone.  She was happy.

We'll see if it works.  If not, we've always got a Plan B in place.

Monday, November 11, 2013

Resting Stick

Several months ago, my former step-father offered to make Lyn a walking stick when he learned of her stability problems.  It was a generous offer of his time and skills.  He asked Lyn if she wanted any colors or special designs on her stick so that he could personalize it to her preferences.  He let her know that he had a couple of others scheduled ahead of hers.  She was very excited at the offer.

The work is done and she has the stick.  She has had it for some weeks now.  However, I have yet to see it.  I have asked her to show it to me.  Each time, she acts as if she doesn't hear me.  She doesn't refuse.  She just does not respond to my request and changes the topic.  I find this very amusing.

On Saturday, I called Mom while Lyn was out with her respite provider.  Currently, the only way for Mom to have an unsupervised conversation is for it to happen when Lyn is at day hab, with respite or asleep.  During the call, Mom told me that in their recent day trip up to Taos with their lovely neighbor, Mom had Lyn bring her walking stick.

When they stopped to visit a historic home in Taos, Mom reminded Lyn to bring her walking stick from the car and use it.  She pointed out that Lyn had practiced using it and could do it just like their lovely neighbor uses her cane.  "I know.  I know!"   Lyn stood there clutching the stick to her chest with both hands as though she were afraid to drop it.  With that, they started to move from the parking lot to the entrance.

Mom quickly realized that Lyn had positioned herself in the shadowing spot that lets her reach out to clasp Mom's shoulder anytime she needs additional stability.  She also realized that Lyn was not going to use the walking stick if she was keeping it clutched to her.  Mom stepped out of Lyn's reach and maintained a distance the rest of the time.  Lyn, however, continued to refuse to use it even though she was actually making herself more unstable by keeping her arms pinched in tight.

When they got back to the car, Mom asked why Lyn carried but didn't use the stick.  " I don't want to get it dirty.". Mom pointed out that it is ok for the stick to get dirty and that it will easily clean.  Lyn rejects this notion.

The stick has become a cherished possession of Lyn's.  She has decided the best place to store it is laid out on the guest bed.  For now, it is the resting stick.  We shall see if we can convince her to put it to its intended use.

Friday, November 8, 2013

Bowling Distractions

Lys's respite provider was unavailable yesterday.  Mom told Lyn that was no problem.  She would take Lyn to Special Olympics bowling.  Lyn refused to go.

When asked why, Lyn explained that she does not like bowling with one of the male bowlers.  His girlfriend shares the lane with Lyn.  He bowls in the next lane.  During the course of practice, the couple interacts with each other and end up hugging, tickling and laughing.  This is a big distraction to Lyn and makes her angry.

This has only been going on for a few month with this couple.  The girls have been bowling together for years, however.  None of the girls want to change lane partners either.  When the distraction has been raised to the coaches, the reaction is that the bowling is "just for fun" and they will not intervene.

Lyn no longer wants to deal with the boyfriend as is willing to skip bowling as a result.  She will tell this to Mom.  We don't know if she will tell this to her respite provider next Thursday.  Mom hesitates from suggesting that Lyn stop going because Lyn will stop completely.  If she stops, which we actually anticipate will happen soon, she will miss out on a stimulating activity.

Thursday, November 7, 2013

Corn and the Cob

For as long as I can remember, Mom has blanched and frozen ears of corn each Summer.  This way, there is sweet corn corn on the cob available even in the dark months of Winter.

Last week, Mom and Lyn decided they wanted some corn on the cob for dinner.  Mom cooked some up and placed an ear of corn on each of their plates.  Lyn picked hers up and took a big bite.  She got a very worried look on her face and started spitting out her mouthful.  "There is something wrong with my corn!". She was very upset.  It was fortunate that she had spit it out because she had actually bitten through the cob.  There were thick, woody chunks of cob attached to the kernels which she could not safely chew much less digest.  

Mom apologized for giving Lyn "a bad ear of corn" and quickly removed it from her plate.  The corn remaining in freezer has been passed to an uncle so that it does not go to waste.  Mom and I are concerned that Lyn no longer understand how to eat corn on the cob safely.  

Wednesday, November 6, 2013

Oxygen to Go

With Mom and Lyn planning a trip out here, we have had to figure out what to do about Lyn's need for oxygen at night.  I live close to sea level.  She lives above a mile in elevation.  The oxygen here is more dense than it is there.  However, it is not enough to compensate for her needs.

Lyn's oxygen condensor is a home model.  This means it is bigger than a bread box and not considered a travel or portable model.  It is on wheels and does not have a strap for easy carrying.  There are portable models which a person can carry with them when they need the oxygen condenser 24/7.  Lyn only needs hers when she sleeps.  Because of the size of her personal unit, it doesn't make any sense for her to have to worry about bringing it with her.  Fortunately, there are ways to rent a portable or home unit for periods of travel.

I looked around and found a couple of local companies which provide oxygen condensers and inquired into a week-long rental.  The first company said they would need to get manager approval and would call me back.  They not only didn't return my call, they didn't return my second call.  The second company never presented an opportunity to speak with someone.  I gave up after sitting on hold for nearly 45 minutes.  I wondered if their lines really were flooded people needing respiratory support or if they didn't have enough employees to answer their lines in a reasonable amount of time.

I broadened my search and looked beyond local providers.  In short order, I was able to secure a rental which will be shipped out prior to their arrival.  The representative was polite and efficient and the entire transaction took less than an hour including faxing a copy of Lyn's prescription for an oxygen condenser.  The representative even kindly asked how often Lyn travels because the rental for one week is about half the price of a new machine purchase.  I thanked him for the tip, acknowledged I was aware of the costs but pointed out that this is most likely her last trip and one-time need.

So, if you ever find yourself needing an oxygen condenser for travel, know that they can be found with a little time searching the net.

Tuesday, November 5, 2013

Names are Challenging

Names are becoming more of a challenge for Lyn.  She is working hard to get them right, but she's now starting to struggle with the names of my children.  I am not correcting her or completing the word for her because I don't want to call attention to the stumble and make her feel poorly.  However, I notice it and know it means that the damage to her brain is growing.  

When she sees my kids on the computer, she's either able to recall their names or covers with conversational tricks like "Hi sweetie!" Sometimes, she forgoes the greeting altogether and just starts with "How are you?"

When she doesn't see them, that's when she stumbles if she tries to name them individually.  Since she will repeat questions asking what they're doing, she's now stumbling over the names repeatedly.  

My kids either haven't picked up on the challenge Lyn is having with their names or they have chosen to not say anything thing.  Knowing my children, it is that they haven't noticed yet.  When they do, I'm prepared to discuss this with them.  They know Aunt Lyn has a disease of the brain and that it is making permanent changes.  They know there is no cure and that she'll die at a young age as a result.  This will just be another part of that on-going conversation.

Monday, November 4, 2013

Conversations with the Physician

Mom spoke with Lyn's physician last week.  They discussed the emotional outburst and the pending travel.

The physician was glad to hear that Mom is taking a realistic outlook when saying "When the next event occurs, we will need to " add in medication to stabilize Lyn's mood.  Mom and the physician are in agreement that not only will Lyn need a mood stabilizer soon, but that more outbursts are going to happen.  I think that Mom's interaction with the support group has been a good source of information and insight from other caregivers who have already been through the stage where Lyn is at today.

When the conversation turned to their pending trip here for Thanksgiving, Mom discussed the fact that it is going to be challenging.  Lyn will be out of her home environment and will have more stimuli than normal.  Of particular challenge will be navigating the airports.  Both my brother and Mom's lovely neighbor have urged her to arrange for Lyn to have access to a wheelchair and steward for assistance in getting from door to plane and back.  The logic is that Lyn's unstable and while the distances involved are not too great, the confusion of the people around them, the need to go up ramps, down escalators, through long halls, the train at the Virginia airport and the short time available to board or disembark have all are a factor of getting Lyn through without a melt-down.  With the wheelchair assistance, she'll be able to sit and talk (or cry if necessary) while constantly making progress toward the destination.  The physician said "Listen to them.  It is the exact thing I was going to suggest as well."  Mom has made the arrangements.

We are pretty sure this is going to be Lyn's last trip out.  We previously had ruled out such a trip but have realized that if she's still able to, even with the challenges, it is worth the effort.

Friday, November 1, 2013

Competition Again

On Sunday, Lyn had competition with Special Olympics for bowling again.  Let's let her tell you of her results.

That's a gold earned with a score of 149.  She may be increasingly unsteady, but she did a fabulous job!