Category Archives: Resources

An Unexpected Call

We still have a home phone but like many other people both smartphones and Bluetooth are conveniences I just can’t imagine living without any longer.  Not a day, probably not an hour, goes by that I don’t use my phone to take a call, answer a text, add to my grocery list, search for directions, check email, find an address, update my calendar or, during baseball season, to follow my Washington Nationals.  So, while my phone may be used for many things my actual cell number is provided only to people who need it so I try to answer each call as it rings even if it is not a recognized name that shows up on my caller ID.

I was driving with two dear friends on our way to dinner the other night when our casual talk and Christmas music was interfered with an incoming call.   I paused briefly not recognizing the number, threw etiquette out of the window and with a flick of my thumb on the steering wheel I answered the call with a cheery hello.  I was not prepared to hear the response, “Hello Sandy, this is Annette, a Hospice social worker from Mary Washington Hospital, are you able to talk?”  I calmly said no, I will call you back in the morning, and we cordially ended the call, but my mind started wandering.  I drove several miles before I said that was unexpected and tried (somewhat ineffectively) to put it out of my mind until the next day.

Papa during my visit yesterday, “Look at this Christmas card with my Great-granddaughters.”

I have only had limited experience with hospice or palliative care but know another friend whose father is currently near the end of his days.  Thinking about them I called Annette back at 8:00 the next morning, but even with a night of thinking about the odd call regarding Hospice care it didn’t make much sense to me. Papa does not have a terminal disease, why would they be calling me.  Papa is in a wonderful environment with caring and compassionate staff looking after his every need, what could a Hospice program do for him?  I was wrong, it makes perfect sense, but even after the call I really didn’t understand the importance until I had checked in on Papa later that morning and then compared it to Doug’s visit today.  I am happy to report Papa was bright and alert for my visit yesterday morning!

My first misconception was thinking that once a person is referred to Hospice they have days or weeks or possibly up to six months to live.  Hospice is for the end of a person’s life, and as much as I don’t want to think about it Papa truly is nearing his end of his life. Palliative care is to help improve the quality of care for patient and their family for the time they do have left, even though there is not a number attached to Papa’s time.

Secondly I did not consider Papa’s memory loss or debilitating neuropathy as a terminal prognosis, but in actuality his weight loss and malnutrition are.   The nurses and staff at Greenfield caringly help to feed Papa but that does not mean his body is absorbing the nutrients as it should be.  Papa’s body is starting to fail him just as his mind is not always working in the present time.  Sadly, Papa’s memory was not as sharp today while Doug visited and he had a hard time recalling people and places, even to the point of asking when they brought all of the tables into the dining room he has eaten every meal in for the past year.

Papa is not living in a traditional home environment any longer, how do we fit in the Hospice picture?  The misunderstanding that Hospice is solely for patients and their primary caregivers based in their home is also wrong.  Hospice concentrates on the comfort of a person and their family, not the cure of a disease, but this care can happen anywhere.

It is a blessing to know Papa will have another team of people looking out for his best interests.  Sadly, many people do not receive hospice care until the final days or weeks of their life and miss out on helpful support and quality time with their loved ones. I am thankful that others care about Papa let us know that perhaps the time for is now.  Hospice is a community, another resource we can all use to assure that Papa is happy and comfortable on both his good times or more troubled periods for all of the days, months or even years he has left.

This video was taken during Doug’s visit today.

 

 

 

 

Fitbit

Walking is great for people with memory loss to help improve cognitive functions.  Several of the neurologists we have seen have advised us to work on getting Papa started on a light exercise and walking program to help slow his memory decline.  In addition to his various puzzles and other thought activities, they have explained that walking or other forms of physical exercise will help to improve brain health by increasing the blood flow and transporting more oxygen to the brain.  Consistent exercise should help form new neuron connections and hopefully slow the brain from any further atrophy.  Although Papa talks as if it were a short time ago, it has been over twenty years since he would walk for hours on the streets of Sun City as he tried to stay fit.  Since that time he now shuffles as he walks; his steps are shorter, his pace is slower, and his balance is not what it used to be.  This type of gait change is very common in people suffering from memory loss, and some studies even suggest this is one of the first noticeable changes for a person developing dementia.

Recently Papa said he wants to get back into it, and reminding him of the travel and outdoor activities he will be doing this summer visiting relatives is a wonderful incentive for him to get started.   Now that the spring has arrived and the snow has melted (sort of) we are taking regular walks together each afternoon in addition to his short jaunts to the corner as he waits for us to arrive home each afternoon.  During these outings we make sure he has a clear path and warn him in advance of steps or large cracks in the sidewalk, or anything else he could possibly trip over.  I conveniently switch from his left to his right as we walk after noticing that even a large slope in the sidewalk can cause him to veer towards that side.  Each time we walk around the block we hear the same comments: This is quite a hill, I am already winded.   Don’t worry Papa; it is all downhill from here!  That house has a lot of toys they must have a bunch of kids.  Yes, he is an Army Chaplain and his family will be getting ready to move this summer.  What kind of tree is that?  That is a Magnolia tree, wait until you see it flower, it is beautiful.   That house is taller than the rest; I would not want to walk up those front stairs.  Me either!!

I wanted Papa to be able to help set his own goals and monitor his fitness progress, so we purchased a Fitbit for him.  This activity tracker is small enough to fit into his pocket and will keep track of how many steps he takes on a given day.  While it actually monitors more than that, we have turned off the other features on his device to keep it simple.  I can show him his online status to see if he is meeting his goals, but he also able to monitor his own progress and   frequently pulls his Fitbit out of his pocket to check his count.  Papa definitely wants to make sure he is getting credit for each step that he takes!  What we need to work on however is for him to realize it is ok to exceed his set goal.  The challenge for Papa seems to be to try and hit his daily step count exactly and not waste any extra steps after his target number has been reached.  Other than getting a mental workout trying to count how many steps he will need at the end of the day before he puts on his relaxing clothes, there is no prize to hit the goal number exactly.

Each walk does not need to be an excursion out of Papa’s comfort zone; we have measured the mileage around our block and local area so Papa has a sense of distance.  We have conveniently driven to the bank with him and walked home to increase his walks and continue to familiarize him with our neighborhood.  Last week on a sunny day he managed to walk both directions to the bank and back for a total of two miles with a brief stop for a Slurpee on the way home.  Success!  Fortunately there is a bench on the route so Doug and Papa could relax for a few moments.   I am not in a hurry, why would I want to drink and walk at the same time? I never heard of anyone doing that before.  So they sat and watched the cars drive by as he finished his drink.  Leave it to Papa, he has also found, and used, the one port-a-potty on their one-mile route home.   I worry what we will do once that has been removed….  Papa was very proud of himself for walking to the bank and back, but did mention he is not in a hurry to do that every time he has to cash a check.

End note:  Please let me know if you have a Fitbit and want to friend Papa to see his progress.

Everything in Moderation

Most people have daily routines, and Papa is no different.  After waking up and getting dressed and ready for the day he typically eats breakfast and gets ready for his morning TV.  Most mornings he eats at home but then takes a quick drive to a local restaurant for a cup of coffee.  Papa is still looking for a group to socialize with in the mornings and this past week he expanded his search for a hangout to try Burger King, although he emphatically states their coffee is not nearly as good as McDonalds.  We love how determined he is and next week he mentioned he feels comfortable enough to try a few new local places.  Depending on his timing in the morning he makes his bed before or after the first Walker show. Papa is very predictable and sticks to his routines.

I surprised Papa Friday and came home from work before lunch to spend the afternoon with him and his first comment was I don’t know why my neck hurts but I couldn’t make my bed.  I asked what happened and assured him that an occasionally unmade bed is no big deal then I suggested an anti-inflammatory and pulled out the heating pad.  Doug gave him a quick massage to see if he could work out the kinks, and he spent the rest of the evening relaxing in his easy chair and pondering over what had caused it.  I wonder why this happened, I had a still neck once before but that was when I was working on a car engine.  I don’t do that type of mechanical work anymore.  During the evenings many conversations my mind kept wandering to wonder if he really only had a stiff neck one other time or if he only remembers it happening one other time.  I was envious I can’t count the number of times I have strained my neck.

This morning at breakfast I asked him how his neck was feeling and he said much better.  The heating pad and medicine helped me but I think Doug cured it with a rubdown. Doug felt like Mickey, Rocky’s trainer, and was glad he could help.  Then it occurred to us!  Papa spent countless hours last week working jigsaw puzzles like he was training for an Olympic competition.  Leaning over the table looking for specific pieces to put together probably caused his stiff neck.  We all laughed and mentioned that he is going to have to slowly build up his puzzle workouts, and a walk around the block every so often might help to cross-train.

Jigsaw puzzles are great for a variety or reasons, but especially someone whose memory skills are declining.  Not only are they a great social outlet for us to sit facing one another and talk without having a TV on, but also they are a mental workout.  A puzzle builds concentration and uses your mind using spatial reasoning to find a piece that would fit due to color shape or size, dexterity putting the pieces together and logic knowing why a piece will or will not work in a specific place.   Looking for the same pieces each time we are sitting at the table helps to build Papa’s short-term memory skills, and the feeling of accomplishment watching the picture come together is a great boost of self-esteem.  I loved hearing Papa’s excitement as he said Got it! or I knew I could find that piece! or Almost there!  I am so proud of Papa and look forward to building many more puzzles with him.

Papa’s first puzzle was a picture of different types of ice cream, and when it was completed on Wednesday, Doug picked up an ice cream treat for us to celebrate.  Thursday while Papa and I were out on our weekly “dinner night” he asked to stop and get a frame for the completed puzzle and he also picked up a new puzzle to start working on. He really enjoyed watching the puzzle come together and the feeling of success once it was finished.  While we pieced or puzzled or jig-sawed (or whatever true puzzlers call it) together Papa would tell me how he and Nana had worked puzzles while they were stationed in France over fifty years ago.  He was very happy to be reintroduced to an old hobby, especially one that reminded him of Nana.

The new puzzle was out of the box minutes after arriving home and while we were beginning to put together the border, Papa started asking questions.  I wonder how they make puzzles?  I wonder what the biggest/hardest/______(fill in the blank) puzzle is?  These pieces are all the same shape and are pretty tiny.  Thankful for YouTube we looked up how puzzles are made for the next 45 minutes.  We never realized the different cuts of puzzles, and we will spend a bit more time being selective before we pick out our next puzzle.  We both decided random pieces are more interesting than a strip or grid pattern, and really worked his memory to find a specific shape.  But until we go puzzle shopping again, we will be working on a panoramic view of Times Square and we will have to keep reminding Papa will have to remember that we are not in competition, he will have to complete his puzzles in moderation, just like we eat ice cream.

Papa's First Puzzle!  SUCCESS!!
Papa’s First Puzzle! SUCCESS!!

Tonight at dinner Papa glanced over to the other end of the table with our puzzle laid out and asked, I wonder how a puzzle is made?  Maybe in the next few weeks we’ll work on teaching him how to use a computer so he can get to YouTube….

Reference:  Cobble Hill makes a variety of puzzles with beautiful artwork, and we look at them again for our next purchase.  The family puzzle is a random cut with three different sizes of pieces and was the perfect size for Papa at this time, but they have wide assortment of sizes ranging from 35 pieces to 2000.

Shoes

January 1st is seemed like the perfect day to begin Papa’s new walking program.  He had not left Nana’s side during the months she was ill and really needed some fresh air and exercise.  It was the first day of the year, a warm and beautiful sunny Arizona day, and by an unfortunate miscommunication we had been committed to having lunch at two separate places that afternoon.  A walk around the block would really feel good for all of us.  During our first walk I realized Papa’s shoes were quite worn and he was shuffling his feet so a new pair of shoes was probably in order.  He really needed more than just new shoes, but they happened to be the top thing on my newly created shopping list.

Papa’s needs are small.  We had a quick discussion before we left the house and all he requested for his walking shoes were plain white, Velcro, and cost $25.00 or less.  Always up for a challenge I figured I would break his needs down one at a time.

Color – Plain while shoes without any added color.  That was easy; all of the shoe stores we looked at had several pair of plain white walking shoes.  We were off to a great start!

Style – Velcro.  I was worried about this as we were driving to the mall, I wasn’t even sure they still used Velcro fasteners any longer on shoes.  After some looking we were able to find at least one pair of white Velcro shoes at each of the stores we went into. Wonderful!

Cost – I knew this would be a bit of an issue and was working out ways to break the news to Papa that we just would not be able to find quality shoes for the price he thought they should be.  I explained that it probably has been a while since he bought new shoes, and inflation has hit everywhere.  Surely once he put on that new pair of comfortable shoes he would realize you cannot put a price on that.  I had him somewhat convinced.

Once we knew exactly what we were looking for we started talking to sales people, and asked them for a selected shoe in his size, 10.5 wide.  Nothing fit.  As he was trying to squeeze his foot into the shoes we picked out store employees were beginning to look as us as if we were requesting a cobbler to hand make his shoes.   We went to store after store and everyone provided the same advice to us, “go to the New Balance Store”.  So we did.

Size – I learned something very important that day; Papa had not bought a properly fitting pair of shoes in such a long time that he did not know his shoe size.  His foot was measured and the New Balance rep went to the back of the store and came out carrying one box.  He must have flipped a soundtrack switch while he was in the back room because it was as if Leonard Cohen’s Hallelujah started playing softly in the background.  Smiling, the New Balance Rep slipped a shoe of the box and onto Papa’s foot.  Papa grinned, put the other shoe on and asked if they would dispose of his old shoes.  He proudly walked out of the store wearing his new 11.5 4E, white, Velcro walking shoes and did not mention the cost.

End note:  We have since been shopping for dress shoes.  Papa’s memory is not great, but when he gave me his requirements for what he was looking for he said black, slip on and size 11.5 4E, cost was no longer a factor.