How does she know?

The time has come for me to go back to work.  My husband and I are really not near retirement and it's difficult these days to manage on one income.  We managed initially with help from my previous employer and Mom, but for the last year and a half we've been managing on our own.  As our budget slowly sank and it became obvious Mom will outlive us all - :-)  - we figured it was time for a change again.

I was delayed for awhile by knee surgery and jury duty but I finally was able to start a job search.  As things began to heat up, I started changing my visit schedule hoping Mom wouldn't notice since it had been a bit weird after my knee surgery.  I also thought that she was settled enough and forgetting enough that my being there or not wouldn't matter.

So how is it that when I get a job, she ends every visit with, "You'll be back this evening won't you?". She hasn't done that since last year!  Telling her I have a meeting doesn't placate her either.  She actually gets a little pout going when I tell her I'll be back but not for a bit.  How does she know!!

I have to be realistic even though she pulls at my heartstrings.  I began my new job yesterday at Disabled American Veterans (WWW.DAV.org) and I love it!  It makes me feel close to Daddy because he served in WWII as did his two brothers.  I also have a big brother who served in Vietnam and another in Korea at the same time.  I'm sad to say that on my very first day working, we were shocked by the bombings in Boston.  The victims were not military but you can't help thinking what our service men and women go through.  I'm glad I can help them in some small way in my job.

I'm glad that I can count on Tina to take care of Mom while I'm working.  She spent some time with her at Mom's 97th birthday party.

Decline and the End Game…

I’ve talked about it before – how decline can be achingly rapid or achingly slow.  But, like rust, it never sleeps.  It keeps trudging along, snagging more and more of Mom’s mind and ultimately impacting her body.

Over the last few months there has been a definite turn toward the end game.  She fought the pneumonia last fall and it was the beginning of the decline.  She has no symptoms now but x-rays show a small spot still sitting in one lung.

We kept the medications for the pneumonia to a minimum but they still caused issues with her digestive system and hemorrhoids.  It took another few weeks to get the hemorrhoids under control but it was just getting there when she was hit with the bout of diarrhea after Christmas.  The whole lot was enough to cause damage to her skin which has required treatment with medicated creams.

The next stage was going from continent to incontinent – although sporadically.  As I’ve said before, a person with dementia is like a toddler in reverse.  Mom was lucky enough to be continent to the age of 96, almost 97.  Like a toddler, she knows when she needs to use the bathroom, she just may not be able to control everything the way she did before.  The good thing about dementia is she doesn’t realize it is an issue and has no problem allowing us (Tina or I) to help her.

There are also the other changes happening as Mom’s dementia progresses.  Just before the pneumonia was diagnosed last fall, Mom stopped wearing her glasses.  She said they made her face hurt.  She was still able to read words on the daily news sheet or on my t-shirts and, since she doesn’t always remember what a word means, it wasn’t a problem.  Lately, she has worn them a few times but not consistently.

Early last week she took another step.  She has an upper plate of teeth and when handed a sucker one day, she took her teeth out.  She refused to put them back in and for the better part of the last two weeks she has been without teeth.  This past Monday I arrived and she had both glasses on and teeth in.  Today she refused both and told Tina she didn’t know what to do with them.

Mom’s face is showing signs of the decline also.  Yes, she’s old and wrinkled – she’s soon to be 97 after all!  But the skin around her eyes has been darkening for months now and today I noticed the skin above her temples is beginning to darken while the rest of her face looked pale.  There is also just a touch of blood settling in her hands also.

 

Finally, Mom has moved more solidly into the “who are you” phase.  She doesn’t recognize me as hers and more frequently now she doesn’t understand if I try to tell her who I am or that I’m her daughter.  Luckily, I’m not bothered by it.  Daddy gave us good practice at accepting that.

I’m not saying the end is imminent but I can see Mom steadily making her way toward the end of the game.  And Tina, who has lovingly watched over many making that last journey, also says Mom is declining.  How long?  Only God knows that!

Just can't keep her down...

I know I've been very quiet lately. Needs have changed since Mom is so happy at the ALF and her day to day has settled into a lovely routine. Thankfully her contentment has gotten us through the last couple of months.

Last fall, Mom's new doctor suggested giving her a daily dose of vitamin D. I thought nothing of it at the time and agreed to allow it. It was a bit of a joke that our 96 year old mom didn't need any medications, only a vitamin.

I guess that was the wrong decision. Although I'm sure the vitamin didn't cause the problems that followed, it obviously didn't help because we saw no change for the good.

Very soon after starting the vitamin, Mom developed a mild case of pneumonia. She had quite a heavy cough and congestion and an x-ray showed a small spot of pneumonia in one lung. Given that she got up each day, took part in activities and ate every meal, her symptoms weren't any worse than what she had experienced in the past so we decided to stick with an antihistamine and some Mucinex. The combination worked well and the pneumonia settled down.

Another issue cropped up next.  Possibly because of the meds and/or vitamin, Mom's hemorrhoids started bleeding badly.  That continued for awhile but settled down, interestingly enough, after the meds and vitamin were stopped.

Mom was so happy to see everyone at Christmas!

Christmas rolled around and our family got together at my brother's and Mom was thrilled. Shortly after Christmas, she received her present - a bout of diarrhea. Again, Mom didn't seem to notice, never complaining and going about her days as usual. It made extra work for Tina but as always, she was wonderful with Mom.

I did get in on a bit of the fun but unfortunately my visits were limited during the last few months due to a knee problem and an unexpected surgery on the same. I'm thankful every day that Tina is taking care of Mom so I don't have to worry but I'll be glad when I can get back to my normal visits.

Another little tidbit to think about if you have a loved one in an ALF that charges based on services needed - after a few weeks of the vitamin D, I received a call from the Health and Wellness director at the ALF. She was concerned about the bill because the addition of the one pill - Mom's only daily medication - they had to charge a medicine charge of $16 a day. Not for the pill, that's billed by pharmacy company. The charge is for the nurse keeping track of it and providing it daily. Having seen absolutely no change in Mom while she took it - other than the pneumonia - we decided to drop it.

You would never know she's been sick!

Traditions are changing…

Family traditions of getting together have changed over the years as beloved relatives have grown older, their circumstances have changed or they have passed on.  Each change happened of necessity but each one left me with a feeling of loss until new traditions were formed. 

I remember when I was little there would always be a picnic at GE Park with my grandma and grandpa, uncles, aunts and cousins on Daddy’s side.  In October we would drive down to Kentucky to visit with my mom’s birth family for my grandpa’s birthday, and for Thanksgiving, we would drive north to Darke County to watch the Macy’s parade and have a wonderful meal at my great aunt and uncle’s farm.

On Christmas day we would always open our presents, go to church and head to my grandma and grandpa’s (Daddy’s side) for a meal.  It was fun, all of us in their small, cozy home.  We would all sit at tables arranged in an L from the dining room into the living room.  I can still remember Grandma’s roast duck, the red hots that were always in a jar on the floor model radio and chocolate stars in the copper candy dish on the buffet.  A few of us cousins enjoyed playing a game with the city map that my grandpa had hung on the wall at the landing of the steps in the basement.

As time passed, our summer picnics ended – I think because Grandpa retired.  My Kentucky grandpa passed so we no longer had a yearly gathering in Kentucky and our trips to Darke County ended when my great uncle, a wonderful teddy bear of a man, passed on my birthday one year and my great aunt’s health problems started soon after.

New traditions emerged even as my brothers and sister married and moved into their own homes.  Mom and Daddy took over Thanksgiving and we moved the meal to the Sunday before so that my siblings could go to their in-laws on the holiday.

The Christmas meal changed when my grandma and grandpa moved into a retirement home but as we had our own homes and children, we continued to gather at Mom and Daddy’s for sharing of presents – all from Santa except for those items Mom handmade for each of us.  Daddy was always the one to pass out the presents and did it in the most rapid fire manner that the presents were open in a short period of time.  Maybe because of all those years we needed to get to church?  J  Whatever the reason, it warms my heart to think of the fun and laughter we shared!

Traditions changed again when Daddy’s Alzheimer’s put him in the nursing home.  Mom moved out of our farm home and in with my brother’s family 26 years ago.  I took over Thanksgiving for our family of 24, holding it in our three bedroom townhouse.  Thank goodness it was nice weather because they had to fill their plates and walk out the back door to eat on the patio!

Christmas was held at my brother’s house in the basement apartment that was built for Mom and my brother took over passing out the presents in the same manner Daddy had always done. 

Other new traditions were born also.  My middle brother and his wife began hosting the family for a celebration of Mom’s birthday in April and a 4^th of July pool party.

For 25 years we have gathered as a family four times a year as our number has grown from 24 to 78!

Now traditions are changing again, and again, I feel sad, but I also know it’s time.  This year we moved Mom’s birthday party to her ALF.  We didn’t have as many family members present but those of us that were able to make it enjoyed it and Mom was all smiles.

I also made the decision to let go of the Thanksgiving tradition.  Our home was truly bursting at the seams as we hosted up to 65 of our family members each year and I realized it was time to allow my siblings to begin their own family traditions. 

So this year, I invited everyone to Mom’s ALF for the Thanksgiving meal that they prepare for the families.  Not everyone could make it, of course, but we had over 20 of us there to eat with Mom.  The home made a wonderful meal!

Two very long tables were set aside for Mom's family.  I think she had more than anyone else at the home!

While I missed having everyone at my house this year, it warmed my heart to hear the fun the others looked forward to and had with their own families.  And after cooking for 60+ all these years, I nearly forgot to get the potatoes cooking for my own family!  J
The Christmas tradition continues at this point and I am very thankful that my brother still wants to host our huge family.  Unless something changes, Mom will be there amidst all those folks that are on this earth because of her.  I love her and each and every one of them and crazy as it may seem, I am thankful every day for Facebook because it gives me a way to keep up with all of them wherever they may be.

Vitamin D Deficiency? Banking on those genes...

I received a call the other day from a doctor - Mom's new doctor.  I was surprised!  He actually wanted to chat a minute about Mom.  Wow!

He had just seen Mom for the first time and wanted to ask about the incident of swollen ankles he had seen in the files.  I explained that they swell when she doesn't move around enough which typically happens if she doesn't feel quite up to snuff and she just sits in her chair.  One ankle is always more swollen due to a long ago sprain.  The swelling doesn't hurt however and if we get her up and moving, the swelling goes down.  For a 96 year old, I think that's pretty good and so did he.  He commented that she looked great and had good genes.  My typical reply to that is, "I'm banking on those genes" although interestingly enough my grandma died very young when Mom was just two months old and my grandpa and Mom's siblings all died in their early 80s.  Mom obviously pulled the long straw.

He invited me to stop by and see him if I'm there during his normal visit and we ended the conversation.

A few days later I received a call from the home.  Seems the doctor had ordered blood work during his visit and the results had come back.  You would think that at 96 there might be a few numbers that just didn't hit the mark.  In Mom's case, just one.  Her vitamin D level was very low.  Given the heat this summer it was difficult to get the residents out in the sun as much as usual and Mom doesn't drink a lot of milk either so it wouldn't contribute enough to compensate.  I wasn't surprised by the deficiency.

The fix - a vitamin pill.  The only pill that Mom needs at the age of 96.  Like I said, I'm banking on those genes!

Their time and ours – or – “I have a meeting…”

It’s not easy making the decision to place a loved one but sometimes it is for the best.  In the case of taking care of a parent, I think we feel that they took care of us therefore we should take care of them.

To a certain point, I believe that to be true.  I also realize now that when Mom was raising me, however, she was able to continue her life and it was a busy one!  Sewing our clothes and quilts, knitting and crocheting our sweaters, hats and mittens, taking care of a vegetable garden that took up an acre of land and canning or freezing everything that came out of it took up her days.  In addition, of course, she was taking care of all of us, especially me, the baby of the family of five children.

One memory of my childhood comes back each time I kiss Mom goodbye now.  I most always visit in the morning and stay until she sits down to each lunch.  She always wants to know if I am staying and is obviously looking for a place for me to sit.  My response is always the same.  “I have a meeting”, I say, knowing that response will put her at ease.  I don’t have a meeting but it is something with which she can identify.

Mom begins her process of preparing her place setting for lunch.  For some reason, she uses her napkin as a placemat.

Daddy was a teacher and Mom was a homemaker all the while I was growing up.  I remember the school nights after dinner when we would all be in the library of our home, Daddy grading papers and my brothers and sisters doing homework.  Busy during the day, Mom used that time to read, something she loved to do and hence, the reason we had a “library” in our home.

Some nights, however, Mom and Daddy would leave after dinner to go to a meeting.  They were involved in church, Daddy’s school, and the local school my brothers and sister attended.  There were also 4-H meetings because they were both leaders, separately – Daddy of a livestock club and Mom of a sewing club – and Daddy was one of the founders of the local baseball league given that he had three sons to keep busy.

So, out they would go, telling me that they had a meeting to go to.  It was sometimes frustrating to me because in my mind, I was the center of their world.  Why would they leave me?  J  One particular night, they told me I could stay up until they came back home but they didn’t tell my brother whom they left in charge.  When I refused to go to bed, I very clearly remember him picking me up and carrying me upstairs to my bed.  He was gentle and kind about the entire thing and kept telling me that Mom and Daddy didn’t tell him that.  Needless to say, I was not happy with them when they arrived home!

Lucky for me, Mom is not a child.  She may need help at times like a child and she can’t find the words she wants but there are some things that still strike a chord in her mind.  Meetings is one of those things and if a little lie like telling her that I have a meeting will put her at ease, then I can do that!

It’s so interesting…

I saw a story on the news this morning about a man with dementia, living in a nursing home, who, although unable to communicate, seemed to be comforting one of the other residents.  The gentleman’s son finally realized that his father, a medic in WWII, was comforting another resident who had been the cook for his unit in WWII.  Seems the cook was injured during the war and the medic took care of him.  Somehow his demented mind recognized the long ago friend!

You just never know what might trigger something in the mind of someone with dementia.  Recently, one of the aides (CNAs) in Mom’s ALF decided to move to Florida and go to school.  This CNA, Whitney, was an integral part of the staff so the decision caused quite a stir.

One day when I was visiting, Mom told me that she would be leaving for Florida soon because “they” wanted to try it out down there for awhile.  Grandma and Grandpa moved to Florida with her when she was little to try and make a life there.  They found they didn’t like it so they moved back.  I thought that she was just flashing back to that time of her life so didn’t think anything of it.  I just asked if she was going with Grandma and Grandpa and she looked a little confused and responded, “I guess so.”

It wasn’t until later that I learned about Whitney’s move and, of course, there had been some discussion of it.  Mom obviously overheard and thought that “they”, probably Tina, Whitney and Mom, were heading to Florida to “try it out”.

Since then, Whitney left and the residents have been enduring the process of finding the new CNA that will fit into the “family” there.  In the past, if Mom’s CNA, Tina, was off, quite often Whitney was working and took care of Mom.  Now if Tina is not there, there is no Whitney to cover and I have found reasons to be concerned about Mom’s care.

I have raised my concerns with management and they have asked for patience while they work out the staffing plan.  I can only hope that they will find a solution that will again make me feel that the Mom is well cared for when Tina is not there.

The good news is Mom is still happy.  I find her confused more often but in spite of that she still seems content.

Mom's awake and ready to play noodle ball!