Things are calming down again…

Several weeks ago, the unthinkable happened!  Tina left to take a job with the County Sheriff’s office.  I dreaded the adjustment period while they find a new team to work with the residents, especially since I’m working full time and can’t get up there more than once a week.  I figured Mom’s “I can do it myself” would come out to play again.

The first week I arrived and Mom had not been bathed.  I was concerned that she had caused a problem but after investigating, I learned that the days were mixed up and someone else was bathed rather than Mom.  I was promised that she would be bathed the next day.  I knew there would be hiccups with the change but I was hopeful.

I arrived for my visit on the second week and again, Mom had not been bathed.  A young man was cleaning her room – and doing an excellent job of it!  I asked if there had been a problem with her bath.  Yep, she refused!  I guess nobody thought through the impact of assigning a young man, however nice he might be, to take care of an ambulatory 97 year old woman…  Although I did tell them if my daddy had been there instead of Mom, I would have been happy to have that young man caring for him.

I quickly requested that Mom be cared for by females only and they promised she would be bathed that day or worst case, the next morning.  In the midst of a very busy weekend, I knew I wouldn’t be able to make it up there again so I asked my sister and nieces if they could help check up on Mom to ensure she was bathed.  Love to them all for visiting and making sure it happened!

Third visit since the upheaval was this morning.  I’m very happy to say that Mom was bathed and eating a snack when Hurricane, my very soon to be five year old grandson, and I walked in.  Everyone was in the living room enjoying a game led by one of the aides.  It was so nice to see everyone calm and content – and all happy to see a little one in their midst.  He was shy but that didn’t seem to bother anyone and Mom was so happy to see him!

He did well and wasn’t too rambunctious but by the end of the visit, I could easily tell we had worn Mom out.

 

Will there be more hiccups?  I’m sure there will be but the good news is that they are trying.  The combination of Melissa and Stephanie today was wonderful and I immediately sent a message to let the powers that be know.  I can only hope that they stick with them or another combination of two people that works as well.

To cath or not to cath…

My recent visits with Mom have been fun and Mom, for the most part, just continues to be her happy little self.

Now that I’m working, I generally visit Mom on the weekend.  Weeknights just aren’t conducive to visits because of the distance, working around dinner, etc.  At the beginning of June, however, we were out of town for the weekend so I didn’t get to visit.

One day the following week I received a call, during my work day, from Mom’s facility.  Mom’s hemorrhoids continue to bleed here and there and that day she had refused lunch, saying that she had some pain and she was indicating her lower abdomen.  Tina alerted the nurse and they called me saying that maybe Mom was holding urine and needed to be catheterized.  There seemed to be some concern that Mom’s organs were beginning to fail and hospice was even suggested.

It was already late afternoon and they had to arrange for a home health nurse to do the cath so I told them I would be there after work to be with Mom during the procedure.

On the hour+ drive up there (rush hour traffic) I was thinking, again, that Mom may be near the end.  I know it would be a blessing all the way around, but I know at the last minute I’ll be looking at my brothers or my husband wanting them to “fix it”, just like I did when Daddy passed.

I arrived at the home thinking Mom was going to look weak and uncomfortable.  Instead, I find her sitting in a chair in the living room watching TV and thrilled to see me.  She had obviously eaten dinner because, on close inspection, I could see some crumbs from her dessert.  The aide confirmed that Mom had eaten well.  Of course she did, she refused lunch!  J

The home health nurse arrived, chatted with us, took Mom’s vitals – which were wonderful as usual – and was ready to prepare Mom for the cath.  Mom said she had to use the bathroom first and did so with no problems.  The usual blood was there (kind of like a head wound, a little blood can look like a lot) but no pain, no complaints.  The nurse used the opportunity to help clean Mom up after and examine her at the same time.  Nothing to worry about and we both agreed that the last thing we wanted to do was bother Mom with an unnecessary cath!

Mom may be old and very tired at times but these little episodes don’t stop her.  A week after my evening trip up there, Tina came back into the living area and found that the wooden bassinet and the three baby dolls that sleep in it had disappeared.  After searching several rooms, she finally opened Mom’s door.  Yep, Mom had somehow wheeled that bassinet out of the living area, down the hall, and into her room without anyone noticing.  She was happily taking care of the babies!

Today my husband and I both went up for a visit.  Mom was so happy to see us but seemed to be more in the “visit” mode.  She had a wonderful smile but didn’t reach out for a kiss and hug so I knew that she didn’t know who we were, just that she knew us.  That's not to say she turned down the hugs and kisses we gave!

Mom talked and laughed for an entire hour.  She makes you laugh even though you have no idea what she’s saying just because she looks likes she having so much fun.

 

At one point in the conversation, she told us that, “Jeannie’s gone away.”  She stumbled a bit over Jeannie but got it out and finished the sentence.  I told her I was Jeannie but she said, “the other Jeannie”.  It may not sound like it would be funny to me, but it was.  I was happy that Mom knew the name even if she couldn’t connect it to me this visit.

So, is the end near?  Only God knows for sure!  We’ll just love her while she’s here – even if she doesn’t know who we are.  J

She's sleeping more now...

It's becoming the norm now for Mom to be sleeping or feeling tired when I visit.  She's happy, just tired.  She's bleeding on a regular basis now but has no pain.  It may seem wrong to let it go on but I'm following Mom's lead.

Years ago she made the decision to not force Daddy to eat.  She felt she needed to trust his instincts, in spite of the Alzheimer's.

It's a difficult decision but I know that bringing in a doctor to try and fix the problem would be upsetting to Mom.  At 97, should I make her go through that?  I think not.  She wouldn't want it.  She's content to enjoy her surroundings and sleep when she wants.

So now, as long as Mom is happy and in no pain, I'm content to sit with her while she sleeps.

Three weeks is too long…

I remember vividly my weekly visits to Mom and Dad’s back when my babies were little.  When my first was born, I was living in an upstairs apartment with just four rooms, including the kitchen.  I took my daughter to Mom and Dad’s weekly to do my laundry.  By the time my second was born, we were living in a townhouse and had a washer and dryer but I still went to Mom and Dad’s once a week.  Daddy was retired by then.

That changed when my second daughter was just four months old and we moved across the country to Montana.  For two years I lived on a weekly letter from Mom and Dad.  I wrote to them and they wrote to me – I still have the letters.  Phone calls were costly and saved for special holidays.

When we moved back, I got a job and saw Mom and Dad daily because they were my wonderful and free babysitters.  I think my girls thought their grandpa hung the moon!  As I’ve mentioned before, they watched as Daddy sunk further and further into Alzheimer’s.

Fast forward a bit and my visits slowed down to maybe once a month while Mom was living with my brother.  I was living 45 miles away, working full time and raising four kids active in school programs so we visited when we could.

Then my life changed again when I started my adventure with Mom in 2010.  Suddenly I was with her 24x7 and although her mind wasn’t what it used to be, I enjoyed my time with her.

Fast forward again – because I’ve told the story of the time here – and we come to the last month.  A month ago I went back to work.  Between work, two long planned weekends away and a robbery at our house, I didn’t see Mom for three weeks.  It was just a few years ago that I was only visiting about once a month but now three weeks was just too long.

I’ve always been considered the “emotional” one in our family.  Into the third week with no visit and dealing with the aftermath of the robbery, I broke down crying because I hadn’t been to see her.  Then when the weekend came and I finally did see her, I had to hold back tears when I was giving her a big hello hug.

The good thing – although I felt badly, Mom didn’t realize I was gone.  When I visited again this weekend, she was very tired because of some physical issues she had this week but she was smiling, talking and happy.  I had to laugh when she was so tired that her eyes closed but she kept talking.

So again, I’m so happy that Tina is there to take care of her!  Mom is happy and content and I may miss her but at least I don’t worry about her.

 

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!