You think you’re ready, but you’re not…

When I was 19 and nine months pregnant with my first child, my father-in-law (father of my first husband) died suddenly on the operating table at the age of 51.  No one was ready for that!  It was a very painful ordeal for everyone, even me although I had only known him for about a year.  My mother-in-law still had five children at home.  No one was ready…

When Daddy was traveling down that long Alzheimer’s road, I thought I was prepared for his passing.  Just before I turned 33, we were called to the home one night when it seemed Daddy wouldn’t make it through the night.  He did, and it was another month or so before we were called again.  I was handling it fine until he drew his last breath at the age of 71.  I so wanted my brothers to fix it!  They couldn’t, of course, and after spending the day with my siblings handling the needs of the time – preparing the obituary with the newspaper, helping Mom with the planning of the service, etc. – I went home and cried for four days straight.  I wrote the eulogy for the service and cried the entire time I was writing it.  To this day, 25 years later, I can start crying just because I hear a particular hymn or song.  I guess I really wasn’t ready.

Now we’ve been traveling down this long road with Mom.  There have been times when I thought the end was near and I even made the arrangements for her eventual passing, just so we wouldn’t have to come up with it at the last minute. 

Making those arrangements doesn’t really mean that you are ready though.  I talk a good talk about wanting her to be happy and comfortable – and I truly do!  When you come right down to it, even though she is 97 and even though she has dementia, I can bet I’ll be crying when the moment comes, wishing my big brothers could fix it!

Today was just another one of those times when I realize how I feel deep down, beyond reasonable thought.  I was with Mom today as a wonderful hospice doctor examined her.  Dr. T, a very kind and comforting woman, first found that Mom’s lymph nodes are enlarged, especially on the left side, and that is why her left foot is swelling.  Mom was perfectly compliant so the doctor continued the examination and found a mass inside Mom’s vagina.  It was large and it was bleeding.  Dr. T didn’t press further for more information because she didn’t want to distress Mom.  What she found was enough to put Mom on hospice care.

After the exam, I cleaned the blood off of Mom and got her dressed.  As I stood her up from the bed, I hugged her tight as I gave her time to get her feet under her and ready to move.  I took the time for hugs and kisses prior to the exam, to keep her calm during the exam and after.  Mom loves her hugs and kisses!  No time to think about what I was feeling deep down until later, when I was alone.

The good news in all this?  Mom was her usual, happy self!  As we were walking to her room to meet with the doctor, I was holding Mom up as she walked.  She pointed at her foot, which was obviously hurting, and said, “That’s what makes me know that I’m here.”  We both laughed, that, yes, it did!

The other good news?  In a moment of clarity, Mom looked at me while she was lying on her bed and said, “You’re mine, always have been and always will be.”  I was happy to say, “Yes, I am. I’m your baby and always will be.”

 

Are her walking days coming to an end? Is it time for a wheelchair? Hospice?

The path hasn’t been without bumps since I last wrote.  I left my job – my choice – and I guess it was supposed to be because Mom and now my grandson, Hurricane, obviously need me around.

Mom’s showers took a slight downhill turn when I arrived to find her clean but her hair had not been washed.  They told me she cried when she was in the shower and didn’t want to upset her further.  I guess I didn’t understand why they didn’t start with her hair?

I quickly put her in the shower and washed her hair.  She didn’t complain a bit and it was gratifying when she let me know how good it felt when I was massaging her scalp.  I thanked her when we were done and she said thank you right back.  I was able to dress her and blow dry her hair without incident and that was probably the best incentive for her caregivers to ensure they did it well next time.  No issues with bathing since!

Mom’s bleeding continues – better sometimes, worse others – and has prompted a few calls to me.  Melissa, her new caregiver, knows that as long as Mom is happy and not in pain, we’re good.  Other aides are not so sure and insist the nurse calls me to let me know.  Like Melissa, the nurse knows my mantra, but she will call me to make the aide feel better.

The bleeding has prompted another request to have a hospice evaluation.  They want Mom examined to see if the bleeding may be vaginal and if there may be cancer present.  We don’t have cancer in the family but at 97, who knows?  Maybe?  We certainly won’t treat it if it is there.

I’ve just spoken to the doctor and she’s given me a time to meet there for the examination/evaluation.  After our discussion of Mom’s history, she doesn’t think she will need to be invasive.  She doesn’t want to cause Mom undue stress and I certainly appreciate her concern.

I let her know that my bigger concern is the most recent development.  Mom has complained about pain in her feet for years – certainly prior to our trip to Australia with her in 1994.  She has also experienced edema (water retention) in her feet and ankles over the years but if she walked enough, it would subside. 

This past weekend, the aides all noticed that she was hobbling and eventually got to the point where she needed assistance to walk to the dining room.  Between meals, she planted herself in a chair and sat there happily watching what was going on or snoozing whenever her eyelids got heavy.  All the sitting just caused the swelling in her feet and ankles to get worse.

Her hobbling, the swelling, and need for assistance prompted a call of concern from the nurse.  Would I consider an x-ray to rule out a broken bone?  Certainly!  The x-ray revealed a very old fracture of a metatarsal (a long bone in her foot that she may have broken back in the 1980s), a bad case of osteoarthritis and edema.  No new injuries but all good reasons for the pain she feels when she stands and walks.

Is it time for a wheelchair?  A walker won’t do the trick because it’s not balance that is the problem.  She said years ago that she wanted a wheelchair but at that point in time, balance was the problem.  A wheelchair wasn’t necessary then but it may be now.  Pain is the problem and if I can keep Mom happy by getting her a wheelchair, I’ll do it. 

She can enjoy pet therapy while sitting!

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.