Spills, Chills and What is the Plan?

It’s easy to see the difference between Alzheimer’s, which is a form of dementia, and Mom’s version of dementia.  Daddy had early onset Alzheimer’s and he forgot how to walk after being given a normal dose of sedative for a man his size.  He and Mom have never taken medication so it hit him hard and it was three days before he was awake and aware.  He forgot a lot in that time and some skills, like swallowing, we were able to restore, but the walking was gone.

When Mom broke her arm, she forgot how to cut the quilt blocks that she had been cutting for years.  She went through a time then when she was losing skills.  Now she has just a few basic skills left – eating, walking and knowing when she has to use the bathroom.  Learning new skills is definitely gone.  Introducing a wheelchair now requires learning something new.  It’s just not happening…

Although the aides encourage her to stay in her chair, Mom will still get up and walk.  Last week, she fell again and hit her head this time.  She ended up with a rug burn over one eyebrow that has scabbed over.  As usual, she was chatty as the nurse checked her over and came away with just the wound on her eyebrow and a bruise on her elbow.

It's small but the scab on her eyebrow is definitely there.

My sister was able to check on Mom right after her fall so I went up the next day and ran into some more fun!  I was greeted with a hug by one of the other residents when I walked in the door and shortly after arriving, I had to take care of Mom in the bathroom.  She has been dealing with diarrhea for a few years now so I thought nothing of that until later when they told me she had refused her lunch the day before but had eaten well that morning.  A few minutes later Mom had to head to the bathroom again and while I was taking care of her, the resident who had initially greeted me vomited in the living room.  Evidently a bug was making its way around the home – and I was sitting in the middle of it!

Falls and bugs are inevitable in any assisted living facility or nursing home.  Having raised a daughter with epilepsy, I know only too well that I can’t stop falls from happening.  There’s no stopping bugs either.  Someone comes to visit or someone comes in to work without knowing they are carrying a bug.  Next thing you know, one of the residents becomes ill – and so it starts.

While I’ve been checking on Mom and following the transition to hospice, I’ve also been checking into the possibility of getting another job.  I keep thinking I need to make some money so I can help with Mom’s bill but every time I think I have a something lined up, there is a new development. 

I worked all summer but then Tina left and I was faced with the transition to a new aide for Mom.  At the same time, Hurricane was struggling with his transition to kindergarten and needed me to perform some Grandma duties.

I was looking at a new job and Mom was suddenly put on hospice and another transition began and is ongoing.  I considered another and then another and each time an issue of some kind popped up. 

I’ve always trusted that God would guide me if I just listen for his plan.  I’m trying very hard to listen now and figure out if I’m supposed to work or take care of my family.  I do hope it all comes clear soon.  Meanwhile, I’ll take care of my husband, watch over Mom and keep Hurricane out of trouble!

The saga of the wheelchair and hospice continues…

As you can imagine, Mom did not understand that she needed to stay in the wheelchair even after I told her it was hers and it would be better for her feet to be elevated.  A couple other things happened along the way too.

In my last update, I mentioned that my husband adjusted the leg supports of the wheelchair.  They went up and down and he had adjusted them for the length of her leg.  It was great!  That didn’t last long…

At my next visit, the chair was in Mom’s room and the legs supports had been removed.  Mom was sitting in the living room in her normal chair with her feet propped up on her stool.  Evidently communication was not what it should have been among the various shifts and the word had not been spread that Mom should be in her wheelchair as much as possible per the doctor’s orders.

In addition, when I went to get the chair and put the leg supports back on, someone had over extended them and they would no longer adjust up and down.  Back to the drawing board!

Tina, Mom’s former caregiver, happened to be there to visit and we spent a long time talking about the recent diagnosis and the issues with the wheelchair.  The director happened to stop back and Tina, the director and I spent some time talking about next steps.

So, I brought the issue to the attention of all the right people and they sent it up the flagpole to supposedly the right hospice people but two more visits and the leg supports were not fixed and Mom was not yet spending enough time in the wheelchair.  This time the director sent word up the flagpole herself and a new wheelchair arrived that day.

There was still the issue of communication among the shifts.  Mom was being handled differently by the various caregivers and I soon found that her normal caregiver, Melissa, was getting mixed messages.  On my next visit, Mom was not in the chair and could barely stand.  I got the wheelchair, installed the leg supports (that had again been removed) and with the help of the hospice aide, got Mom set up in it properly.  When I took Mom into lunch, I asked if she could stay in the chair to eat and Melissa was sooo happy!  She had really been concerned about Mom’s difficulty transferring from chair to chair and wanted to keep her in the wheelchair but wasn’t sure it was okay.

You may wonder why I would want to keep her in the wheelchair if she wants to walk.  My friend, an RN, explained that in Mom’s condition, the goal is to keep her in the wheelchair enough that she forgets walking.  I was already concerned that at Mom’s age, dealing with cancer and dementia, the last thing we need is to add the complication of a broken bone.  We’ve been lucky so far but we can’t guarantee that Mom will continue to bounce.

Have I solved the issues?  No.  Melissa told me that she puts the wheelchair in front of Mom and sometimes Mom accepts it because she knows she is in pain.  Other times, Melissa turns to find Mom walking down the hall.

The lesson in all of Mom’s time at the assisted living facility is that the caregivers there will follow the path of least resistance.  It’s important to be involved and keep a close eye on your loved one in any facility.

When she first arrived, it was bathing.  They would suggest but wouldn’t ensure that it happened.  I had to step in and do the bathing myself before they took it seriously and made it through Mom’s objections to her acceptance.  There were more bumps with a change of caregiver but again I stepped in and it smoothed out.  Mom has experienced another change with hospice.  A hospice aide now comes in to bathe her and although Mom has complained, Arlene has gently moved her through the process each time and eventually Mom will complain less.

There have been other things Mom has railed at but they were less important.  You have to pick your battles.  Who will win the wheelchair battle?  Only time will tell…

Mom holds the baby as Arlene dries her hair after her shower.

Nice and clean!  Mom felt the baby's toes and said she was nice and warm in her blanket.

 

Wheelchairs and Dementia Oh My!

Mom keeps my life interesting!  J  Yesterday evening I received a call from the home.  The nurse, Mary, said that she found Mom sitting on the floor in the doorway to her apartment.  Actually, she saw legs on the floor and immediately thought, “That’s not good!”  Mom was sitting on the floor with her legs out in front of her.  She didn’t remember falling but you have to wonder how she got there.  As I’ve said before, it’s a good thing Mom bounces when she falls…

My husband and I visited today and found that hospice delivered a wheelchair and a commode.  Mom was sleeping in the living room rocking chair she sees as her own.

Although I know what hospice does, I wasn’t sure how the transition to hospice worked within the ALF.  While I left my husband with Mom, I took a walk out to see the nurse to ask.  Mary was on duty again and very helpful.  Initially, she explained, Mom would be encouraged to use the wheelchair.  They really would like her in it with her feet up but they don’t want to upset her.

I thought it might help if I encouraged Mom and Mary said it would be very helpful.  Thank goodness my husband was there!  He put the leg supports on for me and adjusted them for Mom once I got her in the chair.

With Mom on her new mobile throne, we spent the next hour taking her for a ride around the facility.  She liked it and especially her chauffer.  Steve’s a good driver!  J

Steve chauffeured her in 2010 and she enjoyed it again today.

During our walk, we stopped by to see Mary so I could ensure we had the wheelchair leg supports set properly.  While there, Mom’s caregiver this afternoon, Megan, told me that they had been trying to encourage Mom to use the chair but she would refuse and start walking.  They followed her with the wheelchair and she would finally sit down in it when she couldn’t walk any more.  She would then tell Megan, “Oh that feels so good!”  Unfortunately, she would soon forget, stand up and try to walk away from it.  It speaks to their concern for her but it’s really comical to envision them following Mom with the chair hoping she will sit!

I spent some time explaining to Mom that it was her new chair and that we really wanted her to keep her feet up.  She was so cute.  She looked at me and said, “I’ll have to learn that.”  That’s the problem with dementia and Alzheimer’s.  At a moment in time, they can say yes, but just a moment later it has left their mind.  They literally live in the moment.

I know how much Mom needs to use the wheelchair.  She has fallen twice in the last few days because her feet literally cannot hold her up.  She is dragging one leg so badly that the sole of her fairly new slipper already has a hole in it.  I have had to lift her from her chair, her bed, the toilet.  I can get her to her feet and she can stand but her steps are difficult, more difficult than ever.

As we were leaving, Mom had forgotten and was trying to figure out how to stand up.  I explained again that it was her new chair and why she needed it and Megan took over to keep her occupied.  I checked in after dinner and Mary said that Mom was still in the chair and doing fine.  I know there will be ups and downs but I pray God will watch over her as she “learns” this new habit.

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