She's still walking!

I now take care of my four month old granddaughter every day and yesterday I took her to visit Mom.  Mom was so happy to see her!  She told her, "Grandma loves you!"

We arrived just as Stephanie was getting ready to bathe Mom.  Mom was in her rocking chair in the living room rather than her wheelchair so we stood her up and she walked with Stephanie back to her room.  That was quite a way but I think seeing her great granddaughter put a spring in her step.  :-)

Mom didn't complain about starting the process but once her clothes were removed, she started her normal fussing.  She was shaking her fist at Stephanie and I stepped in, telling her that she had to have a bath and it would be okay.  I started the water and got it warm to show her she would like it.  She calmed down but said she would just leave!  I fell back to a couple of our old conversations, telling her that she could leave when God's ready for her but until then Grandma (her mama) said she had to have a bath.  It doesn't always work but it did again this time!

Although not a long visit, it was a good one.  Mom didn't know names but she recognized our relationship and had lots to talk about.  I love those kind of visits!

What’s really needed as Mom turns 98?

Last weekend we had an open house at the ALF for Mom’s 98^th birthday.  She was thrilled to see everyone and definitely enjoyed her ice cream and cake!  The day was sunny and bright and although it was too chilly for her to go out in the courtyard, we were able to keep the door open and family members were able to check out the facility’s courtyard and enjoy the sunshine.

Leading up to and now after her birthday, I can’t help but wonder what is really needed for Mom.  She spends her days in her wheelchair or her favorite rocking chair holding her favorite baby doll.  She enjoys sitting where she can view the entire room and into the dining area so she can see everyone who walks in the door and what the various workers and residents are doing.  When she is awake, that is.  She snoozes a lot.

Happy day when she gets to hold a great grandchild!

She’s not able to stand for very long and can walk only short distances with help.  That, and the fact that she has forgotten all the ways to care for herself, means she has to have help with dressing, baths and toileting.  At times she even needs to be reminded how to eat.

She’s definitely where she needs to be – in an assisted living facility where they help her with all those “activities of daily living” and understand that her memories are fleeting.  Her memories come and go from moment to moment but she is happy in her “home”.

Living in a facility is very expensive whether it is a nursing home or an assisted living facility.  The decision to place a loved one requires a lot of financial planning and quite often funding from Medicaid.  Not all facilities accept Medicaid and we knew Mom’s did not when we placed her there.  We had to plan for Mom’s expenses to be paid from her income as Daddy’s surviving spouse.  We really like the facility and so does Mom so as time goes on and fees rise, it’s our job to find ways to keep her there and also watch over the expenses she is charged to make sure they are needed.

Late last year I submitted paperwork to the VA to apply for Aid and Attendance benefits for Mom.  As the spouse of a veteran who served during a war (Daddy was in WWII), she is entitled to a monthly benefit.  She received her first payment on April 1 and while it is not a large amount, it helps.

I’ve recently audited the charges from the ALF and my next step is to look into hospice costs.  When hospice was first suggested, it was because there was suspicion of a problem in her abdomen and finding the mass set the hospice wheels in motion.  It seemed at the time to be initiated for a good reason and I was told that Medicare would pay for it all.  That might be true for most but as it turns out, not for Mom.  Daddy was a teacher and she is covered under his medical as his survivor.  The only Medicare they were entitled to was Part B (physician) which doesn’t cover hospice.  The medical plan is actually the primary payer for Mom’s hospice expenses.

Here we are, seven months later and there has been no change in Mom’s condition.  It fluctuates as it always has but nothing out of the normal range.  She’s not in pain, not on any medication and they’ve put an oxygen machine in her room that she has never used.  Her vitals are always good when the hospice nurse comes once a week.  I know she has a ticking time bomb in her abdomen that could hemorrhage at any moment but does that really require more watching than she gets from the ALF nurse and aides?  My siblings and I joke that Mom will still be here to see 105!

It’s possible that the hospice expenses are less than if the same services are provided by the ALF so it may make sense to have hospice overseeing her care given her condition.  It’s something I will begin investigating this week and checking to see if Mom needs everything provided – I’m thinking the oxygen can go if nothing else.

The secret to a long life? Keep getting out of bed…

Mom’s routine has settled again with the new hospice provider.  Stephanie comes three times a week – twice to bathe her and once to check in.  Lea, her nurse, comes once a week to check on her.  The social worker stops by and so does the minister.  The minister does a little service once a month and he has Mom sit right next to him for it.  He knows about her many years of being active in her church and uses that to make a connection between them.  She seems to feel right at home sitting there by him.

Mom has also won the fight against pneumonia again.  It developed at the beginning of January when the confusion over the hospice change delayed the administration of Mucinex to help her fight what started as a head cold.  It took a few weeks but she is doing much better and the cough seems to have abated. 

While she is definitely doing better, I notice that each time she battles something it is taking a little bit more of her.  She spends a lot of time snoozing now, sometimes to the point that you think she can’t be comfortable sleeping so hard sitting up.  She wakes up and talks a little, takes care of the baby she is almost always holding, and checks on what is happening around her before nodding off again.

Mom meets her newest great grandchild.

She still eats well at her meals although she is quick to let them know if there is something on her plate that she doesn’t want.  Much like my 5 year old grandson, she refuses to touch anything else on her plate until the offending food is removed.

The wheelchair has become a regular part of her life and she spends a lot of time in it but she still walks with help when she’s feeling chipper.  She’s certainly not ambulatory like she used to be but she hasn’t decided to give up!  They keep an alarm on her (a box attaches to her chair with a cord that attaches to her clothes) to alert them at those times when she decides she wants to get up on her own.  They recently changed the type of alarm when they found her walking around one day holding the box in her hand so it wouldn’t go off.  Leave it to Mom!  

Watching the changes in Mom’s life unfold, it dawned on me recently that there is a reason Mom has lived such a long life.  Each and every morning, she gets out of bed for a new day.  It doesn’t matter if it is a good day or bad or if she is dealing with a sickness such as diarrhea or pneumonia, she gets out of bed.  I don’t remember a day in my life when she has stayed in bed for any reason.

Daddy was the same way.  He had gotten up every day of his life to greet the new day, good or bad, even when Alzheimer’s was getting the best of him.  A week before he lost his ability to walk and went into the nursing home, he ran a quarter mile and jumped three fences.  It took two more years of greeting each new day in the nursing home, unable to walk, before Alzheimer’s finally wore him down.

I’m thankful that Mom and Daddy gave us that example.  I have been retired since I left work to take care of Mom but I still get up at 6:00 am every morning, Monday through Friday, to start my day and help my husband get a good start on his.  I “sleep in” on the weekends until 7:00 am, sometimes 7:30, but I can’t sleep later because I just feel the need to get the day started.  I hope I’ve passed on that need to get started to my children...

Check out your hospice provider! Are they covered under your plan?

Mom was put on hospice in September.  At the time, her assisted living facility offered their parent company’s hospice services and I thought that sounded easy and that communication would be improved because they were under the same umbrella.  There were hiccups along the way but my job is to straighten it all out and straighten I did.  The train appeared to be running smoothly on the track.

Suddenly this week, we experienced a derailment!  On Monday, December 30, I received a call from hospice saying there was a problem with billing.  They had not been able to submit any billing for the services.  I was told that they would look into it and find a new hospice provider and it would be a seamless transition for Mom.

On Tuesday morning, December 31, I received another call stating that Mom’s insurance provider was indicating that Mom’s coverage ended that day.  Having worked at a health insurance company for 20+ years, I said that was correct and if you call tomorrow (January 1) they will also say coverage ends as of December 31 – of 2014.  She was trying to discover what hospices were participating providers for Mom’s plan.  Anticipating that, I had already looked and was able to give her the name of a hospice that was covered.

Maybe I was being naïve but in all my years of working in the health insurance field, I have never known a provider of any kind to begin treatment without checking to ensure they were a participating provider and would be paid for their services.  Evidently I just found one that doesn’t…  You would think that it would have taken less than three months for them to realize they were unable to submit a claim?

Just as I was sitting down to eat lunch that day I received a call from the new hospice provider.  The prior hospice provider’s three month oversight suddenly required an emergency on my part and the part of the new hospice provider.  I was asked to squeeze in a trip to Mom’s to sign papers prior to my commitment to my grandchildren that afternoon for New Year’s Eve.  Lovely!

The changeover was much more relaxed.  The first day with the first provider I felt like a train was running over me – not because of Mom’s diagnosis but because of the number of stressed out hospice people all there talking to me at once.  I went home exhausted that day!

This time Mom and I sat with one nurse and I signed the papers, provided Mom’s medical ID cards, and we talked about the calls I would receive over the next few days from various people who would be visiting, checking and helping Mom.

I’ve received those calls and will now need to keep a close watch to ensure things are going smoothly again.  Today the question of Mom’s coverage came up again with the new provider.  They said the insurance carrier was stating that Mom’s coverage ended on December 31, 2014.  I assured them that she was covered, checked online and called them back.  I asked what ID number they were using.

The ID number was the issue.  Although Mom’s ID number had not changed, they were still calling in to the automated system with the number given to them by the previous provider.  It was Daddy’s ID number, not Mom’s.  I know if I call the insurance provider, they have Mom’s coverage tied to Daddy because she is still covered under his plan until she passes - even though he died in 1988.  Her ID cards, that I have shared with the ALF, the first hospice and now the second, show her ID number and that is the number that has to be used for the insurance company’s automated system.  Issue resolved…

She’s still here but it was the first Christmas without her…

Wednesday was hard for me. 

We’ve been on a roller coaster leading up to Christmas.  I received a call on Tuesday evening, a week before Christmas, saying Mom had fallen again but seemed to be doing fine.  The next day, as we were enjoying the birth of our sixth grandchild earlier than planned, I received another call that Mom was complaining of pain.  The nurse had checked her out and Mom had a red spot on her knee but was able to move everything with just a wince here and there.  The nurse and I opted for a wait and see approach because so far Mom’s x-rays have always come back negative for breaks.

Just as we were getting to our daughter’s room to see our new granddaughter, we learned my father-in-law had been admitted to the same hospital on the same day for what they initially thought was gall bladder.

The next few days were busy with my husband and me going different directions.  Me to the hospital for our youngest daughter and her first child or heading home to be with our five year old Hurricane in the afternoons after kindergarten and my husband to work and the hospital to be with his dad or taking care of his mom.  Add in some other activities with our older grandchildren – a choir concert, some other running – and you get a feel for the days.  There wasn’t a way to add in a visit to Mom so I am very thankful my sister stepped and kept an eye on Mom for me.

All the while that was happening we were also getting ready for Christmas with our children and grandchildren on the Saturday before Christmas.  Santa comes early to our home so that our children can visit the other side of their families on Christmas.  I had a rough patch when it looked like our son would have to work but he rescheduled and our gathering went well although we missed our youngest because she was home recovering from the C-section.

The hospital was no longer in play after my father-in-law’s issue was identified and treated and he was able to return home on Sunday so I was finally able to get up to see Mom again.

She was moving fine with no complaints.  They were again trying to keep her in her wheelchair but she was not happy about it.  Evidently they were telling her that her daughter (this time referring to my sister) wanted her in it.  I had to keep from laughing when Mom said in a disgruntled manner, “You tell your sister…”  The rest wasn’t decipherable but I’m betting it had to do with the wheelchair.  J

Christmas Eve came and another chink was taken out of my armor when I received a call from my second daughter.  She had a seizure just as her family was getting ready to celebrate.  She managed to get a couple pictures of the tree before but missed watching her sons open their presents.  We’ve dealt with this most of her life but it doesn’t keep me from wishing I could fix it for her…

Christmas morning was bright and sunny and really cold.  My husband and I went to visit Mom prior to the usual festivities at my brother’s house where most of Mom’s children, grandchildren, great and great-great grandchildren meet for lunch.  We had planned to take Mom again this year but it was so cold.  As it was nearing time to go, I asked Melissa, Mom’s aide, her opinion.  She agreed that Mom didn’t need to go out in the cold and assured me Mom wouldn’t notice.  Another chink in my armor occurred as I made the final decision to leave Mom in the warmth of her home.  For the first time since Mom and Daddy were married, Mom was not at Christmas. 

Wheelchair… Walking… Walking… Wheelchair

I never know what I will find when I arrive at Mom’s.  Some days her wheelchair is in her room or off to the side of the living room and other days she is sitting in it.  I leave it to Melissa and the other aides to keep an eye on her and they seem to have a good handle on how she is doing.

Last week I arrived to find her sitting happily in her rocking chair in the living room, holding the baby.  After a nice visit, I walked her all the way to her chair in the dining room.  As usual, it took her a minute to stand and get her legs under her and it was slow walking, but she did it happily and like it was the normal thing to do.

 

On Saturday, we joined her for the home’s Thanksgiving dinner.  I arrived just before noon to find her in her wheelchair and Melissa had dolled her up and fixed her hair.  She looked so cute and very happy to see everyone!  She ate every bit of her meal and half of her pumpkin pie before she was full.  It wasn’t long however, before we could see how tired she was and that she was trying her best to stay awake.  I finally told her it was okay to snooze and snooze she did!

I arrived Tuesday to find her freshly bathed and sitting in her wheelchair visiting with the hospice nurse.  Mom was running a temperature and the nurse said her heart was racing but you never would have known.  She was smiling and laughing and talking non-stop.  She had refused her breakfast that morning so while it was hard to tell at the moment, it was obvious that she wasn’t feeling well.  It was also one of those definite wheelchair days.  I needed to raise her up just enough to put the alarm under her that goes off if she tries to stand up.  She struggled to get out of the chair even with my help and couldn’t stand.

The difference between good days and bad days is amazing!  I’m just glad she seems happy either way.

While the nurse and I were talking with Mom, the nurse mentioned the possibility of Mom suddenly hemorrhaging.  The doctor wanted everyone around Mom to know that, given Mom’s tumor is bleeding regularly although a small amount, she could suddenly hemorrhage and there would be a huge amount of blood.  She didn’t want anyone to become scared or panic if it happened.

Luckily for me (or not), I have experienced it myself so am aware of what it is like.  My grandma, Mom’s mom, died from a hemorrhage so it evidently runs in the family.  I also know that if it happens to Mom at this stage, it will take her life.  I am prepared and I believe my family is also.

All that said, the next time I see her she will probably be walking again…  J.  I bet Daddy is wondering when she will finally give up and join him!

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!