The little surprises…

I’ve been sick.  For over two weeks now I’ve been stuck at home.  It was nothing horrible like the flu but a sinus infection that decided to take my asthma out to play.  That means no visits to Mom for that time also.

This morning I was finally able to visit.  Mom was sleeping soundly in her wheelchair when I arrived, holding her baby doll on her lap.  I gently checked her over, inspecting her hands, her ankles, and rubbing her back so that she would slowly wake up.

When she awoke, she looked at me with that little look that says hello, whoever you are.  She asked me about the baby seemingly thinking I was there to see it.  When I let her know I was there to see her, she shrugged and started telling me about the baby.

She started removing the baby doll’s pajamas so I got out some clothes and helped her put the clothes on the baby.  As we worked, I talked a bit and called her Mom.  Her response?  “Well, I don’t know about that.”  :)

Our visit continued with Mom dozing off and on.  At one point she awoke and I took the opportunity to show her the pictures that I always go through of Grandpa and Grandma and so on.  She knew them right away as she quite often does but today she surprised me!  When I brought up the picture of her aunts, she immediately pointed to each one and said, “That’s Aunt Sattie and Aunt Emma and that's me.”  Wow!  That hasn’t happened in a very long time!

I continued through the pictures and she pointed here and there at herself as a small child.  I couldn’t tell if she recognized herself as a teenager or in her wedding picture.  When I got to the last, the one of our family when I was little, I pointed and said the name of each family member and she just smiled and nodded.  I couldn’t tell if it was registering or not.

A short while later it was time to take her into lunch.  Once there, she was trying to look back at me to see who had wheeled her in so I got down where she could see me and she smiled and said, “Oh, you’re mine.”

The mom I knew for so much of my life has been gone a long time and I miss her terribly but it’s those brief moments and little surprises that grab my heart.

I love the brief moments of clarity…

Mom’s routine continues.  Her aide awakens her in the morning and gets her dressed and then she has breakfast in the dining room with all of the residents.  After that, the majority of the twelve residents gather in the living room for the morning news, exercise and one or more activities.  Mom sits in her rocking chair there with a view of the entire area.  Although she doesn’t participate in the activities any longer, she holds her baby and watches everything happening around her as the morning progresses, snoozing here and there.  Twice each week her morning routine is disrupted briefly for a shower which makes her tired and she snoozes more.

Snoozing after her morning shower.

Lunch time arrives and typically she is ready to go in the dining room and eat.  The times she refuses lunch are very few and far between.  She may be 98 but she still eats well, just small portions.

There are more activities in the afternoon either in the living room or the TV area.  Her preferred seating in either area allows her a view of the comings and goings of the staff and visitors.  It’s very different from when she lived with my brother and later, me.  At our homes she spent all of her time looking out the windows, watching everything happening in the neighborhood.  Now her neighborhood is indoors and has enough activity to keep her interested.

Five o’clock comes and it’s time for dinner.  Again, Mom eats well.  My sister reports that sometimes she has to remind her how to start eating but she seems to take off well once started.

Evening is more time for sitting and watching until it’s time to get ready for bed.  Days flow one into another with the routine. 

While her days may be consistent, we never know exactly what we’ll find day to day.  Mom, for the most part, is past her combative stage, although it will pop up here and there, mainly at shower time.  She is definitely past her anxious stage – at least what seemed anxious for my very laid back Mom.  She typically smiles at everyone and I hear that she is pleasant.  I know when I arrive she is always pleasant.  She just doesn’t always know who I am.

I always carry my tablet and I use it to show Mom pictures of family.  I start with her “momma” and “daddy” because she can always recognize at least one of them, usually both.  I move on to pictures of Daddy or her and Daddy and mention that he is her husband and my daddy with each picture.  I tell her that she is my mommy and I am her daughter.  Her response varies each time but if she didn’t recognize me as “hers” when I arrived, she usually knows by the time I leave.

If things are going well, I’ll move on to pictures of me and my siblings and I go through the names.  I was at that point the other day when, in a brief moment of clarity, Mom looked at me and said, “You were named after my mom.”  Indeed I was!  My middle name comes from my grandma’s middle name!

She is seldom “here” but when she is, it pulls at my heartstrings.

Recap of Hospice Lessons Learned…

As I have said, hospice is no longer a wonderful group of people supporting those that are dying and their loved ones.  Hospice is now big business and most are for profit, not non-profit.  The more money they bring in, the better.  The people working in them may have hearts of gold but they are driven by their corporations to bring in more clients and if it appears they might be needed then they are helping, right?  Important to remember when speaking to hospice representatives:  if they don’t fully understand their services, the charges for those services, and how they will be paid, how will you?

 

The one line that angers me more than any other when talking to a hospice representative now is, “Well, Medicare pays that amount per diem so that’s what we charge…”   It doesn’t seem to matter if the actual services provided warrant the per diem charges. 

Think about it – we hear so much about how long Medicare and Social Security will be able to support the population.  At the same time, corporations have learned to work the system and cause a constant drain on Medicare funds for unneeded services.

So, when considering hospice, first make sure you have answers to these questions…

DOES YOUR LOVED ONE REALLY NEED HOSPICE? 

Hospice is supposed to be called in when your loved one has only six months or less to live.  They are supposed to help you cope with the impending loss and help keep your loved one comfortable until the end of life.

Alzheimer’s and the other forms of dementia don’t run on timetables so how do you know?  Keep an open conversation with your loved one’s physician.  If they have been following your loved one for a long time, they should have an idea when the end game is coming or there is a lot of pain to be managed and hospice would be helpful.   

You don’t need hospice for routine care of your loved one if they are already living in a nursing home or assisted living facility and receive routine care from the staff. For example, Mom takes no meds and has no pain to be managed.  She is still somewhat ambulatory and all of her needs can, and are, provided by the staff of the assisted living facility. 

Hospice provides those services (showering/bathing, etc.) these days and if your loved one is at home, those services may be necessary and much appreciated. 

DO YOU HAVE MEDICARE AND IF SO, DO YOU HAVE THE RIGHT MEDICARE?

Hospice representatives assume if you are 65 or over that you have Medicare and hospice will be covered.  There are many who do not have the Medicare coverage needed to pay for hospice!  If your loved one has never paid into Social Security, nor had a spouse that paid in, your loved one may not be covered.

Daddy is a good example of that situation.  As a teacher, he was considered a state employee.  Neither Social Security nor Medicare deductions were taken from his paycheck.  Instead, he had a pension that would pay instead of Social Security and he had a health plan that would stay with him throughout his life.  Mom was a homemaker but as his spouse, she was the beneficiary of his pension and his health plan even after his death.

Even though I worked in a health insurance company for over 20 years, I didn’t know that Mom didn’t have full Medicare.  I knew she had the health plan, but she also has a Medicare card.  I now know there is a difference between her card and others.  Her card has an “M” at the end of her social security number and states Medical (Part B) Benefits Only.  Because she’s never been hospitalized, I didn’t realize that she only had physician coverage until the bills for hospice started coming in. 

DO NOT SIGN HOSPICE PAPERS UNLESS YOU FULLY UNDERSTAND THE CHARGES!

When I signed the paperwork for hospice, the representative evidently was assuming Medicare would pay and I didn’t know better.  There was a page where she could list the insurance copays, deductibles and out of pocket maximums but she marked them with zeros.  The bottom of the page had a table of services at per diem, per hour or per visit fees but there were no fees listed and the section had a line through it.  Talk about misleading!!

Don’t let a hospice representative lead you by the nose as I did!  Make sure they fill in the actual fees that will be charged and what the out of pocket costs will be, if any.  Know what you are getting into before you sign.  I trusted them and was blindsided.

I don’t want to go without giving an update on Mom.  She’s doing well as always and takes care of her “baby” every day.  She doesn’t always know I belong to her but she’ll smile and loves hugs and kisses.  She’s still happy to see great grandchildren when they visit, too.  :)

Hospice is good when needed but not in Mom's case...

Mom continues to be the same - good vitals, eats well, happy to sit, watch and snooze.  Holds her baby all the time and, as I found again today, is very surprised at the weight of a real baby when she has the opportunity to hold one.  :)

Enjoying her great granddaughter again - and boy is she heavy!

I continue on my endeavor to minimize her expenses without compromising her care and happiness.

I finished the audit of her ALF expenses and found only a small error over the course of the three years.  It was recent and just an oversight.  Hospice took over bathing Mom and the ALF forgot to remove that from the service plan.  They were very responsive to my concerns and they are crediting the charges.

As I mentioned in a previous post, I had the oxygen machine returned.  Mom had never used it and my research revealed that there is now a monthly oxygen charge whether it is used or not.  It used to be that charges were for actual use.  Big change!

Looking further into the charges and services provided by hospice, I was shocked to find claims submitted to Mom's insurance company in amounts between $3,400 and $3,800 a month!  Oh my goodness!  They check her vitals weekly and bathe her twice a week.  She takes no meds and requires nothing medically.  What in the world are we paying for??

I'm still trying to find that answer but while I'm waiting for an itemized bill, I've asked the ALF to see if there are any services that hospice provides that they can't.

It would be different if Mom had medical issues other than the possibility of a hemorrhage that gives her no pain.  Hospice is not with her 24/7 like the ALF staff is so the likelihood of them being on site if Mom hemorrhages is slim to none.  It is far more likely that anything that happens will be handled by the ALF staff and Mom is used to them.

While hospice is a good thing in many cases, Mom just isn't one of those cases.  I anticipate eliminating their services in the next couple of weeks.

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...

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!

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.

 

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.

Even those with dementia love kids but…

Oh, the look on the residents faces when I walk in with my 3 year old grandson!  They are all smiles and saying hello as we walk back to Mom’s area.  Even when we walk into Mom’s area, where those residents in the later stages of dementia live, faces light up.  Words aren’t always there for them but they convey their pleasure in their expressions.

Mom really lights up when she sees a child.  I’ve only seen her when one of her little ones (great grandchildren) walks in and she seems to know they belong to her but I have a feeling she would be delighted with any child that walked in.

Yesterday, however, was a good example of how happy things can turn volatile quickly when dealing with dementia.

We arrived during exercise time and sat down next to Mom.  My little guy, Anthony, was feeling shy so he sat on my lap through the exercises and the reading of the Daily Chronicle.  The residents watched him and smiled but went on with their routine.  Snack time came next and while I passed out glasses of water, Anthony finagled a couple peanut butter crackers from Beth without asking but did whisper, “Thank you”.  J

Next up was noodle ball!  Anthony was happy to play and the residents were happy to play and watch him.  He’s 3 so I did have to remind him to share and make sure he was careful not to hit anyone but all was going pretty well.

There is a relatively new gentleman in the group who reminds me of my daddy because he calls the women “Mom” and everyone else “George”.  He talks constantly and was talking all during noodle ball.  He seemed to enjoy playing with Anthony and kept commenting on “the boy”.  Suddenly, as we played, the gentleman became upset and stood up, waving the foam noodle in a menacing fashion, talking the whole while.  It appeared to me that he was imagining some slight to “the boy” by the other residents.

Tina, the wonderful aide who cares for Mom, stepped in front of the gentleman and tried to gain his attention.  He towered over her but she is intrepid!  She worked on calming him and while I felt no threat toward Anthony, the aides were concerned so I took Mom and Anthony away from the situation.  Tina quickly calmed the gentleman and soon had him sitting on the couch holding one of the baby dolls.  Volatile situation averted.

It was another reminder of my daddy.  Daddy was in the nursing home when my son and youngest daughter were around Anthony’s age.  We went outside with Daddy and he became very agitated when we let them run across the driveway unattended.  He didn’t understand that it wasn’t a road and that they were safe.

While their memories are fading, you can never tell when a situation will bring forward an old memory, good or bad.  I know in my heart that the gentleman was being protective of Anthony but given the ravages of dementia, he no longer has the social skills to deal with the situation.  To avoid a similar situation, I think I’ll work on a different way for Anthony to visit Mom.

All tuckered out after his visit with Great Grandma!

Mom and her babies...

I know I said I would stay away but given that I’m the one overseeing Mom’s care, that’s a little hard to do.  So I went today because she has a bath on Monday and Thursday and I wanted to see if her hair was clean.  It’s been greasy looking the last few times so I was concerned.

When I arrived, I first checked her room to ensure everything was in order.  Temperature was comfortable and some things were laid on the top of her dresser – unusual because she has been “packing” everything in her drawers.  Otherwise the room was neat and clean.  I then searched out Mom.

Mom has been going to the day program in the smaller section of the home that is specifically for residents in the later stages of Alzheimer’s.  Mom’s room is in the main area of the home and the residents there are high functioning in the earlier stages.  My thought initially was that Mom belonged in the smaller section but I was happy to let the professionals spend time with her so that they could make an educated decision about her needs.  They quickly found that she was lost in the mainstream and the habits of the later stages were even more pronounced due to the stress caused by that feeling.  Consequently, they decided to see if she would adjust more readily to the smaller section.

I found Mom happily rocking her babies.  She was very happy to see me but didn’t make a move to get up.  She was quite busy. 

We talked and her only distress was that she couldn’t get “home” when she wanted to – but she wasn’t referring to my home.  I realized “home” has become her room in the main area of the facility!  Woo hoo!  Although she is currently not happy that she can’t get to her room during the day, she has made the leap mentally to it being her home!

After having me hold the babies for a bit while she “helped” get the dining room ready for lunch, she told me to put them to bed and she would check in on them after lunch.  We took a walk outside and then a couple walks around the little rectangle that is the facility.  We talked about how they (the staff) need her help with things and she seemed happy with that.  It was also obvious that if her room was in that section, she would be happy.

I settled her in for lunch and gave her a hug and kiss goodbye.  No upset, no whining – she just gave me a kiss and a smile when I told her I would be back again.

I stopped on the way out and had a conversation with one of the managers.  They will have a care meeting in the next week and, dependent upon what resident’s needs are most critical, Mom may just be getting her wish.  She might have her room right there in the smaller area!

It Takes a Village

Years ago, Hillary Clinton wrote a book entitled It Takes a Village about how others beyond parents impact a child’s wellbeing.  I think the same could be said for the elderly!

This thought hit me today because a friend sent a funny e-mail about a husband who answered a phone and proceeded to tell a wife that she could have all the things she was telling him she wanted to buy.  It was only after the conversation that you find that the phone did not belong to that particular husband.  I, of course, got a nice laugh from the joke and then thought about my husband.  Although the outrageous requests in the joke don’t in any way reflect a conversation in our lives, the premise of giving the wife everything she wants is definitely at work in our home.

During the few weeks last year before we moved Mom into our home, I was traveling an hour each way to and from my brother’s house to stay with Mom during the day.  There was one day that I had an obligation so we thought Mom would probably be okay alone until I arrived.  By the time I got there, my grandniece had already arrived and found Mom had been outside and fallen down.  We were very lucky.  Mom was not badly hurt but definitely gave my grandniece a scare – something we were trying to avoid.

That night my wonderful husband suggested that we move Mom to our house where we could keep an eye on her 24x7.  Within a week, we rearranged our home to accommodate her and the move was accomplished.

Since that time, it has been a steady progression of “fixing things” as issues arise.  When it became obvious that Mom’s dementia was causing inappropriate behavior in the bathroom, he installed locks on the bathroom cabinets for sanitary and safety concerns.  After quite a few interrupted showers, a half bath downstairs was turned into a full bath so that Mom would have access to the upstairs bathroom at all times.  Mom’s nightly wandering created the need for a gate at the end of the hallway to keep her safe during the night.  When she figured out how to open that child’s gate, he installed a half door with a keyed deadbolt.  At the same time, he installed a lock on my office door so that we can control her access to that room.  Most recently he completed the installation of a half door with a keyed deadbolt at the steps to keep her from going down them unattended.

All the things he has done have made it easier for “the village” to care for her.  That village includes me, her main caregiver, and those wonderful folks that give me the opportunity to get time for myself along the way – my daughters, my sister and the Visiting Angel that now comes on a regular basis.

My husband is a big part of that village – in fact; I could not do this without him!

Daddy and His Girls

Now that I am watching Mom go through this, I wonder sometimes how it impacted Daddy.  He was just 61 when he retired from teaching.  He was head of the science department and found he was forgetting meetings and names.  I can remember he would write notes to himself as reminders when I was growing up much as I have always done but the forgetting at that time in his life was different.

The year Daddy retired was the same year that my daughter Jessie was born.  Daddy was already a big part of life to my oldest daughter, Brandy, because I spent a lot of time visiting Mom and Dad from the time she was born.  When Jessie came along, Daddy not only had his little three year old granddaughter following him around but he was carrying an infant on his arm too.

My little family moved to Montana that year and Dad and Mom helped us move.  I think he just wanted to be sure that his daughter and his little ones were settled in.  I sometimes think if he hadn’t liked what he found out there, he would have packed us up and taken us home.  We settled in well though and Daddy liked the little town so after their time helping us, they took a train ride home.  We spent two years out there and wrote letters back and forth with Mom and Daddy every week.  They visited with my sister and her children a year after we moved and then came back a year later to move us back home.  While I enjoyed my time out there and learned a lot, I really missed being close to Mom and Dad and the rest of my family.  I was so happy to get back home!

My daughters quickly took up their special relationship with Daddy when we returned.  Daddy was the family babysitter, taking care of not only my little ones but my sister’s and sometimes those of my brothers.  Mom and Daddy would take care of two or six or more grandchildren at one time.  Daddy always said once you got past two, it didn’t matter how many you had!

It was a great time for the kids and while they had a lot of freedom on the farm, they had that firm and loving guidance of Grandma and Grandpa.

As time passed the kids grew older and my two were quite often alone with Mom and Dad.  At some point, I remember having to pack lunches for them because they said that Grandpa would put peanut butter on a cracker for them but then scrape it off before giving it to them.  By the time my girls were 11 and 8 – 8 years after Daddy’s retirement – it was obvious that it was time for them to take care of themselves at home rather than go to Mom and Dad’s.  Within a year, Daddy went to the nursing home and two years later he died.

During those years I was so caught up in my own life that, while I knew what was happening, it didn’t have the same impact on me as it did with the girls.  He was everything to them and they watched as they lost him little by little to Alzheimer’s.

Great Grandma, Great Grandkids, Oh My!

I’ve always loved the time I have spent with my grandchildren.  When my now 12 year old grandson Dillon was in elementary school and his mom, Jessie, worked, he would come to my house each morning and I would give him breakfast and take him to school on my way to work.  Oh, how I loved those mornings with him!

The situation was a little different with my 9 year old grandson Kenny.  At that time, Jessie was a stay at home mom and although they live right next door to the school, my grandson was not happy about going to school when his mommy was right there!  There was no breakfast involved but before work each day I would drive the few blocks to Jessie’s house and walk Kenny to school.  I loved every minute!

The boys have spent many nights at Grandma’s house but not nearly as many as our 9 year old granddaughter Sophia and her 2 year old brother Anthony.  They became accustomed to sleeping at our house as infants and haven’t done well elsewhere.  Consequently, it’s easier for everyone concerned if they stay here.

Last night was one of those nights.  They arrived and settled in to play and watch TV.  It was so cute when Anthony dumped all the Hot Wheel cars and sat there saying, “Peepaw, c’mere!”  When bedtime came, he snuggled in to the rocking chair with me for two songs and then lay down to sleep without a peep.  Sophia sat with me in my chair and we watched some of her shows before she was off to bed.

While it was a wonderful evening for me and Steve, it was frustrating for Mom.  Every time Anthony would get out a toy, Mom would want to put it away.  She loves to watch them but at the same time, gets agitated by their presence.  For awhile she went to her room and closed her door!

This morning was no better because the normal routine was tossed in the air again.  Although I was awake, Mom was first up and dressed and I caught her trying to open the gate.  (Supplies are purchased for the half door and installation will be complete in the next day or two.)  Sophia came up next and I made breakfast for the three of us and then Steve and Anthony followed.  Anthony needed some snuggle time with Grandma when he first awoke – Sophia even joined us for a bit – and then the playing began!

Although part of the issue is the change of routine, another aspect of dementia is at play here.  Mom is at the stage where she is suspicious and delusional so she thinks the children are “getting into things” even when they are not.  Her distrust of them and inability to handle the mess is frustrating for me but I have no desire to give up my time with my grandchildren.

We just have to make these times work!