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.  :)

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...

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.

 

Just can't keep her down...

I know I've been very quiet lately. Needs have changed since Mom is so happy at the ALF and her day to day has settled into a lovely routine. Thankfully her contentment has gotten us through the last couple of months.

Last fall, Mom's new doctor suggested giving her a daily dose of vitamin D. I thought nothing of it at the time and agreed to allow it. It was a bit of a joke that our 96 year old mom didn't need any medications, only a vitamin.

I guess that was the wrong decision. Although I'm sure the vitamin didn't cause the problems that followed, it obviously didn't help because we saw no change for the good.

Very soon after starting the vitamin, Mom developed a mild case of pneumonia. She had quite a heavy cough and congestion and an x-ray showed a small spot of pneumonia in one lung. Given that she got up each day, took part in activities and ate every meal, her symptoms weren't any worse than what she had experienced in the past so we decided to stick with an antihistamine and some Mucinex. The combination worked well and the pneumonia settled down.

Another issue cropped up next.  Possibly because of the meds and/or vitamin, Mom's hemorrhoids started bleeding badly.  That continued for awhile but settled down, interestingly enough, after the meds and vitamin were stopped.

Mom was so happy to see everyone at Christmas!

Christmas rolled around and our family got together at my brother's and Mom was thrilled. Shortly after Christmas, she received her present - a bout of diarrhea. Again, Mom didn't seem to notice, never complaining and going about her days as usual. It made extra work for Tina but as always, she was wonderful with Mom.

I did get in on a bit of the fun but unfortunately my visits were limited during the last few months due to a knee problem and an unexpected surgery on the same. I'm thankful every day that Tina is taking care of Mom so I don't have to worry but I'll be glad when I can get back to my normal visits.

Another little tidbit to think about if you have a loved one in an ALF that charges based on services needed - after a few weeks of the vitamin D, I received a call from the Health and Wellness director at the ALF. She was concerned about the bill because the addition of the one pill - Mom's only daily medication - they had to charge a medicine charge of $16 a day. Not for the pill, that's billed by pharmacy company. The charge is for the nurse keeping track of it and providing it daily. Having seen absolutely no change in Mom while she took it - other than the pneumonia - we decided to drop it.

You would never know she's been sick!

Their time and ours – or – “I have a meeting…”

It’s not easy making the decision to place a loved one but sometimes it is for the best.  In the case of taking care of a parent, I think we feel that they took care of us therefore we should take care of them.

To a certain point, I believe that to be true.  I also realize now that when Mom was raising me, however, she was able to continue her life and it was a busy one!  Sewing our clothes and quilts, knitting and crocheting our sweaters, hats and mittens, taking care of a vegetable garden that took up an acre of land and canning or freezing everything that came out of it took up her days.  In addition, of course, she was taking care of all of us, especially me, the baby of the family of five children.

One memory of my childhood comes back each time I kiss Mom goodbye now.  I most always visit in the morning and stay until she sits down to each lunch.  She always wants to know if I am staying and is obviously looking for a place for me to sit.  My response is always the same.  “I have a meeting”, I say, knowing that response will put her at ease.  I don’t have a meeting but it is something with which she can identify.

Mom begins her process of preparing her place setting for lunch.  For some reason, she uses her napkin as a placemat.

Daddy was a teacher and Mom was a homemaker all the while I was growing up.  I remember the school nights after dinner when we would all be in the library of our home, Daddy grading papers and my brothers and sisters doing homework.  Busy during the day, Mom used that time to read, something she loved to do and hence, the reason we had a “library” in our home.

Some nights, however, Mom and Daddy would leave after dinner to go to a meeting.  They were involved in church, Daddy’s school, and the local school my brothers and sister attended.  There were also 4-H meetings because they were both leaders, separately – Daddy of a livestock club and Mom of a sewing club – and Daddy was one of the founders of the local baseball league given that he had three sons to keep busy.

So, out they would go, telling me that they had a meeting to go to.  It was sometimes frustrating to me because in my mind, I was the center of their world.  Why would they leave me?  J  One particular night, they told me I could stay up until they came back home but they didn’t tell my brother whom they left in charge.  When I refused to go to bed, I very clearly remember him picking me up and carrying me upstairs to my bed.  He was gentle and kind about the entire thing and kept telling me that Mom and Daddy didn’t tell him that.  Needless to say, I was not happy with them when they arrived home!

Lucky for me, Mom is not a child.  She may need help at times like a child and she can’t find the words she wants but there are some things that still strike a chord in her mind.  Meetings is one of those things and if a little lie like telling her that I have a meeting will put her at ease, then I can do that!

Oh my goodness! Putting her in the assisted living facility has made her healthier!

This may sound really strange but when I first brought Mom to live with me, there were times when I thought she was at death’s door.  I would call my brother, whom she had lived with for 24 years, and he knew exactly what I was talking about.

Fast forward to the present, after spending a year living with me, and now a year living in the ALF and again, OH MY GOODNESS!  I swear Mom is going to outlive us all!

I drove up for my visit today and when she saw me, she got all excited and held out her hands to hug me.  I helped her up from the couch and she held on to me, telling another resident, “This is my daughter.  She’s mine… well, and my husband’s too.”  J

We walked around outside for awhile and sat in chairs in the sun while she exclaimed over the blue sky and how much she loved it and told me about the plantings and she and Daddy had done part of it and other men had helped with the rest.  She talked and talked and some of it actually made sense although it was all wrong – but she thought it was and I just went along with it.

The days aren’t always so clear.  Some days she doesn’t know me at all but not often.  She usually recognizes my face although she can’t come up with a name for me or anyone else in her family.  Some days she doesn’t recognize the family (in pictures) and sometimes she does.  I don’t know until I arrive.

Physically, however, she is thriving.  The only issue we see is that her ankles swell now and then, typically when Tina, her regular aide, and Beth, the activities person, have been off for a day or two.  I think she sits and sleeps on those days.  Other than that, their meals are obviously working wonders – and they should because their menus are all about nutritious meals for the digestive systems of seniors.  That care definitely shows on Mom!

Back to the mental part though.  Mom still has everything packed into her dresser, ready to move at a moment’s notice.  Not that she wants to, it seems, she now says she doesn’t know when they will come in and tell her she has to leave.  I assure her that they don’t want her to leave and that the family knows where she is so all is good.

It’s always fun to see what she has decided to put on her dresser.  It is the only place she will display anything and what is there changes from time to time.  I quite often take a picture and share it with my family on Facebook so they can see who rose to the top that day.  Here’s today’s picture – note that Jesus is sitting in the tray from her false teeth container…  the funny side of the mind!

He really does watch over us…

Some might think I am crazy but my first memories involve Mom, Daddy and God.  Sometimes all together as in going to church or getting ready to go to the hospital when I busted my head open on an iron radiator when I was about three.  Sometimes it’s just Daddy as when he came into my preschool class at church to play piano or when he taught me to sing “Jesus Loves Me”.  Sometimes it’s just Mom as when she made me lunch in a lunchbox and we ate it outside on a quilt in the yard because I wanted to be like my big brothers and sister and have a lunchbox or when I played under the quilt frame while she worked on a quilt for one of our beds.

Sometimes it was just God.  Most vivid is the memory of our big old house, built in the 1880s, and how noisy it would get when there was a thunderstorm.  I was so scared of all that noise and the thunder and lightning!  I can remember being as young as three and hiding under the covers and saying a prayer to God, “Please God, I’m scared, could you please make the storm go away?”  I can’t say if the storm went away or if I became peaceful enough to sleep but the next thing I would know, it was morning.  As far as I was concerned, God was there watching over me.  I have carried that feeling throughout my life.

I would not claim to always have listened to Him – sometimes I have made huge mistakes that obviously were not in His plan.  I eventually realize my mistake and, not without trial and tribulation of my own making, I am led back to the path I should take.  I also never ask Him, “Why?”  I figure that’s not for me to know but there’s a purpose to all.

So why is this all on my mind?  Well, many changes have been occurring with the residents at the home.  Over the last year I have watched the steady progression of the disease and eventual death in some, others are following that path quickly.  For the most part, it’s really been a calm ride but every once in awhile there is a resident that acts out and can be a danger to the aides or the other residents.  There have been a few times recently when I have helped the aides as they tried to deal with these situations without anyone being hurt.  I truly appreciate what they deal with on a daily basis!

Still, you probably wonder what God has to do with it.  When Daddy was 69 and far into his journey with Alzheimer’s, he suddenly didn’t know my brother and ran across two fields and jumped three fences to get to our neighbor’s farm and get away from my brother.  He was VERY healthy!  Shortly after that, he checked himself into a local hospital that is known for geriatrics to get some testing done.  A half hour after he arrived he forgot why he was there, wanted to go home and became violent.  They immediately gave him a sedative.

No big deal, right?  Unfortunately, Daddy had never taken any medication so the proper dosage for his height and weight hit him like a ton of bricks.  He was out for the better part of three days and when he woke up, had to be reminded how to chew and swallow again.  Although a week or so before he had run across those fields and jumped those fences, he never walked again.

I don’t think any of us ever felt there was a reason to be upset with the hospital because they had no way of knowing what would happen, nor did we.  I believe that God was watching out for Mom, knowing that Daddy had progressed far enough that she needed more help.  Daddy went directly into the nursing home and Mom spent every day, all day, with him but never had to deal with violence – because he was no longer mobile – and was able to get her rest every night at home.

Do I believe it was supposed to happen that way?  Definitely!

It’s probably good she is farther away… AKA Stay away when you’re sick!

I’m missing Mom right now!  I haven’t seen her since last Tuesday – almost a week!  Usually I see her two times a week, sometimes three, and I visit for a couple hours.  I’ve stayed away since last Tuesday because I just didn’t want to take the chance of spreading an illness to her or any of the other residents.

Some things don’t stop me from visiting.  I hurt my back the Monday before Thanksgiving but I still visited.  When my husband came down with a cold or infection of some sort after Thanksgiving, I visited last Tuesday because I had no symptoms and we were being careful.

My next visit was to be last Friday but I received an early morning call that my littlest grandson was not feeling well.  God must have been watching out because I started having headaches that day – not caused by my little Hurricane J - and by Saturday was well on my way to the same thing my husband had.  Here I sit today, still not 100% but hoping that later this week I’ll be in good shape to go.

I’m especially sensitive to visiting if there is a possibility that I am ill because many years ago, I worked in a nursing home as a dietary aide.  I loved my work!  I helped the cooks prepare the meals and kept everything clean and neat for them.  My favorite part was serving the residents – knowing each one’s quirks and favorite foods and joking with them as I made sure they enjoyed their meal.  After the meal it was my job to wash the dishes and put them all away but industrial dishwashing equipment made that a fun and easy chore too.

So what does that have to do with spreading an illness?  There was a day during my time there when a cook came in with a stomach virus.  She should have stayed home and certainly should not have been handling food.  Within one week, three of the most vulnerable residents passed away after having symptoms of a stomach bug.  I can’t say it was the cook’s fault because the bug was going around and visitors were coming in and out all the time.  All these years later, however, I still remember that lesson.

So, in this case, I’m happy that Mom is farther away because if she was close, I would feel that I had to see her every day because no one else would be close.  And I’m happy to say that, while I have not been able to visit, our very large family has more than made up for it!  Mom has had MANY visitors this past week!

Two of my grandnieces take Mom and another resident for a walk.  It makes me SOOOO happy!

Sometimes I wish Mom was closer…

When we decided to move Mom out of our home and into an Alzheimer’s facility, location was a question.  Mom had lived with me for a year but I live a little less than an hour away from everyone else in our family.  Although Mom wouldn’t know where she was actually living, by placing her near the rest of our family, I had hoped that there would be more opportunity for visits.

Mom does have visitors – in addition to my regular visits, my sister stops by at least three times a week on her way home from work and there are others that stop now and then too. 

Truth is, though, when dealing with Alzheimer’s and dementia, there comes a time when you begin to feel that visits don’t mean much.  If you’re lucky, your loved one will recognize you when you arrive.  Eventually they will lose your name (Mom lost mine long ago), then they will lose the relationship (daughter, son, etc.) and finally they might lose any reaction to a visit at all.

Early on they are happy to see you and might remember for awhile that you visited even if they can’t remember your name.  As time goes by, you’ll enjoy a great visit only to find that 10 minutes after you left, they’ve forgotten you were there.  That’s when you begin to feel like your visits don’t mean anything.

I can honestly say I haven’t had that with Mom.  Yes, she forgets I was there 10 minutes after I leave but she always recognizes me when I arrive.  No, she doesn’t know my name and quite often doesn’t remember I am her daughter but she knows my face and that I’m there specifically to see her.  Some day that reaction will be lost but even then, I know my visit will mean something.

There is a gentleman at the home, Ralph, that I have watched progress deeper into Alzheimer’s.  Although he is known for cussing and yelling – something my daddy never did – he reminds me of Daddy.  Seeing him brings back the memory of Daddy at the nursing home sitting in his geri-chair. 

At times, Ralph will give me a smile and sometimes respond briefly to my questions.  At other times, he is yelling and agitated and it bothers everyone but the reality is that he is in pain.  They are constantly adjusting his medication to try and manage his pain.  When it’s working, he’s peaceful and naps.  When it’s not, you can hear him all over.  I hate to see him feeling that way so if he is agitated when I am there, I go over and rub his back and look into his eyes.  I think he recognizes my look of concern and he settles into the feeling of the backrub.

Ralph never knew me before I started visiting the home and he never had the chance to know me.  When I’m there, though, he seems to know I care so even though we have no history and no future, that feeling makes me glad I took the time with him.

That’s why I sometimes wish Mom was closer.  I would happily visit every day because I want her to know I care.

I helped Mom put this puzzle together the other day.

It’s best to bounce when you fall…

It’s not unusual to hear from family members that their loved one fell at the nursing home.  I’ve heard it many times and unfortunately, blame is always directed at the home and the staff.  I’m here to give you a different view of the situation.

I have a daughter who has had epilepsy all her life and for about 17 years, she has had not only absence, or petit mal seizures, but also tonic clonic, or grand mal seizures.  She doesn’t have a warning so she is unable to get in a safe spot or position before it happens.  I cannot tell you the number of times that I have been in the same room and have watched as she fell, unable to move fast enough to catch her.  She has suffered far too many bumps, bruises, black eyes and more from those falls.  I felt so badly each time, that I was unable to respond in time to cushion her fall.  That said, I thank God for watching over her because she’s had her share of seizures right at the top of the steps!

While Mom was living with me, I also watched as she stepped back from the window, lost her balance and fell.  I was in the next room and could not get to her quickly enough to catch her.  Luckily, there was a soft footstool and although it didn’t cause the fall, it was close enough that she sat on it rather than falling all the way to the floor.  It stopped the fall but the momentum sat her back into a cast iron quilt stand covered with quilts.  She hit that hard enough to bend the cast iron! 

There was surprise on Mom’s face as she fell but once the movement stopped, she looked up at me with a sheepish grin and then laughed!  I helped her up and kept an eye on her but no bruises showed up, nor did she complain of pain.  Whew!

Last weekend I received a call from a nurse at Mom’s home.  Mom had been in her room looking out the window – by now you know this is her favorite pastime – and as she backed up from the window, she forgot the bed was there and fell.  Tina walked in to check on her and there was Mom, sitting on the floor with her back against her bed and she looked at Tina with a grin and said, “Oh good, honey!  Can you help me up?  I’m stuck!”

The normal procedure for a fall is to keep the resident still until a thorough check is completed.  The nurse was called for Mom and the check found no broken bones or even bruises.  After getting Mom up, her only complaint was that her legs hurt a little – but that is a typical complaint on a daily basis.

Not all falls have happy endings or make for comical stories.  I’ve seen many over the years and a few at Mom’s home.  The falls typically happen when the resident decides to do something that they have forgotten they can no longer do.  They also typically happen when an aide is not standing right next to them.

My point here is that even when I was the 24x7 sole caregiver of my daughter and later, my mom, I was not able to prevent falls.  Why would I hold the caregivers at Mom’s home to a higher standard than I was able to achieve?

Bath is done and I didn’t do it!!!

Handling Mom’s bath for the last month and a half paid off. 

Two weeks ago, her aide, Tina, told me that her goal was to get Mom to allow her to do the bath.  Last week, she joined us as I bathed Mom to get an idea of what worked and then said that she wanted to try this week by herself – without me around – to see if Mom would cooperate.

Tuesday, the day I usually did the bath, I waited to visit in the afternoon.  The bath wasn’t accomplished that morning but, quite frankly, I don’t know how anyone could have accomplished anything!  Oh my goodness!  You would have thought it was a full moon – it was a new moon so maybe the combination of that and the weather could explain it.

Mom had pitched a fit in the morning.  Night shift had forgotten to take her dirty clothes out of her room from the night before.  Mom was up early and dressed in them before Tina arrived that morning.  At that point, Tina was lucky to get Mom in clean clothes, let alone doing a bath.

Mom wasn’t the only one acting out, however.  I found one of the other ladies stripping off her clothes as she walked and she had quite a few harsh words for Tina and Whitney as they tried very kindly to get her dressed again.  Another one of the ladies was singing with us one minute and yelling at us the next.  Two of the gentlemen were up all night wandering around and so were sleeping off and on.  When they weren’t sleeping, they were yelling or getting into things – and also stripping!

I’m sure it wasn’t right but I couldn’t help laughing when Beth, the Life Enrichment Assistant, would try to get the residents together for an activity.  She would get one or two but before she could get another, those first two had wandered off. 

Everyone seemed to be in their own little world and they all seemed to feel that their world was a little off kilter at the moment.

It was comical but I did truly feel for the workers.  Those are the days that they are cussed at, hit and just generally abused.    You can see them getting tired as the day (or night) wears on.  It’s amazing that, in spite of the treatment they receive at times, it’s easy to see that they truly care for the residents and come to love them like their own family.

Wednesday was a new day, thankfully.  Tina set up for Mom’s bath and, other than a few minor grumbles at first, they sailed right through and Mom was a very happy camper.  When telling me about it today, Tina shared that her husband said she had talked about Mom in her sleep Tuesday night.  She thought it was probably because she was anticipating doing the bath – and hoping it went well!

Now that she has one successful bath under her belt, I’m sure my bathing Mom days are over!

You have to think about what they deal with…

I had full intentions of writing about poop today based on a funny incident yesterday.  After my visit with Mom this morning, I decided to save it for another day.

I had an excellent visit with Mom.  We walked and then sat and played a lively game of dominoes with two other residents, the Life Enrichment Assistant and one of the aides.  It was comical!  Mom was snoozing off and on and playing out of turn while June, one of the other residents, bantered back and forth with us all.  So much fun and so much laughing!

I was doing my best to brighten the day for the workers around me.  One of the aides commented that she was “so upset” but that my laughter made her feel better.  It seemed each person had something happening personally and needing some cheering.  The feelings came into better focus when I realized that one of the residents, a sweet little lady everyone called Miss Lu, had passed over the weekend.

I knew that Lu’s time was coming.  I interact with all of the residents and had watched the gradual decline as she stopped eating and talking.  The end came quickly.  She was walking with a walker just a couple weeks ago, then she was in a wheelchair and although she didn’t speak, she would look at me when I spoke to her.  I wasn’t surprised to see hospice involved because she was no longer eating, and then last week, she didn’t see me at all.

Lu’s daughter arrived to bring all the wonderful caregivers some home-baked cookies in thanks for the loving care her mom received.  The truth about the frustration over things happening in their personal lives came out.  They were all dealing with inconvenient things in their personal lives but topped with the loss of their sweet little Miss Lu, it was no longer frustration but terrible grief.  No, Miss Lu was not their mother, or any relation for that matter, but she was loved by them all.

I will not try to tell you that all of the folks that work in nursing homes or assisted living facilities are loving, caring people.  For some it is just a job and it is obvious when watching them work with the residents in their care.

I believe that the majority of people who work long term in those facilities have been given the ability to truly care for the people they are helping – even when the residents are cranky and difficult.  With that caring comes pain because ultimately, their charges are marching toward death.  All the caregivers can do is try to make the residents’ lives as happy and comfortable as possible until the end – when the resident finds true happiness and peace in death while their caregivers deal with yet another loss.

Looks like my bathing days are not over…

The saga of Mom’s baths continues.  She’s been in the Alzheimer’s assisted living facility for three and a half months now and although their standard is bathing twice each week, they have been lucky to get Mom bathed once each week.  Actually, there have been weeks when she didn’t have a bath at all.

That may sound terrible but before she moved in with me in May of 2010, she was not bathing properly and I’m sure had longer times without bathing than we have experienced the last three months.  That’s why I have not stepped in other than to bring up the issue.

It wasn’t an easy transition when she moved in with me.  You can look back over my posts and probably find my lamentations about Mom cussing and yelling at me, pretend crying, whining, and even throwing things at me.  Over time, however, she came to realize that I wasn’t a pushover.  I had a very good teacher – her! – who taught me how to handle obstinate little ones.  She may be 95 now and certainly no longer little but dealing with an adult with Alzheimer’s/dementia is in many ways just like dealing with toddlers.

The aides at the facility have tried.  Don’t think that they are just ignoring the need because that is not the case.  Their process is to approach and if the resident vehemently refuses, they back off and reapproach later.  That works for many of the residents because they forget the initial approach.  Not so with Mom!  Either she realizes that she’s getting away with her behavior and keeps thwarting their efforts, or she also forgets the initial approach but has the same reaction each time.  We’re not sure which but sometimes my brother and I think she knows more than it seems… J

Last Friday I arrived for my visit and again, Mom had not had a bath all week.  The aide asked if I wanted her to try then and so we did.  Mom started her normal routine but I looked her square in the face, told her I wasn’t going to argue with her and that she could yell at me, hit me, whatever, but she was going to have a bath because her mother taught her to take one once a week.  She wasn’t happy but she settled in with me giving the bath.

Took Mom for ice cream after her bath!

I notified the Health and Wellness director that given Mom’s continued obstinacy, I would take over giving her a bath but I would do it once a week.  The way they break down their services I have the option to do that and eliminate that portion of the fee.

So, today I went up to visit Mom and gave her a bath.  She threw her little fit – it was almost comical at times – but soon settled in and let me wash her hair and give her a good bath and foot soak.  It was so nice to see her hair so soft and beautifully white again!

I let her know that from now on, I’ll be giving her a bath once a week – just like Grandma taught her and she taught me.  She can’t argue with Grandma!  J

Visiting Your Alzheimer’s Loved One OR How to avoid that haunted visitor look…

Have you ever visited at a nursing home or assisted living facility and felt uncomfortable?  I see it in visitors’ faces quite often – even those close family members that visit their loved ones frequently.  It’s almost a combination of worried and harried.  They have smiles for their loved ones but their eyes show their smile is on the surface for the benefit of their loved one.

So many things cause that look.  Guilt because the loved one has been placed in a facility instead of keeping them home, uncertainty about how to communicate with the loved one who is losing the ability to put thoughts and sentences together, fear of the other residents of the facility because it appears they are not mentally capable of communication, and the list goes on.

When I see that look, I count my blessings because although I’ve never been comfortable in social situations, various things in my life have given me the ability to be comfortable in a nursing home. 

Being the youngest in the family, I spent more time than my siblings did with Mom and Daddy.  Daddy was always one to visit folks in the nursing home and I was right there with him.  Alzheimer’s appeared to be less of an issue back in those days because folks generally got sick before their minds went – it seems we live a lot longer now.

I felt so comfortable with the elderly that I took a job in a nursing home when my girls were little.  I helped in the kitchen and dining room and loved every minute with the residents because they all had their funny quirks that made them who they were.  For example, there was Gladys.  She would put her head on the dinner table and pretend to be asleep but if you got down and looked up at her face, her eyes were darting around to see if anyone was noticing.  J  She just wanted someone to put her in bed.

What can you do to be more comfortable?  Biggest thing – learn the names of both the staff and the residents and always greet them with words and a smile.  It’s even important to greet those residents that don’t look like they can communicate!  Don’t hesitate to ask them how their day is!  When dealing with Alzheimer’s, you never know what kind of an answer you might receive but that’s the fun.  It’s important to get to know the folks that live with and help your loved one so you can understand the dynamics of the atmosphere at the facility.

If at all possible, take part in the activities that are provided for the residents.  You may feel like taking your loved one to their room or away from the others and that’s fine for a bit but if your loved one sees you spending time doing the activities with the group, it makes them feel that you value the others in their life there at the home.

So what did I do today?  I greeted each and every resident when I arrived.  I found Mom alone in her room but brought her out to exercise with the group and we helped them make Rice Krispie Treats.  Mom was tired this morning but because I took part, she did also. 

I spent a few minutes alone with Mom before I had to leave but she was happy to go back to join the group.  They were listening to songs from the Sound of Music and I sang Edelweiss to Mom before I left.  She was all smiles as I kissed her goodbye and said goodbye to everyone.  We blew more kisses as I walked out the door – a happy visit for both of us!

Alzheimer’s, Sex and Nursing Homes

Being the baby of the family, I think I had a different experience growing up than my siblings did.  The oldest three were already busy with school by the time I was born and when the fourth headed off to school; I still had three years alone with Mom before heading there myself.  Life continued that way with the older ones heading up and out and Mom and I were quite often alone together after I came home from school.  When I was a teenager, we used to watch Phil Donahue together and that generated many discussions on many different topics.  The best thing was that I was allowed to have my own opinion and Mom would discuss it with me, not try to make me see it her way.

Those open discussions may be why, when Daddy was taking his journey through Alzheimer’s, Mom just opened up to me one day and said that Daddy wanted to have intercourse every day and she was tired of it and didn’t know what to do.   At the time, I’m thinking “TMI” (too much information) but I didn’t say anything, just let her talk.  I certainly didn’t have an opinion on that subject because although I was married and already had two children, I was still in my early 20s and intercourse every day was just fine with me!

Talking seemed to help and I didn’t hear any more about it and it wasn’t long before Daddy went into the nursing home and could no longer remember how to walk, let alone think about having intercourse.

So here I am all these years later and Mom is now in an Alzheimer’s Assisted Living facility.  In her little world there are 11 residents, including Mom, all in varying conditions of the later stages of Alzheimer’s.  Six are women, one of whom uses a walker and one is chair/bed bound.   That leaves five men; one using a walker and two are chair/bed bound.

So what does that have to do with sex?  Well, there may not be anything near intercourse happening but it’s always good to remember that these folks have Alzheimer’s – they’re not dead!  It’s also good to remember that just because they have spouses, it doesn’t mean that they always remember that!

I have to say that the staff members at the facility are well aware and watch over their charges carefully.  One of the residents is a gentleman that may well be in that stage that Mom described to me years ago.  He has a wife but she is healthy and still lives at home so there are times when we’ll see him strolling with one of the other ladies holding hands.  It doesn’t last long though because the staff members are quick to remind both parties that they have spouses who wouldn’t appreciate it.  Some might wonder why make a big deal out of it but after Mom’s stories… hmmmm…

What about Mom?  Well, she just keeps telling everyone she’s getting married soon.  We haven’t met the guy but we’re hoping it’s Daddy – at least that’s who she was talking about today.  J