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.

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.

 

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

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

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

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

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

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

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

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

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

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

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

She can enjoy pet therapy while sitting!

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!

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

Losing Ground on Bathing and Changing Clothes OR Moving Mom into a nursing home doesn’t mean my caregiving days are over…

It’s amazing how quickly good habits gained can be lost in the move to a home – or even a different room in a home.

Mom and I had settled into an excellent working schedule when she lived here with me.  Monday was laundry day, Thursday she had a bath and clean clothes and I washed towels, Friday I changed the sheets on the beds and washed them and on Sunday she put on clean clothes again.  On a daily basis, I cared for her feet and took care of changing her Depends with no issue.  She dressed herself and made her bed each morning and changed to her nightgown on her own each night.

Unfortunately, we lost a lot of ground in the move to the assisted living facility.  Initially she was in the area that was assisted living but for those in far better mental shape than Mom.  She can fool people though and even with our normal schedule written out hour by hour, I think they thought she could handle more herself than she actually could.  I commented multiple times on her dirty hair – Mom has such beautiful white hair when it is washed once a week – but was assured that she was bathing.  Turns out that wasn’t the case, she was just fooling them.

When they finally stepped in, suddenly Mom had someone else trying to bathe her and she was back in the “I’ve been doing this all my life!  I can do it myself!” mode.  Arrrggghhhh!  She yelled at the aides and they backed off.  The person in charge of the aides, Gloria, finally began doing the bath herself and Mom was clean again.

Recently, Mom moved into the area of the home for those in the later stages.  At the same time, Gloria was on vacation.  For two weeks, Mom’s hair was dirty.  I asked and they would check the schedule and say that Mom would be bathed on this day or that.  In the last discussion, I finally learned about the fits Mom was throwing when they tried to do it.  Gloria was back from vacation that day and happened in on the conversation.  I offered to give Mom a bath but she assured me she would see to it that day.  As promised, Mom was bathed head to toe and I let Gloria know she was awesome!

Mom in her new room

Just as when Mom first moved into the home, Mom is not happy right now.  Yes, she was thrilled to have her room moved back there but with the move came other changes to her routine.  For example, the aides check on her during the night – not to wake her but just to see that she is okay.  Also, I had to remove her clothes from her room because she was changing them several times a day and mixing clean and dirty clothes together.  To think that just a year ago I was fighting with her to put on clean clothes!! 
Thankfully, I know that in spite of her grumpiness now, in a couple more weeks she will adjust to the change and won’t remember anything different.  At that point she will be happy again.

Meanwhile, I’ve learned that while Mom may not be living with me any longer, my caregiving days are not over.  I visit two to three times a week and work closely with the management and staff of the home to ensure everything is working well between Mom and her caregivers.  Thankfully, I have a wonderful husband who feels that watching over Mom is important!

Changing Clothes

One hot topic that pops up all the time on caregiver forums has to do with bathing and changing clothes.  It’s one of those things that, no matter what, will become an issue for every person with dementia.  They will get to the point where they don’t bathe and will not change clothes.  They may change into pajamas at night but even so, they will put on the same daytime clothes day after day.

You may think that’s horrible and wonder how they could stand to do that.  The truth is, they forget how to bathe and, if their closet is full of clothes, they can’t make a choice regarding what to wear.  It is easier to stay in the same clothes.

So, you might think that someone needs to help them if they don’t know how to do it.  That brings in another can of worms!  The person doesn’t know that they are having a problem and if you try to call attention to it, you experience a “catastrophic response” (tantrum) caused by not understanding/remembering what they have to do to accomplish a bath and changing clothes. 

I struggled with those tantrums for a couple months but after reading The 36 Hour Day and reading suggestions on the forums, bath time has become fairly easy.  That’s not to say there won’t be an issue here and there but for the most part, every Thursday we accomplish washing her hair and the bath.

It’s interesting that some folks on the forums are quite upset if bathing doesn’t happen on a daily basis.  Others think every other day is a must and some, like me, settle for once a week.  I know this all depends on the person because each person can become “ripe” at different rates.  At 94, Mom does not sweat and, in fact, is usually bundled up even in the summer.  She is not yet incontinent but we use Depends because her habits are not what they used to be and they help also.  So, at this point, once a week is good.

Then there is the question of changing clothes.  Like the bathing, we’ve gotten into a routine.  Every day I change the Depends for her and put lotion and fresh socks on her feet.  That goes like clockwork now and she never balks at it.  Even though she has fresh Depends and socks, Mom would wear the same clothes every day if I let her.  That’s where my decision point comes in.  I won’t let her wear the same clothes all week between baths but how often?  I’ve tossed it around in my mind quite often.

As I asked myself the question again this morning, I finally settled on an answer.  For now, unless she spills something, we’ll stick with changing to clean clothes twice a week and again if there is a special occasion.  In her current condition, I think it works fine and she seems content.

Woo Hoo! Bath is Done!

(Originally written on November 8, 2010)

What a simple phrase, “bath is done”.  But to a caregiver it is cause for celebration, even if it has to be a silent one. 

There are many steps to the bathing process and when dealing with Mom who has dementia, each step is an opportunity for dispute. 

The first, and most crucial, is the notification.  If I can get through that, we can usually get through the bathing without incident.

I’ve learned that a happy but quiet tone of voice when saying, “Mom, this morning we will wash your hair and then do a bath”, is helpful.  It is not a sure thing, however. 

The response may be an easy, “Alright” for which I give an immediate and silent prayer of thanks.  It may be a “What??” meaning she doesn’t comprehend the statement and explanation is needed.  I may get the response, “I just did that yesterday” when, in fact, it has been a week and I will need to convince her of that. 

Once in awhile, the dreaded response, the one no caregiver likes to confront, is the all out war that can ensue.

All out war can involve yelling, cussing and even physical abuse of the caregiver.  Thankfully Mom has never gotten physical but I have dealt with the rest.  None of these were typical behaviors for Mom when I was growing up.  I honestly don’t remember my mom or dad ever yelling other than to call us in from outside.  She has definitely found her voice in dementia!

Although curse words were also seldom heard when I was growing up, ironically the few times I did hear them were from Mom, typically on a Sunday on the way home from church.  She only had two, hell and damn, both very mild in the range of words available but at the time, I had not heard any others. 

Now it seems only one is needed when she goes into battle mode.  She yells at me to “Get away, damn it!” or “I don’t want to, damn it!” 

I’ve learned to do my best to remain calm and quietly remind her that her mother taught her to bathe once a week.  Sometimes I have to pull the doctor into it and tell her he said that she must bathe once a week. 

I bring to battle all my options for persuasion, all the while doing my best to remain calm and speak quietly.

I haven’t always succeeded in my attempt to remain calm in those situations.  A few times I have yelled back.  Even though I have ultimately won each battle, it’s those times that I have lost my composure that have taught me the most.  In this switch of roles I know that Mom, if she were able, would forgive me and be proud that I am learning.

“I’ve Been Doing This All My Life!”

(Originally written on October 20, 2010)

As a caregiver, there are many phrases that you don’t want to hear because you know that what follows won’t be pretty.  I learned very quickly that when Mom says, “You don’t need to tell me what to do.  I’ve been doing this all my life”, I need to watch closely to see if I need to provide help – wanted or not.

There are a lot of things I let pass.  If no one will be hurt including Mom then no harm, no foul.  She likes to cut tissues into squares or strips.  I think in her mind, she’s conserving them.  It means a lot of bits of paper sitting around but that’s not worth worrying about.

Then there are the things that are just a little more of an issue.  Mom has a poinsettia plant that she brought to our home when she moved in.  It is in a pot that sits in a larger plastic bowl.  Every day she waters it with two cups of water.  We realized soon after she moved in that she doesn’t comprehend that the two inches of water that is in the outer bowl actually came from the water she poured into the pot holding the plant. 

Fortunately, we were on hand when she was pouring water happily into the pot, totally oblivious to the water running over the top of the outer bowl!  We were still in the learning phase then and what ensued was quite an uproar.  As we were rushing to clean up the mess, we tried to explain, to no avail, the connection between the water she was pouring and the water overflowing.  Her very loud response was, “You don’t need to tell me how to take care of this!  I’ve been taking care of this for years and never had a problem!  Just leave me alone!” 

After a few attempts at explaining the consequences of her actions at subsequent waterings, I took a different tack.  At night after she has gone to bed, I simply empty the water from the outer bowl.  When she checks her plant in the morning, she can water it as usual with no messy results.

Finally, there are those things that like it or not, have to be handled directly.  They involve safety or sanitary issues.  Steps and reasonable cleanliness are the two biggest issues for us.  Most days Mom knows that she cannot go down the steps by herself because we don’t want her to fall.  She also knows that once a week I will wash her hair and supervise her bath.  Occasionally her need for independence jumps out in those situations and I hear “I’ve been doing this all my life!” 

I’m sure Mom didn’t realize all those years ago that she was preparing me to take care of her now.  She gave me the tools I need to deal with these times:  patience, understanding and most of all, the ability to stand my ground with love.