Roles change again…

I haven’t written in awhile.  Mom has neither improved nor declined but continues to be content sitting each day holding her baby.  While that is true, each visit can be vastly different from the last.

Today I arrived after lunch to find her sitting in the rocking chair, not yet holding a baby.  She looked up at me and smiled a big smile and said hello.  We hugged – and she was actively hugging me – for a good minute and when I finally leaned back, she said, “I love you.”  I melted. 

We had a great visit although she was snoozing off and on.  She would talk a bit and then drift off but come back a minute or two later.  Food coma I would say.  At one point she noticed a CD player sitting on the floor beside her chair and started investigating it.  I thought that would be a good time to give her a baby to distract her and as I handed her the baby, she settled it in her arms.

As I drove away after our visit, I did something I do almost every time I visit.  I thanked God for giving me such a wonderful mom and daddy.  As usually happens too, I began to cry.  It’s not a sad cry even though Mom today is not the mom she has been all my life.  It’s a happy cry that I have been so blessed.  I can only hope that someday my children feel about me as I feel about my mom.

While Mom remains the same, other things have changed.  My brother, the elder of us five, has carefully watched Mom’s finances over the years.  Last year, he alerted us that her savings would soon run out and we would have to supplement Mom’s income to pay for her care.  

We could possibly reduce the cost of her care by moving her to a Medicaid facility.  I haven’t investigated it but I think she would probably qualify but moving her would be traumatic and take her away from the staff members at her ALF who care for her every day.  She is so happy and content that we made the decision to keep her where she is.

Time passed and Mom’s last bit of stocks lasted longer than my brother expected.  We actually joked that we would be very happy if Mom spent all of her money before she decided to join Daddy in heaven. 

Earlier this summer, the funds finally ran out.  Mom still has her pension – I may have mentioned at some point that she is an annuity nightmare.  Daddy set up his pension to go to Mom if he passed first.  He did, but I know the annuity companies don’t expect anyone to live to 95, let alone 99 heading to 100!

The pension always more than covered her expenses while she was living with my brother and when she moved in with me.  The savings she had accumulated over the years helped supplement that income when we moved her into the assisted living facility.  With the savings gone, it is time for the tables to turn and now the children will support the parent.

My three brothers and I split the cost over and above what Mom’s pension covers.  My sister took over the purchasing of the incidentals such as Depends, wipes, gloves, shampoo, etc.  There were no arguments or complaints, we just figured it out and arranged getting the payments to my brother so he could pay the bill.  Again, I am so blessed to have a wonderful family!

Helping to pay for Mom’s care has brought another change to my life.  It’s like having another car payment and our budget didn’t have room for that.  The other option would have been to bring Mom home to live with us again but that is no longer feasible.  Although I am in great health, I know that my back – I already have sciatica – would give out if I had to transfer her multiple times a day.  So, I have gone back to work to make the money needed to pay my part.  

Sometimes, especially when I’m working, I wish Mom was in a facility closer to me so I could see her every day but placing her near the rest of my family was the best decision.  My sister and niece are there often and many other members of the family will stop by here and there.  They wouldn’t be able to do that if I had placed her near me.  So, I will be happy to work to help pay for her care and enjoy all the visits I can squeeze in.

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.

That's Grandma, That's Mom...

I arrived yesterday and Mom was sitting in her wheelchair, holding her baby and looking quite perky!  She asked who I was and I told her I am her daughter, Jeannie, to which she replied, "Oh really?" with a big smile.

Since she was in her wheelchair already, we cruised around the halls a few times and she watched as I took down her old torn shower curtain and replaced it with a new pretty curtain with blue flowers.  Once I had it hanging, she declared it "pretty" and we continued our cruising.

We settled after a bit and she told me that "she" would be by.  I thought she was talking about my sister so I pulled out my tablet to show her a picture.  I pointed out my sister, Pat (to the right of Mom below) and Mom told me yes, that was her. 

I continued to go through the family pictures, something I do quite often. This time she identified some, commented on others and a few times I had to keep from laughing.  :)

As almost always, when she saw the photo above, she immediately said, "That's Daddy." The next photo followed and she said, "That's Momma."

The next photo is always the picture below of Mom with her Daddy and Momma. Sometimes she's unsure when she sees it but typically she knows it is the three of them. It was one of those days when she knew.

The next photo sometimes stumps her but this time she immediately said, "That's Grandma."

I continued through the pictures, Mom sometimes reaching out her finger to move the picture around or point to a particular person.  Then I brought up the picture below.

I struggled to stifle my chuckles as she pointed first to me (center front) and very clearly said, "That's Grandma" and then pointed to my sister and also very clearly said, "That's Mom."  I love her!!

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.

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!

To cath or not to cath…

My recent visits with Mom have been fun and Mom, for the most part, just continues to be her happy little self.

Now that I’m working, I generally visit Mom on the weekend.  Weeknights just aren’t conducive to visits because of the distance, working around dinner, etc.  At the beginning of June, however, we were out of town for the weekend so I didn’t get to visit.

One day the following week I received a call, during my work day, from Mom’s facility.  Mom’s hemorrhoids continue to bleed here and there and that day she had refused lunch, saying that she had some pain and she was indicating her lower abdomen.  Tina alerted the nurse and they called me saying that maybe Mom was holding urine and needed to be catheterized.  There seemed to be some concern that Mom’s organs were beginning to fail and hospice was even suggested.

It was already late afternoon and they had to arrange for a home health nurse to do the cath so I told them I would be there after work to be with Mom during the procedure.

On the hour+ drive up there (rush hour traffic) I was thinking, again, that Mom may be near the end.  I know it would be a blessing all the way around, but I know at the last minute I’ll be looking at my brothers or my husband wanting them to “fix it”, just like I did when Daddy passed.

I arrived at the home thinking Mom was going to look weak and uncomfortable.  Instead, I find her sitting in a chair in the living room watching TV and thrilled to see me.  She had obviously eaten dinner because, on close inspection, I could see some crumbs from her dessert.  The aide confirmed that Mom had eaten well.  Of course she did, she refused lunch!  J

The home health nurse arrived, chatted with us, took Mom’s vitals – which were wonderful as usual – and was ready to prepare Mom for the cath.  Mom said she had to use the bathroom first and did so with no problems.  The usual blood was there (kind of like a head wound, a little blood can look like a lot) but no pain, no complaints.  The nurse used the opportunity to help clean Mom up after and examine her at the same time.  Nothing to worry about and we both agreed that the last thing we wanted to do was bother Mom with an unnecessary cath!

Mom may be old and very tired at times but these little episodes don’t stop her.  A week after my evening trip up there, Tina came back into the living area and found that the wooden bassinet and the three baby dolls that sleep in it had disappeared.  After searching several rooms, she finally opened Mom’s door.  Yep, Mom had somehow wheeled that bassinet out of the living area, down the hall, and into her room without anyone noticing.  She was happily taking care of the babies!

Today my husband and I both went up for a visit.  Mom was so happy to see us but seemed to be more in the “visit” mode.  She had a wonderful smile but didn’t reach out for a kiss and hug so I knew that she didn’t know who we were, just that she knew us.  That's not to say she turned down the hugs and kisses we gave!

Mom talked and laughed for an entire hour.  She makes you laugh even though you have no idea what she’s saying just because she looks likes she having so much fun.

 

At one point in the conversation, she told us that, “Jeannie’s gone away.”  She stumbled a bit over Jeannie but got it out and finished the sentence.  I told her I was Jeannie but she said, “the other Jeannie”.  It may not sound like it would be funny to me, but it was.  I was happy that Mom knew the name even if she couldn’t connect it to me this visit.

So, is the end near?  Only God knows for sure!  We’ll just love her while she’s here – even if she doesn’t know who we are.  J

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!

They try to communicate...

Although this is a really large cake, I'll continue my story of food in my next post.  Meanwhile, Mom turns 96 this week.  We had a little party for her on Sunday but I'm not sure that she ever really understood what the hoopla was about.  Life for her is quite often a mystery.

To give you an idea of life for someone with Alzheimer's, there was a video documentary on PBS last week taken in an Alzheimer's care unit and focusing on one particular resident.  I missed it but it is available for viewing online for a few more days and I took the time to watch it there. It depicts the disease very well and gives you an idea of what it is like to have a conversation with someone with dementia. http://video.pbs.org/video/2216780249/

I recently took a seven minute video of Mom but I was unable to upload it here.  In the video, you can tell when she's trying to find words and she rambles.  She actually managed to stay on topic for a good bit of the video but it was very disjointed, she didn't respond to questions, and she is never able to actually get a point across.  It really makes me wish I had a video of her in the past.  She was so full of family history and knowledge of sewing, knitting and more. 

She's here, but I miss her so much...

I'm currently participating in a fundraiser for the Alzheimer's Association.  If you would like to contribute, it would certainly be appreciated by me and all the others dealing with this disease that slowly takes their life away without taking their body.  http://www.alzgive.org/jeannielange

Little Lies…

My life is made up of little lies.

That statement, taken out of context, stirs up a lot of bad thoughts!  Truth is, for a caregiver taking care of someone with dementia, it is a must.

Telling lies comes up often on the caregiver forums.  Some people really struggle with telling lies and there have been long discussions about it.  Those that have issue with it usually base their complaint on their religious or moral beliefs.  I was raised that way and empathize with their discomfort but I believe that God gives us leeway in this situation.  J

I’m not talking about life changing lies.  I’m talking about the little things that are more like playing make believe.  Yesterday, for instance, Mom suddenly asked me, “Where’s the cat?”  I quickly responded, “Downstairs.”  We don’t actually have a cat but if I had mentioned that, it could have set off an unnecessary argument.  Instead, my response was accepted as fact and calmness prevailed.

Quite often the lies follow the same form.  Since our cat went to live with our daughter 14 years ago and our dog died at the age of 17, we have not had a pet in the house.  It is not unusual, however, for Mom to ask about the dog(s) or the cat and I’m always ready with a “downstairs” or “outside” response.

Sometimes the lies are just a lack of correction.  I’m used to hearing Mom talk about having seven children although she only had five.  Five children plus Mom and Daddy equals seven so it’s easy to see the origin of that.  The other day she added a new twist – she told me she had three husbands in her life.  Hmmm… that was a new one.  I just responded with a “Really?”  I’m sure Daddy would understand my lack of correction on that one because it avoided the argument!

Mom and her 5 children - only we're not children any more!

Another recurring lie involves her Depends.  Just this morning when it was time for a new Depends, she balked a bit and said, “I just did that!”  I reminded her that we changed them yesterday and we do that once a day to which she asked, “Do I pay for those?”  My lie in this case is a little bigger.  I told her, “I take them downstairs and soak them and then wash them.”  Hmmm – don’t want to think about that but it appeases her.

I’m sure some caregivers have to tell bigger lies than I do.  When it keeps the peace and makes life calm for both the caregiver and their loved one, I think it is worth it.

Communication is Interesting

The “craziness” in our household continued yesterday when all of our children and grandchildren came over to celebrate our Christmas.  It was fairly organized but boisterous and got more so as our two year old grandson decided to open everyone’s presents for them – until his daddy took him out of the room and distracted him.  Through it all, Mom sat there quietly watching.  She handled the entire crew being there for the snacks, the opening of presents and a grab it when you want it dinner.

Mom spoke here and there during the festivities but mostly watched.  It’s at times like those that she is most quiet because she knows that her mind is going and that, most importantly, her words are gone.  During her lifetime she has read many, many books.  I believe my love of reading came from her.  She was also a stickler for grammar and, although she didn’t go to college, I could ask her a grammar question and she could answer it.

Now she seldom gets out a complete sentence that makes sense – although once in awhile she may come up with an actual sentence.  Today she said, “I really enjoyed the house yesterday and all of them in it.”  She was telling me that she enjoyed the Christmas celebration with my children and grandchildren.

Quite often, however, this is what I hear (typed word for word as she said it during our last snowfall):

“This [snow] has been put down for those of us who have been a part of it. There’s a reason for it.  It does part of a job.  That shows that it is in… I need some of the words we always use.  It’s just like we started when that happened here a week or two weeks ago.  Anyhow, they told us they were going to do that, this, so it could get that bad life hot water stuff should be you know normal.  They should not do things like that and that’s what they do some of them.  Make everybody do what they want them to.  This is like other people all along the way that leave it go…” 

She can continue on and on.  I might know what she’s talking about when she starts but where it ends up often leaves me guessing.  I’ve learned to listen with a well placed “uh huh” here and there and I try to glean some understanding of what’s running through her mind.

Today she was again fascinated by the play of clouds in front of the sun.  Over and over she told me about the colors she was seeing – purple, red, blue, orange.  I do not see those colors although I do find the variation of white and various shades of gray beautiful.  While I wondered at her use of the color words in her description, I decided not to discount her description.  You see, Mom could always see auras around people, especially when sitting quietly and watching someone such as the minister at church while he was giving the sermon.

The ability to speak is something else that will eventually disappear as well as her ability to smile.  Consequently, even though she seldom puts together a full sentence now, I will enjoy the awe that she communicates each day while I can but I will be prepared for the day it stops.

What's in a Name?

Faces may be familiar to a person with dementia but names fade away over time until they just disappear.  Years ago, near the end of my father’s struggle with Alzheimer’s, my daughter wrote a paper for school aptly titled “George”.  Very close to Daddy from the time of her birth, she watched as the names of his grandchildren slowly disappeared.  As she explained in her paper, it wasn’t noticeable at first because he began calling them all George and they thought it was a game.  It eventually became all too obvious that he couldn’t recall their names.

I’ve watched as the same has happened with Mom over the years.  I used to try a quick test when I would stop in to see Mom or take her to the doctor.  I would say, “Who am I?”  Her response would tell me her state of mind that day.  Sometimes it would be, “You’re my daughter!” as if I was silly for asking.  Sometimes she would say, “You’re Jeannie.”  To each of these responses I would give her a “Hooray!”

At times she would just laugh and I would know that she had no answer to the question.  She recognized my face as someone that “belonged to her” but no more.  Over time, that has become the norm.  She recognizes me as soon as I walk in the room, even if I have left her with my sister for the weekend, but she doesn’t know my name and sometimes I am “the woman that works here”.  There has only been one time since April of this year that she has actually said my name, calling me from another room.  I was absolutely shocked to hear my name from her!

Yesterday was a wonderful day for Mom!  My sister came to stay with Mom in the morning so that we could go to our youngest daughter’s graduation.  I didn’t tell Mom ahead of time that her daughter was coming because knowing something ahead of time can sometimes set off some agitation.  When Pat arrived Mom’s face lit up and she was ready for her hug!

In the evening, we had a graduation party.  Mom handled the situation very well, especially since she didn’t know all the people there.  Hoping to delay restlessness and the desire to go home, I let her know that one of her sons was on his way.  When Jerry walked in, Mom was sitting in a recliner and not only did her face light up but she lifted up her arms to him.  She was so excited to see him!  She happily sat with him for almost two hours before finally asking to go home.

As time goes on, I know that my mother will eventually lose the ability to recognize me, even as “the woman that works here”.   For now, I will cling happily to those moments when her face lights up when she sees me or one of my siblings or recognizes the face of one that “belongs to her”.

Should I Put My Sweater On?

Last night we were scheduled to go to the museum to see our granddaughter’s Ascent program artwork on display.  Given the timing, 5:30 pm to 7:00 pm, we had to eat early so that we could enjoy some time there.  I let Mom know that we were going to eat early and that after we would be going for a ride.  I tried to tell her where we were going but that just wasn’t registering so I left it at “a ride”.  Big mistake!

Mom has a fleece cardigan sweater that I have her wear under her coat when we go anywhere.  It’s handy even in the summer when the stores and restaurants have their air conditioning on because she gets chilly easily. 

My mistake?  Telling Mom prior to eating that we were going somewhere!  Not only did she keep asking the time – the answer to which she did not understand – but she also kept getting her sweater and asking if she should put it on.  So I spent the better part of an hour telling her over and over again what we were going to do and assuring her that I would give her dinner and get her ready when it was time.

When we finally sat down to eat some quick leftovers, Mom looked at me and asked, “When will the craziness end?”  I just had to smile and tell her that it probably wouldn’t end until after Christmas!

The evening definitely turned into a success!  Mom didn’t understand at all the work our granddaughter had done for her display but she was very happy to see her and thought the work was pretty.  When we all went up to see the train display, Mom was all smiles.  She enjoyed watching our granddaughter and little 2 year old grandson as they went from place to place looking at the trains.  She especially liked the section of the display that was a carnival train scene.

This morning she was up bright and early as usual and after the morning routine, settled down again to look out the window in my office.  Words were again an issue as she told me, “There’s a purple looking thing on the clide that has maybe come to help move things out.”  (That was not a typo!)  I think she was talking about the snow melting off the roofs again because a few moments later she said that out back “a man took a thing and moved stuff off the thing”.  Then still later, “They are clearing the stuff off the roof.  I haven’t seen them but they are.”

Our day was spent running errands.  We picked up a form from the doctor to get a handicapped parking tag so that during this cold weather, I can park closer so she doesn’t have to walk so far.  We stopped at the post office and a craft store and then did our grocery shopping.  It may be cold but she loves to put on that sweater and go!

The Man on the Phone

Delusions are an interesting aspect of dementia.  My mom with Alzheimer's truly believes what she is saying no matter the evidence to the contrary.  We've experienced various delusions since Mom came to live with us. 

One of the things we’ve heard many times is “Where are the dogs?”  We have no animals in our house and my brother did not have a dog during the 24 years that Mom lived with him.  At the moment in time that Mom asks, however, you can have a fight on your hands if you tell her that.  Therefore, my response is always, “They must be outside.”

Fall and winter have brought along with them issues that we didn’t see during the beautiful spring and summer months with Mom.  Falling leaves, colder temperatures, gray days and now snow have brought on some exasperating, yet funny situations.  The most frequent delusions revolve around a non-existent phone and “a man” or “he”.

Our first snowfall set off a wave of concern.  I thought it looked lovely on the roofs of the houses around us and on our deck.  It also put a nice 3+ inches on our travel trailer that sits behind our house. 

Mom thought it was pretty at first but soon became agitated that no one was removing it.  She told me several times that someone needed to go out and clean off the snow from the top of “that” (our camper).  I explained each time that the snow would eventually melt and everything would be fine.  That didn’t do the trick.  She said “A man called on the phone and told me that I had to get up there and clean it off but I can’t do that.”  I agreed that it wasn’t a job for her to do and again told her it would melt and be okay.

Her next move was to tell my husband her concerns and she also told him about the “man”.   Steve also assured her that it would be fine and the snow would melt but at that point she became very agitated and began yelling at him, telling him it had to be taken care of because she told “the man” that she would.  Steve finally told her that the next time the man called to tell him to mind his own business!  That resulted in what I call a “sullen teenager” move.  She stomped off to her bedroom and didn’t come back out for awhile.

On any given day, she may look for “the baby”, “the dogs”, or “them”.  She may say that “he”, “she” or “they” told her something.  I’ve learned to go with the flow to keep the peace.  A look of interest on my face and an “uh huh” seems to do the trick.

Today, we have several interesting comments about the snow that is falling but my favorite for the day – “Did I tell you about the two young but good-sized horses that walked down the street, through the yard and away?”  Steve and I told her that was wonderful!

We live in a subdivision in a small town without horses.  There is a family of deer that roams the woods and creek nearby but they don’t venture to our yard.  What do you think?

“I Worked Three Months on that Dress”

(Originally written on November 16, 2010)

Mom’s dementia has slowly taken away all the activities that she built her life around.  At the age of 94, her activities include snoozing in a chair now and then, taking walks with me, and watching.  She watches me doing a lot of the things that I grew up watching her do, learning from her.

Sewing was Mom’s passion her entire life.  For a brief period before becoming a homemaker, she worked at a shirt factory, making custom shirts. 

She left that job to take on the all important role of Mom but brought with her the skills that she would use to make all of our clothes and the quilts for our beds.  I spent many hours watching her sew at the old Singer that she bought brand new when she was young and many more sitting beneath the quilt frame, watching her fingers guiding the needle through the cloth. 

As my sister and I grew, she taught us to sew also and although I have floated away from it at times, I still come back to it and enjoy seeing a finished product that I know I made myself.

Now, Mom sits close by and watches me. 

She watched as I made my dress and her outfit for our youngest daughter’s wedding, and the sashes for the bridesmaids’ dresses.  For awhile, I was spending a lot of time at the sewing machine and at times, she would look at me and say, “Are you about finished with those?”  I think she was ready for a different view!

For the last couple weeks before the wedding, I put my dressmaker form in the middle of the living room and put my daughter’s dress on it so that it could hang out prior to the wedding.  We also put a child fence around it so that the grandchildren couldn’t get near it and possibly step on it or spill something.

Talk about rocking someone’s world!  A person with dementia doesn’t handle change well and Mom was no exception!

Mom wanted to be able to roam the living room but now the dress was in the way.  She would say, “Can we put that over in the corner?” as if it were a Christmas tree.  I just assured her that it would be out of there soon.

As much as it may have bothered her, when the day finally came and the photographer was taking pictures as we dressed our daughter, Mom sat there and proudly told everyone, “I made that.  I worked three months on that dress.” 

I know Mom didn’t make the dress but what is more important to me is that I know that she could.  She may be limited to watching me these days, but she couldn’t watch me if she hadn’t taught me.

“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.

I’ve Never Seen Anything Like That Before!

(Originally written on October 19, 2010)

One of the perks of my 24x7 job caring for my 94 year old Mom is the return to childlike innocence.  Granted, it’s not always there but it definitely shows up on a daily basis.

Just today, as we took a little trip to the grocery store, I thought it best to put Mom in a wheelchair grocery cart so I could do the pushing and walking.  My normally healthy mom is still dealing with the lingering effects of a cold so pushing the big cart all around the store, her usual job, would be too taxing.

When she realized what I was doing, she sat down with a smile and said, “I’ve never seen anything like this before!”  That may not seem to be an unusual comment but she has ridden in them many times in the past when my sister used to take her shopping.  Today, however, it was all new!

The job of caregiving is not an easy one, I’ll admit.  I’m the first one up each morning and the last to bed each night and in between I’m cleaning, cooking, and watching over what you might think of as an adult toddler.  Raising a toddler is difficult enough but add to it an adult brain that flows in and out of awareness and you have a whole new ballgame!  One minute I might be dealing with an amiable person who is ready and willing to go along with anything and the next minute it may all blow up in my face with death wishes (Mom saying she wants to die) and a few cuss words thrown in for good measure.  Those are not the moments to dwell on – even though they do, at times, make for funny stories.

In the midst of this continual ebb and flow, if I take the time to pay attention, I am given the opportunity each day to look through the eyes of a child again and count among my blessings the things I would overlook.

Just taking a short walk down our sidewalk I might hear, “I’ve never seen the sky so blue!”  A minute later, “I’ve never seen those things (clouds) up there before!”  A few steps farther, Mom comments on a tree adorned in its autumn colors, “Look at that tree!  I’ve never seen anything like it!” 

It can be anything at any moment that will catch her eye.  It may be something she has seen all her life but at that moment, it is all new and wondrous.

Did I know when I started this journey what I would find?  I had watched my Mom care for my dad as Alzheimer’s took his mind so I had an idea.  But did I really know what I would find?  I have to say no because for all the pitfalls of doing this job, it’s seeing the things around me through a child’s eyes again that is the unanticipated blessing.