Still Alice… Still Mom

I watched the movie Still Alice yesterday.  I read the book a few years ago and while it wasn’t based on a true story, Lisa Genova’s research and resulting story is an excellent first person account of life with Alzheimer’s.  A movie can never catch the full flavor of a book but the movie did provide insight into the mind of a loved one with Alzheimer’s. 

The movie also touched very lightly on the family dynamic – something I’ve learned from firsthand experience in not only my own but others close to me as well.  Seeing how others are handling it, I consider myself a very blessed person to have such wonderful siblings!

Some people seem to think that Alzheimer’s, or any form of dementia, appears overnight.  They say, “It can’t be dementia because she knows who we are” or “He doesn’t have Alzheimer’s because he can tell you what he did today”. 

That’s not the case, however.  Dementia builds up little by little and differently in different people.  I’ve told about Mom’s losses over time such as finding the word she wants to say, forgetting how to sew, and more.  For Daddy, it was forgetting names and missing meetings.  In either case it was nothing noticeable at first and developed over time.

In the movie, Alice was a world renowned professor of linguistics – a lover of words – and the loss of her words was devastating to her.  It was only the beginning of what she would lose and, while the book played it out more completely, the movie did manage to show how the stages progressed.

As you may imagine, the slow progression of the disease may cause family members to disagree about what’s happening with their loved one.  I find that to be a key topic on the support forums and at our local Alzheimer’s support group.  The gulf between the family members can widen and seem impossible to close.

Quite often it is the caregiver complaining that others in the family don’t help or don’t get involved.  The caregiver assumes that no one else cares about them or the loved one and while that may sometimes be the case, I think quite often there is more to the story.

There are also times when a family member is upset that the caregiver won’t discuss the situation with an open mind and lashes out at them so they back away. Again, there may be more to the story.

Neither situation helps anyone involved.  There is probably common middle ground but getting there may be difficult to navigate when the caregiver is in the trenches and the others feel outside and unheard. 

As I’ve said before, my family is great.  I communicate through this blog and when I need to communicate quickly or in more detail, I send an email to them all.  They were supportive when Mom was living with us and continue to be since she has been living at the ALF.  My sister would spend weekends with her when she lived here so that we could get some time away and now she visits Mom several nights a week, helping Mom eat her dinner and keeping another eye on her care. 

Do my brothers visit like my sister and I?  No, but my oldest brother has overall POA and handles all of Mom’s finances and I know all of them will be there if we need them and because of that, I feel comfortable in my role overseeing Mom’s care.  Although I make all of the day to day decisions for her care, I’m not alone in any decision that I want or need help on.  I always know my sister and my brothers are there.

Mom was our example to follow.  She did it well.  She did everything in Daddy’s best interest and accepted it when we had to bring something to her attention.  For example, she wasn’t happy when I told her Daddy couldn’t drive anymore but she had no experience driving so she accepted my opinion and Daddy stopped driving.

I wish everyone’s family would be like mine.  That isn’t the case but I do pray that others will try to find common ground.

She's telling me a great story!

The lessons we learn…

Many of us probably remember saying things such as, “When I’m a parent, I’m going to do things different than my parents did.”  It’s not an unusual thing for a young person to think when they are upset about being disciplined or being told no when they want to do something.

In my case, I really can’t remember feeling that way.  As a matter of fact, I raised my children the same way I was raised and as grandparents, my mom and dad treated their grandchildren the same way they treated their children.  I really appreciated that when they were taking care of my children when I was working.

As the years went by, I continued to learn from my parents. I learned about loving and caring – something that seems so easy but really must be learned because as children we are very self-centered. I learned about handling money, making decisions, raising and disciplining children, having a good work ethic and so much more. I made mistakes, of course, and continue to but I also was taught to learn from my mistakes – life lessons, I like to call them.

Mom is soon to be 99 years old and she is still teaching me. No, she isn’t who she used to be. I can’t go to her and ask her how to make a pattern fit me properly or how to knit or crochet. That information is all lost now. There are still lessons to be learned though.

I watched indirectly as Daddy went down the path of Alzheimer’s. I’ve been watching Mom journey through dementia. I’ve also watched from afar as my former mother-in-law has dealt, for over 14 years, with the aftermath of a traumatic bleed in her brain. I’ve watched as my husband’s parents have aged.

When Daddy died both he and Mom were 71 years old and Mom was relieved he was somewhere better and no longer experiencing the Alzheimer’s. Although she was ready to join him whenever God was ready, she continued her life and kept busy for many years before dementia set in. Her journey continues with no end in sight but thankfully, she has made it to the point where she is content and happy to just sit and snooze or watch what is happening around her and sometimes comment on it. She still laughs quite a bit.

My former mother-in-law has a different story because at the age of 48, she lost the love of her life, my father-in-law, when he was just 51. The loss was totally unexpected and she still had three of their ten children at home. She managed to continue but once the children were grown, was ready for God to take her. Fast forward to a fateful day that might have been her last but for a friend taking her to the hospital. Suddenly a creative advertising and marketing person had no words with which to communicate and didn’t recognize her own family. It took years to overcome some of it but not all came back and she has been mostly bedridden for over 10 years. Each morning she shakes her fist at the crucifix because she doesn’t know why God is keeping her here.

My husband’s parents also have a different story. My mother-in-law worked for a surgeon for many years and it was a very good thing! She made sure I was taken care of when, shortly after marrying her son, I suffered three consecutive bouts of flu and my immune system was shot. If it wasn’t for her, my oldest daughter’s emergency appendectomy may have turned into a nightmare because it was a Sunday evening and the ER staff didn’t want to call in a surgical team. Mom (my mother-in-law) called her boss, who happened to be the Chief of Surgery, and within a half hour, he was at the hospital operating on our daughter. We have more stories like those and we certainly appreciate her role in them!

Maybe because she spent so many years in the medical field, Mom and Dad (my in-laws that is), in comparison to my own mom or my former mother-in-law, are very dependent upon doctors. Dad has dealt with cancer and heart issues over the years and Mom has had lymphedema for longer than I have known her. As they have aged, the issues have compounded and there have been times when we weren’t sure what the outcome would be.

So, as I watch how four very different people in my life are handling the winter of their lives, I am still learning. I am formulating opinions about how I want my care handled when and if I reach that stage and how I feel about the end of life.

For now, I’m content to leave it all in God’s hands. I’m sure the plan is in place – we just don’t know what it is.

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.

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

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

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

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

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

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

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

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

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

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

Wheelchairs and Dementia Oh My!

Mom keeps my life interesting!  J  Yesterday evening I received a call from the home.  The nurse, Mary, said that she found Mom sitting on the floor in the doorway to her apartment.  Actually, she saw legs on the floor and immediately thought, “That’s not good!”  Mom was sitting on the floor with her legs out in front of her.  She didn’t remember falling but you have to wonder how she got there.  As I’ve said before, it’s a good thing Mom bounces when she falls…

My husband and I visited today and found that hospice delivered a wheelchair and a commode.  Mom was sleeping in the living room rocking chair she sees as her own.

Although I know what hospice does, I wasn’t sure how the transition to hospice worked within the ALF.  While I left my husband with Mom, I took a walk out to see the nurse to ask.  Mary was on duty again and very helpful.  Initially, she explained, Mom would be encouraged to use the wheelchair.  They really would like her in it with her feet up but they don’t want to upset her.

I thought it might help if I encouraged Mom and Mary said it would be very helpful.  Thank goodness my husband was there!  He put the leg supports on for me and adjusted them for Mom once I got her in the chair.

With Mom on her new mobile throne, we spent the next hour taking her for a ride around the facility.  She liked it and especially her chauffer.  Steve’s a good driver!  J

Steve chauffeured her in 2010 and she enjoyed it again today.

During our walk, we stopped by to see Mary so I could ensure we had the wheelchair leg supports set properly.  While there, Mom’s caregiver this afternoon, Megan, told me that they had been trying to encourage Mom to use the chair but she would refuse and start walking.  They followed her with the wheelchair and she would finally sit down in it when she couldn’t walk any more.  She would then tell Megan, “Oh that feels so good!”  Unfortunately, she would soon forget, stand up and try to walk away from it.  It speaks to their concern for her but it’s really comical to envision them following Mom with the chair hoping she will sit!

I spent some time explaining to Mom that it was her new chair and that we really wanted her to keep her feet up.  She was so cute.  She looked at me and said, “I’ll have to learn that.”  That’s the problem with dementia and Alzheimer’s.  At a moment in time, they can say yes, but just a moment later it has left their mind.  They literally live in the moment.

I know how much Mom needs to use the wheelchair.  She has fallen twice in the last few days because her feet literally cannot hold her up.  She is dragging one leg so badly that the sole of her fairly new slipper already has a hole in it.  I have had to lift her from her chair, her bed, the toilet.  I can get her to her feet and she can stand but her steps are difficult, more difficult than ever.

As we were leaving, Mom had forgotten and was trying to figure out how to stand up.  I explained again that it was her new chair and why she needed it and Megan took over to keep her occupied.  I checked in after dinner and Mary said that Mom was still in the chair and doing fine.  I know there will be ups and downs but I pray God will watch over her as she “learns” this new habit.

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

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!

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

I yelled at her...

I hate to admit it but I’m one for full disclosure.  I’ve done it before in the past 10 months but only a few times.  It’s important, I think, for everyone to know that it can happen.

I could say that it happens because she is hard of hearing and doesn’t wear a hearing aid.  That would only be partially true because under normal circumstances I have to speak loudly and directly to her – something I would also consider yelling.  My husband and my children all speak very loudly – I blame my husband’s booming voice for that J - but I typically laugh loud but talk at a normal tone.  It’s yelling for me when I know that there is frustration behind it. 

On Saturday, we put her through the upheaval again of having my 10 year old granddaughter and my 2½ year old grandson, better known as Hurricane, for the night.  As I’ve said in a past post, we must make this work because I’m not willing to give up my children and grandchildren.  They are all in this wonderful stage of life, ranging in years from 2 ½ to 14.

Hurricane and Great Grandma discussing the rain.

Our afternoon was moving along fine even though I forgot to put Hurricane down for his nap.  He was playing so well it just totally slipped my mind!  As we were approaching dinner time, he was still playing well even as I made dinner but he had toys laid here and there about the house.

Dinner time coincides with the typical time that those with dementia experience sundowners.  That time of day seems to agitate them and Mom has a tendency to be on the move then and often watches me cook dinner.

Given that the grandkids were having a blast chasing each other, I asked Mom to please sit down so that they could play without worry of knocking her over.  I also admonished the kids to be careful.

Her compliance didn’t last long and she was up walking down the hall.  Upon her return to the kitchen, she bent over to pick up toys that Hurricane had left there.  They were already off to the side and I asked her to please leave them alone because he was playing.  She then walked around to the dining room where she bent to pick up other toys that were also pushed back in the corner out of the way.

In the midst of making dinner, I once again asked her to please leave them alone!  She groused a bit but turned toward her recliner in the TV room and I stepped back to my cooking.

Twice in less than 30 seconds I had asked her to leave the things alone.  In less than another 10 seconds, I glanced up from my cooking and realized that she wasn’t in her chair.  Sure enough, she was further in the room trying to pick up the heavy lid of the toy box!  I called, “Mom!” several times but it was as if I wasn’t there.  I stepped over and yelled, “Mom, stop!” to get her attention.  I continued yelling when I asked her to PLEASE leave the things alone and just sit down!

I knew it was shocking for everyone when my husband came out to see what was happening and both grandchildren were standing there staring.

I felt so bad but what was done was done.  Mom sat down, the kids continued to play, we ate dinner and the evening went well.  Mom and I even shared a hug after I helped her with her window blind.  Thankfully, Mom’s memory issues help when I make a mistake.  Even though my concerns were for Mom’s safety, I overreacted, and for the children’s sake I have to learn from this lesson.

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.