Life is Good!

Recently I’ve been struggling a bit to keep my attitude positive.  Well, not so much positive as up.  I’m a pretty positive person all the time but I do have times when I feel like I can’t get a handle on things.  I try to take things one day at a time and go with the flow. 

When a new issue pops in, however, that’s when I typically get lost for awhile as I adjust to it.  It’s hard to avoid wanting to control it but in the role of caring for my mom with dementia, I have to avoid control and instead work with the new situation.

If you’ve been following my blog, you know that Mom has been getting up earlier and getting dressed before I am even out of bed.  It used to be so nice – I would exercise at 6:00 am and she would get up sometime between 6:00 and 7:00 so that by the time I had breakfast ready at 7:00 she would be ready to eat.  No more.

There were issues that had cropped up – light on all night, sleeping too much and too hard during the day.  My caregiver forum buddies and my Alzheimer’s coach had great advice and I was able to put much of it to use.

But none of the changes solved the problem of Mom getting up too early.  When you can’t solve a problem, it becomes difficult to avoid the urge to control and instead work with the situation.  I did some fretting about it and even let it doubt my ability to take care of Mom.  All of that led up to a few sleepless nights and the urge to “runaway, runaway!”

This morning after a few more chats with my forum buddies, it hit me!  I’ve been beating myself up about this but the situation is still better than before she moved in!

No offense to my brother because Mom lived with him and his family for 24 years before she came to live here.  He put up with a lot in that time, especially in the most recent years, and I don’t know how he handled it so long.  The last couple of years at least, Mom was going to bed at 9:30 pm or so and getting up at 7:30 am but she was up every hour, if not more, during the night.  She would even open my brother’s bedroom door to check on him or if there was a light on in another part of the house, she would go investigate.  She was up and wandering at night and sleeping a lot during the day. 

So, yes, it is inconvenient that Mom is getting up earlier than me.  Truth is, though, she is getting more rest than she did at my brother’s and actually sleeping better at night than she did there.  In spite of the new development, keeping her active is improving life overall.

Consequently, life is good!

Respite is Critical!

I must start this piece by saying that I’m not feeling sorry for myself, nor do I want pity.  Talking about caregiving, however, would not be true to life without talking about this subject.

As each day progresses, I realize that I’m hitting a critical point.  I have not, since October 24, had the opportunity to wake up in the morning without taking care of Mom.  We even took Mom on our vacation so I was just in another place, although a place I love; doing the same thing I do every day.

Prior to October 24, since May when Mom moved in, Steve and I had managed to get away for a weekend, or a long weekend, once almost every month.  My sister Pat came to stay with Mom and I had the opportunity to get away and be me and sleep in if I wanted.  I could read a book other than in bed at night, we could stay up later than normal, we could visit with friends without concern that Mom would want to go home.

Luckily, I have never been one to want to go out a lot.  I was also the mother that took my babies and children everywhere with me.  Consequently being a homebody with Mom and taking her everywhere with me has not been a problem.

But even as a young mother, I would occasionally leave my little ones with Mom and Daddy or my sister Pat (how appropriate!) and have the opportunity to sleep in or have a quiet morning without them.  As the children grew older we kept up that habit because it’s a chance to recharge and remind ourselves of all the wonderful reasons we got married.

So now, other than a few hours here and there when my daughters or my sister or my husband have stayed with Mom, I’m looking at 66 days of getting up each morning and going to bed each night with Mom the first and last thing on my mind.  Honestly, I’m ready for a break.

The good news is that we already have a plan in place – something I can look forward to just a little over a week from now.  Pat will come here to stay for the weekend so that Steve and I can get away.  It will be just two nights and two days but they will be ours to do with as we please.

The other good news?  Whenever I return from a weekend away, I’m always so happy to see Mom!  You see, it’s not about disliking my life or what I’m doing at this point in my life.  It’s just about having a little bit of time to be just me so that when I get back, I can be a better me with Mom.

Time to Go to Bed and Stay There!

Another interesting few days.  Seems they are always interesting when dealing with Mom, four children and five grandchildren!

Although holidays can be a trying time for those with dementia, I think we managed to get Mom through it.  She had a great time seeing her family and seemed to enjoy spending time with my in-laws.  She loves the babies!  I think the highlight of her time with my in-laws was watching our little grandniece play.  She was absolutely adorable and never failed to give Mom a huge smile.

One issue we ran into had to do with the opening of presents.  After our Christmas, Mom looked at Steve and said, “Did you tell them it’s my birthday?”  Steve explained that it wasn’t her birthday and she got quite testy.  We realized later that she probably said that because we didn’t make sure she had something to open.  My mother-in-law, always thoughtful, was kind enough to have a present for her there and we heard no more about it.  Looking back, I wish I would have done something but as we all know, hindsight is 20/20.

The last two mornings have been a true test of the nightlight in her bedside lamp.  We also put a timer on her big lamp so that she can only turn it on between 6:30 am and 10:00 pm.  She hasn’t slept in by any means but Monday she dressed after 6:30 and today she dressed after 6:00.  She didn’t mention the light not working until I took her in her room later for some daily care and turned on the light.  At the time I just told her it was working and went on.  At some point I’ll have to tell her that if the light isn’t on, she shouldn’t get up.  That should be fun!

Mom will quite often tell me that “I just need to quit talking” or that “I need to go to bed and just stay there.”  My response is usually, “You keep telling me that but I’ll believe it when I see it.”  I know someday we’ll get to that point but for now, I continue to hear a lot of harrumphing if I don’t keep her busy enough.  So, I’ve been trying to get her out each day, even if the weather is cold. 

Today I had the chance to turn the tables on her.  We went to the grocery store and parked in a handicapped spot so we were close.  I picked out one of the smaller carts for our trip and when we got inside, she asked me when I was going to put her in.  I said, “In what?”  She looked at the cart and said, “I thought you knew I wanted…”  I asked her why she needed a chair and she replied, “So I’m not on my feet.”  I told her if she couldn’t walk around inside the store then I needed to take her home and put her to bed for good.  Her response, “Well I’m not ready for that yet!”

Good That We Don’t Live in Alaska!

I mentioned the other day that Mom was leaving her light on at night.  We finally hit a critical point where Mom was waking up earlier every day.  During the day she would sleep so deeply in her chair that she thought it was the next day!

It became obvious that the light at night and the gray days were causing her internal clock to lose the difference between day and night.  As a caregiver, that is NOT something that you want to happen when dealing with someone with dementia because caregivers need sleep too!

But how to get Mom to turn off her light like she used to?  I have a couple of resources at hand when issues arise.  I have an online coach from the Alzheimer’s Association and I also belong to the forum on Aging.com.  In this case, I needed lots of different ideas from caregivers so I went to the forum.  I put the issue out there and very quickly received several responses with lots of suggestions that have worked for the other caregivers.

My first thought was to remove Mom’s bedside lamp but she didn’t respond well to that!  One caregiver suggested we replace the lamp’s bulb with a 15 watt bulb so that the light would be dim enough to eliminate the issue.  That seemed like a good idea in that she wouldn’t be cussing at me for taking the lamp away!

Steve headed to Lowe’s and picked up a 7 ½ watt regular bulb – wow!  We didn’t know they made them!  He brought it home and put it in the lamp and I was able to put the lamp back on the bedside table and tell Mom she could keep it on all night.  It gave a nice low glow so that she could see when she needed to go to the bathroom.

The next step was to get her back on the right schedule.  Thankfully we had the new bulb in place on Christmas Eve.  We went to the store and then off to one of our family outings where we kept her awake for a good five hours, right into the 9 pm hour.  We took her home, gave her frozen yogurt and kept her up until 10:00.

On Christmas day we repeated the process but without the store.  We celebrated Christmas with Mom’s family – mine too, of course – and kept her busy and happy there for a few hours.  We finished the evening at Steve’s brother’s house and finally headed for home going on 8 pm.  Frozen yogurt, a little TV and Mom was off to bed at 9:30.

So far so good!  The next few days will tell.

All I can say is I’m sure glad we don’t live in Alaska where they average 4 to 6 hours of daylight this time of year and 18 to 24 hours during the summer.  We’d have to put her in a room with artificial day and night!

Love One Another

As an infant, my mother was adopted.  Her own mother had died and her father had three older children to care for so he allowed my then childless Grandma and Grandpa to adopt her.  They kept in touch and when Mom was 16, she met her family.  The great thing was that I grew up with three grandpas!

As a small child, Mom and her mom and dad moved around a bit, even spending some time in Florida.  When they returned, they lived in an area of Cincinnati helping their family to run a hotel.  While there, Mom’s best friend and playmate was a young black child.  It was there that the seeds of racial understanding began to grow and later influence my family.  Growing up, Mom and Daddy instilled in us a love for all people, no matter race, color, or creed.

That lesson came back again last night – and what better timing than in the last hours before Christmas!  Mom and I had done a little shopping and stopped at Frisch’s for dinner where Steve joined us.  As we waited for Steve, our server, a beautiful young black woman by the name of Katrina welcomed us and took our drink order.  In the conversation I told Katrina that Mom is 94 and she very kindly gave Mom a little hug and told her that her own grandmother is 97 but doesn’t move around nearly as well.  At that, Mom smiled and told her about her friend from her childhood.

Steve arrived and we ate our meal and as we were leaving, Katrina was working at the station by our path.  She warmly wished us a good evening and a merry Christmas and as if as one thought, she and Mom both reached for each other and gave each other a hug and kiss.  I thanked her for her kindness and wished her a merry Christmas too. 

It brings tears to my eyes even now as I think about it.  She had told us earlier how blessed we were, not realizing she was one of those blessings.

So, as you go off to enjoy your Christmas festivities or any other holiday that you celebrate, please remember that the most important thing of all is to love one another.

Is it the Full Moon? Or Winter?

Mom seems to fade in and out the last few days.  At one moment she’s telling me what’s outside and the next she’s walking around looking for something and says she doesn’t know what she’s supposed to do.  She loses the time of day and thinks she has already eaten a particular meal when she hasn’t or that she hasn’t when she has. 

Is it the full moon?  When she first moved in, we noticed a pattern around the full moon.  She would get very combative at times and extremely confused and delusional.  Now, thankfully, I don’t see the combative as much because I’ve learned to avoid it.  The confused and delusional is there on a daily basis but ramps up sometimes to extreme.  We’ve learned to deal with that also although it can be trying at times.

One thing we have noticed is that she is leaving her bedroom light on all night.  She used to just turn it on when she was going to the bathroom but now it’s on all night.  I think she thinks it will add heat to the room and I know there is no use arguing with her.  I haven’t managed to get her to put on an extra blanket for the winter. 

I’m not sure if the light is keeping her from getting a decent night’s sleep but lately she has been getting up VERY early (I’m very thankful for the gate in the hallway!), dozing a lot during the day and wanting to go to bed before 9:00.  I’ve told her she has to stay up until at least 9:30 the last couple nights hoping that it would help her sleep a little later in the morning.

I think the bigger problem is the gray/cold weather.  We don’t have the opportunity to walk outside as we did during the spring, summer and fall.  Although I am happy to take her to the mall or a store to walk, the unusual amount of snow we have had this month has made that more difficult and our winter is predicted to continue the trend.

Unfortunately, the term “winter” has no meaning for her anymore and it’s not unusual for her to think she can go walking outside when we have a sunny day.  I find opening the door quickly takes care of that issue.

Today she woke up and seemed to be fairly with it.  We had breakfast, managed to get the bathing done and then went to have her hair shampooed and cut.  By the time we returned, her mind was gone again.  I guess we’ll see what the rest of the day brings.

Mom is Bored!

Yesterday, definitely due to the gray days and maybe because of the full moon, Mom was bored!  Along with bored came Snippy Mom – not really bad or mad but not really satisfied either.

She was up and dressed before 6:00 am – have I mentioned that a caregiver never gets to sleep in?  By the time I exercised and began getting breakfast ready within our normal schedule, it was easy to see Mom was getting impatient.  Lots of clearing the throat and harrumphing were coming from her direction.  When I put her breakfast on the table and told her it was time to eat, she didn’t understand me and said, “I’m going to have to write a letter to my family and ask them [about paying for this].”  The words at the end were quite jumbled but it was easy to understand she was talking about money.  So maybe she thought the service wasn’t what it should be?  Too funny!

As the day progressed, Mom spent little time sitting, instead moving from window to window most of the day.  I couldn’t seem to get her interested in any activities and she kept sighing as she moved around.  She was bored!  That may not seem so surprising but Mom taught all of her children and grandchildren that there was no such thing as “bored” because there were just too many things that a person could do.  Unfortunately, when I mentioned to her that she was bored, she told me there just isn’t much that she is able to do any more.  That is one of the sad states of dementia.

The one thing she did ask numerous times yesterday was if we were going to the store.  She was concerned that there were only two bananas in the bowl and that we had to go get more.  No matter how many times I explained that two would be plenty for the morning and we would wait and go tomorrow she continued to worry that we would run out.  Under normal circumstances I would have said, “Let’s go,” but since we had just received almost two inches of snow again, I really didn’t want to get her out yet.

When my husband came home, we decided to get her out of the house.  We went to Max & Erma’s for dinner and then headed to Ollie’s where I walked her all around the store.  She complained a bit but we made it through the entire store.  I think it helped the restlessness a bit.

Before bed, I told her that she should stay in bed until 6:30 because typically I am up at 6:00 to exercise and by 6:30 I am getting breakfast ready.  It worked and breakfast this morning went smoothly.

Today I will take her to Jessie’s for a visit while I go to an appointment with my allergist.  That should give her a nice break in her day because the boys are home from school and there are lots of animals to pet!

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”.

You can sing all you want!

Many parents learn quickly that children can feel and will react to tension around them.  The same goes for those suffering from Alzheimer’s.

Recently there have been a few situations that have created tension in our home.  Steve’s work has been very busy and the holidays and a few extra family celebrations have added stress here and there.  Luckily, we’ve both been on the same side of the situation so we at least have each other to lean on.  Mom, however, cannot understand what is happening so for her the atmosphere is just charged with tension.

When our stress spills over, we are not as patient as usual.  We might make comment to Mom about things we might normally let slide.  It has happened a few times lately and the reaction was not good!

Just yesterday, my tension was continually rising as the day progressed.  I was trying to get various computer projects finished and my printer started acting up.  Then I was getting messages that there was a problem with my USB port.  Eventually, after turning it off and on multiple times, none of my USB ports were working.  Good thing I used to use keyboard commands because no USB meant no mouse!  As that was happening, my phone was also dying and had to be plugged in and if I needed to make a call I was tied to the wall.  While I was on the phone, of course, Mom decided she was going downstairs by herself – a big NO NO!

In my tense state, I found her halfway down the stairs and turned her around and told her never to do that again because she could fall.  Sullen teenager appeared and the conversation that followed was not pretty as I told her that she had already broken a wrist and ribs in the past and she denied it.  When I told her that indeed she did and I was the one that took her to the doctor to get her “fixed”, she went to the window and began singly loudly and off key (she’s tone deaf) and continued for quite some time.  My parting shot – “You can sing all you want but it won’t change things!  You cannot go down the steps by yourself!” 

Yes, she had done something that in her current situation was dangerous but it was only a reaction to my mounting tension and the resulting lack of attention to her.  Had I been doing my normal routines, she would not have gone down the steps because we would have been busy together.

Will I tell you that I’ve learned my lesson and this will never happen again?  Lord, no!  I have learned my lesson and I will do my best but life is what it is and at times it will bite me in the butt!

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!

Patience is a Virtue

My once very laid back Mom is not the most patient person these days.  It’s actually comical when we’re sitting at a traffic light.  She’ll tell me that there are cars coming, letting me know that I can’t go.  Then when all is clear, she gets quite upset at times that I don’t move.  I direct her attention each time to the traffic light and explain that it has to be green before I can go.

Another example of impatience has to do with meals, whether at home or restaurants.  She begins asking me about dinner around 4:00 pm expecting me to get up and start making something.  Typically I don’t have a reason to start dinner until 5:00 or after, with an expected eating time of 6:00.  But, as with her frozen yogurt at night, she will begin a countdown.  If I have a quick meal to make, or leftovers to heat up, oh my goodness!  She huffs and mumbles right up until I finally start cooking.  It can get exasperating at times but mostly it is just comical because we eat like clockwork around here.  At 6:00 she is sitting at the table with food in front of her.

As I’m writing this, she keeps asking me when it will be time to get it ready.  I just told her 45 minutes and she repeated it and said, “I don’t understand it.”  I assured her I would take care of it.

We went to dinner last night with Steve’s family at a restaurant we’ve never visited before.  It was a fancier restaurant than we normally frequent – Max & Erma’s is our favorite – and Mom asked me if it was “higher”, meaning more expensive.  I confirmed that it was but what I didn’t mention was my real concern of getting food in front of her so that she would be satisfied. 

She loves to go out and pouts greatly if I go anywhere without her, but the patience thing jumps in when she’s with us.  Once they take our order I think she expects the food to magically appear.  Last night was even more difficult because we didn’t meet at the restaurant until 6:00.  So, as quickly as possible, I ordered an appetizer so that she and I could split it and it would give her something to do.  That worked well but given the fancier restaurant, service is done at a slower pace.  Salads were presented to some at our table and Mom wondered where her food was.  Dinner finally arrived and she, as usual, cleaned her plate.  Patience jumps in again – “Is it time to go home?”

Today she’s been marveling again at the sun shining behind the clouds and blue sky.  She’s been so excited that she sits on the edge of the chair and calls me over to look constantly.  Words are not coming to her or the wrong word comes out (red for blue), “Sky is good and fresh.”  She’s happy though and that’s what counts!

The Newspaper is Alive?

Yesterday afternoon we took Mom to Dillon’s Christmas band concert.  Dillon is a drummer and doing a great job!  Mom enjoyed the concert, bobbing her head to the music.  At home later in the evening, Mom asked me, “Now that we did that, do we take that thing down out there?”  She was referring to the Christmas tree in the living room.  I guess she thought the concert was Christmas!  I had to deflate her bubble and tell her that it would be up the rest of the month.

Mom’s been fascinated all day today by the clouds, the sky and the snow.  It began with our living newspaper.  It was lying in the driveway at the end of a little skid mark in the snow where it had slid when thrown.  Mom told Steve it had moved there on its own and that it was still moving.  She called me to the window and said, “Now watch, see how it stands up?”  The free end of the plastic sleeve would fly up with the breeze then lay back down.  She said, “It stands up and starts to move but it gets too cold and goes back down.”  Gotta love it!!

The next excitement was Steve using his new snowblower.  I knew Mom would be excited about it and she didn’t fail me.  She watched as he did the driveway and the sidewalks and when he was done, declared it a great job.

As the day progressed, the sun came out and the beautiful blue sky began to show itself.  Mom called me over time and again to “Look at that blue.” or “See how bright the sun is?”  Sometimes she would have the word sun at the tip of her tongue and others it just wasn’t available to her.  “That thing” comes in handy as a substitute when words are missing.

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?

Timing is Everything!

(Originally written on November 24, 2010)

One evening as we were sitting watching TV, our normal routine between dinner and bed, Mom asked me what time she should get up in the morning.  “Six thirty”, I replied.  “What?” she asked.  “Six (holding up six fingers) thirty”, I said.  Mom’s response, “Well, I just don’t know what to do with that.” 

While I was growing up, Mom had us all on a set schedule.  At 5:30 am the cow was milked, breakfast at 6:00, Daddy left for work at 6:30 and the kids caught the bus for school.  Dinner was served promptly at 6:00 pm and homework was done in the evening – no TV!  Things changed a little after Daddy retired but the adjusted times were the same each day and dinner always at 6:00 pm.  The regular schedule was a godsend I’m sure as Daddy’s Alzheimer’s progressed. 

Having been raised that way, it was easy to slip into a regular schedule as my children grew.  Now, with my children grown and raising their own families, I am still following a regular schedule because it provides Mom with a constant routine.  Breakfast at 6:30 am, a snack at 9:45, lunch at noon, snack again at 3:00 pm, dinner at 6:00 and Mom’s frozen yogurt at 8:00.

Between the meals and snacks are the various activities that change from day to day.  Some Mom likes such as working puzzles and going to the grocery store and others not so much, like bathing.

In spite of the regular schedule, time can still be an interesting topic of conversation because the dementia causes Mom to lose time.  Each day she will ask what day it is at least once and throughout the day she will ask the time but she doesn’t actually connect the response to anything in particular.

While on our recent vacation, we learned the impact time can have.  We kept Mom busy but on the normal schedule throughout the week and each night she slept well in spite of being away from home – except for one night. 

The electricity had gone off sometime during the night.  I reset our clock during the night and went back to sleep.  Very early in the morning I heard Mom in the living room and she soon yelled, “Is anyone getting up today?”  We soon found she was up and down all night because her clock was flashing 12:00! 

In spite of the dementia and anything else that may be going on, there is one time of day that Mom NEVER forgets.  Beginning at 7:50 pm, sometimes as early as 7:00 pm, she begins reading the digital clock to me.  “7 2 3”, she might say.  She also might say, “Isn’t it time to get…” and then, because the words don’t come, she points to her mouth and wiggles her tongue.  For Mom, every evening no matter what, the TIME has come for her FROZEN YOGURT!

Vacation? Are We Crazy?

(Originally written on November 23, 2010)

Most caregivers would rightly tell you that taking an elderly person with dementia or Alzheimer’s on vacation is a BAD idea.  The trauma of traveling and living in a different location for even one night can set off all sorts of behavioral issues.

In spite of that, my husband and I decided to take Mom with us for our week in the mountains.  It’s close enough to drive in five hours (normally) and our little tree house there has a second bedroom and bath just for her so we thought it might work out.

It was a much needed vacation.  We’ve greatly reduced our weekend camping and skipped a summer vacation since bringing Mom to live with us.  We weren’t willing to give up our timeshare week.

That left us with the issue of Mom’s care.  Family members work or have children so outside help would be needed if we didn’t take her.  Although I checked into in home respite care, like a parent of young children, I had no desire to suddenly throw Mom in the hands of a stranger.  

Decision made, I packed surreptitiously so Mom wouldn’t suspect.  Better to let Mom know the morning we were leaving rather than letting her work herself into a frenzy.

The drive, as expected, took longer than normal but went well.  Mom snoozed, watched the scenery and enjoyed our stop for lunch and snacks. 

Given her dementia, she settled into her temporary “home” pretty well.  We brought her bedside lamp and the roll around foot stool that she uses when she watches TV to make her feel at home.  She struggled with the queen bed a bit because she is used to her twin but once I helped her turn down the covers each night, she would settle in just fine.

Our wings were clipped a bit because many of our typical activities were unsuitable for Mom.  We still managed to have a great time!

The highlight of the week was the visit of a cockatoo from a nearby bird attraction.  Didi, a beautiful white cockatoo, ran across the table and right up Mom’s arm to rest on her shoulder.  Didi then proceeded to preen, even feeling comfortable enough to stand on one leg on Mom’s shoulder so she could reach some hard spots.  Mom loved the attention and talked so quietly to the bird, showing no fear at all.

Mom also enjoyed a few meals out including a potluck with music by three gentlemen we have known for a long time.  Friends staying close by spent an evening and day with us and we even put Mom in a wheelchair and took her shopping and to the national park for a visit to their museum and a walk outdoors.

Did the week go off without a hitch?  No, but it was still enjoyable. 

“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.

Woo Hoo! Bath is Done!

(Originally written on November 8, 2010)

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

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

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

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

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

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

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

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

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

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

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

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

“I’ve Been Doing This All My Life!”

(Originally written on October 20, 2010)

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

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

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

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

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

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

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

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.

Walking a Fine Line

(Originally written October 17, 2010)

You might think that the majority of people want to live as long as possible.  I’d love to see statistics on that – well, maybe not.  You see, I see both sides of the picture. 

On one side, I have my mother and father-in-law, 86 and 88 respectively, who despite a myriad of health issues that include TIAs, cancer, diabetes and more, are doing everything possible to live a long full life. 

On the other side, there is my mom.  At the age of 71 she lost the love of her life, my daddy, to the ravages of Alzheimer’s.  Not long after Daddy died, Mom began saying that she wanted to go to sleep and not wake up so that she could be with him.  Unfortunately for her she has been, and still is at the age of 94, physically healthy.  Fortunately for her, she has always enjoyed the company of her very large family so while she missed Daddy, she was still happy.

Mom’s mental health has declined over the years and she is now deep into the stages of dementia.  After living 24 years in my brother’s home, the time came when she could no longer be left alone for fear that she would fall and get hurt, burn the house down, or any other thing you really don’t want to happen.  She had already broken a wrist and more recently a couple ribs and yet in neither instance could she tell you what happened.

With Mom’s safety on my mind, I left my job of 21 years to stay home and care for her.  I was lucky enough to meet the retirement requirements of my company and also was able to make the transition easier through a severance package lasting almost a full year.

I started out just going to my brother’s to spend the day with Mom while he was working.  I was enjoying my time with her but quickly realized that her dementia had progressed to a point where she needed someone to handle her care 24x7.  My wonderful husband suggested we move her into our home and in the span of a week, we prepared a room for her and moved her in, providing my brother some much deserved relief.

So now, five months after I started this journey, I am walking a fine line.  My goal each day is to keep her comfortable and happy and while that includes maintaining her physical health, I keep in mind her wish to join Daddy.  At present, she is fighting a cold.  I watch for signs of pneumonia and ensure her comfort through it but take no unnecessary measures just to prolong her life.  She is still physically strong and gaining ground against it each day.  But I can’t help but wonder, “Will this be the one that finally takes the toll?”