After nine months, everyone around Dorothy knows her, the residents, the resident’s family, the nurses, the staff-even some of the movers – who are constantly moving people in and out.  She is in a fun, safe environment. 

She has settled in-she has her group of friends, she laughs, she is helpful to those who need her.  Her friends are easy going with her and they seem to overlook the forgetfulness- or they all have the same problems and it doesn’t matter.   She goes to morning exercise class-sits in on the fireside chats-attends the current events circle -goes to color time- she is engaged. But, she doesn’t remember any of it.   The interesting thing is – she does not want us to know she is enjoying herself.  

I was there this past Friday to pick her up for “our Friday” and she was sitting among a group of 12- around the fire- having a fireside chat.  She did not see me come in or even walk towards her.  She was totally engaged with the group.  She has a huge smile upon her face, her eyes were gleaming, she looked so peaceful and happy.   

She doesn’t look like this very often when she is with me or my brother.  She puts on the sad and lonely face and is downtrodden.     

 I made myself a “shadow in the shade” (love this line- from an excellent song by an excellent artist- Mishka- you can only listen to it on Utube- check it out-it has nothing to do with Dorothy) and just sat back and observed.   In those moments Dorothy was Dorothy, the mom I’ve known all my life.  In those moments- her spirit was bright, her soul was engaged, her life was good.  To be able to see this first hand- gave me reassurance that she is in the right place and that she is okay- it lifted my spirits. 

If you are the listener for a demented or sick loved one -most of the time all you will hear is the negativity – and it’s usually because they trust you enough -to let pass their pain and sorrow to.  You are their trashcan- they know that you are strong enough to let them dump it all on you. they know you will know how to dispose of it.  In some ways this is an honor- doesn’t seem like it – but I’m sure it is.

On the rare occasion that you get a glimpse of the past from them – linger there as long as you can- I’m pretty sure it’s a God wink.  (-:

Peace & Love,

Cheryl Doreen

It’s Saturday-  I spent all day with mom yesterday, and today my brother took her out for a few hours. She has called me a total of six times today.  Below is every word she said on the last call.   I’ve typed it just as she has spoken it.   It’s Sundowners time and so, I don’t say much- she controls the entire conversation- – sort of like a teenage girl.  (-:

Have you talked to your brother about me coming home?   I worked hard to pay for my house and I feel like I should be able to live there.   I’m almost at the point where I might need to go see a lawyer.   

I don’t like being up here in this place in these two rooms -in this place, where I don’t know anybody. I just don’t understand why I’m being treated this way. I don’t understand what I’ve done to anybody – that would put me in this situation. I just don’t understand it.  I don’t know, maybe I’m …………..

I just don’t know, I’m just really frustrated, disappointed and upset.  At the way I’m being treated.  I may not have been a very good parent, but I don’t think I was as bad I’m being treated.   I fell pushed aside- pushed away, you don’t deserve anything that you’ve done for yourself. That’s the way I feel.   I don’t know.  Maybe I don’t eh…eh…. eh….. understand -you know, I thought that I did a fairly decent job of keeping you children taken care of after dad died.  Even though I made a mistake and got married again, I corrected that mistake after a while.  I’m not the only person in the world that made a mistake.  I don’t know.  I don’t understand his attitude.  I just don’t understand it, maybe you can explain it to me.  He put me out of my house and put me up here in two rooms, you wake up one day and you don’t know where you are- no discussion-nothing, I don’t understand.  It’s my house, I paid for it, you know, I don’t’ know, why would I have to move, I don’t’ understand, anyway 

Me- calmly and in a soothing voice-“  mom, what would you say if I told you that you told us it was time for you to go to Assisted Living and that you picked the place you are in”?

I would say I don’t remember that.  I think I was here before anyone said  anything about me having dementia. Maybe I just don’t know, maybe I have dementia and I don’t understand what is going on.  

I don’t get lost- I know what I’m doing when I’m doing something -I know how to get from one place to another- I remember how to do things that I’ve done all my life.   People with dementia aren’t cognitive all the time. They have periods of not knowing what they are doing or where they are at- or what’s happening to them.  I think I pretty much know what I’m doing all the time. And what’s happening to me all the time.   I know it’s happening to me Did some doctor say I had dementia?  When was that?  I wonder if I should be tested again.   Do I need to make an appointment?  I don’t’ remember ever talking to a doctor.  But, I do remember someone coming into my house and making me drink something that I didn’t know what it was, it was two young boys that came in and one of them held me down while the other one poured something down my throat.  Then they left, I don’t know what happened after that.  The next thing I remember is waking up here.  I don’t remember how I got here. When did I see a doctor how does he describes dementia-    I remember what I did today, I walked today, I ate breakfast lunch and dinner.  If someone came to see me today- I don’t remember it.     I just don’t remember.  

Me:  Mom what did you do today? Did anyone come see you  What does your journal say? ( another great idea is to have them a journal in their room – that you and their other visitors can write in, – something you can direct them to when needed).  So, who was here today?  I don’t remember.    Who was here today?  Why don’t I remember. Yep  I see where Paul was here today he took me to Walmart.   I think I remember doing laundry yesterday-   so I’m just going to be crazy and be here the rest of my life.  Ok- I’ll try to behave and do the best I can.    Somedays it’s real scary here.  Well, is there anything else going on?    This TV has a different channel set up- but, I’m learning it.  I guess I’ll have to be here the rest of my life.  I wonder if there is some kind of medicine or liquid or powder or something that I could take like mix it up in water or something and I could just fall on the floor and not wake up.  I’ve been thinking about that —- but, I’ don’t know how to do that.  I do know that this is not a lot of fun.  But, I’m not the only person in the world trying to survive it.  I’d really like to go back to my house- but that will probably never happen.  It would be cheaper.  I could get out – get lost and fall in the creek and drown.  I don’t know, I guess you have to accept what God has planned for you and just deal with it on a daily basis. I’m just going to be as happy as I can be and live in the moment.  And, if I don’t have a next moment I guess it will be ok.  How does that sound.  I think I could go home though- I don’t think I’ve wondered off, I have a home that I can go to and live in.  I mean-nobody has ever even said hello to me here, it’s a sad place to be.  I might take a pen and paper with me tomorrow and if someone talks to me I’ll write it down.   But, it could be that I’d forgotten, I just don’t know.  Sometimes I take a walk- I’ve walked every day since I’ve retired.   So anyway, it’s not fun getting old I wished I’d have lived wild and crazy and died young like dad did.  He was the lucky one.  

But anyway, when it’s your turn- it’s your turn.  I don’t think you can push it or stop it. It’s not fun waiting your turn.  Tomorrow will be happy day.   I had a fun day today- Jan came to see me – she brought me, something-but I don’t’ know what it was.  I’ll hang up now, so you can get back to what you were doing. 

I love you- bye

Some evenings this is exhausting- but that’s okay- she needs someone to talk to- and I’m here for her. So, I just breathe.

Peace & Love,

Cheryl Doreen  

The week before it was time for Dorothy to move into the Assisted Living my brother and I met up with some-lifelong friends from Ohio and Georgia in Gatlinburg.  Yes, we share some of the same friends (-: <3.  

It was a beautiful, fun weekend- the perfect distraction for what we were about to go experience.  I tagged along with our Ohio friends one afternoon- over to a gallery. The paintings were amazing, the artist, Abraham Hunter, is a young man from the Knoxville area and he’s a very pleasant soul (we were lucky enough to meet him) an so full of talent.  When I saw his Hummingbird with Iris’s painting- I immediately thought of mom. She’s always loved hummingbirds and always had a feeder up for them.  And she always grew Iris’s-  it was a perfect gift for her.  So, I slept on it and went back the next day- with my friends and purchased it for her (my friends also purchased one of his paintings).  I gave it to her on Mother’s Day and it’s the only painting in her living room- actually, the only thing on any wall.   To be honest -it’s a gift for me as well- as I will enjoy it in my home when she’s gone.  

My brother and I both took the following week off- to prepare ourselves and mom -for her next chapter in life.  

She had already picked out her apartment a few weeks prior- you are on a waiting list for most Assisted Livings- in Georgia anyway-  sort of like a waiting list for Kindergarten.  

We spent the week assuring each other- as much as mom that we were doing the right thing.  As I said before, it came down to her safety. 

She decided what furniture she wanted to take.  At this point it’s not about what they need it’s about what they want.  She knew this was probably the last time she would move and have any control over what she wanted.  So, she was very strategic in her choices- she wanted to keep it simple- didn’t want to overpower the rooms with “stuff”.

She didn’t want to take her queen-size bed with her, she said it would take up too much room.  So, we went shopping for a day bed- one that would look nice and push up against the wall -longways, so she would have more room in the room.   We went shopping for new bedsheets and a bedspread- she knew exactly what she wanted. 

She chose her “old” chest for her clothes and wanted to take her rocking chair.  This is all she took for her bedroom.  She did not want to take any pictures with her- but, I took her framed Angels, I knew they wanted to be with her and that she would want them around.  I also took some framed photos of the people she surrounded her life with, dad, their children, some knickknacks from her collection and pictures drawn with love from her great grandchildren.   It wasn’t until several month later that I took in a bulletin board and filled it with more photos of her past and memories of her history.

Note:  take a photo of how the dresser/chest is decorated- and also the bathroom sink.  Duplicate this in their new place.  It will look familiar to them and help with the change.

She has a loveseat and a reclining rocker in her living room- along with the Hummingbirds.  A small desk sits up against the wall with the TV on top.  There is a Frog that sits in the corner watching over her.  It doesn’t sound like much- but, it’s very comfortable and homey. Just like mom.

Peace & Love,

Cheryl Doreen

I must admit- my brother and I were in denial about Dorothy depression.  It was like, What? Why? – No. 

Mom has never been on any medication- healthy as a horse, of course.  She was pretty adamant and made us promise to never put her on anymedication.  So – we promised.  She saw first -hand what meds did to the people she cared for- they blocked their ability to be themselves.  Dumbs them down, more that they deserve- moms words. 

After a few months in the Assisted Living, we noticed she was still agitated- didn’t think anything about it- we’d be agitated too- if the roles were reversed.   We (my brother, mom and I)- had a visit with the facility doctor- she suggested we put mom on anti-depression meds.  Of course, we had said no – how could we?- we had made a promised.   The doctor was a little frustrated with us- she told us that it would help mom cope day to day.  Our vision was a little bit different- you know- her sitting in a chair paralyzed dumbed down.  

 It only took about 6 weeks until we realized Dorothy needed the meds.  We agreed to half of the lowest dose- and we have seen improvement in her anxiety and restlessness.   I’m sure over time the meds will decrease in function and we will have to up the dose.  At least it will be awhile before she’s drugged out and sitting in a chair staring off into space.

 Side note- it does nothing for Sundowners.  )-:

Peace & Love,

Cheryl Doreen

Out of the blue one day, Dorothy turned her car keys over to my brother. Just like that- gave them to him and stated firmly-“I’m not driving anymore”.   No questions were asked, no reason was given.  To this day, we still don’t know if she drove around for hours not knowing where she was, if she had almost gotten in a wreck-or if some aggressive driver had blown the horn at her and scared her.  All we know is -we were relieved- we did not have to confront this issue.  

I believe when it’s time to turn in our car keys- it’s has to feel like the ultimate loss of independence.

 It has to feel like -the beginning of the end.  Instantly – you are constantly dependent on someone, anyone to get you to where you want to go.  You are back where you started in this life – where you trusted other people to care and protect you. 

The line “You don’t know what you’ve got till it’s gone” is quite relevant in old age.  When we get to the point where all of our freedoms are slowly going by the wayside- we can’t help but feel sad- and reflect on what we had.  I’m sure this line goes through every old person’s head- one way or another- when youth slowly fades away. 

Other things began to fade away for mom after the car keys.  Dorothy stopped wanting to go to the grocery store, stopped wanting to go on a walk.   She pretty much shut down for a while- and I’m pretty sure this was the beginning of the depression state that Dementia adds to our being.  It’s hard to watch someone with so much energy and love of life- get slowed down- by a disease.

All Dorothy needs or anyone with this (a) disease is someone to be there for her/them.  So be that person- be there for them or find someone that can be that person.    She doesn’t remember- she’s confused-she’s irritated-she’s scared- she’s lonely.  In some cases, people don’t want to be helped- and it’s hard to be the one that’s wants more than anything to help them -let it go. If and when they are ready for help-they will reach out and let you know. I’m glad that my brother and I are there for her- it’s comforting knowing that she’s not going through this alone.

So find a way to be there, to be available, find something you can do – no matter how small- but, only if you want to.  

Peace & Love,

Cheryl Doreen  

I can’t imagine the drama my brother and I would be experiencing today- if- Dorothy had not had the insight to update her affairs.  She had her power of attorney and all finances transferred to my brother.  She updated her will.   It was heartbreaking and surreal to see the strong, independent woman –our mom- sign over the authority and responsibility of herself to someone else.   It’s full circle-the journey of life- we begin our existence depending on someone to take care of us- and we end the adventure the same way.

It’s hard for me to understand the families who are not on the same page- the ones that argue over every little decision.  For some reason they don’t seem to understand- it’s not about them- it’s about the loved one.   My brother and I talk it out all the time- sometimes we laugh, sometimes I cry.  As hard as it is- we do it- we agree on what is best for mom- and what she wanted. 

  For your sanity and peace of mind-I suggest, (as hard as it is) to encourage your elderly loved one to update their affairs.  Sometimes- the most implausible person is the most logical person for the job- who is the “good cop “?   Have them take the lead- it will make your situation more peaceful.

WARNING******   This will not be easy.   Be Strong! Stay the Course! And remember, It’s not about you.

I also suggest- while they are still in “sound mind” to find out their wishes are for their end of life care.  We all get to die- so make it easy on those left behind- don’t leave any surprises or scavenger hunts for them to figure out.  Make it easy on yourself, you are in charge- accomplish as much as you can while they are still of “sound mind”.  

My suggestion would also talk to them about death- before they are too far along.  Find out what their end of life wishes are. Find out how they want to die- do theywant to be on machines and medicine until their dying day?  Do theyNOT WANT any life support options- of any kind?  They may, like Dorothy, not wish to be fed by anyone -when she cannot feed herself or drink for herself she wants to just fade away.  Do they want to be buried? Cremated? Or the new thing- put your ashes in a tree and plant it- so you continue to live on?  Ask the tough questions- then accept them and honor them.

Be sure to check out the “legal” paperwork of your state- some of the things your loved one wishes- may need to be authorized.

Peace and Love,

 Cheryl Doreen

Good Cop, Bad Cop –nobody wants to be the bad cop.  I was the bad cop -in Dorothy’s mind-for a few years – at the time it was very devastating to me.  To be honest it hurt my feelings.  There is no rhyme or reason for it-it is what it is.  The problem is we don’t know what’s going on in Demented minds.  Maybe, she was punishing me for something I did years ago- but, I’m pretty sure she didn’t miss anything-she had eyes in the back of her head and informants (to this day, I don’t know who they are) that reported to her daily.  

For the past several months, my youngest brother has been the bad cop. He’s already seen how she treated me in this arena, so he’s immune to the fuss.   I, now hear all the made up, bad things she has to say about him- that she used to say about me.  Honestly, it’s hard not to laugh- it’s much more fun than crying.

If you find yourself wearing the bad cop hat – my advice would be to relish in it!   LOL  (-:       The tables could turn at any moment and your irrational loved one could make you the good cop.  

The bad cop cannot say or tell them anything- period. This is why you need a good cop- one who can deliver the same news/or change – only then it will be accepted, believed and allowed.   It could be something as simple as mom- today, you need to take a shower.   If the bad cop suggests this- she will not shower until the cows come home.   It’s crazy- you can’t imagine how many times I’ve heard “he’s not the boss of me, he can’t tell me what to do”.  

Somehow – you have to accept and understand that it’s not the person you knew before- this is Dementia taking control. There is nothing anyone or anything can do.  It is so sad.

Afraid, frantic, crazy, confused, paranoid, nervous, upset and lonely.   This is the life of a Dementia person.  It’s not pretty.  People with it need somebody they can count on- someone who is always there to answer the phone -with a happy voice- willing to agree and just sit and listen. Someone they know is going to be there for them. 

Sometimes, it’s overwhelming – to be that person.

Peace & Love,

Cheryl Doreen

I mentioned before about the education that Dorothy had given us, mostly they were words to describe how she would be acting and changes in behavior to be aware of.  They were:

• Forgetfulness- all around
• Asking the same thing over and over again
• Not being able to engage in a lengthy conversation
• Not remembering common words, places, things she has always known 
• Stating that she didn’t need to remember that – because, it wasn’t important
• Putting things away in odd places
• Fidgeting
• Getting emotional for no apparent reason
• Being Defensive for no cause
• Saying false statements about your siblings, family members or friends
• Trying to play your siblings, family members or friends against each other
• Easily agitated
• Feeling claustrophobic out in the open
• Having to get up and leave suddenly, for no reason 
• Made up stories

She was right, all of these things happened to her and are they still happening to her

I can remember driving her to my uncle’s-her bother-in-law’s- home to visit with cousins.   They both have health issues and we thought it would be a fun to see everyone and spend some time together.   On the way up (It was a three-hour drive) she must have asked me 100 times where we were going.  I responded every time in an even voice with the same answer “ we are on the way to see Uncle Tom”.   Sometimes she would ask me “did I just ask you that?”- I’d always answer “yes, mom but you can ask as often as you like”. 

I warned everyone to be prepared- I was not sure what “Dorothy” would show up.  But, you can’t really prepare anyone who doesn’t know first hand about this diease.

We walked in arm and arm- thank goodness it was a beautiful sunny day- and she was happy go lucky.  She sat quietly on the back deck, listening and engaging-she was not really knowing or connecting with anyone.  When talk of Gran (dad’s mom) came up, she, out of nowhere went off as to how I never liked Gran and how poorly we got along.  No one said a word.  There was no reason to.   She repeated herself several times before I changed the subject.   It was a very uncomfortable situation-they did not understand that it was the Dementia talking- not her.  

When we left a few hours later- by the time we got to the front driveway from the back-deck area  (a thirty step walk)- she had no idea where she was or who she had just seen.   When I told her where we were and who we’d seen – she looked at me in a state of confusion and said that this just wasn’t true.  We got in the car and headed southwest- it was a clear evening and the sunset was going to be spectacular.

Peace and Love,

Cheryl Doreen

One of the best gifts Dorothy (mom) gave me and my brother was the education about how she would be acting/responding/progressing with this disease.  It’s been over five years since she started telling us that she would get to a point where she would not remember anything.  She told us what signs to look for and when it was time to put her in the “home”. Mom made us promise that we would keep her in her house as long as we could. We honored our word.

We saw it coming-little by little- Dementia was taking her away.  We remained caring and calm- you have to-or you will not be able to comfort them or help navigate them along-it will drive you crazy.  

The most enjoyable way (for both of you) to keep connected with your Demented person is to agree with what they say-they don’t remember it anyway.  If you are argumentative or “call them out” with what they are saying as you know to be wrong- or even go as far -to say to them- “I just told you that-why can’t you remember”- or “you just said that” it only makes the situation worse.  They repeat- they get stuck in the groove and can’t get out-this is what they do, this is their world- we are just helping them through it.  

They are already scared and confused- correcting them or calling them out only embarrasses them and makes them feel stupid. Sometimes,they can feel so ashamed that they shut down- they stop communicating- they do not want to feel humiliated, so they just don’t say anything. 

 It’s hard, it sucks, and it will wear on your last nerve.  But, if you want to be there for them you have to find a way to “let it be”. Let them be who they are- or actually- who Dementia turns them into.

 Mom told us it was time- Yep, about a year before we put her in the Assisting Living facility. I would visit her once or twice a month at her home- I’d go on a Friday after work and spend the night and hang out with her on Saturday.  We would always do some sort of “honey-do” project that needed to be done.  If you own a home, you know that there is always upkeep of some kind that needs to be done.   

A few years back when I would suggest to her that we purge a closet- clean out the garage or weed her flowerbeds, she would decline-she had zero interest in doing it- she would say “not today Cheryl, I’ll do it one day this week”. So instead we would go for a walk or to the junky stores and spend the day just browsing.  

One day she announced that she wanted to try to have someone come in and stay with her. We hired Visiting Angels (excellent company, I highly recommend them) and we went through three different ladies before Dorothy felt comfortable.   They were there on Mondays and Wednesdays.  I’d be go over every other Friday and Saturday and my brother spent as much time as he could with her.  It was easier for him, he lived close by and works construction- so he would visit on rain or slow days. It was working pretty well.  

All was calm for about eight months -then one day I got a call from her and she was all out of sorts.  She was frightened and convinced that her caregiver was going to come back in the night and rob her and steal her car.  Paranoia was starting to take over and her rational thinking was nowhere to be found.  There was nothing my brother or I could say to her to calm her down or make her feel safe.  There was a saying back in the 70’s “paranoia will destroy ya’.  It’s true- this is just another stage of Dementia – it had a tight grip and it was overtaking Dorothy.

My brother and I agreed to cancelled visiting Angels. My brother took on the task of taking her to visit facility’s and find one that she would be happy with.  We made sure that she picked it out. We even videoed her telling us which one she chose- she was happy.

Peace and love,

Cheryl Doreen

It’s Friday- 

Today is Dorothy and my day.  But, first I make a stop at my grandboys school-for Chapel- and to watch my oldest grandson preform in a skit.  I walked into the relaxed atmosphere full of wonderous youth bursting with song, happiness and hearts full of love.  It’s a wonderful place to be- in a room with so muchjoy,love and happiness. I scan the room and find my grandboys – they were sitting with their buddies-enjoying the song and totally engaged in the festivities. They smiled when they saw me- which still warms my heart -and we exchanged fist bumps. 

I found a spot in the back next to my son-in-law and just like that- my eyes started leaking-if I would have been by myself – I honestly believe that I would have dropped to my knees and released 258 days of built up tears, fear and sadness.  But, this was not the time, I was not alone, I was in an uplifing energy filled auditorium- I had to get it together.   

I kept my composure the rest of the skit – it’s very good for your soul to watch the youth in this expressive setting, they have so much positive, free spirt energy.  I need to make a regular outing to this heartwarming event- I leave feeling renewed and younger. 

I picked up mom on time- 10:00 am – for our weekly outing. I get her every Friday (unless I am out of town)  we do her laundry and we go out galivanting around town.  Our winter outing is more constricted as to what we can do.  She loves the outside and sometimes it’s not outside weather from December to  March. So, we visit Walmart, Sams Club,Goodwill and any junky store that has a variety of nick knacks and everyday things. She injoys it and it passes the time.  From time to time she will grab my hand, look me in the eyes and Thank me for getting her out- and letting her feel like a normal person. We can go up and down the isles for an hour or more- it’s always new to Doroty- she never remembers seeing any of it- and it’s always like she is seeing it for the first time.     

We have lunch at Cracker Barrel- and head back to the house to finish the laundry- she is constantly confused. I deal with it-the only way I know how.    I remember when my children used to ask me the same thing over and over and over again- or the famous “WHY?”- that was asked a trillion times. I never got upset with them- or my grandboys-so,I cannot see getting upset with mom (Dorothy) for asking the same thing over and over and over again.

Today was a good day.

Cheryl Doreen