Sundowning

Bob is struggling more then ever with "Sundowning". His agitation and confusion are so bad from about 4:00 Pm until he goes to bed that I am struggling to care for him. The hallucinations although not as frequent, seem to be very intense. He wants something- but does not know what. He stands in the middle of the living room looking lost and confused.  He often does not think he  is home and becomes very upset if I dont take him to find his house. For a few weeks I could take him for a walk around the neighborhood but that does not work anymore.. Now I have to Put him in the jeep.. drive around for about 20 minutes ..then pull up to the house and say--"well here we are-- home at last.."
Sometimes it works.. Sometimes we have to do this 4 or 5 times a night...
I am feeling a bit tired and rundown.  Thank goodness gas is cheaper..

Conversation

Today as I was trying to get a few things done for tomorrows Christmas dinner I was carrying on a One sided conversation with Bob. I would say something. Bob would say something obscure back that had nothing to do with what I said. I would say something else and Bob would say what I call Jibble jabble...words that are made up or are nonsensical.
 He was "conversating" in his own way but not really communicating. He was happy thou and would often let out a Laugh or chuckle.
 It has been a really long time since we have had a meaningful conversation and its one of the things I miss the most. But It was nice to have a morning where he tried to participate in his own way and was happy doing it.
 I think he may finally be recovering from his Cold which makes for a Huge improvement in attitude and confusion. At least in the early hours of the day.
  As late afternoon and evening set in I know it will be back to Mass confusion and him not knowing our Home or me.
I'll take what I can.......

No one ever tells you

When your loved one is first diagnosed with this horrible disease no one tells you about the hundreds of every day challenges. Sure- they tell you to read this, or visit this website, or talk to this group. But they don't just sit you down and TELL you  all of the little things that are most likely going to happen down the road.  And yes, I realize each and every case is a little bit different.
 They don't tell you how to get them to take their meds when they really don't want to.
 They don't tell you how to convince them they shouldn't drive.
 They don't tell you what kind of adult diaper is better then the next.
 They don't tell you how to deal with the mountains of paperwork and the bureaucracy involved in getting them simple care let alone extended care.
 They don't tell you how to convince them they are not going to drown in the shower.
 They don't tell you how to handle it when they have a Meltdown in the middle of a store and they start screaming that you are trying to harm them.
 They don't tell you about the hundreds of hours you will have to spend on the phone on their behalf only to find out that they really really REALLY  need to speak to the patient and only the patient, even thou said patient has Dementia and has not a clue what is being said nor in my case is even able to hear what is being said.
 They dont tell you that the majority of friends and family  will quit visiting or coming by because they will be "uncomfortable" with the situation and not know what to say.
 They dont tell you that Optometrists and dentists are going to get visibly annoyed because the patient cant follow simple instructions, and that they will still charge you for the visit even thou they did nothing to help because your loved one wouldn't cooperate
They dont tell you that  your loved one is going to go through grief over and over again as they remember and forget  loved  ones that have died.
 They dont tell you how often they  wander off.. or how many times you will lose them in the supermarket.
They dont tell you how often your heart will be in your throat in a panic because things are not going well.
Nope-- They dont tell you......

Options?

It has been a week since I've posted. Not because I didn't have things to say or share but because I have been hashing over "our"options in my mind.  I was waiting until Bob could get into the neurologist to see if something could be done for his anger and aggression.
 After much testing today it has been decided that Bob is in "late" stage dementia. These stages are so hard for me to understand. One day a person is not the same as the next, but I do know that today even when I thought Bob was doing well, in reality he was just doing better then his average which is really not that well at all when I look at it through the neurologists eyes.
 Today they took him off of the Aricept and put him on Lexapro in an attempt to control his aggression and anger. If the Lexapro works he will be able to stay home for now..  I was also told to start researching Nursing homes and get him on the waiting lists. Did I mention "options" earlier? I know they are getting his anger and violence under control so that he wont be so belligerent when it comes time to be placed. As tired as I am of battling, and also and watching Bob battle this disease...I am just not ready to give up. I hate this disease.

Healthy and Happy?

Today was such a strange day. We went to the Neurologists office for Bob's checkup and wellness check. These visits usually consist of a set of questions that they  have used over the last few years to measure Bobs cognitive impairment. Today they told me that they would no longer give him those tests because-- well-- when the memory is that bad-- the tests just don't do much but upset him.
We are now just doing our best to keep Bob healthy and happy. I dont know why, maybe I was just having an emotional day. But this just hit me hard after we got home. I felt like they were telling me that it was over.. Like there is no hope.  It made me sad.. and yet I knew for Bobs sake I should be glad.
He hated those tests. He worried about them.
I will shake this feeling of doom off and embrace his bodies health and his mental happiness. Because really he is..
If he didnt have Alzheimers.. his body is healthy.. and he is happy.. and thats all that matters. Right?

Wheres the dog

Today Bob walked in the back yard and started calling " Dakota". I listened for a few minutes and then stepped out on the deck. I said "Bob, what are you doing?"
Bob-"I'm looking for Dakota". ( Dakota was  one of our wolfdogs)
Me- "He passed away a few years ago Hon."
Bob- "He did, Where was I?"
Me- "You were right here"
Bob- "Oh"
Bob walked over and pushed the gate open.
Me- " Whatcha doin?"
Bob- " Leaving this open-- he might come back"
Oy

I Been absent

Whoops.. Been so busy the last few days that I haven't had time to think, let alone blog.
Arranging and filling out Patient forms for Bobs new neurologist and trying to get some of his Rx's changed. Some are making things worse- Not better.
Now I also need to see a doctor for High blood pressure and my heart is "skipping" beats.. Have to get that to get that under control. Stress and anxiety are taking their toll I suppose. One of us needs to be healthy-- so I guess I better get it taken care of.
It snowed for several days and we had a good new 12" of snow out there--- Now we have lake size puddles as the temps went way up and "the melt" is on. Now it is raining again and all of the snow is gone and I can once again see my tulips pushing through.. Yay!
Bob is struggling with sleep again.. The Clonazapam they gave him for night terrors and sleep did not help and in fact I am sure it made him worse. Lets hope the new stuff works-- I am pooped!

Rain Rain Go Away

It has rained quite a little bit over the last few days and it has Bob quite concerned.
Today he paced back and forth in front of the window and kept telling me
"This cant be good"
I would assure him it was just rain and it would end soon and at least it wasn't snow..
He kept pacing from the door to the picture window.
 Bob-"This cant be good, Its time to shut it off."
Me-"Hon-- Its rain-- we cant just shut it off".
Bob- " Well thats stupid." How am I going to go to work..
(UM--- He hasn't gone to work in over a year)..
I said-- "I dont know-- I'll email the weather man and see what he has to say about it."
Bob said- " Make sure you tell him I need to go to work"

What's it REALLY like?

A friend that I had not talked to for 4 years, called me yesterday. She knows Bob has Dementia and of course our topic of conversation eventually drifted in that direction. She told me her Mom had just been diagnosed with MCI ( Mild Cognitive Impairment) which is what the Physicians usually tell you before the diagnosis of Alzheimer's or Dementia comes later. As I sit here typing this my thoughts go back to that day when the Doctor said Bob had " Mild Cognitive Impairment" and that my first thought then was- MILD? There is nothing MILD about this. For God's Sake- He got lost  a block from our house. I left that office feeling like the Doctor just didn't understand what was going on.  I came home and searched the internet for more information and THAT was when I knew what we were facing, and what the Doctor was "mildly" preparing us for.
Anyway- My friend said-- "Please prepare me.. what is it really like." I was at a Loss for words--
So many things I wanted to say, but did not want to make things seem hopeless. So many things I wanted to warn her about, but then they may not happen for her Mom so they are better left unsaid. There is kind of a running joke among caregivers- Once you've met One case of Alzheimer's --You've met one case of Alzheimer's. No two cases are the same and one patients symptoms can be so much different then another's.
In the beginning Bob was very skilled at covering his "blips" of memory loss. I think a good year passed before people really started noticing. I noticed, but I was with him day in and day out. Later as it progressed he was just in denial and blamed the memory lapses on other things (and I also did.) He was just tired, or maybe something got wrote down wrong, or Something was stolen, not hidden or misplaced.
Now we are just at a stage of confusion most days. His memory is no longer measured by days or hours, but by minutes and sometimes seconds. He still has tons of memories of the old days and we talk about those times often.
Bob now needs help showering & dressing. He gets lost in the house now instead of on the roads. He knows he feels hungry but doesn't know to go to the kitchen to get something to eat. He does not have a sense of time and is often confused about if it is day or night. He still knows who most people are or recognizes the face but cant bring up the name or where he knows them from. He can't carry on a conversation and he most definitely can't start one on his own. He struggles to find the right words to say what he wants, and when he does decide to speak you have to be very patient and just wait- he will eventually get his point across.
There are many "advice-givers". The "Use it or Lose it" attitude. Make him do soduko, or crosswords, or jigsaws, or memory cards... Got news for them- The man can not tie his shoes so I seriously doubt doing a crossword is on his list of "do-able" things. He probably couldn't have or wouldn't have- before Dementia either. Its hard for people to understand that this cant be fixed. Using a brain that doesnt work right to solve a puzzle just frustrates and causes panic in Bobs case.
I told my friend I could go on for hours but her mom's MCI and her personal experience could be so much different then mine and Bobs..
She was very tearful and Whispered " What are you going to do when he no longer knows who you are" . I told her that is one of the things that upsets me the most- thinking about the day when Bob does not know who I am ... I told her I imagine I will carry on just as if he did-- because I will still know who he is. 
When your memory is a holey as swiss cheese you have to take it a day at a time- and sometimes minute by minute. Bob rarely remembers he has Dementia. So that panic and worry he was feeling for the last few years can now rest on my shoulders instead of his. This seems to free him from pretending and faking his way through the day. Oh I cant even imagine the energy it must have taken to try and cover his memory loss.
Day by Day -Maintain a sense of humor when you can, cry when you have to, be angry when you have to, but try to find a moment to enjoy and treasure each day. Take it day by day people!

Wake Up Call

I woke up this morning to Bob wandering the house this morning at 5:30AM. He was very confused and looking for "his" house.. He had no idea where he was.  He kept pointing at things like his recliner and saying things Like- I have one of those--but mine is newer- He didnt know which rooms were which-I opened the closet to show him his clothes he said those are girl clothes.. then he kept opening doors and I asked him what he was looking for and he said " the out".. I said "Do you need the bathroom? He said no-- I need to find my house and was trying to open the front door-- I shut off the security alarm and I took him outside so he could "look"-- it was snowing a little so I said--" lets look later its really cold out here.. How about we have some coffee..."

So I Made him some coffee, gave him his meds and his Breakfast-- he finished eating and was sitting there drinking his coffee and he  said- 

"Who are you married to?".  I said "You!!--- who are you married to?" He smirked and said "you-- it must have been a double.."

 Okkee Dokkeee then...

My wake up call was not so pleasant this morning- My heart has been in my throat all morning------------How much longer till he no longer knows who I am?

Night Terrors - Part 2

So- If you read my previous post you know Bob has been having problems with night terrors. He has always  talked in his sleep but never has gotten up and walked around.
A few nights ago he scared me-- NO-- I was terrifed. He went to bed at 7:30 and I was in the living room watching TV. About 8:30 I saw him peeking around the corner. I waved at him. He jumped out into the hall entrance and I immediately noticed that he was dressed in his street clothes again. I also noticed that he had his folding knife open and in his right hand. He started yelling at me- " You should have knocked-" I was so startled I just shouted back- " What-- why would I have to knock?" As I was pulling myself off the ceiling he walked back into the bedroom. I went in after him and said " what are you doing?- What are you talking about, Are you awake?" He said "yes".
I said were you when you were in the hallway? He said- "I dont know"- He got back in the bed- rolled over and went to sleep.. I grabbed the knife put it in the safe with the guns and went back to the living room with my heart pounding out of my chest.
I had  made him put all of the guns away quite awhile back as I wanted no chance of an "accident". Now I have to tell him his knives are going in there too- For the last two days I have been thinking thou-- there are knives and sharp objects all over this house. Potential weapons.
Last year I had alarms installed on the house. The doors are "armed" so I know when he comes and goes. Today I ordered another sensor alarm-- I will install it above the bedroom door in the hall-- I will know when he gets out of bed and comes out of the bedroom.  It has a Receiver that I can keep with me so I wont be notifying him -it will just be for me.. My piece of mind-- What little of it I have left.
I tried to have a conversation with him about what happened. It was like talking to a wall. Although he did say. " I would never hurt you".
I know Old Bob wouldnt-- I'm still not to sure about this New Bob just yet.
Taking precautions seems like the most reasonable next step-

Night Terrors- Part 1

I am feeling the need to address Night Terrors but I think I need to gather my thoughts and be a little more coherent before I do. Bob has been struggling with them which means I have been having many sleepless nights lately. I need to talk to his Neurologist and see what I can do to reduce the frequency or stop them all together.  Last night he scared me so I didnt sleep.  Well, I did a little,  but it was with my eyes open. Every single house sound had me popping upright. To be continued.......

Pacing

Bob is pacing. Back and forth from one end of the house to the other. Restless and fidgety. And of course, I sit and bite my tongue because for some reason-- that drives me bonkers.  I asked him if he was feeling okay-- He replied "Yep" I try to sidetrack, give him something to do, and just interrupt that pattern of pacing. Nothing works. Anything I ask him to do is abandoned within seconds and the pacing resumes. Even going for a walk didnt help-- he was in a hurry to get back- and then he resumed the pattern of pacing. I put a large box of shipping supplies in the middle of his path, he walks around it.  I asked him to carry some laundry to the basement and he told me he was "busy". Oy-- gonna be a long day!

Afraid Of Being Afraid

Every few days Bob has a Panic or anxiety attack. I dont know what brings them on, but when they happen it's not just awful for him- It's awful for me. Its so hard to watch him struggle. He cries- but tries to hide it- He scribbles notes in his notebook like he is trying to remember or maybe remind himself of something later.  As soon as I know they are coming I will give him one of his meds the Neurologist prescribed. Most times If I give them soon enough the panic will only last an hour or so. If Not- well they last for hours. I'm learning to NOT wait just because I don't like to "dope" him. Its a necessary thing whether I like it or not. This note that he scribbled out -- just lets you in on a little of how "afraid" he really is at times.  As you can see-- he is really starting to struggle with writing and spelling.   So many little notes- scribbled in a Panicked  frenzy. My heart aches for him.