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When Did You First Know?
Mainer1
Posted: Tuesday, August 13, 2019 7:18 PM
Joined: 11/18/2018
Posts: 120


We can all likely remember the appointment with the physician when the diagnosis was first uttered, but I knew well before that, perhaps because my Dad died of EOAD and I had done considerable research about the disease.  Maybe not, though.  

I had been noticing for some months back in 2016 that DW was losing "focus".  Conversations tended to wander away and it took an effort for her to bring them back.  Words were accurate, and she was just as brilliant and sweet as ever, but then came July 16, 2016:

We were sitting in out living room watching the sun set over our back yard.  There is large maple tree fairly near the house and its branches extend across much of the back of the house, nearly to the porch.  I'd been talking, some days before, about trimming it back a bit.  She looked out of the window and said, "You need to do something about that . . . . . branchy thing."  My heart fell, and similar word problems (aphasia) became more and more frequent gradually after that.  We are now up to 85 or 90% "word salad."  

We saw a neurologist for a couple of years after that, but he was of no help.  In January of this year, we finally found a really good neuro-psychiatrist who interviewed both of us, read my detailed observational notes, and gave us a diagnosis of mid-stage AD with behavioral abnormalities.  (Stage 5/6).  But I had known long before that -- maybe just didn't have a specific name for it.  So, three years from "branchy thing" to the Memory Care facility.  


Army_Vet60
Posted: Tuesday, August 13, 2019 7:38 PM
Joined: 6/21/2019
Posts: 363


My wife broke her leg in five places in May 2011. She needed two major surgeries, one in May and the other in June 2012.

She came out of the second surgery very slowly.

Cut to September 2013. 

I woke up about 4 in the morning and found my wife sobbing quietly.

I asked her if she were ok. In a bitter tone she said yes.

I asked her if I did something wrong because I knew she was crying.

She said she had woken up and felt something happening in her head. When she tried to recall the evening, she couldn't.

I made an appointment for her first thing in the morning. the doctors spent a week testing her physically and mentally.

Her PCP said she showed an unusual cognitive decline, but she wanted to monitor her for a year.

The following year (2014), ALZ was confirmed.

 


Crushed
Posted: Tuesday, August 13, 2019 7:54 PM
Joined: 2/2/2014
Posts: 4608


I KNEW when we were in an RV in Alaska and I gave my wife a column of 2 digit numbers to add up while I paid the bill   It was September 2010.  I remember it like yesterday. I came back to the RV and she looked up from the paper and said How do I do this?  DW had a Summa cum Laud   degree in Mathematics.  I was terrified.  She was 58.   There had been some driftiness we had attributed to a new medication and late menopause.  We flew home the next day and saw 4 doctors in the next 6 days, including the head of Neurology at Johns Hopkins.  

They called it MCI but they all knew.  No one wanted to say the word.  finally in early 2012 a rather cold and distant neurologist wrote Alzheimer's in the record, almost as if he was correcting an earlier error. 

janeymack
Posted: Tuesday, August 13, 2019 8:36 PM
Joined: 2/28/2017
Posts: 49


Aphasia! So, it has a name. My H is EOAD, diagnosed in 2013, very early on. Over the last month he has begun losing nouns, and it is ramping up quickly. Do I help or just let him struggle?
LadyTexan
Posted: Tuesday, August 13, 2019 9:20 PM
Joined: 12/21/2018
Posts: 188


I began noticing things were off in December 2016. When DH was getting dressed, he looked at his shirt with puzzlement, probably just for a mili-second or two, like he was trying to figure out what do I do with this thing?

DH's signature changed.

DH's temperment changed.

I stayed in denial for a long time. I thought I was imagining the quirks with his dressing and his signature. When it came to his angry mood, I often blamed myself. I also thought his alcoholism was creating the clumsiness and his memory issues.

DH started having auto accidents. While one car was in the shop, I watched as he drove the rental car off the curb. I promptly asked him about it and he denied running off the curb. Then he couldn't understand why there was damage to the bumper. More auto accidents followed. Interestingly, they were all with stationary objects. The 5th auto accident prompted the long road to diagnosing the disease: Younger Onset Alzheimer's. We received the dx in February of 2019. 

DH is now 56. While I continue to notice a decline, I practice expressing gratitude for our many blessings. I am grateful that DH can still walk. I am grateful DH can still put sentences together. I am grateful for our dog who provides comfort while keeping DH happy and entertained. I am grateful that the medications (Namzeric, Citalapram, Gabapentin) are helping. I am grateful for our awesome geri-psychiatrist. I am grateful for the pearls of wisdom provided on this forum. I am grateful for this forum and all of you caregivers. You are heroes.

 


Mainer1
Posted: Wednesday, August 14, 2019 2:10 AM
Joined: 11/18/2018
Posts: 120


janeymack,

You will notice that I am up at 2 AM -- happens sometimes.  In answer to your question about nouns.  When that first happened to us, we addressed it directly and decided to try to make a game of it.  She would lose a noun, and we would play 20 questions until we found it.  That worked for nearly two years, but it rarely works now as she has lost the majority of her words.  The key for us was that we were taking it on together -- that way she did not see it as only her "problem" but a challenge for us both.  


Crushed
Posted: Wednesday, August 14, 2019 4:38 AM
Joined: 2/2/2014
Posts: 4608


LadyTexan wrote:
(Namzeric,

 


Namzaric is an extremely expensive scam.   They took two old drugs, stuck them together and charge a fortune there is No therapeutic advantage.

Namzaric: Namenda was an Alzheimer's drug that was marketed by Forest Pharmaceuticals, which Actavis bought in 2014. That year, with the patent near expiration, Forest discontinued the drug. It replaced Namena with Namenda XR, an extended-release version with a patent that won't expire until 2025. Namzaric? It combines the now-generic ingredient in Namenda with a second commonly prescribed generic ingredient. In effect, Namzaric is a branded drug that contains two generic drugs. Its 2018 cost will be around $450.

 


SSHarkey
Posted: Wednesday, August 14, 2019 6:26 AM
Joined: 3/15/2018
Posts: 150


I can look back and realize I was seeing early symptoms way before I realized what was happening. He loved photography and when he retired he decided he wanted a new camera. We bought him an amazing high end thing with all the gizmos and I got him a series of lessons for its use as a surprise gift. He went through the entire series and couldn’t remember any of it. Rarely picked it up. He used it occasionally for taking pictures of the grands, but most of the time it just sat on the shelf. Same thing with birdwatching. Avid birder. Then nothing. Then came other incidents. Missing measurements when working in his shop (NEVER before. He’s a stickler about that), three lost sets of keys, including the car. It was about then that he began to worry about himself. But for me the biggie that made me know something was definitely going on was in 2017. We were at our daughter’s out of state dog sitting for them while they were gone a couple of weeks. He mentioned we hadn’t been there in about a year and we were there for 10 days just four months earlier. He had zero memory of it. Now my husband is first and foremost a family man. He will put his life on the line for his children and grands. For him not to remember was huge. We saw the neurologist the next week and the rest is history.
Ed1937
Posted: Wednesday, August 14, 2019 6:36 AM
Joined: 4/2/2018
Posts: 1417


My wife showed very mild and temporary memory loss for a few years before DX. I attributed it to age. She had spinal surgery in Feb. 2017. She developed AFIB during surgery. Cardiologist put her on medication for it. She was released, and 10 days after surgery it was as if someone flipped a switch. She asked me how to turn the lights off in the room. We had been living here for 4 years, and the light switch was as typically placed next to a door. Word salad! At times she was not able to speak in a way that I could understand her, and basic math was out of the question. There were also other symptoms. The surgeon said he thought her problems were caused by medication interaction, specifically due to the new heart med. She stopped taking it, and within a few days she began to regain what she lost. But she never regained it all. Far from it.

I found this forum while she was at her worst, and immediately took part in it because I feared the worst. I'm so glad I did because it allowed me to accept the DX when it was given in June. She never heard the DX, and still does not know she has vascular dementia. I hope she never finds out.


Doityourselfer
Posted: Wednesday, August 14, 2019 6:53 AM
Joined: 9/5/2017
Posts: 318


I knew in May 2016 when we were at the YMCA and he couldn't find his clothes to change into.  He came out of the men's locker room with one shoe on, his bathing suit and a towel.  He couldn't remember which locker he used.  That month he also ruined a tire by running over metal, couldn't properly park, couldn't remember details from phone conversations,  and misplaced his wallet on a daily basis. 

In July 2016 his hallucinations began where he saw people in our yard. I asked him to draw a clock and it was way off.  That's when I made an appointment with his doctor for September 2.  


Fischie7
Posted: Wednesday, August 14, 2019 8:36 AM
Joined: 7/27/2016
Posts: 178


2006 in Italy my DH forgot his ATM code.  In 2011 after general anesthesia for a pacemaker, he started asking if his mom had gone to bed (she was dead) when he would wake up from a nap.

 That same year, the critical event was the day after he attended a dinner with a friend, we saw the friend and DH said;  'Where the heck were you yesterday?'  The friend kiddingly said, "What's the matter with you, do you have Alzheimers?  I was sitting right next to you!" At that moment my heart sank and all the little things I had noticed came together...

He was diagnosed with MCI in 2013 and with Dementia Alz type in 2016. 


Rescue mom
Posted: Wednesday, August 14, 2019 2:21 PM
Joined: 10/12/2018
Posts: 885


Highly suspicious (just to me) first incident: we were at a small resort on vacation, been there couple of days. Walking around, DH said he was tired and wanted to go back to the room (which we’d just left and was in sight). I said go ahead, I’ll walk some more. He said “I can’t find it.” (The man who navigated, map-free, densest London Rome Athens streets after prior visits years earlier.)

Not long after that (waiting for the docs to wrap up Dx) 3 things happened within a week of each other:

1.DH got in his car to drive himself to his longtime PCP nearby. In less than 5 minutes he was back home He did not know how to get where he was going. In fact, did not remember why he was going.

2. I was driving; we were downtown where DH worked for five decades. He did not know where he was, not the name of the town, not how to get home,  nor how to get to his old office, nor our longtime bank, just down the street.

3. Big hurricane hit. He did nothing to help prepare—we had not had one for a while, so this is out of his routine. I got really angry because he was just sitting and it’s hard work. And I just knew something had to be wrong with him, but god help me I was mad. 

But after it passes, everyone’s outside cleaning/picking up and checking on property, neighbors, power, etc. 

DH was frozen on the couch. Normally, in the past, he was leading such efforts. Now he had no idea what to do. None. Could not even move branches or pick up trash, or wipe things down. (OTOH if you’ve never done hurricanes you may not know how basic it is). Seeing that was when the kids finally acknowledged something really was wrong. 

 


Lills
Posted: Wednesday, August 14, 2019 3:05 PM
Joined: 12/27/2017
Posts: 199


I could write a book on all the clues I missed that DH had FTD.  I'm going to call the first years "My Angry Years".  The earliest was 2010:  Our only child was getting married and I told DH that w/he needed to give a toast to the bride and groom.  The one he wrote out was without emotion and very unacceptable.  My dear, sweet, introverted husband suddenly became this gregarious man I didn't know.  When in a restaurant, he'd repeatedly go up to strangers and tell them that I was a German teacher.  Going to a movie would no longer include any discussion afterwards.  He didn't buy me a 60th birthday present! No acknowledgment or gift when I retired.  Then came the lack of wanting to DO anything.  No empathy for neighbor who was ill.  He used to be a master at planning trip itinerary.  Fell multiple times off the tread mill, etc.

Clincher:  (I know I've written this before)  I ordered a specialty light bulb that arrived broken.  It wasn't in pieces but one could clearly hear it was broken.  DH asked if we should still "put it in".  Logic and common sense were gone.  I knew.... and I'm not angry anymore....


PACOD3
Posted: Thursday, August 29, 2019 7:18 PM
Joined: 3/4/2019
Posts: 2


I saw signs about two years ago but dismissed them as my imagination since she was only 66.  About a year ago she had a dentist appointment and the dentist called me at home after to ask if I'd noticed a change in her behavior since he and all of his staff had. That was when I realized there was a real problem. I made an appointment with her PCP so I could have a central "data collection point".  He referred us to a neurologist that ran blood tests, MRI, cognitive tests, etc. and confirmed dementia.  I also called her cardiologist prior to an appointment to ask that he note changes in her.  He also called right after and said there were definite changes in her.  It's hard to see someone you've been with for more than 40 years and married for almost that regressing as she has.  I know I'm in for a journey.
Gig Harbor
Posted: Friday, August 30, 2019 12:08 PM
Joined: 3/10/2016
Posts: 555


In 2010 he did not recognize the lady who had been cleaning our house for 5 years. The next year he had trouble with a remodel we were doing on our house. He could not follow the progression of the work the carpenters were doing. He forgot the names of our friends. It progressed slowly but steadily. He just said recently that it was sad that we had not taken any trips to the ocean this year when we had taken two within the last two months.
jdmg1
Posted: Saturday, August 31, 2019 11:44 PM
Joined: 4/23/2019
Posts: 11


I knew Christmas of 2017.  He changed and he was having trouble finding his words.  He was diagnosed Nov. 2018.  He was more than likely showing signs prior, but I thought his confusion was because he is an alcoholic. So, I guess we will never know when the symptoms were really evident.