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Spouse or Partner Caregiver Forum
When Did You First Know?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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....