Early Onset Alzheimer's Disease - what happens when your Partner's life, and YOURS, is destroyed by this horrible tragedy
This post is REAL and a TRUE STORY. I'm not embarrassed to tell this. It helps me remember the good times that Carm and I had together, and we have been together for almost exactly 14 years. Heather Armstrong, who died of suicide recently and was never afraid to tell her story because she wanted to help people suffering as she did, wrote a blog dooce about all the horrible situations she faced. She gave up alcohol entirely for awhile but things became worse, I suspect, and the result? This brave woman took her own life.
I understand, I think I do anyway, what Heather went through. My story is simple. Many years ago I was confronted by a friend of mine who was convinced that I was an alcoholic. I knew I wasn't but it made no difference to this friend. To save our friendship, I attended AA and went into Rehab and gave up all forms of alcohol for 13 years. I never missed drinking at all. But finally, when my friend and I parted ways, I moved down to Eyeries, County Cork. At this point I was looking at retirement and knew that a drink wouldn't hurt me. I drink now and then, that's true, but it doesn't hurt me or anybody else. I meet my friends in the local pub and there we'll stir the shite and laugh, and make fun of each other. In rural Ireland, I've come to understand that this is Free Therapy. Laughter, as they say, is great medicine. Taken in moderation, a drink or two does me GOOD particularly now that Carmel Murray is in a Nursing Home well over 7 hours away from me.
Is it horrible? Yes. Am I lonely? Yes. Am I doing everything I can to help Carm? You bet. It's as if we're both on a long, long, long journey. But now, after months of being without her, and a whole lot of prayers from my friends, she WILL be home in a month or so.
THE START - WHAT I THINK I UNDERSTAND
Carm moved permanently to our home in Eyeries about ten years ago. When I met her on a plane, I
knew she was the one. And she told me later that I was the one for her. We were the type of couple that never had to be married. We were partners and it was enough for both of us just to be together. We have a STRONG loving relationship, and I quickly learned what Carm liked and didn't like. I respected her opinion and she respected mine. Living together, we came to LIKE each other which is the basis for any happy and joyful relationship. Then, about 5 years ago, she started to develop behaviour and symptoms I didn't understand. At first I thought she was drinking too much - we both liked an occasional drink - but I soon learned from a good friend of mine here that Carm's problem wasn't drinking. It was something else.
Carm's behaviour and symptoms became worse. She'd fall from the two steps leading into our back room, which Carm calls the View Room because of it's fantastic views. She'd hurt her face and lip, and I worried that someday soon she'd break a wrist or an arm. But because she had a melanoma, and following surgery in Boston, she developed lymphodemia. That made her leg swell up and she could easily lose her balance. So it definitely wasn't drinking; I knew it was something much worse than drinking or even lymphodemia.
Then Carm's speech began to slur. She'd forget people's names. When we played cards, she couldn't tell the difference between an Ace of Spades and a Jack of Hearts. Then she became angry at me. I realized that later she was projecting. The man she was really angry with was her ex-Husband. She thought that man was ME and even called me by his first and last name occasionally.
I started doing a great deal of research. At first I thought her symptoms were due to a Brain Tumor or even PTSD. I also thought she might have had a stroke. But when I talked to a doctor who was a friend of mine, she said that didn't add up either. "Carmel is a friend of mine. I've known her for years. As soon as I can I'll conduct some tests and we'll find out the truth behind her symptoms."
One day not long after that, Carm simply disappeared from the village. My friends here searched everywhere for her and we couldn't find her. I turned out she'd gone to stay with her sisters also about 7 hours from our house.
She came home two months later, looking fit again and beautiful. For a few days, she acted the way she had always acted: she loved me and never confused me with her Ex. But after those few days passed, she changed again. It was like Doctor Jeckel meets Mr Hyde. She started yelling at me and accusing me of things I'd never, ever do to her. Again, I realized that she was confusing me with her Ex. Now extremely worried that she'd do something to herself we'd both regret, I phoned an Ambulance. They took her to the local hospital where she started to recover. There, they gave her meds to help her sleep and a psychiatric doctor told me that Carm was suffering from Early Onset Alzheimer's.
That night I cried my eyes out. Not from the loss of my partner but because I know knew EXACTLY what was wrong with my darling Pook. Now I KNOW that I can help her - I started additional research and talked to a great friend of mine from the States. He told me, as well as his wife - that what Carm needed was another diagnosis from qualified doctors such as a Psychiatrist and Gerontologist; better therapy and medication available only in the United States; and the possibility of volunteering for T-Cell therapy to untangle the Axons in her brain, enabling Carm's Neurons to fire properly, and at last letting her remember things. "Tom, her memory is intact. But this sort of cutting-edge treatment, while expensive, can help to REVERSE her Alzheimer's and memory loss, rather than just slow it down."
Today, I'm doing even more research to prepare for Carm's homecoming. I'll have to take her to the States as my friend suggests. I've tried to invest wisely and as I said to the lawyer who's helping me to help Carm: "Sir, I'd sell everything I own to get my Carm back to the way she was when I first met her." And that's what I'm doing.
The other night I dreamed of Carm again. This time she was more than perfect. She was an Angel. She was and is always an Angel as far as I'm concerned. But when she comes home, and with the right medication and treatment, Carm will be better, younger, and more beautiful than ever. At least that's what I dreamed. And now my heart swells with hope and joy. I don't cry as much when I think of her. All I know is that someday soon, we'll be together again.
Please note: I'm NOT a doctor at all. Just a guy who's done his best to understand what's happening to his 'lost' loved one. If you are experiencing something similar, do reach out to ask for help. It's what I did and still do - and THIS time, it works and will keep on working.
With my best of luck and love to you. From Tom - and I hope someday, right here at my right shoulder, Carm will write - From Carm and Tom xoxoxox
ADDITIONAL RESOURCES
Alzheimer's Society of Ireland
Alcoholics Anonymous (AA has chapters all over the planet - just Google for your nearest chapter and its location / phone number)
Alanon - (as with AA above, Google to find your nearest meeting - this organisation helps those living with many types of addictions and those people with spouses & friends in Recovery)
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