Oct 112016
 

“Come on, Carlen,” Martha said. “Let’s get out there now!” My wife was anxious to see two of her paintings on exhibit in an art show on St. Pete Beach.

Martha scurried straight to her paintings when we walked through the door that Friday.

art

One of the pictures that Martha exhibited, a self-portrait. It hangs in our living room, where I’ve seen it thousands of times.

“Look, here they are,” she said, grabbing my hand. You’d think there were no other paintings in this show, I thought as I smiled. She beamed as she looked at them and then she showed me their price tags: $200 each. We returned Sunday afternoon to see if the paintings had sold. They had not, but that didn’t matter.

Eighteen months earlier, Martha had been diagnosed with Alzheimer’s. My wife was a confident woman. She’d served on the St. Petersburg City Council, run for the Florida Legislature and was active in other civic and political affairs—all while being the mother of three.

But after her Alzheimer’s diagnosis, Martha’s confidence plunged to a depth I hadn’t seen. That was September 1997, just three weeks after she turned 50.

As Martha’s despondency dropped to a low ebb, our sister-in-law KK encouraged Martha to take a watercolor class together. This should be interesting, I remember thinking. She had never shown an interest in quiet hobbies like art. Martha liked action—dancing, tennis, singing, hiking and talking smack.

So I was surprised – stunned, really – when Martha said yes to taking the class. I think she agreed because she loved KK, and anyone who knew KK knew she could be persuasive. They started going to a watercolor class once a week at the St. Petersburg Art Center.

Her teacher Judi would hand Martha a sketch to paint, and Martha began to do so with such a complexity and boldness of color that reflected a dimension I had never seen in her before. I had no idea where that came from.

Neither did Judi, who pulled me aside one day. “Carlen, this can’t be taught,” she said of Martha’s use of color.

Martha painted scores of pictures large and small—turtles and fish in an orange-and-green sea; a multi-colored zebra; a blue-faced hippo walking atop an orange-and-yellow rainbow. You can see these and other paintings here.

What a delight to see this talent unfold out of a dark and scary place. Most of all, it was a joy to see Martha’s confidence surge.

As much as I enjoyed Martha’s artwork, I enjoyed hearing her talk about each piece even more, and seeing the glow in her face when she completed one. The lethargy so common with Alzheimer’s just melted away.

maddux

Our family in 1987, a decade before Martha’s diagnosis.

I remember Martha talking on the phone with our daughter Rachel, who was away at college. She was describing the art show, and was so excited and fluent. What a change.

And then, as quickly and quietly as they had emerged, after two years or so of painting, Martha’s desire and talent evaporated away. If it were only possible to bottle this confidence, I thought, as Martha’s mind slipped away to an unknown place.

A friend once told me to look for the little things that emerge and to be thankful for them. That was good advice, but it sure is hard to follow when you’re deep in a crisis like Alzheimer’s. Nonetheless, the memories of those two years of Martha and her art are warmly engraved in my heart.

About the Author: Carlen Maddux wrote a book about his family’s 17-year journey through Alzheimer’s. Just released, it’s titled: A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. Carlen also launched a blog in September 2015, which can be found at www.carlenmaddux.com.   

 

 

 

  64 Responses to “Finding Unexpected Gifts Deep in a Crisis”

  1. How wonderful that Martha was able to express herself through her art for a time, and how sad that the talent disappeared. Luckily you have her paintings as a reminder! Art is such a wonderful way for dementia patients to find meaning , communicate, remember, and share, whether visually or even musically.

    • Peggy, my wife was diagnosed a little over 3 years ago and short term memory is gone, long term is going. However she loves to sing so I got her in church choir and she loves it. Can pick up a sheet of new music, look it over twice and she has it. Still also quotes lengthy poems from years back word for word. Has no idea what day it is nor can she follow a recipe. Enjoy the positives and learn to play with the challenges.–I am trying but it is a very tough road.

      • So very sorry to hear of Peggy's battle with Alzheimer. I am Betty "Elizabeth" Jones from MVPC. My sister Trudy Ward also a member at MVPC passed away last year 6/18/15 of Dementia with Lewy Bodies and Parkinsonian movements which as Robin Williams wife describes as "A Terrorist in my Husbands Brain". She is completely correct. I described it as hell on earth for my sister and me.

        I hope that You and Peggy can find some peace with her singing in the choir. Hang in there and God will lead you forward. Bless you and be sure to take care of yourself as the caregiver.

      • It is a tough road, Bob. One thing I heard early on from a friend that sticks with me still: "Be gentle with yourself, Carlen, be gentle with yourself."

      • Yes, it is. If I said it once, I had to say it thousands of time: Seek first God's presence…
        I didn't always see it or feel it.

    • Thank you, Ms. Wheeler. Yes, art's working in a different dimension from the verbal skills.

    • I agree!!!!

  2. My husband was diagnosed with Alzheimer’s a year ago but we now realize he was actually several years into it. It has been heartbreaking to see him digress everyday. He finds joy in a few things but not much and mostly sleeps. Thank you for sharing your wife’s story and her painting is beautiful.

    • My husband is into his fourth year of dementia and looking back it was evident it began many years before that, as many as ten! He takes the same meds as Alzheimer’s patients; there is no difference. He also sleeps most of the time. I can’t get him out of bed before noon, give him his breakfast and meds. Often sleeps most of the day and back in bed by 9 pm. Fortunately I have a lot of great family and friends. Lots of support. The only thing I dread is washing and shaving him. Once it’s done doesn’t seem it was so bad, it’s the anticipation. We do maintain our sense of humor for now. When that’s gone, it will be dark days.

    • You're welcome, Janiz.

  3. Martha's paintings are inspirational, and I think there is a definite benefit to art therapy as a way of helping the individual express their thoughts and feelings. My husband who was diagnosed in 2009 and died at home in 2012, also started drawing. He had no prior experience, just one day picked up a pen and ruler and started to draw; then just one day stopped. I always thought all the straight lines he was putting on the paper, somehow symbolized what was happening to his brain. So, in the hope of finding a cure, I made the decision to donate his brain to the Mayo Clinic for research. Since we have no family, I decided to release his drawings into the universe with 100% of the funds being donated to the Alzheimer's Association, and to this end I have set up a website http://www.alzheimersfundraiserart.com. It still amazes me that at a time when he sometimes couldn't remember who I was, he was able to sit for hours concentrating on such intricate designs.

  4. Congratulations on the release of "A Path Revealed", Carlen, and thank you for sharing your families' experience with Alzheimer's to help inform and assist others.

  5. My mom was once very artistic and took painting classes with artist in residence in Wisconsin. She has been battling alzheimers for over 12 years and just last year we discovered that she can paint quite well. I also have some framed art from my Mom, She can no longer articulate but is still mobile. I think she recognizes me but does not know who I am. This was so exciting for me that there is still something in her mind that she could create.

  6. Thank you soo much for sharing this w All of who have been touched by this Disease;

  7. The paintings are absolutely creative and beautiful. Thank you for sharing your story and her paintings. My mother was diagnosed with Dementia in 1983 but realized after the fact that we saw signs of it a couple of yrs prior. Due to mom's severe arthritis in her right leg, she is not too mobile. As others have mentioned, she sleeps regularly, smiles and tries to communicate occasionally. She knows my father, recognizes her children but rarely calls us by name. My heart goes out to anyone who have to deal with this dreadful disease… May each of you have strength as we go through this journey.

    • What were the signs that you saw a couple of years before? My Mom has dementia diagnosed at age 83. I’m the oldest of her children at age 64 and sometimes I feel that I’m in the very beginning stages of it. It’s such a debilitating disease for the entire family.

      I can’t wait to read the book.

    • So your mom has had dementia for approximately 25 years? How old was she when diagnosed? What meds did she take in the beginning and is she still taking them or what else?

      My husband wa sdiagnose 5 years ago and started mea but I am pretty sure he had symptoms 5-8 years prior. Am trying to determine how long he will be maintained on memantine.

    • Thank you for sharing, Mr. Brown. In hindsight, what we thought was weird behavior began to make sense in light of Martha's diagnosis. I mention several of these in my blog and in my book, "A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer's."

  8. What a beautiful story! My mom was diagnosed with Alzheimer’s in 2008, although she had symptoms years before. She used to be a social butterfly, and loved spending time with friends and family every day. It was amazing that although her memory was deteriorating, we continued to see glimpses of her love of a social life and love of friends and family. Even when she could no longer remember that I was her daughter, she somehow still wanted to “hang out” with me like she did before the disease struck. It was like a part of her was trying so hard to remember, knowing that I was someone important to her, although she couldn’t quite remember who I was, and that was ok. I always started out every sentence, lovingly, with “mom”, to help her out, and I think that it did help. I treasure every memory of her and miss her every day now that she is no longer with us, as she passed away in 2013. I pray a cure is found as quickly as possible, as our family has also lost my mom’s identical twin sister, two other sisters and one brother, all to this horrible disease. Treasure every moment.

    • Thank you for sharing, Ms. Eldon.

    • Susan, I completely understand what you mean by “hanging out” with your Mom even though she didn’t quite remember you. I too had the s as me experience. I’m the last of 7 children and my Mom & I were very close as my Father died suddenly in 1987. When I would visit her and she’d ask me about my family. I had my first child at 41 (my sweet blessing!),and I named him after my Father. She’d ask my son’s name and when I’d tell her, she’d say “Oh! Thats my husbands name!” I had to change the subject cause she didn’t remember that Daddy died. BUT the way she looked at me when I’d talk to her and tell her the things her and I did together, I think I saw a flicker in her eye, yet sadly I think it was my own need to have her call me “her baby” just one more time. THANK you for sharing.

  9. My mom did just the opposite…she was very creative in her younger years and as Alzheimer’s chimed in she laid down her quilting, crochet, and gardening as if to say “I’m finished”. As I look around the house all her beautiful work surrounds me like a big hug (what a wonderful legacy!).

  10. Marvelously wild and soothing. Thanks for sharing.
    My wife also has Ad.

  11. My husband, 84, has dementia, progressing to Alzheimers. Always active on the farm, it is difficult for him to accept that he can’t do what he wants. He began coloring with crayons/pencils a year ago; it is the best way for him to relax and relieve his frustration. Great-grandchildren stay two days a week, and although it is a busy time for me, they really do keep his mind active! Games on their level is great to keep his mind active. He has a pace-maker and his heart is strong. He sleeps a lot some days; although he no longer drives, I take him for drives as often as possible. He still know everyone in the family, but names seem to be disappearing more every few weeks. My prayer is that I stay healthy enough to care for him as long as necessary.

  12. My mother’s oldest and only sister alive has Alzheimer’s.

    She’s in her 6th stage. Her memory isn’t there anymore, and it has already affeted her children and grandchildren,

    and 2 great grandchildren. Theyre too young to under- stand why great grandma doesn’t know who they’re.

    It’s breaks your heart, when she call’s me by my mom’s

    name. She is my aunt. I still love her.

    • What a beautiful story, My husband at a young age early fifties was diagnosed in 2000 with this terrible disease, I took care of him for 12 years unfortunately I lost him in 2013.

  13. A lovely story, my Dad passed from this terrible disease, it has been a year this past August. You have these wonderful paintings to remember her by, thank you for your story.

  14. My mother also had been artistic in her youth. As she progressed into her Alzheimers she took painting classes at the day care she went to. although most were childlike some were very pretty and we cherish those.

  15. My heart goes out to you. This is such a horrible disease but there are moments of happiness, if you can call them that, that emerge through the haze. It’s so nice your wife had those few years of confidence and happiness enjoying her newfound talent. Let’s hope, in the deep recesses of her memory, those happy moments are present and are a fond memory that she draws on. Wishing everyone much strength and perseverance during this incredibly sad and tiring journey we’ve all been forced to take. I hope somewhere, deep inside, our loved ones feel the love we have for them, even when they no longer know who we are.

    • Thank you for commenting. I feel certain that Martha deep within had an awareness of her surroundings but that she was unable to respond in the ways that had been normal for her.

  16. My wife has Fronto-temporal dementia. Her father and uncle died from Alzheimer's, which, looking back at the symptoms, was likely FTD instead. She was having serious hallucinations and extremely difficult emotional times this spring and early summer, saying she knew what was coming. Zoloft took care of the hallucinations, but she still had difficult emotional times and I needed to give her Xanax once or twice a day for anxiety.

    My sister started her coloring, but she really didn't want to. She only did it because it was supposed to be for her granddaughter.

    In August, I figured a way to short circuit the anxiety. Every night, she would start to whimper at about 4:00 in the morning, so by the time she got up she had already had hours of negative thoughts swirling in her mind. It would take hours of talking to bring her around, and she would have a pretty good day after that.

    On August 18, when she started to whimper, I said “I love you.” Then every time she whimpered, I said “Um Hummm.” That went on for a while, and then she started to repeat “Um hmmm.” after me. That also went on for a while on for a while, and then she drifted off to sleep. When she got up in the morning, she was a different person. She was happy, and was so for the rest of the day.

    It has now been well over two months that I have not given her any Xanax. She has started to color and really enjoys it. The difference is absolutely amazing. And all that I did was “Um Hmmm.” It is now a habit that she does at night and during the day. It is substituting positive for negative.

    I don't know how long this will last, but I expect that as things deteriorate, it will not get as bad as it was. I do think that those bad times were replaying terrible thoughts over and over, and as long as we keep them at bay, things will be better.

    I am happy that she is getting joy from finding her artistic expression, but I am most happy that she is happy. I don't know if this will help anyone else, but I know that that her big difficulty was not caused by her disease, but her psychology.

    • Thank you for sharing, Mr. McLaughlin. It's wonderful to discover those things that work, isn't it? Martha and I found meditation to be very relaxing. It sounds like your expression Um Hmmm might be one form of meditation.

      • I think, rather, that is was simply disrupting the tremendous negative thoughts that swirled in her head at night. She had great difficulty dealing with the disease because of the close personal experience she had with her father and uncle. Short-circuiting that negative cycle allowed her to enjoy again. Whatever it was, it certainly is a blessing.

  17. What beautiful memories you have in your wife's paintings. My husband also had Alzheimers. it was a tough road especially after he was diagnosed. I kept him home with me as long as I could. But he got out of the house in the middle of the night & fortunately I heard him. So I had to put him in a home. If/when that happens to any of your loved ones, I have a few suggestions. Don't visit there at the same time or the same day like a routine. Go when it is least expected & if you have any complaints, address them as soon as possible. Also if possible, find out if your state has a law called THE TORT REFORM LAW. That means if you need to sue the home, for neglect or abuse, and the State does an investigation, you cannot use the findings of the State in a civil suit in a court of law. Not all states have that Tort Reform Law & those that do, need to be outlawed. Anyway, my husband walked constantly. In the last year of his life he seemed pretty content. And the best part was he knew me right up to the end. By the way, he didn't die from the Alzheimers. he had a blood clot in the stent he had.And that is what took him. He was 72 years old. He had the Alzheimers for about 10 years & for him to know that I was his wife all that time is not common in Alzheimers patients. I also worked at one time in a Nursing home & I remember a sweet lady who had Alzheimers. She didn't know who her daughter was but she could sit down at the piano & play " The Dark town Strutters Ball perfectly. It was so amazing. For those of you who are going through this terrible disease with a loved one, please take care of yourselves too. Hugs.

  18. I love Martha's bold artwork! My husband is an artist and I wanted to be one since age 5. Both my father-in-law and my Mother as well as many other relatives in both of our families have passes due to alzheimer's. It is a horrible disease. I am glad Carlen has the memory of her passion for art and the art itself. I predict she might well become a well known artist whose work is sought after.
    Thanks for sharing your story.

  19. Just looked over your online gallery – what a beautiful memory of your wife's talent and personality. It was her final act, and one of courage and love. Lucky for you nothing sold, as you have this gorgeous treasure to bequeath to your kids. I see influence of early Kandinsky and Matisse here. Amazing if she was self-taught; the color balance and values as well as her imaginative compositions indicate a high level of sophistication.

    • Thank you, Graeme. Martha took water-color classes with our sister-in-law for the first year and then alone the 2nd year. I don't want to mislead…the teacher would hand Martha a sketch and then Martha did the coloration with little or no help. Not sure where that came from out of her imagination, but Martha was a pretty colorful person at her height.

  20. My mom was diagnosed ears ago and now

    She is into painting, she spends hours painting I wish I can display her paintings. Thank you

  21. Lady-Links, a group of women who make friendship visits to other women who have been diagnosed with dementia, enjoy doing arts and crafts projects together. Read our latest blog post about how we use art to stimulate conversation. http://lady-links.com/dementia-and-friends-the-co

  22. My dad had Alzheimer's for approximately 10-15 years. He always tried to maintain his sense of humor, even when he could no longer string a sentence together. He has been gone for the last 4 years, and I still remember his sense of humor. Hang on to her as long as possible.
    There is some research that suggests that DHA, DHEA, and TURMERIC might help to reverse the ravages of this disease. I wish this had been around before my dad passed. I would have tried them on him.

    Also, try searching for naturopathic medicine, and look under this for treatments for Alzheimer's. I wish you and your family luck.

  23. Although my sister did not have Alzheimers she did have Dementia with Lewy Body and Parkinsonian movements. This is faster acting and I believe more severe than Alzheimers. We started noticing some problems about 2 years before she was diagnosed. She started to shuffle when she walked and walked bent over as if she had Osteoporosis of the Spine but she did not. She started having problems using keys and the computer. She was fearful of everything. She slept with a heavy steel rod about 12 inches long by her bed. She insisted that all the drapes be drawn before she left the house and everything became too heavy for her to lift when I could lift it with one finger. One time the magnets on her Sonicare Toothbrush stuck together and she could not pull them apart. I just pulled them apart and put them in the bathroom. Her spacial time started to deteriorate. We would take her to lunch or dinner and she would complain that the service was slow or bad because they had not delivered our food. In fact it had only been 5 minutes from the time we ordered. She also took hours to get dressed because she could not button her dress or slacks or put on her knee high pantyhose. She would fall often for no reason. These were all symptoms. Her husband had passed in May of 2014 and she wanted to move to a retirement community, which she did. We got her moved in on 10/1/14. She had many problems because she managed to talk them into allowing her to be in the independent living area and not in Assisted Living where she should have been. She still had problems with keys, using the stove or microwave or the washer or dryer. I believe that her lunches were mostly sandwiches because she could not remember how to operate even the toaster.

    On January 22, 2015 she fell and hit her head in her apartment and since she was in independent living no one checked on her. A friend she had made there finally tried to get her to answer the door and then contacted the management of the community to open the door. They found her unconscious on the floor and rushed her by ambulance to the hospital. She was dehydrated, had a serious UTI and was incoherent. She recognized us by keep telling us about a secret theater. This was a formerly strong, independent, very intelligent woman who had a masters degree in English from the Univ. of Pittsburgh. She could finish a poem or quote that you started as if she had just read it. She never got back to her apartment but spent the next 4 months in the Nursing facility where she continued to deteriorate. She was not eating with her fingers as she could not manage a fork or spoon. She started having delusions and hallucinations and was crying all the time. She would only sleep 15 minutes at a time at night and would wake up crying and asking for "Mamma." She constantly tried to get out of bed, was always pulling her clothes off, refusing to eat and started using nasty words that I didn't think she knew. She started to get violent and would try to hit the nursing assistants. She constantly asked everyone to take her home (Which we later found out was not her apartment or her house her, but our family home in PA) She refused all the craft and art classes and just wanted to be left alone. I visited several hours each day and often ate meals with her. One extremely bad time I had to stay over with her several nights to keep her as calm as possible. Then her Medicare nursing coverage expired and the facility told us they could no longer care for her. We had to move her to a memory care facility which we did on May 30, 2015. Apparently they knew how to take care of her much better because she became calmer, but now she wanted to just sleep. She had congestive heart failure and refused to eat. We got her into hospice at the memory care facility on 6/10 and she passed away on 6/18/2015. It was hell on earth for her and all of us. I cannot think of anything I have been through that could compare to how awful this was. I had to sleep with my phone by my bed so when the home called that she had fallen our of bed or refused whatever I could answer without waking my husband. I was a victim of spousal abuse in my first marriage and while that was bad I did survive with some mental scars, but this horrific disease has left me with depression and tears even more than a year later. Robin Williams wife called it "The Terrorist in My Husbands Brain" and she was completely right. Yes, I am treating the depression, but the memories of this horrific disease still linger and invade my thoughts.

    • Thank you for sharing, Ms. Jones. I remember when I was about as lonely as I've ever felt, and depressed about our situation, feeling guilty and ashamed that I could not help Martha more, a friend whispered to me words that still ring in my mind: "Be gentle on yourself, Carlen, be gentle." That was hard to do at times, but it was important work for me. Take good care of yourself.

  24. Thank you so much for sharing! This is definitely very inspirational to many readers and raises awareness to those who may have lost confidence and purpose in life after being diagnosed. We're currently running a campaign to raise awareness to the younger audience about Alzheimer's and hoping to provide helpful tips to carers and families. Feel free to check us out at https://theforgottenmemoryblog.wordpress.com

  25. My wife Betty and I were married Sept 8th 1956. In 2002 she was diagnosed with Alzheimers .

    On Jan. 18th 2016 she passed away after a long battle with it.

    I kept her at home all those years and on the day she died she still remembered me.

    • Thank you for sharing. Martha had to move into a nursing home after a decade at home. I hope you are taking care of yourself and are being gentle with your memories, which can be easier to say than do, can't it?

  26. I am 67 years young I was diagnosed with dementia 3 years ago. My short term memory is not good but I can remember my past. My biggest fear is forgetting my husband, my children and 2 wonderful grandchildren. I think the people around us don’t understand what we are going through. My father died in his 70 with Alzheimer’s my mother is in her eighties she also has Alzheimer’s . I want to stand up for people like me I feel some people are scared to be around me. Friends don’t understand what we go through, I work out at a gym twice a week my trainers Mom has Alzheimer’s . Thank you for sharing!

  27. Thank you for the opportunity to share my experience with the resident and other residents with dementia and Alzheimer's disease. Their life has changed and another opportunity opened to give thema better life as they experience the art ability within themselves… The change of ability to experience this art and what one experiences within is a matter of time. Then again decline and the inability to continue their art experience will end… Though their life is changing as well as their abilities the present and the past remain within. TIme is coming to an end…and each of us will experience change within as we reach this time.

  28. What a lovely family!

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