A Wonderful Marriage–unconditional love
March 15, 2010 by Holly
When the doctors gave us the news 3 years ago that my husband, Dave, 57, has Frontotemporal dementia (FTD) I had no idea how much it would change our lives. In the initial stages, FTD affects the front and sides of the brain –personality, language, speech, logic and reasoning areas. Loss of memory–one of the first signs of Alzheimer’s—develops later.
It took 2 years before the reality of my new life hit me. I remember standing in the kitchen making dinner and hating it. Dave used to do most of the cooking & baking, but not any more. He has problems reading and following recipes. In fact he doesn’t remember to use a cutting board (not his hand) for chopping peppers. There was a moment when I wanted to put the knife down and cry. This isn’t what I expected our life to be like in our 50s. I thought we would be traveling and hiking around the world. I didn’t imagine that I would be fixing toilets, inflating car tires with a compressor (in the dark), or hammering baseboards because my husband no longer remembers how to do them.
As Dave’s condition progresses, he is becoming quieter and more withdrawn. Every once in a while he does something which hits a sensitive spot deep inside–something which speaks louder than words…
The other day I asked Dave to pick a card for his best friend son’s wedding. Since he has problems reading & understanding the written word, I didn’t know if he would pick out a birthday, anniversary or wedding card. When Dave brought it home, I waited a day before reading it…
For the Bride and Groom
On Your Wedding Day
(Oh good–he picked a card for the right occasion)
Inside:
“A wonderful marriage is having someone by your side and in your heart
to make the good times better, the hard times easier, and all of life sweeter.
Wishing you both a love so beautiful it turns everyday things into a lifetime of happiness.
Congratulations on Your Wedding”
At first I couldn’t say anything. What a beautiful card Dave picked out. When I asked him why he chose this card, he said “there were 4 or 5 cards that I could have picked, but I wanted this one because it said nice things.”
Afterwards I wondered why this card meant so much to me. I realized how impressed I am that Dave is able to read cards well enough to pick out this beautiful one. I also realized that even though our physical relationship has changed, there are deep feelings beneath his quiet ‘veil’. And finally, it was like he was saying those words to me. He often says…“I know I’m changing and I’m not the same person you married 31 years ago. Thanks for ‘putting’ up with me. Thanks for staying with me.”
In other words…
A wonderful marriage is having someone by your side and in your heart to make the good times better, the hard times easier, and all of life sweeter. Thank you Dave–those words are perfect.
Lori La Bey on Mon, 15th Mar 2010 10:03 pm
Hi Holly
I’ve been thinking of you lately wondering how things were going with you. This post brought tears to my eyes. What a difficult yet beautiful time this must be for you. Thank God you can see these small wonderful moments that hopefully help offset the times of separation, isloation, and frustration that are bound to occur when dealing with the disease.
You are strong and wonderful woman, and it appears your husband still sees and feels that in you.
Holly on Tue, 16th Mar 2010 7:10 am
Lori, it is so wonderful to hear from you. I have been thinking about you and wondering how you and your Mom are doing. I would love to hear how both of you are doing.
Thank you for your comments. You are right–it was an emotional post for me to write. When I have those little moments of what Dave is feeling, it touches me deep inside.
Wishing you and your Mom the best. Thanks again for staying in touch.
Warmly,
Holly
Heather Toles on Wed, 17th Mar 2010 8:36 pm
Holly,
After reading your articles and crying for you and Dave, I can’t help but be in awe by your strength.
I have always found you to be wise and inspiring. Though you may not know this, I have absorbed what you have said in the past to me and I have moments of thought regarding my own life.
I wish the best for you, Dave and your family through this journey. We are here if you need us.
Heather & Cliff
Holly on Wed, 17th Mar 2010 9:25 pm
Hi Heather,
Thank you so much for your support. I am really grateful that you and Cliff live across from us. You have no idea how secure I feel knowing that you care and are there for us. Cliff has been a godsend. I had no idea how much Dave did around here until this past year. Wow–this journey is definitely a ‘growing’ one!
Thank you again to both of you,
Love
Holly
Beth on Sun, 21st Mar 2010 1:37 pm
I love all of these stories. i am a 40 year old woman that has been told that her husband has frontotemporal dimesia. My husband was a wonderful,supportive,beautiful man. We have been married 19 years and have two beautiful boys. My husband was the best friend in the whole world. It took us about 3 years to finally get a diagnoses. Now my husband sits in a chair 24/7 watching tv, he wont shower,he hates when anyone talks to him. We do not have the lovely moments you speak of and I miss him terribly. I worry about him and am doing my best to care for him. this weekend I told him he needed to shower and he became very mean. He will not move to shower. I have contacted the Doctor for help on what to do. I am extremely tied and confused of what to do next. I am scared and want to do whats best for my husband. Is there anyone out there that has experienced syptoms with their loved ones like this? Wont shower,verbally mean, wont leave the house,does not eat regularly ect…. Any help is so greatly appreciated. Thank you … Beth
Holly on Sun, 21st Mar 2010 5:24 pm
Hi Beth,
Thank you so much for reaching out for assistance. I am sorry to hear that your husband is verbally mean and unfortunately, it is common in FTD. The frontal lobes control our emotions and when it deteriorates, anger and aggression often show up. They aren’t able to manage, or monitor their emotional responses.
The brain is so complex and the scientists know less than 15% about how it operates. I have discovered there are 6 subtypes for FTD and within those subtypes, there is a variance in symptoms and progression. Even though there isn’t a cure or way to slow down FTD, there are drugs which can help to minimize your husband’s anger. His lack of personal hygienne is similar to my husband’s. If it was up to Dave, I am not sure if he would ever shower or change his clothes. Since he doesn’t have the aggression, he will do as I ask (most of the time) and take a shower and shave. Lack of social contact often comes from their inability to keep up with conversations (they lose the understanding of the meaning of the words), their inability to remember faces and they are often ashamed of their condition. Each person is different.
Beth, I want you to remember what they tell you in a plane emergency. If you are sitting beside a child or ‘challenged’ person, you have to put on your oxygen mask before you can help them. This is critical that you find the support to take breaks, and to stay healthy (physically, mentally & emotionally) for yourself (#1), your husband, and your boys. Have you gone to the FTD support forum (http://www.ftdsupportforum.com )? Click the ‘register now’ and you will find other caregivers dealing with similar issues. They will also be able to help you out. I know 2 other women in their 40s whose husbands have FTD and one of them (Susan) is on the site often.
I am not sure where you live but I would be happy to speak with you on the phone. If you are interested why don’t you send me your phone number to my email address: hollyeburne@gmail.com. We could talk about strategies that are working for both Dave and me. I am leaving for a business course tomorrow morning and will be gone for 8 days but I will call you as soon as I come home. I will have my computer with me so I will correspond until then.
Thank you again for reaching out. There IS help and we will find it for you. You aren’t alone.
Warmly,
Holly
Paul D Reynolds on Wed, 14th Apr 2010 8:21 pm
This blog piece affected me greatly. I am a male aged 57 and in a great and blessed marriage. However I am 22 years older than my wife so it is likely that she will not only survie me but have to care for me when my health starts to go. Should that happen I hope she will reach out for a support group sooner – very soon.
The work you are doing is inspiring.
All the best, Paul
Holly on Wed, 14th Apr 2010 8:49 pm
Thanks Paul for your honesty and your support. It is wonderful and heartwarming to hear how much you appreciate your wife. Beautiful.
Warmly,
Holly