Saturday, September 28, 2013

Going Downhill: What Husband's Dementia Now Means

I wrote on June 5, 2013 HERE.  Before that, July 3, 2012 I reflected HERE. These posts and recent observations show clearly that hubby is going downhill.

Bird house was last project. 
The last thing I recall my husband building, was a bird feeding station that he carefully fixed on a pole that used to house a DirectWay TV dish that pointed south. We changed to cable and we did not need that stand cemented into the ground. Hubby came up with the birdhouse solution. This project was in the earlier stages of dementia and I did note how he seemed confused figuring out some of it. Somehow he has wanted to maintain his equipment in the workshop, and carpenters since then have remarked at how organized this workshop is. I laugh, because I have cluttered up that workshop with items we used to take camping and other junk to go in a yard sale. I long to make this workshop an exercise room and use it for my storage and even Pharis has offered to transform that room.  It's as if I do not want to let my husband's workshop go.  I want that workshop to continue as a carpenter's workshop even as I want my husband to continue to be the same.

But now hubby is going downhill.

How does this make me feel? It is very hard. Thursday night I reclined on our long couch in the den by my husband who was sitting in his spot watching TV. I was occupied by depressing thoughts and trying to pray.
Lord, I do not want things to change. I want arthritis to be the only thing wrong with hubby now. I want that new pill to fix the arthritis and I want him to walk even if it is with the walker. I want my mellow husband back. I feel guilty now going to the store without hubby who has wanted to accompany me everywhere.  The whole dynamics of our marriage is changing in that I have had "the better" and now have "the worse" of those marriage vows.  But, LORD, it is not all about me. I accept that you are using this situation for my sanctification and thank you for so many who have come along side of us. 
I wondered reclining on the couch if I needed an anti-depressant. Then Kenny and his brother-in-law came over. I got up from the couch to greet them. They were over borrowing tools from hubby's workshop. They needed tools to fix a car, but unfortunately hubby didn't have those tools as my husband's hobby had been carpentry, not auto-mechanics.

"What's wrong?" Kenny asked. "I usually see you upbeat."

"He's not getting up to walk and I am afraid of all that is coming." Kenny and Kevin promised to pray.

What do do about dinner Thursday night.  I started it, but hubby wanted to go out, forgetting his limitations. He hobbles to the bedroom to change from his jeans shorts and T-shirt into slacks and a nice shirt. This outing however would not be easy. I packed the 8 PM pain pill in my purse.

Usually hubby would interact with the waitress, but not Thursday night. The walker we took to the restaurant was stored elsewhere and I went to get it when we went to leave. "I don't need that!" But yes he did and does. He has memory of walking, but is in denial about his current limitations.

"Use it or lose it," you hear about walking and artritis. I took the urinal away from him on Friday thinking that going to the bathroom would encourage walking. However, Friday night he wanted that urinal rather than walk to the bathroom and I came to observe that he had peed in his jeans during the day. Slowly he changed out of them as he got ready for bed. I have been helping him and notice all I have to do now that he did over a month ago.
  1. I retire his false teeth to be soaked over night. In the morning I get his full uppers and partial lower false teeth for him along with new Seabond that keeps the uppers in place. 
  2. Taking meds is a battle of the will. Kenny said that Friday morning after I had left the house to substitute teach, it was an effort to get hubby to take pills. He was stubborn for me last night as well. 
  3. Shaving and showering is done with Kenny's help.
  4. Dog Ziggy "needs" a ride in the wheel chair--translation hubby doesn't want to use the walker. 
  5. He has a worried look on his face, reminiscent of my father and uncle as they aged.  These two relatives did not have dementia, but did have that worried look.  Kenny thinks that my husband's eyes look different.
  6. Hubby doesn't answer phones now in the last several days. Friday morning when I got to school and called, Kenny answered the phone and gave the receiver to my husband. 
Yes coconut oil, and Alzheimer's meds have delayed the inevitable. Yes I have been a Pollyanna. It is here, folks, what I interviewed Dolores, LaTane and Laurie about. What I have read in Linda 
Born's book and Linda Fisher's book and other books. What I have heard in the Alzheimer's Association Support Meetings.  Ready or not, here IT comes--the very difficult days of being an Alzheimer's caregiver. 

Friday I finished reading a novel, Crazy Lady by Jane Leslie Conly, to the special education students I have been substituting for this past month. In that novel middle school student character Vernon has to let go to a special needs young neighbor, Ronald, whom he had been mentoring. Vernon experienced anger at Maxine, Ronald's alcoholic mother, and grief when Ronald was carted off to live with relatives in another state. Vernon had done so much for Ronald--sponsored him in The Special Olympics and told others about Ronald saying his first word. Vernon ran alongside the car that carted Ronald off with Ronald looking back in the window. Finally the car sped off and Vernon falls, rolls and hits concrete:
I tried to speak, but nothing came out. I hurt all over. A hand moved up my legs and back, feeling for broken bones. It moved around my neck and rested on my face. It smelled familiar. "Vernon," Daddy said. "I'm here." (p. 180)
My students and I had quite a discussion on all the emotions of Vernon went through in the book. I know that my Father in heaven is there for me now, but I hurt all over emotionally. I must blog whether anyone reads this or not.

This Saturday morning hubby asks me what street we live on. Every time I cough he asks me if I am okay. He is sad he says today. He says he misses Jake and Sally who have been out of town. I miss them also. His son calls from Virginia and I talk with him about the deterioration which is evident to the son after he talks with his dad. Hubby takes forever to do anything. I edit his pills--no vitamins and fish oil--but other essentials have not been taken. He waits in his wheel chair watching TV for over an hour, not sure when he will sit in his padded spot. After some time the spot calls to him and he makes it there when I am in the den blogging.

As I am writing this post Kenny comes over for the ritual shaving and shower. Hubby is resistant to the shower, but we manage. Thank you LORD, for Kenny and the prayers of you all who read this.

Added Sunday, Sept. 29: It's official. I am only allowed one day at the PITY PARTY according to Jean Milsap, 20 year caregiver whom I interviewed in July here. So be it! The lady has spoken! 


  1. I feel the pain in every word of your post. I wish there was a cure! I wish I could help! I wish, I wish but wishing is not the answer. Just do until you can't manage then it's time for others to take over. my prayers are with you.

    1. Thanks, Latane. I know you do feel my pain because you have been there. Thanks for your encouragement to just do what I can now.

    2. sounds so sad and so hard, but reflective and a heat touching narrative. I'm glad you write, I hope it is a good outlet to you. Peace to you as you walk the path the Lord has set before you.

  2. Thanks, Mary. I hate to be so negative. Kenny is here with Herb now and I am going out in search of getting my hair fixed--no appointment. Just looking.

  3. My dear Carol. I understand. I hurt right along with you, and for you. I will be praying all the more. You will come through this, and will be the stronger for it, and by Jesus' grace, you will find smiles along the way. Keep yourself in the "way of Truth" even if you don't feel like it, and you will find that Jesus Christ is right alongside you, as you already have. Great is His Faithfulness. I love you, my friend who I've never met.

    1. Thanks, Laurie. Hopefully this will be my one day of having a pity party. Already better thanks to you all's prayers.

  4. Carol - This is so heartbreaking. Even though you knew it was coming, I still don't think there's any way to be truly prepared. Hugs to you. I'm so glad you are still writing about it. I know what a great outlet that is.

    1. Yes, writing helps. Came home after a hair cut and already feel better. Hubby seemed okay tonight.

  5. Bless your heart Carol! I was reading the 12 Steps for Caregivers on the side of your blog. It may be time to review it again. There is some good advice there. I'm sure anti-depressants may have their place but I believe the Lord will give you the strength and peace you need as you call out to Him and rely on His Word. I'm thankful the Lord does not forsake us as we age.

    1. Kenny went with us to our church which he is starting to attend and helped with the wheel chair. Actually I cannot lift it into the car. I was much better on Sunday and am trusting our LORD and yes--those 12 steps at the side here are just great to review. Always love your counsel, Georgene.