Simplifying Conversation

• One idea at a time. One subject and one verb in a simple sentence. No compound sentences.
• Use the word, not a pronoun.
• Keep very calm.
• Don't mention the recent past because hubby can't relate.
• DH will write things down, a way of dealing with his memory issues, but needs my help to spell.
• LMT (lost my thought--see cartoon above). Do not interupt him because he will lose his thoughts.

These seem to be the cardinal rules of dialogue now with communicating with my Alzheimer's husband. I have read some of these suggestions elsewhere, but just decided to write them all down.

I can do this caregiving bit with the Lord's help. The Lord is my shepherd, my caregiver!

Why am I discourged?

Why is my heart so sad?

I will put my hope in God!

I will praise him again--

my Savior and my God!

. . .

But each day the LORD pours

his unfailing love upon me,

and through each nght I sing his songs,

praying to God who gives me life.

 from Psalm 42

Just a Word: Friends Encounter Alzheimer's by Rose Lamatt

Leaving two grown kids and an inattentive husband, author Rose walked out of  her marriage and her agoraphobia to a life with a new roommate, golfer Carol Beinbrink. Life is good for the two friends, until a WORD comes into their life. That word is Alzheimer's. Carol is diagnosed with Just a Word--Alzheimer's. 

I found out about this Florida author on The Alzheimer's Reading Room when Bob DeMarco highly reviewed her book . The true story reads like a well-crafted novel as Rose and Carol wrestle with the inevitable stages of Alzheimer's, the stages of grief and the death of Carol.   

I have now the privilege of being a Facebook friend of Rose and she messaged me that the book would be depressing for me. Yes and no. Yes, it was depressing because this is a path that I need to go down with my husband. But NO, not depressing, because it is so well-written and I am cheering for the progress of Rose in stepping out of panic attacks she had in her earlier life. I cheer the bold caregiver and Alzheimer's advocate she becomes by the end of the book. Not depressing because I realize that I can go through this process also. Rose did. With God's help, blogging friends, church family and the Alzheimer's support group I can go through this stress and challenge.

Here are some quotes from the book and my comments following the quote:

• We don't talk of it and keep an "up" feeling between us. p. 45 My husband and I are like that and to some degree we just continue to live each day as happy as we can.  (However, we have been able to be honest about this disease in the past months since attending Alzheimer's Association events together.)
• I see her embarrassment when she stops mid sentence in conversation, not able to find the right word. (p. 57) Here is some dialogue I had with DH recently, not as serious as Rose and Carol:

I forgot a document at home and DH says,

"Lady, you take the cake and I'm the one with the . . . What is it?"

Me:  "Short-term memory." We go back home to get the document.

DH: "I will give you one more chance. . . . [To our dog] What are

we going to do with mama's memory?"

• Next to a chair I place my hands on her shoulders and set her down, then sing, "Oh, we ain't got a barrel of money." (p. 105) I have mentioned before on this blog that this song, "Side by Side", is also our song--it's so upbeat and really anyone with a chronic illness needs a loved one to be by their side.
• I like how Rose quotes the saying, "It's much better to give than to receive." (p. 140)  More than a saying it is from Acts 20:35. 

Rose cared for her friend for fourteen years. In the process she really finds herself and she writes,

Being with someone who is dying of Alzheimer's, especially because the disease takes so long, watching the decline is a gift. We watch the person 'undo' their life at a slow rate. We may hate watching it, but in the end, I was happy to go through Carol's Alzheimer's Journey to death. It brought me closer to God than I'd ever been before. (pp. 176, 177) 

Rose, thank you for the realistic

and inspirational story that you weave.

Thanks that you continue to help Alzheimer's patients and their caregivers now as you volunteer and work in an assisted living facilities. Just A Word  is not depressing--it is hopeful as it ends.

The Experience of Dementia as a Journey –Author Unknown

I am going on a long journey by train. As I begin, the city skyscrapers and country landscape look familiar. As I continue my journey, the view reminds me of times gone by and I feel relaxed and comfortable. The other passengers on the train appear to be feeling the same way and I engage in pleasant conversation with them.

As the journey progresses, things begin to look different. The buildings have odd shapes and the trees don’t look quite the way I remember them. I know that they are buildings and trees, but something about them is not quite right. Maybe I’m in a different country with different architecture and plant life. It feels a bit strange, even unnerving.

I decide to ask the other passengers about the strangeness I feel, but I notice that they seem unperturbed. They are barely taking notice of the passing scenery. Maybe they have been here before. I ask some questions, but nothing seems different to them. I wonder if my mind is playing tricks on me. I decide to act as if everything looks all right, but because it does not, I have to be on my guard. This places some tension on me, but I believe I can tolerate it for the remainder of the trip. I do, however, find myself becoming so preoccupied with appearing all right that my attention is diverted from the passing scenery.

After some time, I look out the window again and this time I know that something is wrong. Everything looks strange and unfamiliar! There is no similarity to anything I can recall from the past. I must do something. I talk to the other passengers about the strangeness I feel. They look dumbfounded and when they answer, they talk in a new language. Why won’t they talk in English, I wonder? They look at me knowingly and with sympathy. I’ve got to get to the bottom of this, so I keep after them to tell me where the train is and where it is going. The only answers I get are in this strange language, and even when I talk, my words sound strange to me. Now I am truly frightened.

At this point, I figure that I have to get off this train, and find my way home. I had not bargained for this when I started. I get up to leave and bid a pleasant goodbye. I don’t get very far, though, as the other passengers stop me and take me back to my seat. It seems they want me to stay on the train whether I want to or not. I try to explain but they just talk in that strange language.

Outside the window, the scenery is getting even more frightening. Strange, inhuman-looking beings peer into the window at me. I decide to make a run for it. The other passengers are not paying much attention to me, so I slip out of my seat and quietly walk toward the back of the car. There’s a door! It is difficult to push, but I must. It begins to open and I push harder. Maybe now I will get away. Even though it looks pretty strange out there, I know I will never find my way back home if I do not get off this train. I hear the door shut. They take me back to my seat. I realize now that I will never get off this train. I will never get home.

How sad I feel. I did not say goodbye to my friends or children. As far as I know they do not know where I am. The passengers look sympathetic, but they do not know how sad I feel. Maybe if they knew they would let me off the train. I stop smiling, stop eating, stop trying to talk, and avoid looking out the window. The passengers look worried. They force me to eat. It is difficult because I am too sad to be hungry.

I have no choice now. I have to go along with the passengers because they seem to know where the journey will end. Maybe they will get me there safely. I fervently wish that I had never started out on this journey, but I know I cannot go back.

Author Unknown

Saga Sixteen

It's been three weeks since I have posted here. Note, if you just want to read our sagas, go to the right and click sagas. It really tells our story.

Speaking of our story, my husband and I now freely talk about his Alzheimer's and Vascular Dementia. In fact, we have been to two support groups (July 28 and August 8) where both the person with Alzheimer's and their spouse/caregiver are part of the discussion. Both of these have been at the Alzheimer's Association in Eloise, near Winter Haven, Florida. At the second one some of those with Alzheimer's painted; you see, folks, the economical Alzheimer's Association rents rooms with an art association. Sally and Jake were not at these sessions. August 8th they were babysitting a grandchild, and July 28th they were on a trip to the mountains.

Their trip, you think, would have satisfied Jake's yen for the South Carolina mountains and the cabin he built there and later sold. Sally and Jake rented a nearby cabin and went to the church they were used to going to when they stayed up there, but the road to the cabin that Jake build had a chain link on it and Jake was not able to see that cabin and how the new owners were doing. Somewhere in the recesses of Jake's stage-two mind he thinks that he and my husband can get up there and live without us wives. My husband knows better. At one point on their vacation he wanted to walk "home", but Sally was able to get him back to their rented cabin. They came home last Thursday. When we went to dinner the next night, Jake had trouble recalling his recent trip, the horseback riding, etc.

This afternoon Sally and I are going to our monthly Alzheimer's Association meeting in Plant City. Jake will hang out at the house with DH. This morning DH and I discussed orienting Jake in pool playing. Jake actually won a game with me once--not hard to do. I cleaned off the pool table from all my projects (currently I am teaching a counseling class) so they can play pool. Hope they do play pool while Sally and I are gone. DH, after all, gets very bored with Jake's obsessions about getting his driver's license back, and stealing away to the mountains. This is not to say that DH has no obsessions now, but I have learned to manage his obsessions.

My husband is happy and not bothered by his disability. When we go out to eat we blow the straw paper covering at each other before putting it in our cold drink. We play blue grass music and when the four of us are out, both Jake and DH sitting in the back seat of the car move to the music. DH and I sing  the song "Side By Side" in the car (I have it on my iPod).

Oh, we ain't got a barrel of money

Maybe we're ragged and funny

But we'll travel along

Singing our song

Side by Side

Don't know what's coming tomorrow. . .

Ironic. In fact, I don't know what's coming tomorrow, but live one day at a time, ever grateful that my husband and I have such good times and communication.