What It's Like for Carol's Husband

Bob on the Reading Room wrote a poem that says it all. See Bob's poem.

Dementia
by Max Wallack

It gallops in silently on powerful hoofs

Snatching sweet, precious, forgotten memories

Turning true-blue loyal friends into treacherous strangers

Clogging synapses with emptiness

Crumbling trust into excruciating paranoia

With bleak darkness comes the anxious wakefulness of broad daylight

And bitter terror encompasses every living fiber

"If I sleep, where will I be when I wake up?"

The compulsion to run, the paralysis of fear

Mature, child-like dependence

Retracing youthful development, but in rapid reverse

Cureless medicines, meaningless conversations

Leading up to the inevitable

Increasingly DH is asking questions about what the schedule is.  I do not at all tease him when he asks repeat questions, despite the fact everything is on the large FlyLady calendar.

We enjoyed a dinner at Cracker Barrell last night with a couple my husband had known years ago. He was very comfortable. They noticed that he had lost weight since they had seen him. They are part of his long-term memory. I don't think that they really noticed his dementia last night.

On the way home from this dinner he asked about where he worked when he retired over a year ago--he didn't remember. I reminded him that we passed it on the way home.  I need to go there, he said. We have a Christmas party to go to tonight and we will go by that business and also where we lived when we were first married over ten years ago.

Somewhat in denial about memory, he enjoys his days and trusts me. Often he tells me he loves me. We do normal socializing at this stage. I am blessed each day.

Missing Keys, Appointments and a Full Moon

What a day! In the morning my husband could not find his keys. We also had a Watson Clinic appointment for 12:45. He is most upset about the loss of the keys and we went to get copies of them for $7. I resist getting a copy of his car key which is $60 at the locksmith's and $100 at Ford and suggest that they may turn up sometime this week at the house.

Next he didn't want to go to the doctor's appointment and so reluctantly I call to cancel the urology appointment, obeying my husband, although not a wise move in my opinion. He is very mad at me, a mood he does not remember later. I even called my pastor. He is sick, he says. We go home.

After getting his equilibrium at home, he agrees to go to the doctor, not remembering his earlier sickness, anger and refusal to keep that appointment. I call the urologist on our way to keep that appointment and they can't affirm he had an appointment. A quick check at the primary care physician's office and we discover it is for the carotid doppler exam instead. He had taken the message for today's appointment, but not the detail of where the office was--urology or heart. I had assumed it was urology.  At least we made it! I wonder if the results of the carotid exam will help determine why he is slowing down.

On the way home from the appointment my husband realizes he has put me through some hard times in the morning, but doesn't remember what they were exactly and I bring up the specifics. Says he will have to carry a tape recorder. We are back on good terms, but I wonder if this is the beginning, the foreboding of times to come that I have been reading about.

Suddenly after being home about an hour his keys show up and he has no memory of missing the keys in the morning. I ask where they were--"in his pocket," he says. Now we had checked that pocket along with numerous other places in the morning. Sure glad that we didn't buy the expensive Ford key replacement. Later I mention the keys, and he says, "Oh yeah! I have to find those keys!" Total frustration I have.

By dinner time I am in no mood to cook. I have zeroooooooo spirit left in me. He sees this and we decide to go out to dinner. At dinner I tell him the story of a wife trying to cope (my story today) and suddenly we start to laugh. He teases me because I wanted to use his cell phone to see if my cell phone was in my large purse: "You mean you can't remember where you put your cell phone!" Got my equilibrium back!

Thank you, Lord, for our wonderful love for each other, bearing all things, and laughing at the end of the day. Thanks that we found those keys and got to the 12:45 appointment with the correct doctor. Lord, help me deal with anger and forgetfulness in my husband when in happens and help me to remember we had this bad day with the full moon in the evening to laugh. Thanks for the people who maybe read the first draft before we went to dinner and prayed for us. Help me accept whatever is coming down the road.  Amen.

8/3 UPDATE. Carotid doppler stable! Great!

What It's Like to Have a Husband With Dementia

• He says, "Am I 92?" He is 72.
• He says, "Is it 2008?"
• He confuses the credit card and the debit card at the pump. No, sweetheart, we don't have a pin number for the gas credit card. Wish we could have used the debit card as we usually do but money is tight. Will pay off that gas card when the bill comes in, however, next month.
• Thinks the clicker to open his car will also open and close the garage door.
• Forgets what he had for dinner last night so I can serve the same thing several nights in a row.
• Forgets to eat lunch I have made him when I am gone. Once I came home and he had forgotten both breakfast and lunch--a concern because he is diabetic and also missed his two servings of coconut oil. Now I call him to see if he has had lunch/breakfast.
• Knows coconut oil helps him. Jokes that when he slips into bed he slides across the bed.
• Has no interest in books and little interest in his computer anymore. We have gotten rid of books and much of his shop equipment.
• Watches TV much of the time. Don't know how many times he has watched "Godfather" movies--all of them. I record the evening news on my iPod and watch it the next day or go in the bedroom to watch TV.
• He loves that I can write on a little notebook computer by his side while he watches TV movies that bore me.
• Long term habits are great. Does yard work and makes the bed. Will vacuum and clean the carpet, although sometimes the process is confusing to him.
• If I ask him to do something he will forget. What husband doesn't! I try to put things in writing or I will be a horrible nag. Even if it is in writing, I have to be patient.
• I put new procedures in writing. He uses the calendar and has a wrist watch with the days of the week and the date on it. Several days he has forgotten lunch which I had prepared for him on a plate in the refrigerator.  
• Loves Ms. Garmin, the car's navigational device. Have put in writing how to use it. Able to run errands when I am not home with that device.
• Still very loving and considerate. Loves accompanying me when I am out and about. He trusts me.

The future? There are many kinds of dementia, the worst being Alzheimer's. Being married to a husband with dementia, not diagnosed as Alzheimer's at this point,  is just a challenge on worst days and on many days livable. Will offspring get dementia? Will I get dementia? Will we be able to stay in our home? Will the new health care bill cover  medical bills in the future or bankrupt us in the near future?

We all just live day to day and place our future in God's hands. He has guided us in the past. To God be the glory in all things.