Last Stage Caregiver Dolores' Candid Interview

Front porch chats are preferred, but when blogging friends are separated by miles, chatting and typing the interview on Facebook also works. My husband is in stage one of Alzheimer's and I wanted to know more about the journey. Dolores lives in Texas and I live in Florida, but we have become blogging friends. Here is the interview which took place recently.  

Carol: Can you chat now? I have one other message to do. Hold on. . . . I am back now.

Dolores: Been walking the dog, I'm back

Carol: Great! How was your day, first off?

Dolores: Very good, church circle ladies meeting and weather is wonderful...how about u?

Carol: I substituted. Easy day.

Dolores: Great...

Carol: You have always been neat, but how did this help you going into Alzheimer's?

Dolores: Just less mess and confusion for me and David. When my house is messy or cluttered, my brain feels confused. That probably sounds weird, but true for me.

Carol: A place for everything and everything in its place for David and you. Like you I want less and I want neatness and this will serve us well then.

Dolores: Yes, I started getting rid of what we didn't need right of way, sold our house, gave David's car to sister in law. My motto was less is better. All the things I gave away, I haven't missed them at all.

Carol: I both try to enjoy every day and plan ahead. However, it might be easier to ignore the disease. But that wouldn't be responsible. It has been hard for me to assume decision making when Herb had been the leader.

Dolores: Plan ahead and then enjoy every day.....you can't plan everything though; each person and circumstance is so different. One day at a time.

Carol: Was it hard for your husband when you downsized from a bigger home to a smaller home. Did David miss his old home?

Dolores: No, he didn't mind moving, didn't mind not driving. He’s always been very easy going which made it easier for me.

Carol: How did you deal with worries about David when your dear husband used to be your confidant

Dolores: I have a very best friend, she's the same age as my son...she's been my rock. We cry and laugh and discuss all the “what ifs”.

Carol: You often blog about her. How has blogging helped you during this time?

Dolores: Blogging has been so wonderful! I try my best to be real and honest with my feelings, and I feel like people really know me.. The blog has been good for me to unload my feelings, receive the wonderful comments, and keep a record of a timeline of the disease

Carol: Did David accept that he had Alzheimer’s?

Dolores: David accepted it from the very beginning; I know he suspected it....David's Alzheimer's went very slow and then started going down a couple of years ago.

Carol: Yesterday I asked my husband about how he feels about his short-term memory and he said he isn't bothered or doesn't notice it! How can that be! He forgets he forgets! Did David start to notice when it got worse for him--when he couldn’t do things?

Dolores: See, I would never question David about his memory ....I figured he knew it, and we didn't need to talk about it.....No, I don't think he was aware as he got worse, but maybe he did and we didn't talk about it. We didn't talk about Alzheimer’s, other than maybe joke when something silly happened, that it was Alzheimer’s doing it, and we'd laugh.

Carol: Did you have to deal with anger in David? I have had to with my husband several times. Then he forgot he swore or was angry.

Dolores: David would get a little upset when he'd see something that I didn't see, so I got where I'd go along with whatever to keep peace. The mood swings are just part of the disease I think.

Carol: As Bob DeMarco writes often on The Alzheimer’s Reading Room, you have to enter into their reality.

Dolores: That's right, and disagreeing or arguing only makes things worse. It's so hard not to disagree, but it gets you no where.

Carol: You would give him some melatonin so he would sleep well. Did you ever have problems with his getting up at night?

Dolores: I only gave him the melatonin for a short time. The only problem I had at night was for me to wake up when he needed to go to the bathroom....or might not find it. I didn't sleep well at all. Always trying to make sure he could find the bathroom or he’d go on the floor (many times).

Carol: Did you have problems with mirrors as some have--seeing some other man in the mirror?

Dolores: Never....in fact I have lots of mirrors. Also he didn't repeat questions or answers like we often hear, each person is so different when he would see things (hallucinations) it would be hard for me to keep my mouth shut and not disagree, but I got better with time.

Carol: Was Aricept 23 what made the hallucinations lesson you think?

Dolores: No...... As the disease progressed his hallucinations began... Aricept stops working after a while.

Carol: Did David ever wander?

Dolores: No he didn't wander, but I watched him closely.

Carol: Because of your blog I use music. I have playlists on my iPod that I often play for my husband in the car and will in the house at some point. This may work when DH no longer cares to watch TV.

Dolores: Yes, the music was so wonderful, because he suddenly stopped watching TV and reading....so listening to music and sweeping our patio were God sends—something he could do.

Carol: David would read, but my husband doesn't wish to read now. Did you need to find ways to entertain David?

Dolores: We'd walk the dog around the block in the morning and evening. I'd take him for a ride in the car....he'd sweep off and on during the day on our patio and the rest of the time he would look at the TV, or play his country music and clap his hands. That's really all he could do.

Carol: How did you occupy yourself with something when it got to that point?

Dolores: I love to work with my plants on the patio, organize and clean house, visit with friends and spent time on the computer. I started hiring someone to stay with him for a couple of hours so I could go shopping.
Carol: Was he talking fluently at the time you decided to put him in the nursing or Alzheimer's facility?

Dolores: No. He would say a few sentences that made sense and many that didn't.

Carol: I remember you sort of tricked him into going there.

Dolores: I started taking him there for respite care once in awhile. I'd tell him I needed to shop and couldn't leave him alone, he was ok with that.

Carol: My husband is having trouble being motivated to mow the yard. Maybe he'd like having someone else do it? What do you think? They say keep your loved one as busy as long as possible. I think we need to hire someone, but then he might take offense.
Dolores: Maybe if you tell him how much it will be helping someone else by them doing the yard. He might end up liking not doing the yard.
Carol: Yes. That might work. You have achieved for better for worse, in sickness and health and almost till death us do part. Will you be both relieved and sad when he dies? You have to be living in grief now when he doesn't know you when you visit him.

Dolores: I'm sure both feelings, but it's so sad to see him in bed, drinking his meal through a straw, blank look on his face....the David I knew is so different....mostly I will be relieved that he will be whole again when he dies, but I will miss going to see him...a mix of emotions.