Tuesday, February 25, 2014

Walking With Don

He likes to act like it's a chore, and a drudgery, to take those walks. His eyes say otherwise. He pulls on his baseball cap, and does his best to get into his jacket without help. I step in at the moment he begins to exhibit frustration.







We go the same route each day. With Dementia it's not so much about variety - it's about safety and familiarity. Some of what I do isn't due to training, but due to watching the results in my treasured charges. Don responds well when we start our walks by observing their yard. This helps me know where he is that day. Is he in the present, knowing he has lived in this house for 50 years, or is he confused and thinking this isn't his house? Knowing that helps me help him. I ask open ended questions. I assume nothing.



We walk to the left, down the hill. The road curves to the left at the bottom of the hill, about 3 houses down. We generally walk 2-3 blocks. Sometimes we encounter neighbors along the way, and Don always calls out to them, cheerfully. Today Rick was working in his yard, pulling up dead plants. Don began speaking to him, but Dementia had the upper hand today, and much of what he said was disconnected and made little sense. The neighbor ignored this, and made a great effort to understand.


 Jim came out of his house to shake both our hands and have a conversation. He encouraged Don and told him "You're doing great". He didn't seem shaken when Don described "felling the trees" and bruising his hips. Don gestured around at the tall pines when he said this. I don't know if Jim had a clue as to what Don was telling him. It's been on Don's mind, lately, that he once fell under a tree and I helped him up. This happened in August.

Often, on our walks, Don is reminded of a story. He launches into it with great excitement. "Do you know where he was born?" he asks me, regarding the owner of one of the homes. Of course I don't, and shake my head. "Well, there are three."
"Three?"
"Next to each other. Three.... um..... next to each other."
"Countries?"
"YES!"
"They're near Russia. But I don't know."
"Ok - like Estonia?"
"Yes, that's one of the three."



Our conversations go like this much of the time. I search my memory banks to fill in his memory blanks. I just made that phrase up. It's clever, right?


Today I was really put to the test. He had LOTS of stories, all with huge blanks. I told his wife it was like reading a book with some words blacked out or pages missing. But he enjoys telling the stories, so much, that he just powers through.




When we started to approach the house, he was visibly tired. I helped him up the front steps, and he said "Thank you for taking me out there." I smiled. He paused, then said "And - thank you for bringing me back. That was even more important." We laughed.






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Friday, February 21, 2014

"I have to go to bed"

It wasn't our normal day. It was raining far too hard for Don and I to engage in our favorite activities together; working in the yard and taking a walk through the neighborhood.

He looks forward to Tuesdays and Fridays, when I come to care for their home, and for them. Lately I've been bringing "treats" for lunch. It's true that the visits from his children bring joy, but my visits are regular and predictable. The activities have become both predictable and necessary to his emotional health.


When he saw it was just pouring relentlessly, I could see the understanding in his eyes, that this day would be different. He was worried about being "in my way", so he retreated quietly to the office and silently watched Ella work on taxes.


He used to do these things. As I said before, he's well aware of his new limitations, and it's a deep, grieving process. Imagine watching all you loved to do slipping away. You keep hearing "You can't do that" and "No - don't do that".

I met him in the hall on one of my trips  back and forth. He looked so dejected. His head was low, and he said "I have to go to bed." I waited. He pointed to his head. "It's because my.... this. It's broken."

It's broken.


 I just patted his arm. "I know, you feel that way. Go rest, if you feel like resting."


It reminded me of a song I heard when I was in training as a Caregiver for clients with Dementia and Alzheimer's. You can watch it on YouTube here. The song is called 'I'm Not Me Anymore'. It sums it up. Do I cry when I watch this? Oh, no, not me! *cough*












An hour later the sun was shining brightly and the sky had turned to blue. I rushed to their office and asked Ella if she could check to see if Don was actually sleeping. "I would like to take him out. I think he's depressed." I said.  She decided, asleep or NOT, I was right, and she'd wake  him up for the walk.


A confused-looking but happy man emerged from the bedroom and slowly made his way up the hall.

"Look what happened while you were sleeping!" I said. He decided it was because he took a nap that the sun came out.

He got ready as quickly as he could, and off we went on our walk. It was precious. As we were leaving, Ella asked "Do you want your cane?" and he replied, gesturing toward me, "She's my cane."

I'll tell you about our walk tomorrow. Meanwhile, consider that your family member with Dementia may be very aware that they're "broken". Find a routine in which they find joy, and faithfully keep that routine. It can be in short bursts of time - 20 minutes here and there. You won't say "remember" about any of this. You'll just do it again and again. Their hearts will remember, even if their minds forget. Think of it this way: you leave an impression on their heart that will be felt forever. That gentle impression warms when you re-appear. They may not know why seeing you makes them happy, but their heart will always remember. Dementia and Alzheimer's affects the brain. Love affects the heart.



Lyrics to the song:
I’m breaking // I can feel it inside // Something’s taking // over my mind // Causing page after page // of memories to fade // Into nothing
I’m losing // more of me everyday // It’s confusing // I feel lost and betrayed // As places and things // faces and names // Fade into nothing
I’m not me anymore // Not who I used to be, anymore // There’s a thief running loose in my head // A thief who won’t rest till I’m dead // Stealing my mind one cell at a time // Till I’m nothing
I hate this // I can’t run, I can’t fight // I can’t take this // I feel buried alive // I don’t know who I am // Just a shell of some man // Left with nothing
I’m not me anymore // Not who I used to be, anymore // There’s a thief running loose in my head // A thief who won’t rest till I’m dead // Stealing my mind one cell at a time // Till I’m nothing // Just nothing // Nothing

Tuesday, February 18, 2014

"An item"

Dementia has a lot of stages, and a lot of manifestations. So far, with Don, it's been very low key and predictable.

Friday I arrived to find Ella a little bit rattled. Seems Don was insisting on going out into the yard and working all alone, which is so unsafe for him. He also had taken a great risk and stepped over a kiddie gate blocking the stairs on the back deck. She had begged him to wait for me to arrive to go into the yard, but he countered it with "Don't tell me what to do!" And so that phase begins.


After I arrived he confided in me that he had sneaked out. I reminded him that I enjoy working with him in the yard, and that I'm there to help keep him safe. We went out and worked hard, and as always he chatted happily while we were out there.

Then we were done. Well, the clean up was done, but he wasn't "done" being in the yard. I followed him to the shed. He turned and looked directly at me with a look I had not seen before.
"Don't you have some work to do inside?" he asked. I smiled.
"I always have work I can do."
"I'll be out here for two hours."
"Um..... "
"Okay, I'll be out here for ten minutes, then."
"OK. But I will be watching you from inside."

Reluctantly, I went back into the house to do a few  household chores, checking on him every few minutes. I could see his gray head through the shed window. He was walking back and forth, aimlessly. Take the gloves off. Put them back on. Pick up a tool. Put it back.

In about half an hour I came out there as if nothing had happened and asked if he was ready to take a walk. He was very ready, and was back to his normal happy demeanor. I just think he needed to have his way for once. The thing is, that won't be safe at all for much longer. That's unfortunate.


We took a wonderful walk around the neighborhood, talking with anyone who happened to be around. It's like the air lights up his brain. When we got back, I suggested that we take a drive and check out where I used to live, and some of the new construction in the area. He was very happy about this, because he loves my truck.


We drove and drove and drove, and he directed me where to turn with flawless accuracy. It was amazing, and so much fun. Almost 100% of what he said was lucid and perfect. We saw where I used to live, and he admired my old neighborhood.

His daughter had arrived just as we were leaving for the drive, but he was unconcerned and didn't seem anxious to get back home. When we did get back home, he was exceptionally happy. The daughter had brought Valentine's Day cupcakes and invited me to have one. Suddenly, Don started out the back door into the garage. "Where ya goin', Dad?" his daughter called out.
"Just out here...." he said in his lilting voice.
They looked at me. I said "I think he's going to the freezer."
Sure enough, that's where he was. His daughter asked him what he was getting out there.
"Oh, just an item." he said casually.

He returned with a precious little plastic dish of frozen applesauce. Applesauce he had made. It was for me.


Maybe you understand this gesture. Maybe you'll have to think about it. He made that applesauce during his last "okay" weeks. He will never make applesauce again. He wanted to give me something. He wanted to give me something back.

An item.


It's very, very special to me.






How do you get through long days of caring for someone with Dementia? How do you take care of YOU? I take good care of me. Here's how.

Saturday, February 8, 2014

Finding The Words

He fills in the gaps with gestures. Sweeping gestures, as if inviting me to find the words that have escaped his fragile mind. I search for them as hard as I can; I do not want to disappoint. The enthusiastic "YES!" is a reward. If I am unable to find the missing words, he shakes his head and says "Ohhhh. My... dumb brain..." and taps his forehead. But those moments are fewer, as he has figured out that I can piece a story together pretty well without a few elusive words.

We started off on our walk on Tuesday after filling the yard waste recycle bin. At first, he wanted to grab his saw and cut the branches we couldn't fit into the bin, into smaller pieces. I made him a deal, which he accepted, to take a walk instead. Magic words - "Your doctor has asked you to take more walks."
"Oh, I know," he said, resigned. But, in fact, he was looking forward to taking a walk. We had gentle snow flurries swirling around and it was just beautiful.


He's always wanting to give me gloves, and this day was no exception. He thought I should wear the gardening gloves I'd been using, during the walk, and then take them  home. So endearing. But we got the proper gloves on, and set out on our walk.

In the driveway he suddenly lists to the right, like a ship that hit a big wave. "Did the driveway move on you?" I ask, cheerfully, reaching for his arm. "Yes. Yes it did. Just a little." He's fine.

The neighborhood has no sidewalks, and that's a little scary, but I don't let on that it is. This day he has chosen not to take his cane.

Here's the epiphany I got on Tuesday. When we leave the house together, he starts talking and does not stop until we're back in the house. He has a running commentary on the homes, the construction, and the past events of the neighborhood. He chats with neighbors, easily, knowing exactly who they are and asking appropriate questions of them. He gets stuck, sometimes, as he tells me the story of one of the neighbors. That word loss thing. He gestures, inviting me to find the missing words. It's like a game. Once he told me that the neighbor worked for my friend. He looked at me square in the eyes after he said that, and I wildly searched the memory banks for who "my friend" could be. "The former governor?" I asked. "YES!!!" Whew!


Tuesday as we neared the house again, after our walk, he was clearly tired and cold. I said "Hey, at least this way, when your doctor asks if you've been taking walks, you can say yes!"
He stopped and smiled, then leaned in and said;
"Sometimes I lie."

How do I keep my energy and focus while caregiving? I have a secret. I'd love to share it with you, if you're in need of energy too. It may or may not be for you, but it works for me! Check it out here. There is a short video, and if you introduce yourself you can step into my virtual store.





Friday, February 7, 2014

The Man of the House

Imagine knowing that you were supposed to clean up the yard, and that you had always cleaned up the yard, and having someone forbid you to even go outside. Imagine if much of the pride you had was in how immaculate you kept that yard.


Don and Ella have a pristine yard. Carefully planned, thoroughly landscaped, and always as clean and neat as the inside of their house.

Except right now. A huge pile of yard debris and pine needles was driving Don crazy. Lunch was done, and he was ready to get his hat and coat on and go out to the yard and pick it all up. Ella held onto his chest and pleaded "Honey, you must not go." When that didn't work she got stern "Honey. You are NOT going out in the yard." Enter the nosy caregiver!
"Is there something I can do to help?" I asked, very cheerfully (and refraining from giving her a big old stink eye).
Don looked puzzled. I said "I can help you clean up that pile in the yard that's bothering you!"
"You would????" he smiled.
She didn't look really pleased. I felt a lot like Cinderella. After all, my chores were done, except for the ironing. The ironing of the sweat clothes, and jeans. I pushed the ironing board up against the wall, unplugged and stored the hot iron, and got on my sweater.
"Let's go outside!"

The man of the house struggled into his shoes, and got his coat and hat, and out the door we went. He stopped and looked at me. "You.... you do this stuff?"
"I do whatever is needed. Yes."
"Well, okayyyy...." (sing song voice)

We raked, shoveled, and gathered as much debris as we could into the yard recycle bin. We filled it to the absolute top. He looked concerned. I just smiled.

Dementia is so interesting. Some muscle memory and routines are undisturbed for some people, and then other things leave gaps. He could not figure out how we were going to get the recycle bin up to the street. I said "Let me turn this around. Then you'll grab one side, and I'll grab the other, and we will work together."
And work together we did. He was so surprised that we could get that all the way up to the walk beside the garage. "I'll take it from here!" he said so happily. It was obvious that the work, the air, and the sense of accomplishment had done him good. We put bin out by the other two, and slowly walked back to the back door. "I think I'll go get my saw and cut up those large branches out there" he said.
Emmmmm no.
"Hey," I said. "I'll make you a deal! Let's do the sawing tomorrow, and take a walk today."
There were some small snowflakes swirling around by this time.
"Okayyyy. Do you think we should walk in this snow?"
"I think it will be fun!"
"Okay, then. Let's do that."

I'll tell you about our walk tomorrow.









Thursday, February 6, 2014

Gentle, quiet man

I see the photos from the past, and he was strikingly handsome. Tall, a little on the thin side, and with the best of smiles. He's still all of those things. He has a quiet grace about him, and he speaks softly. His "uh huh" response to questions is musical. It ends on a higher note, sort of sing-song. You'd have to hear it, I guess.

He has a cane, and a walker. He doesn't like either one. Some days he's pretty steady on his feet, and some days I'm worried about him just trying to stand up. He knows he's failing. He knows he can't think of the words he wants to say, and these things bother him greatly. I can tell he was self-assured in days gone by. Now he feels, as he says, stupid.


He's worried about things like me driving in traffic or weather. He's worried that I live so far away. One day he was obviously thinking about that, and he said "Say we were to come and visit you one day. Where would we go?" Such an interesting way to ask. I described the drive from highway 522 to State Route 2. "Oh, my! You do live way, way out there, don't you?" The thought of him coming out for a visit is delightful to me.


He tries to read the paper, but it's obvious that the words just sit there and don't communicate with him anymore. He scans the same news over and over, and then quietly gives up, folds the paper, and tosses it aside. Hands on the arm rests of the recliner, he stares into space until he falls asleep, mouth open. That hurts my heart. I will sometimes come in and put my hand on his hand and ask if there is anything he wants or needs.

He tried to press the numbers on the phone yesterday, to call his sister. He was unable to press the right ones, because the word "six" and the numeral 6 did not relate, in his mind. It's happening. I hate this.


Sometimes he stands in the hall, unsure of which direction he intended to go. If it's only for a few minutes, I don't intervene. Sometimes I know that means he is trying to figure out if he has to go to the bathroom. In no way do I ever want to embarrass or frighten him. If he wanders back and forth in the hall, I will cheerfully invite him to watch TV while I do a chore. "Keep me company!" I say. He likes that, and says "Oh, okayyyy" in the same soft, sing-song lilt.


He's still at the stage where he knows he's losing himself. One day, mercifully, he will no longer be aware of this. I pray that he still remembers that he feels better when I'm there, should that day come.



Wednesday, February 5, 2014

Do you know what she did?

Stories can become very sensational, in Dementia Land. The basic story is probably true, but some of the facts have gotten made larger than life. It's fascinating.

Don and I took a very lengthy walk around his neighborhood. You'll recall that he is obsessed with the City having moved that house to its current location while he was in the hospital. Sometimes the hospital stay was a few weeks ago, and sometimes a few years. Sometimes the house they're in now was "free", and he has NO idea how in the world that happened or for how long they'll be able to stay. I never know what he's going to say, but I'm always ready to reassure him that he is safe.

Anyway, on this particular day, I remarked about the tree in their front yard. It really does have personality, and more so now that there are no leaves. We stood in front of the house and considered the tree, and the other trees which line that edge of the property. He got all wound up, suddenly. "Do you see all......  all of that?" he asked, gesturing toward the trees.
"The trees?"
"YES!"
"I do. They're so pretty."
"Well, do you know what she did? What she did when the City.... they wanted to....  they were going to.... but she got her gun!"
"Oh, my gosh, really?"
"Yes, and our daughter was going to be born.... tomorrow. But she was still out there, with her gun, and she wouldn't let them...... she wouldn't let them! So you see those are still there. She told them they didn't need to take them, and she was right."
"She wasn't about to let them take the trees?"
"That's right! And our little baby daughter was just born, and  she sat out here with the baby and with her gun. Every day. Until they gave up."
"Well, then. I guess I better stay on her good side!"
He smiled and nodded.