The Present

I arrived on Tuesday to find the house unusually busy. I was greeted by the little dog that belongs to their daughter. The eldest son was there, and a visiting home nurse was on the way. I had NO idea what was in store for me. I really never do...

Eldest son, Don Jr, felt a need to vent. I, of course, was conveniently located in the kitchen and had an invisible sign that said "Vent Here". So, now I know the rest of the story! But back up a bit. Don and Don Jr were seated in the family room when I first got there, and I could hear a lively conversation. It seemed centered around the place where Don Sr had grown up. It was good to hear him so happy. I had a quick briefing with Ella, and dove into my "PLEASE DO" list right away. See - that's still bugging me. When the visiting nurse arrived is when Don Jr found me in the kitchen and gave me the condensed version of their history.

Why does this look exactly like my house?

Don is growing more confused. Usually I get a good hour or two of lucid from him, but not today. His mind is slipping away so quickly it's alarming.

I arrived at the usual time, 12:30, and I had a real treat for the two of them. I could hardly wait to show them what I'd made. I had freshly  made bread dough, and had formed little "roses" around a chicken and broccoli filling I created. These were baked, and looked and smelled SO delicious. Ella was delighted!

Then she showed me "the note". Not just one - there was the "duty" note, and the "food" note. Seems there's been a family discussion. I already do absolutely everything on the to-do list, so that felt a little strange to see it all block printed like that. And the food list - well - let's just say they must not be happy with me creating healthful recipes from fresh ingredients. I now get to use ham, make fried cube steaks, use boxed seasoning mixes, and premade baking mix. This came as quite a shock. I'll work around it.

First on the list was taking Don out for a walk, which I did very happily. Usually he has been very "with it" when we're outside. Today this was not true. The first thing he said was "How did they do that?" as he looked at the garage, confused. "That looks exactly like my house. In fact .... this whole thing. It looks like my house. How did they do that?"

"Interesting" I said. "I don't know how they did that. Let's walk up here." We took a really great walk, and midway through he started naming the neighbors and telling me stories of the past, all of which sounded plausible. He was pretty steady on his feet, although he gave me a few scares as he walked on the uneven edge of the pavement. There are no sidewalks there. Thankfully, it's a set of super quiet streets. When we got back around by his house, he started in on another topic that became a fixation for the rest of the day. "What I want to know is - how did they move this house here from where it was?" You just have to go with the flow when this starts, and I told him that moving homes isn't that uncommon. In fact, I told him about the church in Waterville that one day rolled down the street in front of our house. "People move houses all the time!" I said. We don't have to know how, fortunately. That's not my line of work. Is that your line of work?"
"No" he admitted.
This subject came up over and over today. He said "Ella keeps trying to tell me they haven't moved the house, but I know they did. I don't know why she says that."

We came back to the house for lunch. I had put the little rolls into the oven to stay nice and warm while we walked. I served these with raw vegetables. Don ended up eating three! I love hearing the "mmmmm" sounds while they enjoy lunch.

Ella informed Don that his son, Don Jr, had called earlier. "Did you ask him how my mother is?" Don asked her. I could see this question threw Ella - so I piped up and said "Sometimes it helps to make notes of what you want to ask people when they call." This new normal is not coming easily to Ella.

Later, not long before I left for the day, Don pulled me aside and said very quietly "Are you one of those people who knows a lot about a lot of things?"
"I like to think I am!" I said and smiled.
"Well, I'd sure like to know how they moved that house down there from across the street. I was sick for one week, and when I came back it was moved. I know they moved it."
"Tell ya what" I said to him. "If I want to know anything, I look it up on the Internet. I'll go home and look that up on the Internet, and I'll print whatever I find and bring it to you. How does that sound?"
Well, that sounded just fine to him, and the questions stopped. Somehow that relieved him. I didn't argue, I just said I'd look it up.
When Ella came back into the room, Don told her "I went for a walk earlier, and a nice lady stayed real close. She was wearing a green sweater." Ella smiled and said, "Well, there's a lady here who is still close and she's in a green sweater!"

If you have a loved one who is losing themselves to Dementia, there are some basic conversation ground rules that will make their lives less scary. Don't argue or correct them. If they ask about something like their mother, or father, or home, get them to talk to you about that. "Sounds like you really love your mother. Tell me about her." Remember, and this is super important, if you helpfully inform them that their mother is dead, it's the first time they've ever heard this information. You will succeed in being right, and in devastating them. My advice is - don't do that. Walk in their reality. Get used to the new normal.

Housekeeping?

I'm a Care Giver. That means I give care. I assist with daily activities that aren't so easy anymore. I monitor for changes in appetite, mental activity, and physical ability. I prepare meals, and do light housework as needed.

Or.... I get to be a housekeeper. Here's the note I found today. I started to be a little grouchy, but I figured that soon enough my true caregiving skills will be needed and they'll have to find someone else to do the "Please Do" list.

I'm not too proud to work - that's not the point. But, wow. This is a "venting" blog, and the real story will be next.

Would you like a little lunch?

That's an appropriate question when you're caring for someone who is thinking clearly. And, in the case of most elderly people, a "little" is about what they will be able to have for lunch. If the person has Dementia, your question will be phrased more like "I've made a little lunch. I would love to have you join me!" as you lead them to the table.

Here are some "little lunch" ideas

• Mix shredded cheese, mild salsa, and a little sour cream or yogurt. Open nitrate and nitrite-free slices of lunch meat, and spread some of this filling on each. Roll, and slice into 1 inch pieces. Arrange on a plate with lightly steamed or raw vegetable pieces between. If there are no digestive issues, this can be served with crackers
• Lightly steam broccoli, carrots, and green beans. Chill, or serve room temperature. Serve on a small plate with hummus for dipping. Arrange the veggies in a circle around a custard dish full of hummus. The prettier the better. 
• Spread organic, creamy peanut butter mixed with a little honey or applesauce and cinnamon on whole wheat toast. Top with second slice of toast, and cut into 1" squares. Serve with tea.
• Slice cucumber into rounds, and top each round with a little mound of tuna salad. Arrange in a flower design.
• Roughly dice cooked chicken and mix with a little mayonnaise or plain yogurt, diced onion, celery, carrot, and cucumber, and serve on a bed of greens. 
• Make open faced cheese sandwiches and grill, cutting into triangles. Serve with a small bowl of tomato soup, if senior is able to easily eat soup without spilling. If spilling is an issue, serve in a small mug with a large handle. The triangles of cheese sandwich are nice, dipped into the soup. Make this fun. 
• Slice carrots, celery, cucumber, etc and serve with a bowl of peanut butter for dipping. Alternatively you can use apple slices. 
• Deviled eggs with pickles and olives, served with a green smoothie. 

One of the main things to keep in mind is that you will want to preserve dignity in every situation. Always serve food that's easy for the senior to eat, and cut into small pieces in the KITCHEN rather than in front of them. I always serve each plate, mine included, pre-cut. They are not children. 

Check out yesterday's blog post if you have concerns about being able to afford to stay home caring for your elderly loved one. 

How Do I Get Paid for Caregiving?

At least once a day I hear a version of this question: "Is there a program that may compensate me for lost wages since I cannot leave my parent home alone all day?" 

Very few people can afford to simply walk away from career and paycheck to care for their aging or ailing loved one. The number one question caregivers ask on a family caregiver support forum I frequent is “How do I get paid for caregiving?”

The answer is – you may be able to, and you may not be able to. A good resource to answer that question might be your local Area Agency on Aging. But what if you could get paid very well while caregiving? Read on...

Let The Care Giver Give Care

Ella is very proud, and scared, and feels her life is spiraling out of control. She's losing Don at a rate far too fast - she's not finding it easy to adjust. Yesterday when I said "He's losing himself" she burst into tears. She told me that he had been unable, that morning, to hold a conversation. He was sleeping when I arrived at 12:30. She filled me in on the decline since my last visit, the previous week.

She got him up at about 1:30, to have a little lunch. As always, he greeted me with a huge smile. Confused about what was happening, he gestured toward his chair and lunch plate and invited me to sit. I took his arm and said "You're the King today - YOU get to sit!" I tell him he's the king, every shift. I know that, although Dementia will soon not allow him to remember that I say that, he will remember the feeling between us when he hears it. I think of it as sort of a hypnosis thing. I'm so funny - I have my own theories. I figure terms with which we joke and laugh now will bring joy to him later, when he is no longer able to remember we've had the conversation before. I don't have science for this, just experience. I always tell him he's the king. "The king sits in THIS chair and puts his feet up while I vacuum!" That sort of thing.

She had to run to the clinic to pick up a letter the doctor had written for Don. I thought this would be a good chance for me to interact with him and get him communicating and also get him used to having a Care Giver be his companion. The need for this is critical. Suddenly panic crossed Ella's face. "I'll just take Don with me" she said. I wonder if she is worried or threatened about someone else caring for Don. This Care Giver stuff is new to them. But, I just asked if she felt comfortable with his strength getting in and out of the car. She thought it was fine.

Later in the afternoon we discussed his need for fresh air and exercise. She asked if I would accompany him on a walk, as she was absolutely unable to do so. Her hip is hurting more - she's not taking care of herself. So, at about 3:30, Don and I set off on a walk through the neighborhood. I said "You can show me around!" and he said "I don't know this neighborhood". They've lived in that house over 40 years. So I said "Great! We can both explore it! Let's go!" As soon as we stepped outside, though, it was as if the air cleared the fog. He told me how old he was when they moved in, and how old he is now. I laughed and said "I bet you never thought about your children being old enough to collect Social Security when you moved in!" He stopped, looked at me, and just laughed. "Boy, you've got that right!" he said. He was a little unsteady on his feet, but had his really good cane and I was in that hyper-alert mode. We walked out onto the street (no sidewalks) and started talking about the neighbor's houses and yards. Then the school kids began to run up the street. He loves this time of the day. I was surprised to hear him call out to two neighbors by name, who were waiting for kids coming off the bus. One was a grandfather, and the other a father. He conversed appropriately with both of them, and they were both very glad, as they said, to see him "out and about." He was completely lucid for almost the entire walk.

Then he paused and turned to me. "Do you know what Ella's doing?" he asked in a mysterious tone. I answered him with what she was doing right then - "She's at the house shredding old documents."
"I don't mean that - not what she's dong right now. Do you know what else she's doing?"
"No... tell me."
"Well, there's a house we're living in. Not this one over here - the other one. She got that house. She got that. And there were ten or twelve of them, and they were free!"
"Wow, really? She's very clever."
"Hmm. Maybe TOO clever," he said with a nod.
"I do like this neighborhood" I said.
"Yes, I do too."

By then his nose was dripping. I always find it funny that elderly people don't seem to even feel their nose dripping. He and I aren't quite at the point in our relationship that I can grab a tissue and wipe it, so I figured it could just drip. Sometimes on me. And I was thinking how funny it was that this doesn't bother me at all.
"Are you warm enough, Don?"
"NO!"
I laughed. "Well, let's zip up your coat!"
"You can pretend." (I have no idea what that was supposed to mean!)

Coat zipped, we got ourselves back to the house. This included walking up a pretty steep hill!  He was so happy and relaxed from the walk. Ella greeted us and seemed relieved that he was fine. I told her of our good walk and conversation. She understands that he needs this a LOT more than is happening. I see her gears turning as she faces the decision of having more hours of care for Don. "I just never thought it would come to this" she said, when we talked about it.

Don stood happily in front of the gas fireplace, warming up. As I went to give him a hug when I was leaving, I said "WOW! You really are warmed up! I think you're about done!"

I would have to say that, other than having them visibly LOVE eating the food I prepare, hearing them laugh is my favorite part of what I do.

If you're a family Care Giver, please consider letting someone else come and care for your loved one to give you a break, and give them much-needed mental stimulation. Interview, with them, the candidates, and choose someone who interacts well with your loved one. Feel free to say - "Not a good fit, thank you." As professional Care Givers, we, too, appreciate a good fit. It's a delicate job, and very personal. But don't struggle alone. If Ella can allow me to take Don for a walk, you can also allow a trustworthy person to care for your parent, or spouse, or child.