Day 560 Boom! Depression

Day 560 of Eldercare. 10 October 2013

With eldercare, it can be dangerous to lose yourself in the chores at hand. It can be unhealthy to identify with the elder in your house so much that you forget your own bodily requirements, your own place in the home, and your own place in the world.  And it sneaks up on you. It was about day 150, in my first year of caring for Millie, when I realized I had lost five pounds. That’s one pound a month. After I prepared and served her special food, the cooking task seemed complete, so I didn’t prepare a meal for myself. I think I (a little bit) blurred the fact that I was a separate person from Millie. This is probably not considered normal.

 The advisories given to caregivers are about exercise, nutrition, mental health. Since I’m a “that will never happen to me” type of person, I paid little attention to the articles and brochures that I saw.

And then BOOM! One day (about Day 507 of eldercare) I lost my will to live, and stayed that way for a week, going through the motions, doing my chores, but not caring about anything. I never considered that I had depression. It wasn’t until I saw a post from a Twitter friend with depression that I realized I had a problem, and that, possibly, it could be actually treated. The realization helped a LOT.

Thank you Twitter Friend! In a way, you saved my life.

[and after losing eight pounds, I gained it all back]

ElderCare: What Will it Cost You?

Due to physical or mental impairment, Grandma or Grandma or old Uncle James can no longer live alone, and you think you can help in your home. After all, you and/or your partner both work from home, and can watch out for a loved one’s well-being during the day. Do it for love, but know what it will cost you.

Start with these numbers. Modify to your situation. Be realistic. Be patient. If your elderly loved one has her own money for these items, you are better off, but keep reading anyway.

Food  $300 per month over your current food expenses. I know what you’re thinking: just set out an extra plate, what’s the big deal? Seriously, do NOT try to feed old people out of the same larder as the rest of your family. Typical American meals might kill Grandpa. The elderly can’t be fed cheap foods or fast foods because they often have serious health problems requiring no salt/low salt, high fiber, easy chew, or supplemented foods.  The cooks in your family will prepare more from scratch.  The shopper in your family will be willing to drive a few extra miles to the healthier-food market across town, and to learn to read nutrition labels. Which are fascinating, actually.

Utilities   Add 10% to the amount on your usual bills. You will use more energy in extra heating (old people feel colder) and lighting (night light, forgetfulness). Your formerly “green” abode will use a lot more water when Grandma opens the taps completely to brush her teeth or wash her dentures. Uncle James with dementia will wander off, forgetting that the taps were ever on.

Diapers  $30 per month. Old people are incontinent and messy. Budget $1.00 per day for adult diapers. That’s one diaper a day if they have good control or only small leakages. Double or triple this if your elder has very poor control.  If you purchase in volume, the unit price of a medium absorption adult diaper can be down as low as 50 cents.

Personal care products  $50 per month for toothpaste or denture cleaner and adhesive, lotions for dry skin. Some elderly folks use a LOT of toilet paper and facial tissues. Grandpa may also need over-the-counter constipation aids, painkillers, diarrhea pills, vitamins.

Special bedding   You'll at least need a waterproof mattress cover on Grandma’s bed. About $40.

Entertainment  Add cost of extra connections and hardware, using local rates and costs, for internet, cable, and other tools to help them feel at home and stimulated.  (At my house this is zero dollars, because she is no longer interested in television or computers.)

Cleaning   Carpet shampoo or similar floor cleaning services. $50-$500 as needed. There will be spilled food on the floor, as well as spilled blood, urine, vomit, and excrement. Even if watched closely, the demented elderly can swiftly evacuate hideous messes—unconsciously or consciously—from their bodies. Besides the contents from inside their bodies, there are other messes to be made, and old people will make them. They will intentionally shake a napkin full of spit-out salad onto the floor. They will step in dog poo outside without noticing, and neglect to wipe their feet on the doormat. Unpleasant things will happen in your house, and you will get used to them. You will learn to accept what you get with your elderly loved one, because he used to be the witty, caring guy who taught you how to drive 30 years ago.
Furniture cleaning services. $10-$100 as needed for (see above) body messes on sofa, chair, and bed. In case you didn’t know, Grandma’s unattended ink pen can empty completely into the upholstery if left for 12 hours positioned on the green loveseat so that the tip can empty into the fabric through some mysterious wicking process. And that @!*&#  stain is never coming out, even for $100.

Damage  Grandpa has trouble with balance, so he uses his walker everywhere in the house. It's terrific that he is mobile, but since his vision and coordination are pretty bad, he will bang his walker into your walls, moldings, doors, cabinets, furniture, screens, wastebaskets, lamps, and potted plants, even those that you thought were out of his path, and out of his space. Just consider all space as his space. Budget $$$ as needed for damage repair, and a storage unit for fragile items.

Modifying the home  You may need to add the cost of prepping the house for your elder person. Special bed, chair, toilet modification, door locks, bath aids, built-in bars and rails may be necessary. Those numbers are not here.

This chat does not include anything about medical expenses. I figure that Grandma is on Medicare, and she has he own small income to pay her Medicare supplement and any applicable copays.

Bottom line for costs of elder care. Depends on your situation/setup and the income and condition of the elderly person, but start with $5000 per year, and adjust accordingly. If Grandma can’t afford that, decide if you can.

Then decide if you can handle the other things that will happen.

Day 546 of Eldercare. 26 September, 2013

Talking About Time

She did it again this morning. When I walked by her room at 7:26 this morning, I heard “Seven twenty-six, seven twenty-six, seven twenty six, seven twenty-six, seven twenty six, seven twenty-seven…” like I might hear mornings, evenings, any time that Millie is in bed but not asleep. When she says the time, she is always lying on her right side, with the extra-large-digit clock only about ten inches from her face and, apparently, reading the numbers.

It was about Day 60 that I first noticed Millie audibly counting out the time. In the year-plus since then, hubby and I invented several theories about why she counts like this as she is watching the clock: It’s to aid sleep, like counting sheep; she is reminding herself what the time is because she is anxious about time; it’s a kind of prayer or mantra. I wouldn’t ask Millie about it because I don’t want to make her self-conscious, then she would feel that she shouldn’t do it, even though she is compelled to. I don’t want to make her anxious, and I don’t want to make her stop. I just want to understand.

This morning, as I paused to listen, I noticed that the counting made her out of breath. With congestive heart failure, she is often out of breath after minimal movement, such as sitting up in bed. Why then does she put herself through this? Why does she not count in her mind only, to save her breath?

Sometimes she skips the hour and says “thirty-two, thirty-two, thirty-two” and sometimes, inexplicably, like she did one evening last week, she mutters “eight sixty-six, eight sixty-six, eight sixty-six.” Sixty-six? Maybe it’s not the time she is keeping track of. Perhaps she just needs to say something to know she is alive.

I think that this counting, clock-watching habit is just another way that she builds her world. I suppose it’s not my job to understand what she is doing, only to keep her safe and cared for. And to accept every odd and challenging thing that comes my way. That’s why they call it caregiving.

Day 543 of Eldercare. 23 September, 2013

Millie has had the same Last Supper jigsaw puzzle on the table for eight days. Some days, she pretends to work the puzzle, but actually puts no pieces into it. When she thinks we're not looking, she stares out the window, then falls asleep in the chair.
Yesterday, Day 542, She had been frustrated about not placing any pieces into the puzzle, so I put one in while she watched. The puzzle piece had the image of a woman's face, so it was easy to find where it belonged, near the top of the border. Millie said "That doesn't go there."
Me: "Why not?"
Millie: "Because look at the tiny shape next to it. There are no pieces that shape."
Me: "Let's see if I can find one. Yes! What about this one? Look, it fits."
Millie: "Yes it fits because I  just put a different woman's face piece where you had put your piece." (she hadn't. she was just sitting there while I found that small piece).

This interchange is typical of how she converses. She just makes things up. When during the first six months she lived with us I took her to the doctors office, she would deny having the troubles that she had complained to me about at home!
As a caregiver who actually cares about facts, this characteristic is one of the hardest to get used to in the past 542 days.

I just read an interesting account of this phenomenon here, and why we shouldn't argue with dementia

Hubby and I talk about her need to be right. He says that she has always been this way. Always, even when he was very young. He says it's imprinted into the fabric of her.  I guess that means that her Alzheimer's is not the only thing preventing us from talking sense with her.
This puzzle business happened  an hour after a session of looking at old photos from Millie's past, where she mis-identified a baby held by her daughter with "that's Elizabeth. I know it because at some point I wrote on the back of the photo that I thought it was Elizabeth."
I said "No, that's not Elizabeth, it's baby Paul that Flora is holding. I know, because I took this photo!"  I thought she would WANT to know which of her grandchildren that her daughter was holding.
She came back with "Look, see what I wrote on the back? It says 'I think this is Elizabeth'. " (There's a lot going on here, including the effect of the written word, wrong though it might be.)