If you've ever driven a car with a baggie of human urine next to you and a bag of hu!

A Break from Caregiving Posts

Note:  This post has been on my mind, and so I decided to try and write it, though it might not really have a place in this blog, as it isn't about care giving. 

Dear loved one:

The other day, when I told you that I didn't want to go to the Dunkin' Donuts down the road because it was attached to a gas station, you told me that you didn't understand.  What does it being connected to a gas station have to do with anything?

I wondered if we could be bluntly honest for a few minutes. 

I know it doesn't make any sense to you.

Actually, I know that it doesn't necessarily make any sense at all. 

There's a secret about my brain which maybe you've never figured out, however. 

It doesn't have to make sense to be valid. 

I don't know if I would be diagnosed as OCD if I went to a therapist.  I don't know if technically I am OCD.  I suspect that someone might slap that designation on me if I put them in that position.  I can't say for sure though, because I never have (and I'd like to avoid it). 

What I do know is that for years, and we're talking at least since high school where I ran over lines instead of stepping on them, I have set rules for myself.  Are these compulsions in response to obsessions?  Perhaps.  They are part of me though.  A very real part.  They permeate daily, weekly, and monthly life.  They lend me an air of eccentricity, because I'd rather be thought eccentric than crazy.  They gain a special strength, an aura of power, when they get connected to religion in my mind. 

This tendency toward obsession isn't necessarily bad.  It's what made me a really dedicated runner.  It might very well help me pay attention to the fine details of grant requirements.  It's not necessarily a bad thing. 

It doesn't necessarily have to rule me either.  Look, for a time if I incorrectly typed God's name I would retype it seven times.  This doesn't mean that I absolutely had to do this.  As with the high school lines, when it was important, when I was racing, the obsession did not have to be obeyed, I could land on the lines.  It's just easier, when the stakes aren't high, to sometimes give in on the minor stuff.  It's like an unspoken agreement with my brain.

If I give it the easy things, then we just get along more smoothly.  When the stakes are high, then I ask it to give me a break- but for the little things it is easier to play a game of compromise.

So no, not getting coffee from that Dunkin' because it's attached to a gas station doesn't make any sense.  At some point though, that was a rule set for a reason in my mind.

It doesn't have to make sense.  It's still valid.

That's me.  That is totally alright.

On Communication Difficulties

Tonight's the kind of night that stresses me out.  She's fretful.  She's said she didn't feel well.  She's asked me to take her to the doctor.  She's said she's gonna die (it's one of her catch phrases, especially, the suspicion is, because she knows it bothers us).  Yet she can't really tell me what's wrong,  why she says she doesn't feel well.  She shows me her hands.  Her hands are bothering her.  Yet what does that mean? Do they hurt?  Are they cold?  Are they sticky?  Are they antsy? 

Is it really her hands that were bothering her?  Or is she not feeling well elsewhere. 

Could it just be that she's tired?  Could it be a UTI, which causes agitation? 

Could it be none of this?  Could she just be exercising her right as a woman to sometimes be moody?

The thing is- that I don't know.  I don't know, and she either can't tell me-  or chooses not to.  When I told her that  I would make her a doctor's appointment tomorrow, she asked me to take her tonight.  Yet were I to take her to the ER (something she probably doesn't really want-  though she might as the ER staff is amazing and treats her wonderfully from past experiences), what would I tell them?  She just doesn't feel well?

This is where having a good physician comes in handy.  A physician where you can go, and say-  she just says she doesn't feel well lately.  It could be nothing, and if you tell me it's nothing that's great.  Since it's hard to know though, since she has trouble telling me, I take her for checkups sometimes when she probably doesn't need them, because I'd rather take her for nothing than ignore something. 

This is even more where having the Best Physician comes in handy.  On nights like this, where there's nothing definitely wrong (thank God) but she just gets fretful, prayer is best. 

Lord, please help my worries to be for naught.  Lord please help her to really be fine.  Amen.

She's dozed a few times.  She's woken up to clap.  She's snored a bit.  I'm hoping she will stay asleep for a bit.  I'm hoping she will wake up happier.

One of the things you might not think of with dementia going into this is this.  Communication difficulties require help.  Communication difficulties require faith.  

Things they Don't Tell you about Dementia

Something that I'm learning about dementia, is that it's a unique experience.  Momma, for instance, is, thank God!, doing really well overall.  Lord willing, she will continue to do so. 

The other day I read a post about things they don't tell you about dementia.  A good deal of it didn't relate to me, but there were a few things that I liked enough that I was thinking about sharing it. 

Then one of her comments hit me the wrong way.  She said that she would give anything not to have to care for her mother. 

The thing is, I wish I didn't have to care for my mother if she could get better.  If she could miraculously be healed, restored to health, and we could live our lives independently, like a normal mother and daughter, that would be great.  Who, with a loved one having a degenerative disease, wouldn't want them to be cured.

However, with the situation as it is, I don't want not to care for my mother.  That's one of the things no one told me about dementia-  that it would be such a great blessing in my life.  That it would force me to spend time with a loved one.  That cuddling up on the arm of an easy chair to watch church on a cell phone would be treasured time. 

So since a lot of that blog post's list didn't apply to me, here is my version of "things no one tells you about dementia".  Partway through this list, I decided to try and make it a positive list-  because that in and of itself is another thing no one tells you about dementia.  Dementia is not beautiful.  If you look, however, you can find beauty around you while living with it. 

No one tells you how wonderful and accepting people can be.  No one tells you that children can be your best friends-  that sometimes it's in the eyes of a child that true lack of judgment is found. 

No one tells you that sometimes moms are awesome.  The number of moms who allow my mom to talk to their kids, who smile and encourage the interaction can be so encouraging.

No one tells you how much you will appreciate a good pharmacist.  A small town pharmacist can be the difference between giving a loved one what is prescribed, and giving her what is best.  "Your mom's pretty small-  yes that is the generally prescribed dose of ibuprofen from an ER but I'd give her half of that to start." 

No one tells you how valuable a doctor's office that works with you is.  A doctor who, when you call to say you suspect a urinary tract infection, will call lab work into a closer lab rather than making you come in.  Also valuable?  A lab that will let you pick up a specimen cup, take it home to fill, and bring it back.  With medical professionals like this, you can get a diagnosis and a prescription and never have to drag a loved one to the doctor. 

No one tells you that a flexible job can be more important than a high paying job.  A boss who gives you a lot of sick time, and free reign to use it not only for your needs but to take elderly relatives to appointments and meet with hospital social workers, is invaluable. 

No one tells you that teenagers can make the best (and least expensive) caregivers.  As she's matured, my cousin has become one of my favorite paid caregiver options. 

No one tells you that you will decide to end a blog post when you see that she has woken up, and the debate about continuing or not is solved as you decide it's time for dinner. 

Car sittin

We are currently car sitting.  We spend a fair amount of time car sitting actually, but thank God it's a rather warm late summer's night.  Momma has resisted getting out of the car, and to be honest she's in a fairly good mood and I'm mildly content to sit with her.  Except I jus realized that I may have already posted about this same thing.  This is read scarcely enough, though, that perhaps no else will notice, after all.

L, M, N, O, Q, R, S

Did you ever hear the old, bad joke that went something like this?

Little Jimmy's educator asked him to sing his alphabet.

Jimmy:  "A, b, c, d, e, f, g, h, i, j, k, l, m, n, o, q, r, s, t, u, v, w, x, y, z."

Educator:   "Good job Jimmy, but where's the p?"

Jimmy:  "It's running down my leg."

That joke, like part of my attention these days, centers on urine.  There are many ways that urine has become a part of my life.  Washing and rewashing clothes and bedding, sometimes stems from urine.  Purchasing absorbent underwear is usually about urine.  Regular bathroom breaks become a focus.  I'm intimately aware of some things i didn't think about before.  The smell of baked urine usually fades from fabric car seats within a few days-  either that or you get used to it.  If you ask, doctors might well let you pick up a specimen cup and collect urine at home to test for a urinary tract infection, saving you the time and trouble of dragging a loved one to a medical facility just to pee in an unfamiliar toilet.  If you do that, just make sure you refrigerate the urine.  It might be good to monitor closely for this condition, which seniors can be commonly vulnerable to frequently.  There might be signs-  smell of urine, frequent wetting, unsteadiness, confusion, irritation.  A waterproof mattress cover can be invaluable.  Urine may not be visible on a disposable underwear, but the weight can tell.  It's not that weird to collect someone's urine in a cup, though they may surprise you with the ability to do it alone.  Many disposable underwear brands can be ripped down the side.  It may be possible to collect dog urine by dropping a dish on the ground and kicking it under the stream.  As with human urine, it should be refrigerated.  Darker colored or cloudy urine could maybe signal dehydration or a urinary tract infection.  Both can be bad.  Still do be grateful for urine.  It helps us actually in multiple ways.  Also be grateful for the reasonable doctors. 

Further ya might be a caregiver

Had some fun around the, "ya might be a caregiver" initial post so here's some more: 

1. If you've ever worn absorbent disposable underwear because you were out of clean regular underwear..... ya might be a caregiver.  
2. If you've every wondered how to get urine smell out of your car in the middle of summer.....  ya might be a caregiver.  
3. If you've ever stuck your hand in a wet spot, then smelled it to confirm if it was pee..... ya might be a caregiver.  
4. If you've confirmed it was in fact pee, and wondered if you really had to wash your hand.....  ya might be a caregiver.  
5. If you buy kids items because they're cheaper/healthier/better portioned/cheaper than adult goods, and you have no children......  you might be a caregiver.