July 1st and Exhausted

 I won't lie.

Caregiving is exhausting. It can be Caregiving as a mom to kids, a mom to a disabled child, a young child caring for a parent, or a spouse caring for a spouse or elderly parent or relative.

I watch the latest PBS program on Caregiving which is a 2 hour program. Our Chaplain suggested I watch it as she felt it was interesting. It tells the stories of a few families along with the history of Caregiving and how hard it has been fought for by advocates over the years.

Francis Perkins served in the cabinet of FDR as Secretary of Labor. She was a powerful voice for not just Caregiving but the Implementation of Labor Laws to protect children, and so much more. If you are interested you can look her up.

So, right now I am exhausted. I my insomnia this past week was well used in visiting the night skies and watching the Fireflies mating dances. It eventually catches up and Sunday night I went to bed at 8pm and did not wake up until 5am.

It isn't just sleep deprivation, it feels like my soul is being dragged through a fog. When I am tired like this, everything is ugly. I am ugly. I am short tempered and have to bite my tongue.

What has not helped at all is that the Respite person has become unpredictable. I had a car appointment. As I am waiting for her with keys in hand to leave.

Text: Sorry hon, is your appointment today? I'm running late.

Me: Yes.

Now if anyone knows me, they know my work ethic is extreme. I always showed up before my shifts, was never late, and never had excuses.

Text: I forgot my medicine I have to take twice a day and had to go back for it.

Me: Hmmm.

I was not amused at being referred to as hon. 

Other reasons for being late. Overslept. Traffic. [on rural roads? plan for it!] Can't find childcare. 

I give her the benefit of doubt but it seems more and more that poor planning is the issue. None of the 'excuses' are valid. Not if she would plan ahead.

I'm going to combine that with the stress from the long weekend stay of my friend. I like him, I enjoy his company. I don't mind his pets. But more than one overnight stay is my new limit. And I am not available to waltz around in the woods and watch out for him.

I am going to set boundaries. I need to. Granted he helped weed my gardens, however I told him not to drop the weeds in the grass I just mowed.

See? When you lose sleep and are burned out, every, little, thing, matters.
Muddy dog prints on the floor. Talking when I need silence. Oatmeal on the table. Spilled coffee. 

None of those things normally bother me. 

However I seem to have become a nit picking freak. I tolerate the messes I continue to clean up [endlessly] from my husband as he loses control over some functions. I remind myself he cannot help it.

Then someone comes and adds to the 'burden'. In reality, they aren't really. But in my mind, it is so.

Jason finally got the idea I didn't want him in my way. He left. Rich will miss his company, but right now I won't. I want silence. 

Rich went to nap, and I decided to put off everything else after scrubbing the house and the rugs...

to dive into a place of divine pleasure. Getting lost in some creative endeavors.

 

After all, what really waited for me outside was storm damage that I needed to attend to.

When Respite shows up today, I use my 4 hours to run errands and then come back and start working on the fencing damage. See, the work doesn't stop just because one is tired or angry, or frustrated...

It still is in your face when you step out the door.

I am looking forward to NOT doing anything Hospice or visit related until Ariel comes to visit on the 3rd.

I may pull out chunks of bark and branches and create a fantasy world [all while tending to my husband's needs].

A final note.
With Caregiving like mine, it can be horrible and beautiful at the same time. It is tiring, it is hard, it is worth it.

We are lucky to have support where other folks don't. So I have to count my blessings as well as my gripes. 

But the mood of the Caregiver goes up and down with stress, anxiety, and fatigue. I am human, so I will have human moods good or bad.

And then this...just minutes ago.

Text: Hey hon, I'm sorry but I overslept, these new meds make me sleepy are you okay with me coming at 10:30 and staying until 2:30?

My response...slammed the phone down on the table.
I should have said no but I didn't. 

Me: I'm not pleased at all. I had to cancel the appointment I had for 10:30 and make it for next week for my car.

I told her to come. I have to get sweet feed, fly spray, wormer, groceries, and medications, along with other errands. 

How else am I going to get these things taken care of? 

I will be reporting this to her bosses and to the VA who contracts her company.

I am done with people who do not have a work ethic.

The conundrum? Rural health aides? Few and far in between and very unreliable. Those folks should be paid good salaries and be strongly vetted.

My last thought. If she can't be trusted to show up on time.
Can she be trusted to be a caregiver for 4 hours with my precious husband?

Audacity

 I rarely get really irritated. 

But when questioned as to the 'why' I need Respite Care ... 

I'm sure the question was meant to be innocent but what I wanted to spew back out could have been rather nasty. I bit my tongue and just pulled my phone away for a moment...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Do you need rest from someone calling out your name at all times of the night for one reason or another.

Oh sure. Those of us who have been parents understand this. A baby cries in the middle of the night and you are up to see what you can do to stop the crying. It may be a messy diaper, hunger, tummy ache, or something else. 

I was a young mom and could handle that rather easily. I mean come on, when you are in your 20's as I was, a sleepless night was nothing. I simply handled things and went on about my day. After all, that beautiful crying baby was so amazing and I was so full of love and adoration.

Fast forward 45+ years. Sleep. Oh for wonderful uninterrupted sleep. That sleep that evades us as we get older.

Things happen in the middle of the night. Things like the commode being missed, or a wardrobe failure. Or even the malfunction of the oxygen concentrator so the large 02 tanks had to be brought out. Then hubby was afraid to go back to sleep for fear that the 02 tank would run out. 

Can I have a glass of water?
Can you make me a snack?
Can you help me [pick something, anything. Pull up pants, put on shoes, button a shirt, become a short order cook, change the concentrator hoses, help with the wheelchair, socks, shoes, ~~ well, the list goes on with about anything one can think of.]

That is not to say that I can stop mowing the yard, cleaning, doing laundry, chores, and all of the other little things that have to be done on our small place. That includes juggling a schedule of the weekly bath, and other visits from the Hospice Team.

However with 4 hrs of Respite [twice a week], I can leave a load of laundry to be washed and dried, the dishes are done from lunch and often there are fresh homemade cookies on a plate or in a zip lock bag when I return. Sometimes, if I remember to put something else out, there can be a cake made also!

Last week Shay made a cold Italian salad that I'd laid out to make when I got home. Goodness. My supper was made!

She'd also swept up Charlie hair and cleaned the bathroom and organized my messy cabinet drawers.

On Sunday evening my neighbor Justin came down as promised and mowed down two large thistle patches that he'd promised to help out with. Last year it took me 3 or 4 days to chop it down with our scythe. He finished that job in an hour and said he'd be happy to do it again. Of course he was having a man and machine moment. Guys love their gadgets and he has a brush mower that he pulls behind his ATV.

Thistle patch Sunday morning before I asked Justin to mow it...I was using the scythe once more and decided I just didn't have the time...

I related this to a certain person. Apparently she felt that I didn't really 'need' Respite or all of those nice things that were 'given' to me. Why did I need that? After all, .... YOU are retired! What else do you have to do with your time??? Make HIM do more! He is just faking some of it. 

This person has never been with my hubby when he is getting dressed. Nor has she been with him for a 24 hour period. She has not seen the daily struggles.

For example, getting dressed seems like such an easy thing to do. Except when it isn't. Baby steps to get dressed. Simple things become mountains.
Yes, this is part of a life ending disease and that is what Hospice is for along with Respite care to give the Caregiver a break.
AND...I love my breaks.

So when someone doesn't understand why I need them...

Well, perhaps they might if they were to walk in my shoes for a couple of days.

Anyway this was my rant and my rave. 

I pushed the end call button and stared out the window.

Audacity: rude or disrespect behavior.

Ignorant: lacking knowledge or awareness in general.

I think I'll go with Ignorant. It fits better.

The hardest thing I did was to ask for help. 

The person not understanding my need for Respite? His daughter.

I'm changing the Ignorant...to

Willful Ignorance:
the act of intentionally ignoring or avoiding
information that could be inconvenient
~~ a conscious choice to remain
uninformed especially when
--my words--
when the information could be 
uncomfortable

[as much as this sounds like complaining, I want to state, that this is very valuable time between my husband and I. At the moment his condition is deteriorating and his edema is beginning to become a huge concern. I do get tired of the endless responsibilities. I don't hate our time together. I cherish it. Sometimes I get very cranky from lack of sleep and frustration of always being the adult. 
Yet I still strive to make his time left with me as comfortable as possible.
He is my soulmate after all.]

Respite success and failures

We have been approved for 8 hrs a week Respite Care. This was a hard decision to make. I mean how can I leave his care for 4 hours to a complete stranger. Of course we had resisted, but after talking to a social worker I relented.

The care team used an agency to hire someone to come out twice a week. I chose my days that I go to the gym to work out. I can actually work out and then if I need to, get groceries, meds, run errands, or simply do on a picnic by myself [or coffee with friends].

The first week was a disaster. The Home Health Aide didn't show, didn't call, and made excuses to the agency. The second date was no call no show. I was pretty upset and called my Social Worker at the VA from the car as I headed to town to pick up meds and go to class.

Apparently that got things moving. By Friday afternoon I had a promise from the agency that another person had been found and she would be here on Tuesday. I was quite skeptical.

She showed up! 
She is a young single mom who has a cheerful and bright outlook. I gave her the quick rundown on things and off I went to class. 

I finished class and it felt very strange not to have to rush home and deal with the next set of medications or all the other things I generally do. In truth, I sat in my car for a few minutes trying to figure out what I could do and how to work out the timing of ... not doing my regular duties.

I did something I haven't done before. I went and purchased a lunch from a local co-op and then drove to a place where I go to see wildflowers in the spring.

I parked and opened the back of the Subaru and had a picnic. I listened to Tainter Creek making soft noises and then headed out on a little walk. I found plenty of wildflowers, Anemones, Virginia Bluebells, and some Blood Root that had dropped the blossoms. None of the trout lilies had blossoms either.

I didn't feel obligated to photo anything, I just felt like looking and admiring them.

I ended up walking to the old Cottonwood tree along a faint trail. I leaned up against the tree and listened to the creek and the birds in this steep valley. The valley is so steep in this spot that it often floods with rains and washes out our gravel roads. 

Truthfully, I was having a hard time not returning home right away. I had yet to figure out what to do with myself.

When I did get home I found that "Shay" had cleaned the floor [Charlie is a shedder galore!], made cookies, made Rich lunch, and had washed dishes and was looking for more light housework to do.

She and Rich got along just fine and she said she'd love to make homemade goodies while doing Respite. I said that was just wonderful as baking goodies was not my thing. Hubby enjoyed her company and she was very sweet and helpful. 

Today is Friday and she will come again. I'm trying to consider what to fill my 'free' time with. It almost seems obscene that I can have 'time off' for good behavior.

This is all new to me. Having someone come into my home while I am not there was a bit concerning to me at first. Then after my experience with Jason helping and now Shay, I am still a bit hesitant, but but I'm willing to give it a go. It is for hubby's safety after all and a bit of relief for me.

I think I'll take Charlie and go hunting for Trilliums and other spring flowers. It feels extravagant to have time like this.

Time immersed in Nature is always healing and soothing.

Finding Resources

ADRC, we are pretty lucky to have ADRC in our state. I'm not sure this organization is in all 50 states or not. However there is a very simple and helpful site on the internet called Eldercare Locator. Simply type in your zip code and a list pops up on the next screen with what is available in your area.

I had a very good meeting with Tricia from ADRC. Finding help or a support group for caregiver is daunting. When Rich had cancer the Madison VA offered a support group.... the drive would have been two hours one way for a caregiver's meeting and 'workshop'. Um.
Nope, that doesn't work.
Gunderson Lutheran in LaCrosse offers a once a month meeting for Stroke CareGivers. One hour drive.
Nope, that doesn't work.
The Tomah VA offers a once a month meeting for CareGivers to Veterans. Hour and a half travel time one way.
Nope, that doesn't work.


Tricia commented that they have a support group for CareGivers for Dementia and Alzheimer's patients. This may be a good fit as Rich has trouble with communication and memory too. I said I'd go. After all, meeting with other people who are going through similar situations can only be a plus for me. Besides that, it is 20 minutes from home and I get to see other people.

I know, that sounds awful doesn't it?
I've convinced Rich that we'd even try the Memory Cafe in February.

We quickly moved into other areas of concern. Tricia made a phone call to the VSO [Veterans Service Officer] downstairs and she came up. We went over some of the things offered by the VA.

My other concern was trying to get some assistance or help for my reluctant Mother in Law. She has declined in health and in her ability to do things for herself.
I'm having a tough enough time getting everything taken care of in my own place, let alone trying to take care of her and her place too. She has a once a month housekeeper. That is just not cutting it at all. Her little apartment was filled with trash on Christmas Eve along with mounds of dirty dishes. She just said she couldn't take the trash out and just didn't feel like picking up.

Anyway, there is a stipend that we can get through the VA to assist us in helping Mom. Interesting.
She could get help from the state and county if her assets were two thousand or less.
However, we can get some assistance through the VA because we are assisting Mom. Okay, it sounds weird, but it would allow me to hire a certified Home and Personal Care Helper ... well something like a once a week in home helper that could do light housekeeping, assist with running errands, shopping, and at some point personal hygiene. The average price for hiring someone like this is about $19 to $25 per hour. I cannot afford that for her on my own so this is an alternate choice.

It is cheaper to help an elderly person stay in their home and help them, than it is to transfer them to a care facility.
I know we had approached Mom to get in touch with ADRC more than once and she said no.
Now we have to tell her that WE will get her the help. I hope she takes it.
Yesterday I got called out of the blue with an urgent..."I need my pain prescription!" I ran to town and picked up the script and delivered it. I couldn't stay as I had to get back for evening chores and for Rich.

A quick glance around the apartment told me that she hadn't changed or made her bed in a long time. Her hair was matted and she basically looked pretty gnarly. She told me that her legs had swelled again so tight that she couldn't hardly get out of her chair.

We will be going to her apartment today or tomorrow and presenting her with the option of some help.
I can't knowingly let her live like this. Yet I can't watch over Rich and take care of her also...

Anyway.
I spent the next 2 hours with Cyrstal from the VSO office. We put some paperwork together for Rich filing also for Agent Orange. There will be no money for that, just getting his record updated to include his AO contamination.
Apparently the VA is accrediting COPD and lung issues along with a huge variety of cancers to AO. Good to have those on record now and not later.

The last bit of work I have to do is file to be Rich's official CareGiver. I will be taking a class through the VA but provided through the county office. This last filing if approved [lots of paperwork and a doctor visit] would assist us and 'pay' me to take care of Rich.
Are you ready for the huge amount?
Nearly $30 per week!

I will not complain. It may help out with groceries right? However the bigger bonus will be that I will qualify for respite care which I anticipate needing in the future. IF I don't take care of me, no one will take care of him.

So I am leaving anyone who reads this with a few thoughts.

Don't wait until it is too late if you have an elderly person in your life. See if you can sit them down and talk to them.
Do your research now.
Because ... tomorrow ... or in a few years, we will be that elderly person who will need these resources.