I’m okay

I can’t count how many times I say that to myself. I’m tired, overworked, overwhelmed, a caregiver with a job, dealing with my Dad’s chronic illness, dealing with my own chronic conditions and with probate from a recent death in the family and with all the twists and turns that is life.

But as a caregiver I’ve always been the first to say, “I’m okay.” After all, what is now won’t always be. Just because it’s hard doesn’t mean it won’t get easier. So I keep on putting one foot in front of the other and I don’t really think about myself when I cut another thing I enjoy doing from my routine because there simply isn’t time for it anymore. It’s the life of a caregiver. It’s what I’ve been doing for 30 years off and on, caring for Mom, Grandmother, my Uncle and now Dad. I’ve told myself I’m okay over and over and just pressed on and kept moving.

But when I had a conversation with one of the ladies at work, basically trying to figure out how I could resuscitate 12 hours of vacation time I really had been hanging onto, this time that was to be mine and mine alone, this precious time that was to be vacation from everything and not just one of my duties but all of them. I really need more than that. I have a To-Do list that never gets completed. It just gets longer and longer and I keep marking stuff off of it not because it’s been done but because I just can’t get those ends to meet up, much less tie them together. I really had not realized how desperately I was hanging on to those 12 hours until I had to use them for something else, basically giving up that precious vacation time for a more practical caregiving use.

So, with that in mind and knowing that another Christmas is coming when I will be busier than I should be, unable to see to any of my needs, knowing Dad is not getting better but is actually losing a bit of ground each year, knowing that work is going to continue to take up more and more of my time.  Knowing that we’ll have another year of no holidays because I’m too tired to do anything for them. Knowing that I should enjoy my Dad while he’s here and make every moment count.

I love my work at the Salvation Army and enjoy it most of the time. But I can’t enjoy it when I just wish I could fit in these other things that I need to take care of too. But the only time I have to do these things are after 9pm when everything is closed and by 10 I’m ready for sleep.

And I’ve been here before. I’ve said it thousands of times. I can do it. I’m okay. It’s just for now not always. But this time I refused to say it. I’m not okay. I need to rest and I need to get some very important things done for my Dad and for myself too. I need to stop demanding so much of myself and allow myself time to do all the things I love and have been denying myself. I need to admit I have needs too.

So I’ve resigned. I gave them a month so I wouldn’t miss out on some of the great things happening there but when that is over I will be saying goodbye to employment at the Salvation Army. I might still volunteer but probably not for a while. But it’ll free up time for me to fit in more for me and to get some things done to get the house ready for Dad. I’ve got a feeling his situation is about to change and I want to be ready. It’s what a caregiver does. I want to enjoy sunrises and sunsets and not be too tired to smell the flowers. And I will go back to the Salvation Army one day when I’m able and ready to take on that task of Doing the Most Good.

For now that means taking care of myself and also of Dad. Because life is short and there’s no reason I should be miserable, pulled in a thousand directions. I need to be able to fit back in some of what I enjoy. So much has been ignored because there wasn’t time. I would like to add in some of the joys I once had and also tackle that To-Do list. When Christmas comes, I want to have time to go through all our routines like we used to. I want to be able to sit down and watch a movie or watch a sunset or sunrise and not be too tired to enjoy it. I need to slow down so I can be present in my own life. Just because I can doesn’t mean I should keep going and going and going, and telling everyone I’m okay. Because I’m not. I’m tired.

The Lonely Battle

So I was insulin dependent for about 7 years and things were okay. I lost some weight and managed to keep it off. Life was manageable.

Then I got a job and the Marketplace Insurance. They told me my A1c was too low for insulin. I’m like “You do realize my A1c is this low because I’m on insulin, right?”

Apparently they didn’t care. As doctors they had a script they had to follow and that script said Metformin. It didn’t work for me. It messed up my eyes, kept my blood sugars at 250 or above all the time regardless whether I ate or not. I took it for a month and then stopped it and changed doctors.

But I kept my A1c down because I watched what I ate and exercised. (Before Metformin, I was walking 3ks. I can’t do that now but I’m gradually recovering from what that medication did to me.) So low in fact I was informed they could never, ever prescribe insulin for me. So I was literally on my own with no medications to treat my disease except those which would make me sicker faster.

Enter natural medications. I know some people are skeptical. But I kept my A1c down below 6.5 for three years. However, I’ve got a problem. I’m getting older and all this stress of caregiving is really starting to take a toll on me. I’ve been through a lot in the last 2 years and although my To Do is like 7 pages long I don’t ever seem to make much progress or, if I do, manage to accomplish something, it then creates another page of stuff to do as a follow up to what I accomplished.

The lonely battle is that I had some kind of reaction earlier this year to something I was taking. My heart rate sped up. I started feeling like I was on speed or seriously over caffeinated. I stopped everything and took myself off all my herbs slowly over a period of about four weeks and managed to get back to normal.

In every way but one.

I stopped the Bitter Melon that had been working fantastically and started up with the Fenugreek, another herbal that affects blood sugars. And it worked great for two weeks then mysteriously stopped. I can’t figure out why it stopped but I’m not at my best. Exercise with Bitter Melon meant that I burned up sugar and was okay. With this new stuff, I can exercise until I drop from exhaustion and it has no effect on my blood sugar. So, back to Bitter Melon because the next step is going back on insulin. Because I’ll never get down to my goal weight if my fasting blood sugars are in the 160s.

When I was extra, super, overwhelming stressed caring for mom in her dementia, I stayed on the insulin and my fasting blood sugar was always high because I was under so much stress! Now it’s the same. I’m back in an uncomfortable place and hoping I can get out of it as soon as I can. I don’t feel great. I don’t feel terrible but I don’t feel like I want to feel.

So here it goes. Half a Bitter Melon. And if that doesn’t work then I’ll call the doctor and tell them I need to get fitted in somewhere on the schedule so I can fill them in on my situation. They already know most of it and everyone agrees I’m doing too much. But there’s no rest for the carers of the world. You just have to keep soldiering on and hope that a Higher Power can make things work whenever things just aren’t working at all.

 

Big Pharma

So we went to the PCP and she does her little spiel about all she can do for us. Then she suggests this new medication because, she says, it will grow new nerves. Uh, if that were true, you wouldn’t be telling us about it. Word of mouth would have us asking for it.

So we get the new med and Dad starts it and the doc says take it for a month so we’ll know if it works. Wait. What?

Fast forward one month. Dad was cleaning out his wallet and lost his ID cards. His memory is so bad he started asking me, “We live here?” I mean, it was night and day, a bad example of what medications can do to the elderly. And some cognitive impairment is normal with age. All of the horrible things he did when I was a kid he has absolutely no memory of. That’s completely normal and I know this because all the people my age have parents with the same lousy memory of their tragic childhoods. But for him to misplace his insurance card in the five minutes he was cleaning his wallet – that’s not cool.

So we’re not taking that anymore. It got so bad even the dialysis clinic called me and we had a bit of a discussion about it. So I know it’s not just here at home that it’s happening. And I know it freaks him out too. No one wants to have that happen to them. No one wants to be forgetting things that are important and insurance cards for someone in his position are very important. Yes. The doctors already have copies but you have to be able to produce proof that you still have that insurance. Just in case they ask.

So I’m hoping things return to normal here and he can go back to remembering what I’m fussing at him about. It’s hard when he forgets what I’m nagging him for. Takes all the fun out of it for me.

The Father’s Day Gift

So I got Dad what he asked for, a new razor for his face.

So apparently, once upon a time, about 50 years ago, razors were really simple to operate and didn’t require any operating manual or special knowledge.

Apparently this razor can do everything but make coffee, my Dad’s favorite expression. The used car I bought last year can do everything but make coffee. The tablet where he listens to recordings of the church services we miss also can do everything but make coffee. Coffee is really important to him.

So after about two hours of him manhandling this poor razor I finally convinced him to just plug it in and let it do it’s thing.

“But these metal things are supposed to touch these metal things and they don’t!”

“Um,” I said, looking at it for a moment. “Actually, they do.”

“They don’t lock together!”

“They’re not supposed to! They’re just supposed to touch and from that touch they gather up all the electricity they need.”

“Well, how is that a good idea? That’s not how it was when I was younger.”

Anything I say after that point is going to get me in trouble. So I say the next best thing. “All those razors you had when you were younger broke, didn’t they? Well, here’s one that works. Just let it charge up some.”

I know I’ll get old too but I hope that my “old” isn’t like his “old”. I need to be a nerdy old person who can plug and play.

 

 

 

 

Terrible Days

Life is hard enough when you have a job to go to. For a caregiver, it’s so much more complicated. Now, caregiving encompasses all sorts. Moms, Dads, grandparents who are raising their grandkids. All of that is caregiving although the word traditionally refers to those who are caring for someone who is incapable of caring for themselves.

My Dad’s PCP prescribed a  new medication for him to help with the neuropathy that he’s not having issues with. The way she stated it the medication can actually help some nerves to grow back.

I don’t believe that.

Fast forward a month and my Dad can’t focus long enough to hold a conversation. He’s very unsteady on his feet and is sleeping 12 – 16 hours a day. It’s gotten so bad that dialysis is calling me to tell me what happened during dialysis sessions because they know he won’t remember to tell me or remember instructions they gave him.

This is sad to me because I know on some level that the PCP meant well but my Dad has lost ground. I only hope he gets it back.

Yesterday was hard. I had to do a bit of all three jobs and I had to do it all in one day. Dad ‘remembered’ that I need to order his medication like five times so he told me all five times about it. Then there’s the endless probate. Thank heavens we’re nearing the end of that. I hope. And then there’s working. I’ve had people tell me I shouldn’t be working, not with all the responsibilities I have. But I get something out of my work. I get personal growth and I learn how to not to murder people who intentionally irritate me because they think if they make a big stink and get messy and loud I’ll give in and give them the fan they’re not eligible for. Um. No. I will, however, call security.

So it’s today now and hopefully will be a slower day, one where I can think more and not make snap decisions that end up getting me stuck in traffic because “I haven’t gone home this way in a long time. I wonder why.”

 

Who really knows what time it is?

Part of my job as caregiver is to put out fires. By fires, I mean the little things an old guy just can’t manage to accomplish on his own. This morning, it was breakfast. Yesterday, it was all about time.

So an alarm clock is necessary because my Dad’s on lots of medications and doesn’t just hop up out of bed in time for events. So we’ve been on the search for the perfect alarm clock. As is typical, it’s more like a tale of Goldilocks. We have yet to find the Just Right.

So the first clock was a purple flower that Dad wore out. And also he couldn’t always count on the twelve being up. If he wasn’t careful it would read five o’clock instead of eleven. So I got him a digital. Joining the 21st century. That thing was going off at all hours of the day and night because my Dad and digital are two objects never in the same sentence. He hated that one too. Then came the tiny wonder. It was loud. He accidentally pulled one of the little dials off the back, the one to set the alarm time. Then came the dynamic duo. One is a wind up – more his century – while the other has a battery and a little light that illuminates the clock face at night.

The only issue with the dynamic duo was that the dials are all labeled in writing Dad can’t read. “And there’s too many! Who needs this many dials on the back of a clock? I don’t know what any of them do!” So I come out with my sharpie and label the clock dials. Works great on the white clock. Not so much on the black. My Dad is not into glitter pens yet so I had to come up with another solution to label the black clock.

Pink Nail Polish!

He seems satisfied despite his declaration of “that stinks!” But it’s the point. It’s not the huge issues of everyday life that caregivers must smooth over. It’s the little things. Like how to work a clock.

Ironically enough, Dad has kept every single clock.

So now he has five. Oddly enough, none of them have the same time.

Saturday

I don’t want this to take the place of my journaling. However, maybe sometimes I want to post things that might be read by someone else, versus the diary, which I don’t want anyone to read but me.

It’s so nice to have a day where I can rest and – Who’m I kidding? I’m a woman! I’ve got laundry and chores to do! There’s no rest when you’re a caregiver!

But I’ve also got some shopping to do and I think I might dip into the mad money today just so I can get some of that old retail therapy. Something has pricked me and I feel the need to go to Mardel’s. Haven’t been there in years. And I might swing by Joann’s on the way to get cat food and people food. I’d better leave soon because in about ten minutes, it’ll be a 110 outside.