Patent Pending

I started caregiving when I was 13. I really had no choice. My mother was mentally ill, so was her mother. I was charged with making sure things were okay. That was a huge task for a 13 year old and I kind of grew into it, never realizing at the time that what my  Dad asked me to do was actually abusive in some ways. A child should never be put in charge of a mentally ill adult, much less two!

Fast forward all these years and they’re all gone. My conversation with the title company about my uncle’s house and how horrid it was they were all dead. Obviously, bedside manner wasn’t one of the classes he took. But he’s right. They are all gone. For the first time in my life since the age of 13, I do not have anyone to care for.

Some would argue I can care for myself now but those who have been caregivers know it’s not the same thing. I’m fighting with the notion of getting two dozen more cats. I know that’s not what I need. Nor do I really need to go out and find some needy soul who needs someone to do for them. I’ve been that person for 36 years now. It’s worse than a mother who finds herself with a suddenly empty nest. Few mothers care for a child for 36 years. I hope. But in some ways it probably feels much the same.

The house is weird because it’s so empty now. It’s still full of other people’s debris and things my Dad cherished – things I could never cherish myself nor comprehend why he did. But as I’m cleaning out rooms and organizing, I’m trying to reimagine what the rooms would be best for. I’m also doing the same thing for myself.

For most people who are caregivers, they’ve done this for a few years, maybe fifteen for some of them. They have a clear picture of who they were and what they liked before they started caregiving. For myself, I find it ridiculous to go back to when I was 12 and discover what makes me happy. Most of the things I did when I was 12 my knees would scream in horror at now. Rollerskating, playing barefoot in the yard, playing on the swingset. All of those are fun to the point that an adult can do them but they’re not my favorite things anymore. I’m a lot older and wiser …. and rounder than I was at 12.

This is a wholly new place for me. I will need to completely reinvent myself. People say, just do what you love. What if I don’t remember what that is? What if over the last 36 years I’ve completely forgotten what I love? When I was 13 my world was so tiny. I was a kid, a 7th grader, and I’d just discovered how much I liked to read. That was my world. I did some crafts here and there but most of the crafty stuff came while I was caregiving. So in truth, I almost feel like Rip van Winkle, waking up after sleeping a hundred years, and the world is so different. I’m different too, I guess, older. It’s exciting in a way but also very, very sad. My family is gone now, one by one, slipped off to the journey that I will take one day, not anytime soon, I hope. In the meantime, I have to discover what I like and what I want to do and who I want to be. In some ways, being a loner most of my life, it’s actually quite frightening. But still, I think it’s worth doing. I need to decide what I want out of my next 36 years. I need to decide what to do with myself and for myself and who I want to be.

It’s a voyage of discovery, I guess. I get to reinvent me.

Moving On

It’s been six months since I last posted. Six very long months.

Dad had a heart attack right after Thanksgiving. He was complaining of back pain, a symptom no one had ever mentioned before in any heart education materials. He sat there through it, clearly in pain. I asked if he wanted to go to the ER and he said no. He thought he’d pulled a muscle. The next day …. He was in the ICU for four days and then was transferred to a rehab facility.

As I write this, I’ve mostly processed through all of it and am speechless. My  Dad’s brother also had a heart attack, a few weeks earlier, and also went to rehab. They followed almost exactly the same journey.

Dad did well in rehab for one week and then the downward spiral began. He had a 99% blockage in all of his heart arteries. He was not a candidate for bypass. He just wasn’t strong enough at 82 and undergoing dialysis to be able to survive such a huge procedure. I think back to his Primary Care provider who actually called me a few days after he passed. She said she was grateful the cardiologist had opted not to intervene and prolong the death process. I hadn’t thought yet about that. I was still dealing with “What if I could have helped him more/done more/been a better caregiver/been a better daughter?”

Dad said in the ICU that it was “his time to die.” He knew all along it was coming. The weekend before, he suddenly asked me, “What about you? What will you do when I’m not here?”

I was flippant. “The same stuff I do now only more of it.” I didn’t realize that he was actually dying. I thought it was just him being upset he wasn’t at home. If he was confused and delirious that was because he was in an unfamiliar place. I visited him every day while he was in rehab. Again, I was horrified by the realities of nursing homes. Some of the people there never got a single visitor except for the people who come in as a volunteer activity. No family. No friends. It was so horrifyingly sad. I was there every day and if Dad needed anything I made sure he got it within hours.

But he had been sick a long time and I had watched him. I knew he was tired. I was tired! Dialysis is exhausting for the person and for the family. When I went through photos afterward, I could clearly see what I hadn’t before. Dad’s exhaustion was showing.

Ironically, his brother who’d also had a heart attack had complications and decided to go the hospice route. He died December 8. My Dad, though he said he wanted to stop dialysis, couldn’t get the words out of his mouth and those words, “I want this to be my last dialysis treatment,” are words only he can say.

During a dialysis treatment, he told one of the techs, “I’ve lived a good life and I’ll be okay.” When she came back, he was unconscious. They transported him to Parkland Hospital. That was December 23rd. He was delirious and very, very sick. I truly think the doctors found something. I know there are results on certain tests which tell that the body is in a dying process. Why they didn’t tell me I don’t know. But just as I was fearing I’d have to break my promise to him to keep him out of long term care, he passed and went home to be with his brother.

First off let me say Parkland Hospital was a wonderful place and I was glad he was there. They treated him very well which was good because I couldn’t spend a lot of time with him in those last two days. If I had KNOWN they were his last two days I would have been there all time but I didn’t. I was, however, very grateful I was able to keep my promise.

Suddenly, I’m not a caregiver anymore. I’m not taking care of anyone. I just sat down for the rest of December and pretty much all of January. I don’t really remember anything of January. February I got busy cleaning. In March I got a plan and decided to move forward with that plan.

Dad’s last words to me were, “Take care of the house.” So I’m cleaning and fixing all of those things we never had time or energy to clean and fix. And in the process I’m moving on. It’s been a process to reinvent myself from caregiver to just a normal person who’s about to lay sheet vinyl by herself. Dad taught me a thousand things about house maintenance and repair. He wasn’t always a saint and when he was younger, he had a lot of rage, but when he died we were pretty close and I’m grateful for that. I’m grateful he died at peace. I’m grateful he was able to have someone waiting for him at the pearly gates.

I am moving on. I’m not moving fast but I’m up and moving. It will take time for my grief to fully process but I’ve learned over the years not to listen to the guilt. I did the best I could and I couldn’t have done it any differently. I can’t take what I know now and go back to redo it. I can only take what I know now and do it better tomorrow. That’s life. That’s moving on.

Writing

I’ve been writing off and on since I was in 7th grade. I really got serious about it in 1999 when I finally finished a book. Yay!

It was awful!

I know you’ll say that I’m my own harshest critic but I’ve still got the original manuscript and it is quite literally rubbish.

The hardest part of writing is to get it all finished, to actually write a book with a beginning, middle and end then have it end! It’s hard to see it through to the very last page. It can be utterly exhausting to get it all down on paper but I’ve made a pattern I can follow now and I use it to create other books. The goal of writing is to get it all down and then to start editing it, changing this part or that part, making sure all the verb tenses are correct and that words are spelled correctly. I still have that book I wrote in 1999 in it’s original content and I have what it became after several years of editing. The two look nothing alike except for the characters’ names. Editing is supposed to be horrible but I found it to be so much fun. I enjoyed playing with the characters and trying new ways to make the dialog and the story interesting.

I’m looking into self-publication and what that might mean. I need to get some legal advice and ask questions and do some research but next year could be the year. With that said, I must say that writing was the most exciting, exhausting and liberating thing I’d ever done.

When I started caring for my mother and having flashbacks of what it was like being raised by a woman with full blown schizophrenia, I had no where to put all my feelings and those terrible memories I’d worked so hard to forget before they came back at the worst possible time. Writing gave me that outlet. It wasn’t like a diary nor was it a memoir. Instead it was a way to make use of those things, to put what I was feeling into words on a computer screen and make them behave. That’s the hardest part, making the characters behave. They often go off and do things I never, as the writer, wanted them to do! Then I have to find out how they’re going to get themselves out of that. But, I also confess to going back and rereading books I’ve written when I’m feeling down or sad. Oddly enough, I don’t remember what I was feeling when I wrote them. All I have left are the characters and the choices they made.

I grew up on print media. Holding a book in my hands is how I was raised. I’m hip though and I love Kindle and digital is the wave of the future. I’m not sure how I’ll feel when my book is finally published and ready for people to read and critique. I’m not as attached to that first book as I was so many years ago when it was like something sacred I gave birth to. Now it’s just a book, taking up space on my hard drive. But going into print could change that.

I may never see my  book in print, not in the traditional way. Handheld books are quickly becoming a thing of the past. I’ve recently delved into Audible and discovered I really like it. I can read and crochet at the same time! But having my book out there will be an experience and, whatever happens, my life will never be the same.

I’ll have to dream new dreams once I get my first book published.

Letting Go

I’ve been cleaning Dad’s house. He’s got some serious hoarding issues going on and I’ve been trying to get things organized so we can enjoy our spaces and not cringe when we walk through those rooms.

In my cleaning, I happened upon an old relic of earlier days. When I was about maybe sixteen, my grandmother bought me a sewing machine. It was a Singer, was gorgeous, had all the features (those available in 1986) and could sew beautifully. I used it a lot, making things, quilting, altering garments, various projects. But it got old. By the time I was in my 30s it was already as old as I had been when I received it. I got a second one just like it I found on ebay for parts.

Fast forward. It’s now twice as old as I was when I received it and I’ve since purchased a newer one which has all the features it had and more. As I’m staring at this relic from the past, I’m feeling all these emotions come up. My grandmother gave me this about five years before she died in 1993. At the same time, do I keep it? I got rid of the one I was using for parts a decade or more ago. This is bulk trash week in our area and I know someone would pick that up quick. If not, Waste Management will. But the idea of it sitting out there waiting for someone to come take it makes me feel a certain way.

I’ve really had no compassion on my Dad while I’ve been cleaning. Fact is, if EMTs came in and saw the state of some of the rooms in this house, it could create problems for him. As his daughter, I’m there to solve those problems before they become really big issues. So I’m tossing a lot of stuff and I hear him sigh and tell me, “I had planned to do something with it.”

Dad didn’t plan on getting sick. None of us do. But the things he values absolutely boggle my mind. Why does anyone keep stuff anyway? None of what I’m finding creates in me the wish to store and protect. Until I came across the sewing machine. But if I’m going to be ruthless with Dad’s stuff I must be the same kind of ruthless with mine. I haven’t used this machine in over twenty years because it needs servicing, service that will likely set me back more than what buying the new one did. Why hang onto it? Instead, just remember in the sewing machine I have now the love of crafts and creation that my grandmother fostered in me. Get rid of the old and invite in the new. Let go.

 

 

Interior Decorating

So I quit my day job as a food pantry coordinator to be a full time pester Dad caregiver. He’s still up and able to get around but he’s worn out with a lifetime of diabetes and has been on dialysis for four years now. To say that mostly I supervise is not quite the whole picture but it’s close.

Mostly my job is to make sure the trash gets out. My Dad will keep anything and everything. If I try to get rid of something, an old shelf or some broken piece of furniture, he’ll say “NO, let’s keep it. Put it in the sunroom.”  Need I tell you what the sunroom looks like?

So I’ve made my tasks, or rather one of my tasks, the cleaning and organizing of the sunroom. In my mind, I saw myself happily tossing stuff to the curb and freeing us of the horrible bondage of hoarding. I also try to educate my Dad. If you keep it in a cardboard box, that is hoarding. If you buy a cute little sequined storage box for it, that’s called interior decorating.

Well, he’s not a fan of interior decorating. “I have a plan for that,” can be said of most of what is out there. I have a plan for it too. I see it laying on the curb waiting for the city to come get it! Sadly, it’s not my house and I may have to wait to do the purge I imagine myself doing.

But at least I’ve got one thing on my side. My Dad misses the room he once had to putter around in. Now that he’s tired more often sometimes he’ll just go and sit in the sunroom. Hard to do that when every surface is covered with stuff that needs to be thrown out.

Transitions

So I’ve got 4 more days of employment before I’m a full-time caregiver again. I am ready to have only one job and not be pulled in a hundred directions but I believe I will miss my work and being part of a team and I will really, really miss my favorite clients.

I said a fond farewell for a while, not goodbye since I “intend” to volunteer when I can, to one of my older clients, an elderly gentleman who spends almost as much time in the hospital as he does at home. He always comes in and asks for a cold pop and someone in the pantry will donate the money to buy it from the vending machine.

I’ll miss that. The older crowd coming in to visit and chat with us. They’ll ask questions about information, useful news about what might be on the horizon for the pantry. “Is it time to sign up for Christmas yet?” Or news about donations or why is all the food gone. Well, school does start next week. After spending money on all those supplies, mamas are coming in to get food now.

I’ll miss the activity and the jumble of tasks always needing to be done. I’ll miss the volunteers, those who are court-ordered and those who are just willing to give back. I’ll miss the employees who constantly circulate through the building, most with smiles and greetings and “What did you get in today? I forgot to bring my lunch!”

I’m sure I’ll miss all of that while I’m sprucing up the house to get it ready for whatever is coming. And I need to take more time for myself, to rest and do the things I really enjoy. I’ve discovered over the last two weeks that I really like Audible books and being read to while I crochet or knit. Typically, I would spend so much time on housework when I wasn’t at work that I hardly had time to pull out a craft but I’ve been working double time this last couple of weeks to get things into position. It just feels good to know that soon I’ll have time to smell the roses, even if there aren’t any because it’s a 102 outside.

But I’m sure days will come when I’ll want to go back to the Army and hang out with my friends and colleagues – though we won’t be colleagues anymore. I won’t really be part of the crew but I’ll probably still bring cookies because people can smell ’em as soon as they come in the door. Shout out for Tiff’s Treats! Just like Popcorn, everyone knows when there are cookies!

My cats have been seriously missing time with me. I’m either gone or too tired to pay attention to them. I look forward to vet visits in the next few weeks. I’m sure after that, they’ll be ready for me to go back being gone all day!

And I’ll get to supervise Dad who has been home alone for a good deal of time. Well, his joy is over. I’ll be there now to tell him why whatever it is he’s thinking about doing is probably a bad idea.

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.