madeandfound
MADE AND FOUND
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madeandfound · 5 years ago
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CARE - Staple Yourself
In business one way to find out what is actually going on in a process, is to staple yourself to said process. It’s a phrase that is used to describe following a process from beginning to end in minute detail to locate the problems, slow downs, redundancies, weakest links and much more, to improve the process. It has been used to improve turnaround time in getting invoices sent out to assembling jet engines. With a business there is planning, structure and organizing a team to undertake process improvements. Just the fact that you are improving them means there is a process already in place to improve. In caregiving you are thrown in the deep end before you come to grips with what is happening to your loved one. You do the best that you can, making it up as you go. Even if you have gone though a similar situation like this before, every caregiving experience is as unique as the people we are caring for. 
When my Sister and I had to return to our homes and jobs after my Mom died, we were leaving my Dad in the care of a live in nurse during the weekdays. My Mom had been his caregiver until she was diagnosed with cancer, then it was hired help, when my we were not at home, caring for both of them. By then it was six years and a lot of rehab since his stroke. He was paralyzed on his left side, but he had worked so hard to get as much mobility back that he could walk with a quad cane, but his left arm and hand never came back to functionality. He needed help getting out of bed and dressed for the day, meals cooked, laundry done and help with a shower. With the installment of a stair chair he had the run of most of the house. We were both scared to leave him, the live in nurse at the time was actually a nursing student and she would not be with him 24/7. We where trying to fill in the gaps when my Dad swore he could do more if we would just let him and he did not need as much help as we thought. 
So began our process mapping my Dad’s day. The week after my Mom’s funeral my Sister and I started. We wanted to test to find Dad’s limits without putting him in any danger. First we mapped out his day from waking up in the morning to going to sleep at night and everything, I mean everything, in-between. What if he was on his own for an entire day. What could he do and what, more importantly, was to dangerous to even attempt. Once we had written down everything, every move he’d have to make it was time to staple, or in this case tape ourselves, by that I mean my Sister, to the process. I taped my sisters left arm and hand down, in the same position which my Dad held his arm, then taped up her left leg in an attempt to impair it to the same degree as his. 
I need to stop right now and tell you that one of the most important things you need as a caregiver is people who keep you sane. A sister that goes along with all your hair-brained ideas without question, a best friend who knows when to cry with you or give you tough love. Friends who text they are at the grocery store, what do you need. Ok, back to the taped up sister.
From this experiment we learned a lot, he could do more, and with a few changes in the house, and instructions for both him and visitors he could do even more. A office desk chair on wheels helped him move around the kitchen without his cane, freeing up his right arm and hand. When you have very little control over one of your legs, as you bend to sit you reach a point where you lose control and plop down in the chair. The back of the chair had to be against a wall with the wheels in a certain location, back wheels flat against the wall but front wheels not in the way of his feet. Since he could only control pressure on his right foot to push himself up traction was an issue. Non skid tape found at any hardware store was put on the floor where his feet were placed, blue painters tape also went on the floor to help him judge his path when he needed to make turns while walking. Most people with mobility issues walk with their eyes on their feet not where they are going, the blue tape helped keep him from bumping his shoulders into doorways. 
He could dress himself in a pinch, but what took a couple of minutes with help took him an hour or more. We shortened that time by putting together an emergency outfit, clothes that were within easy reach and easier to put on with only one working arm. Friends and family visited and brought him meals to eat later. How do you take plastic wrap off a plate with one hand? You don’t! We wrote out on poster board size post-it notes instructions for people to rewrap the plates using Press’n Seal and only have it covering and sealing at the rim of the plate. We had a stack of Press’n Seal rolls at the ready for them. And the jumbo post-it covered the lower half of the refrigerator with wrapping and placement instructions. 
I could go on and on about what we did and how we had jumbo post-it notes everywhere, but the point is about stapling yourself to the process. It is not only to help someone who is physically disabled. It’s about finding the bumps in the road and smoothing them out. Caregiving is very emotional and exhausting. You might not think you have the ability or time to take a step back and review the daily process you and your loved ones go though, you also could push back and say your day can change on a dime, no two days are alike. Lets address those, first you have the ability, you are a caregiver, you can do anything, you are a badass! Time, well you don’t have to do it all at once. Break it down into sections, morning, noon and night, or start with one process get that one working well and move on to the next. Take a month to work through your typical day, work at your own pace and ask for help if you need it. Yes, your typical day can change at any given moment and no two days are alike, however, everyday has processes that are repeated. Getting your loved one up and dressed, using the bathroom, brushing teeth and washing face and hands, meals and so forth and so on. Even non daily events can be planned out and added to your routine. Doctor’s visits, Go Bag for hospital trips, planned and emergency trips, outings of any kind. 
As my Dad’s mobility declined we updated our processes, these are not in stone these are meant to adapt. One of the points of this is to take a step back and look at any process logically, remove the emotion, or as much as you can. What does your loved one struggle with everyday and what changes could be make to the process. It could be as easy as posting photos by the sink showing how to put toothpaste on the brush because they don’t remember how or having the brush set out with toothpaste already on it for them because they only have use of one hand.  
AFTER - The Aftershocks
I had not planned on writing about this today, but when did the universe ever care about my plans.
Last night a family very close to me lost their Dad/Grandpop. He had dementia and he was declining, but his death last night was sudden. I don’t know all the details yet and even if I did I would not put them in this blog, that is my friend’s story, not mine. On a table by my front door I have a bag of supplies from my time as a caregiver, that I gathered yesterday for his daughter, my friend, after we spoke earlier in the day. I had planned to walk them over to her this morning so she could take them to her parents, or drive over to her parent’s house and drop them off. 
I’ve am sad today, I have been crying on and off. I am sad that we lost a really wonderful, kind man, I am sad for my friends and the entire family. With all that said, I am sad too because I am having aftershocks, or at least that is what I am calling them. All those feelings of loss and heartbreak of losing my own Dad are hitting me hard, shaking me up. I am definitely on firmer ground now then I have been, but these aftershocks happen. 
I have described my grief as coming in waves and aftershocks. A waves hit me out of the blue, sometimes I don’t know why, other times it’s something that reminds me of my Mom, Dad, Aunts, Uncles, Friend… I found a note one of my Aunts had written to me the other day, her still familiar handwriting caused a little wave, years after she has been gone. I could hear her voice in my head as I read the note, that made me feel good. Somedays I just miss my Dad more then others, no special reason for that day or another, I just have lots of waves hitting me on those days. Time plays a big factor, the further removed from their death the smaller the wave. But sometimes out of the blue, no matter how long it’s been, I get slammed by an unexpected wave. 
Aftershocks are different, I hear about someone else going through something I have experienced and I am right back, emotionally, to my own experience. Not to long after my Dad died, another friend’s Dad died, aftershock. One of my Sister’s best friend’s Mom died and together she and I went to the Funeral Mass at the same church that held our Dad’s, big aftershock. My BFF’s Mom, who I loved, died this past April, really big aftershocks, plus grief for her passing and lots of big waves. My own Richter scale is made up of a combination of data, how long since my own loss, how close I am to the person who died and the person like me who has lost someone and how closely their situations resembles mine. 
Today’s aftershock is a big one, but I’ve learned they are a normal part of grieving, and I’ve also learned how to stay on my feet though them. 
Denise
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madeandfound · 5 years ago
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Introduction
I am not a professional caregiver, just a daughter who spend the last 20+ years helping her parents. I started just finding ways to make their lives easier as they aged, then it progressed. Dealing with strokes, cancer, a brain tumor, caring for them though in-home hospice and finally, holding their hand as they died.
Now after the last 10 years of being a full time 24/7 caregiver, I find myself an adult orphan. I have a head full of 20+ years of caregiving experience and asking myself “what next?” Where do I go from here, how do I move on and what to?
My goal with this blog is two fold. First and foremost, to share what I have learned along the way. What worked for us and what didn’t. Things that added value to our lives and things that wasted my time and money. Managing my parents lives and all that included, medical, emotional, all the daily structure and schedule of care and most important for us, that they continue to find joy and happiness in life to the very end. That is the care part of this blog. To share those insights, tricks of the trade so to speak. Also, to create the kind of blog I always searched for but could never find.
The “After” aspect looks to be the harder part for me. After 10 years of barely being able to leave the house to buy groceries, I have to rebuild my life. When it comes to my own care, I’m not so good. My hope is that you follow me on this journey and hold me accountable, encourage and push me when needed.
FAST FORWARD A YEAR…
At some point, in the very near future, I will talk about the year in-between. I think talking about grief is important and it’s a huge part my “after” journey, but for now let’s talk about caregiving.
CARE - laying the ground work
Since this is the start of my blog, I want to share something I did at the very start that paid off in benefits that I had no idea I would need later down the road. Before my Dad’s stroke paralyzed half his body, before my Mom’s cancer diagnosis, they were active, but slowing down. I was living in Chicago and they were in the Philly area, during one phone call, my Mom told me she started to only carry in the groceries that needed to be frozen or refrigerator and leaving the rest for my Dad to unload. I told her I used a grocery delivery service, it was a fairly new thing back then. I looked to see if it was offered in her area but she rejected even the thought of having someone pick out her food. On that same call she asked if I could add an extra day to my visit home at Thanksgiving to help her and my Dad with the annual post thanksgiving house cleaning and Christmas decorating. I agreed to extend my stay, three days later when I knew she would be home, I had cases of their favorite drinks, laundry detergent, the heavy products I know were staples in the house, delivered. She was trilled, the gentleman carried everything right into the kitchen for her. It started with me just doing little things like that then slowly expanding. That trip home at Thanksgiving I picked up menus from all their favorite places that delivered (this was long before Grubhub, even before everyone had their menus on line), once a week, dinner was on me. By the time my Dad had his stroke, I had taken over or helped with so many little things that handing over greater control was an easy transition. They saw me more as a partner in their everyday activities, someone to lean on not as their kid trying to take over their lives. I was a two hour flight away, spending just a few minutes on line or on the phone a week helping them out, I did not realize I was laying the ground work for what was to come next.
After - not what I expected
When my Mom died in 2005, I had a grieving disabled Dad who still needed care, a career that I neglected for 15 + months and relationships that I let flounder. I grieved my Mom but I also had responsibilities that demanded my attention, I had a life that I needed to start living again whether I liked it or not.
As my Dad approached his final days, I knew the process to start living my life again would be different but I thought the grieving process would be the same. This was not my first rodeo, I’ve been here before, you keep pushing through, keep going, do what you have to do until one day missing them does not rip your heart apart.
When my Dad died last year, there was no grief stricken parent left to care for, after over 10 years of being his full time caregiver there was no job to go back to, he was my job. Not only was I grieving my Dad, but I lost my purpose in life. There was no reason or need to get out of bed in the morning. Caregiving changed me, changed my priorities. Yes, I had to find a job, not just for income but for a reason to get out of bed in the morning, but what I really needed was to find happiness, I had been slowly letting joy and happiness leak out of my life for years until there was none. In a future post I will get into more detail about when I realized I had zero spark of life in me and how I pulled myself back together. I think it is important to talk grief, how unique and universal at the same time. It’s a part of loving and being loved and we should not have to pretend we are ok, or put a time frame on it.
So now I am on this journey to build my life anew. I’m not running away to find myself, at least not yet. I am, for now, staying put, cleaning out my folks house, doing repairs on the house and me. Starting my own business, I don’t now if financial security happiness lies in this direction but so far the entrepreneur thing has given me a purpose to get out of bed at 6:30, that’s AM, and work into the night and it is fun, so far. Stay tuned!
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madeandfound · 5 years ago
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madeandfound · 7 years ago
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madeandfound · 7 years ago
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4 days of lunch done!
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madeandfound · 7 years ago
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(via THIS : TrollXChromosomes)
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madeandfound · 7 years ago
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madeandfound · 8 years ago
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madeandfound · 8 years ago
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Plate Tectonics (2017)
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madeandfound · 8 years ago
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madeandfound · 8 years ago
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Regular physical activity is one of the most important things you can do for your health. It can help
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madeandfound · 8 years ago
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Good bye my faithful friend. 14 years of love and mischief were worth the pain and heartbreak I am feeling now.
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madeandfound · 9 years ago
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madeandfound · 9 years ago
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madeandfound · 9 years ago
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madeandfound · 9 years ago
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madeandfound · 10 years ago
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Dealing with an injury
I know I am a fool because I believe that someday life will be fair, but logically I know it never will be.
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