CARE - Therapy

Introducing something new into the schedule can throw the person you are caring for into a tailspin. Introducing a new situation and new people can cause havoc. Sometimes you have no choice and sometimes it’s worth all the trouble. Physical and Occupational Therapy are worth the trouble, havoc and tailspins. 

Outpatient Physical (PT) and Occupational Therapy (OT) are covered by Medicare Part B (80%) and Medicaid and almost all GAP insurance policies (if your loved one is not on Medicare or Medicaid check with their insurance to make sure it is covered). Depending on how votes go in Congress there can be a CAP on Therapy, 2019 started with a CAP of $2,040 on PT and Speech combined and $2,040 on OT, but the CAP was lifted during the year, this can change, so a quick search on https://www.medicare.gov/coverage/physical-therapy is always a good idea. You can get therapy every calendar year, the therapist will do an evaluation and if the patient is improving, therapy can be extended until a plateau is reached or Insurance cuts you off, then you can stop or pay out of pocket. 

PT/OT can do amazing things and they can do it right in your loved ones home, you don’t have to further confuse or disrupt their routine by taking them to another location. Therapy works if your loved one is willing to put in the work, part of the Therapist training, especially those who work with elderly patients, is motivation. Work with the doctor to get both PT and OT, work with the Therapists to determine the best approach, they can tag team, work together or visit on different days. 

For my Dad they worked together to improve his balance and strength on his paralyzed side, he kept improving and stayed in therapy, getting it extended three times one year. I participated in his therapy, and worked with his therapists so that I could work with him after their time was up. A lot of the therapy to improve his balance involved playing games, using a ballon like a volley ball, bouncing a rubber ball into a bucket and playing golf from his recliner. His therapist told me they get a lot of the “equipment” that they use from the store Five Below, so I pick up all the equipment needed and therapy continued year round. They noticed we had a Wii and I told them he does not play it, they encouraged him to try. He liked the bowling and was better at the Indiana Jones game then I was, in my defense there is a lot of fist fighting in that game and my Dad was a boxer in the Navy, so there’s that. One year my Dad was starting to have trouble getting into my SUV, the therapist worked with us to improve our process and introduced us to gait belts, which helped me aid my Dad without restricting his movements and also helped keep me from injuring myself. 

A hush fell over the crowd as he lined up his putt

And he makes the putt

If your loved one has mobility problems the therapists can work with them and their cane, walker or wheelchair, work with both of you on transfers, recommend equipment or other changes to improve their lives and help insure their safety. Even if they are bedridden, therapy can help, if they are in a skilled nursing or assistant living facility that does not offer therapy, they can work with them at the facility. Talk to your Doctor, talk to your loved ones Doctor, get recommendations, research in-home therapy services in your loved ones area call them, interview them, find the best fit for your loved one. Good Therapists are always learning, getting certified in new techniques and advanced training to help patients with specific illnesses and disabilities. A good place to start and to educate yourself is http://www.abpts.org/home.aspx The American Board of Physical Therapy Specialties and https://www.nbcot.org The National Board for Certification in Occupational Therapy. 

We all know that staying physically active helps us mentally, even those who are dealing with memory loss can be aided by physical activity. This is a study done on the Effect of Exercise on Mood in Nursing Home Residents With Alzheimer’s Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2134914/ in a future post I will write about research and the difference between someone like me writing a blog and scholarly studies in medical journals and how to get the most out of the journals articles and understanding the studies. 

If you are not already taking advantage of PT/OT, don’t wait until their next Doctor’s appointment to get a script for therapy. Do some research, call the doctor’s office or specialist you work closely with and get started.

AFTER - Another Milestone Reached

I spent Thanksgiving with another family and I had fun. Totally different dynamic then my family but I’ve known them for so long that I felt comfortable joining in, I feel like I passed another milestone on Thursday, but I chickened out on Friday and did not face down crowds. Do they cancel each other out? 

I am very focused on work right now and getting better at scheduling my time, even when my day takes an unexpected, but welcomed and enjoyable, turn (a visit from two of my favorite people). I have only made strides in self-care in the time scheduling to minimize stress and burnout. I need to do a better job, I need a plan, a list, I’m not even sure what self-care entails. I guess I should take my own advice and do some research. 

Denise

CARE - Power Or Lack Thereof

I was asleep when the power went out, by the time I woke and ran to his room, his inflatable mattress had deflated and he was lying on the bars of the hospital bed frame. Power outages were always one of my biggest fears. My Dad used a stair chair to get up and down the steps, he had a lift chair that at any given moment could be fully reclined or standing straight up. Later he was on oxygen and on an inflatable mattress that had baffles that constantly shifted his body weight to avoid bed sores. I had a plan, as soon as the power went out I would disconnect the mattress from the pump and seal it, to prevent air loss. The mattress should stay inflated for a few hours like that, but I had a hoyer lift and a regular hospital bed mattress. If the power did not come back on in a few hours I would hoist my Dad up in the hoyer sling and swap out the mattress and down he would go safe and sound. I even would move the spare mattress into the hallway when it stormed along with lanterns, flash lights and every thing else for my power outage emergency plan. I did not plan on sleeping 3 hours into an outage. 

Before the oxygen and air mattress, if we lost power during the night, my Dad would just stay upstairs in bed until the power came back on, and I had an SOP (standard operating procedure for that) but if he was downstairs it was a crap shoot. I had a plan for when it started storming. Many nights I tracked storms and got him upstairs before the worst of it hit. I would tell him not to recline his lift chair, and if he needed to go to the bathroom, I would help him up instead of using the chair. But you can’t plan ahead for the unexpected outages, like when a squirrel eats through just enough of the wire to the house causing a drop in the wattage just enough that the stair chair only worked when no one is sitting in it, or another squirrel one bites all the way through and kills itself and the power to the neighborhood. 

I learned just a couple of things from all the years of facing down power outages.

 If you have a place to store it, a place to set it up and can afford it, buy a generator. Power goes out you can run the oxygen machine because those back up cylinders won’t last too long. Get an outdoor extension cord and make sure it is long enough to go from the generator outside to whatever you need it to power. Get the requirements for wattage, how much power you need for each item you will be plugging into the generator. Make sure it has enough and the right kind of plugs you need, since you it will be running outside make sure it has GFCI protected outlets. Fuel and the size of the tank, matter. Gas is easier to find then Diesel, but diesel will give you better fuel efficiency, however, diesel generators cost more. The bigger the tank the longer it runs between refueling, go big. If you buy a gas generator be sure to add a gas stabilizer to the tank, if you are storing gas in the tank and in your gas container to negate the effects of ethanol. Also keep a can of Gum Out around if you buy a gas generator, the carburetor gets clogged now and then and spraying Gum Out in it gets it running. Never keep a plastic gas container on concrete, it will crack, if you need to store it on your concrete garage floor, sit it on a couple scrap 2x4’s. It has exhaust just like a car or truck, whatever kind you buy do not run it in an enclosed area. If you enjoy pulling a recoil cord, knock yourself out, my two cents, spend a few dollars extra and buy the electric starter. Most generators can be left plugged in to keep the starter battery fully changed for when you need it. If you can’t store it where you can keep the battery changed, opt for the recoil cord. 

Call your power company and ask them to send you the form for your doctor to fill out that states a patient lives at your address who relies on medical equipment that runs on electricity. If the doctor’s office will send it directly to the power company, that’s great, but ask them to send you a copy and follow up with the power company to make sure they got it and your house is now on a priority list. If they get multiple grids down teams go first to grids that have a house on the priority list. 

If you need to be alerted if the power goes out in the middle of the night, there are alerts for that. If a text does not wake you, don’t get the kind that send you a text. For about $25 you can get an alarm that will go off and wake you if you lose power. If you are using a monitor already, audio or video, some of them have an outage alarm, check to see if yours has one before you buy something you don’t need. 

If all you need is to get the stair chair working so you can get your loved one safely up or down the stairs, call the Fire Department. A fire truck is a big generator on wheels. Let them know it is not an emergency but you need help and explain. They will run an extension (you should keep one in the house that is long enough) to the stair chair. If your loved one was on their way up or down the stairs when the power went, call the Fire Department, don’t try and get them out of the chair and on to the steps. They can get to you in minutes, don’t risk it, call them.

If you have solar, then you don’t have to worry about power outages, if you don’t at least buy a solar charger for your phone and tables and keep it charged. TV is going to be down and once everyone is safe and you are over the panic phase, you’ll want to watch a movie on your phone.

---

AFTER - Pies

I don’t think the people in stores on Friday will be this orderly

I will be writing my next post on Friday, I will let you know if I take that leap and head into the crowds, if I’m ok or snacking on Xanax. Tomorrow I have a lot of work I need to get done and pies to bake, plus five days a week might be a bit too much for me right now. I will see how it goes if I cut back to 2 or 3 posts a week. I also want some time to work on the “year in-between” post. I have to find the rhythm that works for me. I don’t know if anyone out there is reading these posts, but I know writing is helping me work through these past few years. In someways this blog is easier then I thought it would be, in others, it’s harder.

Denise

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!