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.

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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

CARE - The Plan

It was 1946, a Friday night and she was 17 and getting ready to go to a school dance, so she asked her grown daughter to iron her dress because she could not do it from her hospital bed. In the alternative universe where people with brain damage live, logic does not always apply. When do you do battle with their delusions and when do you surrender and is there anything you can do to win the battle? 

Mom

As heartbreaking as it was, many of the delusions both my parents had were funny. My Mom would repeatedly scold me for not answering my Grandfather’s questions. Her Father died before I was born, but to her he was sitting with us trying to have a discussion with his granddaughter, so I would have her repeat the question and I would talk to an empty space. I had to be careful not play along to well, this was not like an imaginary friend for a child where I too could make up parts of his conversation, she saw and hear him as clearly as she saw and hear me. When it is harmless I went along, I was not going to convince her in that moment that she was delusional due to a terminal brain tumor that she did not remember she had. We stopped telling her she early on what was happening to her, why keep telling a person who can’t remember, that they are dying. We simply said she was sick and we were taking care of her and she had nothing to worry about. 

My Mom would get upset when she did not understand what was going on, so we came up with “The Plan”. The Plan was a few printed out pages in large enough font for either parent to read without their glasses, it simply spelled out what was going on around her. She was sick but there was nothing to worry about and she and Bill (Dad) were being taken care of, don’t worry. If you don’t understand something ask Bill. We had the weeks schedule listed. Who would be in the house with them, who would be visiting each day (Her Sister’s, Brother-in-laws, nieces and nephews and friends all had scheduled time slots though out the week). I would arrive on Wednesday nights after work (I lived and worked two hours south of them) and my Sister would arrive on Friday (two hours north) and we would stay until Sunday night. We stressed there was nothing to worry about, that we had everything covered and they were loved. The last pages of  The Plan was a contact sheet with phone #’s of friends and family that they could call at any time. Everyone had a copy of the plan, everyone involved in her care. We were and are very lucky to have unbelievable neighbors who are more then neighbors and friends, they have become family, and they got a lot of strange calls for help and rescued us every time. 

She kept those pages close, in the beginning we would remind her to read The Plan when she had a question that it answered. We wanted to reinforce the use of it for when we were not there to calm her, it worked. By the time the tumor took away too much of her to care about anything, those pages were well read, worn and creased many times. 

That worked for Mom, but not for Dad. Mom was confused about her time line and what was happening around her. Dad knew exactly what was happening, he and I were traveling around the world because I was a government assassin taking out the bad guys. 

My Dad’s delusions came in three categories; the two of us being a hit team, this is not his room and/or house and he had to go to work. The assassin part came from our shared love of reading mystery/thriller fiction and hours spent talking about the books we shared. To him I was a character straight out of a Tom Clancy or David Baldacci novel. We only had a problem with this reoccurring delusion twice. Once when I was trying to convince him it was night time and he should sleep, I opened the blinds to show him it was dark outside, and he responded that it is always this dark during the day in Oslo this time of year. How could I argue with that, he was right. The second time was when he was fully aware, not delusional, and was about to get a visit from a priest. He was very concerned that he might become delusional while giving confession and confess my wet work to the priest. He made me explain to the priest, who did not know me, that this might happen and I am not a professional killer. 

This is not his room/house was pure hell. Sometimes he thought he was in his car in the living room and I needed to get him upstairs to bed. Other times he thought he was in someone else house and they wanted us to leave, or he was in a replica of his room that was downstairs and he wanted to go upstairs to the other room. When I told him he was already upstairs in bed, he would try to get out of bed himself. His body was dying on his paralyzed left faster then his right, any movement that caused even the slightest friction on that side caused tissue breakdown and bad wounds. For 20 years the right side of his body carried his left around. My Dad had always been strong, but that right side was solid muscle and he could work his way down to the end of the bed where the rails ended and try to get up. Those were sleepless nights for both of us and me stupidly trying to reason with him got us nowhere. 

He had to go to work was also hell. But it was one morning after a night of keeping him still in the bed trying to convince him that it was not time for work yet and we needed to sleep, that I tried something that worked. He had been going on all night about needing to get to work to send out specialized transformers, he was an electrical engineer, to Germany. It was an emergency order and he needed to get all the paper work together and instruct the shipping guys and other engineers, all of whom he had been naming thought the night. I went to the other room and called my Sister at work. I explained what I needed her to do and she was, of course, on board, remember from an earlier post I told you that you needed a sister who went along with all your hair brained ideas, this is why. I went back to my Dad and told him we could not go to the office today but my sister was already in the office and she was going to handle it all, but he had to make a video to tell her what to do. We made the video and sent it, in about 10 minutes we got a video back. She was at her desk, a co-worker must have filmed her, she held up paperwork, told him she had talked to the shipping guy, who he had named in the video and she also used that names of engineers I had given her that he did not mention on his video. She outlined her calls with shipping and the engineers and assured him that all was taken care of and it was being shipped. He was so happy and relieved, he wanted to make another video to thank her and on that video I found out that I had a conference call with other engineers (now I was an assassin/engineer) later in the day to work on ratios. Just in case he did not snap out of this, I lined u friends to do a fake conference call about ratios. 

He snapped out of it later after we both got some sleep and we talked about making a video now for his future self. A video with him explaining to himself what was going on and that he was sometimes delusional and he needed to believe and trust me. We made a couple different video’s for different situations. They worked, not all the time but most of the time. There were times after that before I could grab my phone and cast the video on his TV for him, he would stop and ask me if this was a delusion, I’d say yes and he’d say ok, tell me what’s real.

I did not use the videos all the time, only when he would get angry because I would not help him get out of bed or try to get out himself. One morning as I walked into his room he said “You’re limping, it’s that bullet you took in Italy, you need to get off that leg” and I knew we were going to have a fun day taking out the bad guys. 

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AFTER - My Plan

I need more structure in my daily routine. Waiting until the end of my day to write is not a good idea, especially when I am ending a bad day with a migraine and lots of anger. I need to get better at self care and better at asking for help. 

I need to replace the barrel belt on the dryer, I know exactly what is wrong by the noise it is making and how to fix it because my Dad taught me stuff like that. I know what to order and all the steps needed to fix the problem, I have the tools that are needed. Fixing myself is not so straight forward, and I don’t think it is anything that can be easily taught. Identifying the actual cause of the problem can sometimes be the hardest part, we’ve all had the blues now and then, an off day, with no discernible reason why. 

Facebook was just the fuse that ignited my anger yesterday. I think I am still mad at the world, I need to work some of that off at the gym, get back into a routine of actually using my membership. 

This weekend I am going to take the time to create my own “The Plan”. Structure my week days better and start of list for more self care during the week and definitely on the weekend.