WTF
January was a brutal month for some people I love. February seems to be slapping me around a bit. All in all the universe is not cooperating with my 2020 plan. Time to pick myself up again and get back on track. New blog post coming soon.
One To Go
One Holiday gotten through, one more to go. I know not everyone hates this time of year, but for caregivers and those of us dealing with grief, it sucks. I will be back on a normal posting schedule in 2020. One of the goals I am setting for myself along with more socializing, getting out of my comfort zone.
Going to the movies by myself tomorrow, “Knives Out”, getting more comfortable with that, progress. Got a group of friends together to begin playing “Hunt a Killer” for the next 6 months. Not exactly out of my comfort zone, but progress nonetheless.
I know some of you are facing hard times ahead so I will wish everyone strength in the face of hardships and heartbreaks in 2020 along with peace and happiness.
Denise
CARE - Stocking Stuffers
While out shopping with a friend, who was picking up stocking stuffers for her adult children, I was reminded of all the little odd things I had bought over the years to make my parent’s lives or mine easier. After a fall in November of 2011 my Dad could not be alone once he was out of bed, that meant I had to do the grocery shopping when the store opened in the morning, or have groceries delivered. There was no way I could run to specialty stores and medical supplies stores to pick things up. I began to rely heavily on Amazon. I would search the web for a product that might help, it was rare when I found it somewhere else for a better price and faster shipping (if you are not a Prime Member you might find a better price when you include shipping), returns were easier with Amazon too. There are a lot of good reasons to shop local and support small business, but when what you need is obscure, you need it ASAP and you can’t leave the house, you do what works for you.
Making meal times easier with a non-slip silicone placemat. I tried a few different types over the years, and my favorite was the silicone placemats, I could put a mug of hot tea or coffee on it without worry, and they cleaned up so easily. Most of the time I rinsed it off or wiped them down with hot water, but I would also put them in the dishwasher.
Another helpful item was hand grips. They made gripping items like eating utensils, toothbrushes and pens easier to grip and use. I put these in the dishwasher when needed. I got a set of 12 so I would always have a cleaned set ready for use. I liked the shape, below, better then the straight tube, but a straight tube or the egg shape might be better for your needs.
I found a green silicone hand scrubber with a suction cup for washing your hand when you only have one hand to scrub. I’ve just spent an hour looking for it on the web and can’t find it anywhere but you can find nail brushes with suction cups that will work. It was perfect for my Dad, I brought one for each bathroom, it was much used, also an auto soap dispensers so he did not have to struggle with bars of soap or try to pump and catch soap one handed. Speaking of clean up, no-rinse body wash really comes in handy when a bath is not an option, in between shower days or for the bedridden.
Are you doing transfers, or someone you know doing transfers without a Gait Belt, get one with handles. I had both the plan one and one with handles. After I got the one with handles I never used the other one again.
This belt helped me stabilize my Dad when he would stumble, helped me get him into my SUV and helped me transfer him when he was no longer mobile. I am sure, along the way, it saved my back from injury, the gait belt for my Dad and a back support brace for me.
Have someone in your life that uses a hospital bed, use a bike light or a grill light as a night light attached to the rails. This comes in handy especially if they are using urinals during the night. How about problems with aspirating liquids, a specialized feeding cup helps with that, trouble holding a heavy mug, lightweight plastic mugs are available.
Not getting them to eat enough to get the protein they need, find a protein pouch they like. Somedays I could find these at one of the local stores, but it was a coin flip, and I needed them on hand. There is also oatmeal pouches by Munk Pack, and Chia Seed pouches. My Dad loved these and I kept a supply for him while he was in rehab after a hospital stay. He did not always like the food and these do not need to be refrigerated. Later, near the end of his life I wanted something I could grab if he said he was hungry, even a short trip downstairs to get him something could result in him saying he was no longer hungry when I returned with food. With these pouches I could open one and stick it in his mouth before he finished telling me he was hungry.
I am just running through my order history and picking out things that would fit in a christmas stocking, there is more, but I will leave them for another post. I will end with this one, because I think it is important to have a fingertip pulse oximeter. Every caregiver should have one, checking their oxygen level through different situations helps you gauge when you should schedule activities, such as No PT/OT and a shower within the same two hour time frame.
Hope this helps if you are looking for practical gifts for a caregiver or a loved one receiving care.
AFTER - Stuck
Somedays I feel stuck, that I am not moving forward, not taking steps backwards but standing still. I think it is because of the approaching holiday. This time last year I was numb and I let the holidays just roll by without any participating. This year I am putting my toe in, testing the waters with mixed results.
I had been doing well sleeping, but the last few weeks I am back to waking up in the middle of the night or not being able to fall asleep. One of the things that I struggled with last year was hearing my Dad call for me in my sleep, waking up and starting to go to his room only to realize he’s not there. I’ve not had that happen in a long time, but it is popping up again. This time around it just wakes me, I don’t get out of bed and head to his room, I know he is not there, but I’m losing sleep. When I start the day exhausted it usually goes down hill from there.
I am glad I will be with my Sister at Christmas this year, I don’t know how I am going to feel, and I will not have to fake happy around her. By the time we get together we will both have seen STAR WARS: THE RISE OF SKYWALKER (Yes it should be in all caps) but I am sure we will see it again together (hint to my Sister to get tickets) that will make me happy.
Going to try facing the crowds tomorrow, we shall see if I don’t chicken out this time.
Denise
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
HAPPY THANKSGIVING However you are spending your day
I hope there is pie
My Aunt Kate Hunter’s Apple Pie. I have been baking these since I was a kid.
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
CARE - Pet Peeves
I wanted to throat punch anyone who compares the caregiving of my parents to caring for a baby. End of life caregiving is just that, end of life, there is no joy as they struggle to walk, no choo-choo or airplane as you try and get them to eat.
These are a few of my pet peeves of as caregiver and a few suggestions for anyone who has a caregiver in their life. Please add your own and suggestions in the comment section. My hope is to make this page a good resource for those who care about a caregiver. As this grows I will repost it occasionally.
A caregivers life is hard enough, don’t make it harder:
Don’t stop inviting me to things just because you know I have to decline, I still want to be included. Even if I could get someone to take over caregiving duties, I am too tired, depressed, emotional… fill in the blank…to go. I can’t do small talk anymore, I’m not just out of practice, I don’t want to. My priorities have changed and my idea of a good time is now different from yours. I am afraid to leave them, as much as I want some down time, my stomach is in knots when I am not overseeing their care.
Don’t tell me you understand unless you’ve gone through this yourself. It’s ok that you don’t understand, I don’t expect you too, I didn’t until I lived it. I hope you never have to go through this, but if you do, I will be there for you if you stick with me through this.
My day can change at the drop of a hat, that means I might have to cancel plans at the last minute. You might find it annoying but having to cancel might be devastating for me, for whatever happened that made me cancel and for missing out on something I had been looking forward too, I don’t have a lot of things to look forward too.
Do not ask me “how can I help” or “what can I do for you”, I don’t have time to make you a list. I don’t want to suggest something only for you to make excuses why that doesn’t work for you, can I think of something else. Just put yourself in my place as best you can and come up with your own list and do something, anything.
Most people will not come up with their own list, so I thought now that I have some time I’d make one. Feel free to edit it for your own use and hand to your friends and family when they ask “how can I help” or direct them to this post, who knows maybe they might just help.
Here is how you help, what you can do:
Sibling(s):
One of us needs to be the one in charge of the day to day, but we need to make decisions together. Telling me “whatever you think is best”, does not help unless you follow up with “but have you thought of…”. I need your input, please don’t leave everything on my shoulders just because I am local or have a flexible schedule or because I was the one to step up. We need to be a team, I need to be able to vent to you without worrying I am make you feel guilty. Make an effort to visit as often as you can if you are not local. If you are local we should be tag teaming this, step up. I understand that you are busy, but so am I. Your busy is living your life as you normally do, my busy is walking away from my life to care for our parent. Make our parent’s (Grandparents, Aunts, Uncles…) care and my sanity one of your priorities.
Other Family:
Work as a team, contact one another and work out a schedule. Check with me to see if there are any food restrictions if you are bring food. Don’t all come at once, unless all is a maximum of 4 or so. Too many people at once can overwhelm our loved one. Create a group text if one does not already exist, so I can update everyone at once or designate one person that I call with updates who informs everyone else.
If we are going through a long hospital stay or rehab after hospital stay, visit there. Offer to take over the watch, but understand I might need your visit more then I need a break.
Don’t tell us you are going to visit more often, then don’t, we feel forgotten about and we have enough heartbreak to deal with, don’t heap more on us.
Close Friends - Near and Far
If I can’t go out, bring the party to me. By party I mean visit and make me laugh or call and keep me company.
Check in ask how everyone is doing. Do some research on what my loved one is dealing with so we can have informed conversations. You educating yourself on our situations shows me how much you care more then care packages, although I love care packages.
If my loved one is in the hospital, drop off or send a hospital care package for me. Tissues, power bars, magazines or a good book you think I’d like, you know me, you know what to put in a care package.
I know I’ve canceled on you, but if I tell you I’ll be free on a certain time to hang out with you, please make time for me.
Organize the rest of our friends, brain storm ideas to make my life a little easier.
If you’ve been through this yourself, you don’t need a list.
AFTER - Baby Steps or Leap?
Today I agreed to celebrate Thanksgiving with friends and made plans to celebrate Christmas with my Sister. I had tossed around the idea of going to the movies on Thanksgiving, I almost ordered a ticket for Knives Out and I could have used that as an excuse to avoid the holiday, but I didn’t, and I feel good about that. I can’t tell you the last time I celebrated a holiday. Last year I just wanted to be by myself, and before that I just went through the motions for my Dad. I don’t remember the last time I enjoyed a holiday. I even gave a thought to getting a tree this afternoon, but I think that is too much, baby steps.
I did work on my schedule over the weekend and although I am finishing up this blog post after 8 pm I did start it earlier today. I was able to get to a project that I have been wanting to start because I managed my time better. Let’s see if I can stick to this for a week, short week being a holiday and all, less pressure.
Speaking of pressure, Black Friday scares me, the crowds not the sales. The last time I was in a crowd, an outdoor concert that was jammed packed, I had an panic attack. I am thinking of going to one store and see how I do, sort of test the waters. I know it’s illogical, however, my panic was that I could not get to my Dad while in that crowded venue. I know he is gone, he no longer needs me, but that is what started racing through my head. This is not taking baby steps, this would be a leap.
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.
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.
AFTER - Lots of Anger Today
After is first today because I am feeling a lot of anger and until I write about it I don’t think I can focus on the Care Section.
Yesterday was emotionally exhausting and I ended up going to bed very early, I think I was asleep by 8:30. So of course I woke around 3:30 and could not go back to sleep. I was reading the news on my phone when I got a message from Facebook, that part of the Ad I had submitted to boost this blog was rejected.
Here is their justification for rejecting it:
“This ad isn’t running because it uses images that excessively focus on a person’s body or body part, or depict unlikely before-and-after results. This can make people feel bad about their state of health, and goes against our core value of fostering a positive global community. What to do next: Avoid using images that are zoomed-in on specific body parts, portray a certain body type as ideal, or use before-and-after results.
I was not happy that my Ad was rejected because I used the photo of me holding my Dad’s hand and an algorithm kicked it out, but there was a review request process and I figured once I explain it will be fine, nothing they stated applied to my photo. I probably should have waiting and thought it through but it was 4am and I was pissed off. I wrote the following:
“This is for a blog about family caregiving and life after they are gone. That is a photo of me holding my Dad’s hand as he was dying. That is what family caregiving is about, holding their hand through the entire process. It’s not body shaming an elderly persons hand, it’s about loving your parents.”
I got the same rejection notice back.
If I was not meeting one of my cousins for lunch today, I would have probably spend all day trying to fight this and brooding, thank you Mark (my cousin, not Zuckerberg). I am still very angry, I will continue to try and reach them via twitter because there is really no way to contact a human at Facebook.
Here is the part where Care meets After in this post. Illness and death are part of life, my Dad’s death is part of the story of his life. I have photo’s of him as a little boy up until is last day, including the photo I use for this blog. We document the story of our lives in photos and videos and of our family and friends, why should we stop before the story is over?
CARE - Lists
I just got back from a Funeral and my head and heart are just not up for a regular blog post today. I thought I’d share a list of a few of the topics I want to cover in the coming weeks. Some of them are deeper into the weeds then others, some are harder to write and some were just suggested to me today. I thought if I shared this list you could hold me to covering these topics and maybe even suggest a few more. This is not an all inclusive list, just the up coming weeks likely topics and not in any particular order.
I’m not sure if I love making lists, or it’s the collection of funky note pads and note books that I love.
Stair chairs
Lift chairs
Commode chairs - stability, privacy and easy clean up
Shower stools, chairs and sliding benches
Hospital beds - different type of rails, mattresses and bumpers
Power Outages
Mishaps and Mistakes
Monitors, audio and video, safety alarms and alerts
Medication Trays and dispensers
Broken Reasoning - When to go with it and some ways to deal and/or prepare for it
Wheelchairs and ramps
Hospice - The Good, The Bad and the Ugly
Keeping minds active
Finding the Funny in even the worst of times
What happens after death - Not the after life, but funeral arrangements and probate.
Help and equipment, what Medicare or Medicaid pays for, how to find state and local help in your area
Pet Peeves of a Caregiver
Asking for Help (I really suck at this, so it’s going to be more about learning from my mistakes)
Research, Research, Research
Building a good medical team
Dealing with the isolation of caregiving
Changing priorities
Urinals vs External Catheters
Wound Care
Ok, not the type of falls I am writing about, but a much more pleasant photo then an injured person on the floor.
CARE - Falls
I could not get to him fast enough, I saw him go down. His head hitting the wheels on his kitchen chair and in an instant there was blood everywhere. November 11, 2011, my Dad fell and everything changed. He could no longer be left alone.
This will not be my only post about falls. It will take more then one post to though all the different steps we took to try and prevent my Dad from falling and types of falls, yet he did have falls. He would sometimes let go of his cane to use his right hand and I would tell him not to do it, he could fall, his response was always “I’m not going to fall”, or “I done it before and haven’t fallen”. I can’t tell you how many times I told him it would only take one fall, one broken bone to end his mobility, plus he was on blood thinners, every fall risked internal bleeding.
Every 11 seconds, an older adult is treated in the emergency room for a fall. According to the National Council on Aging, one in four Americans over the age of 65 falls each year. In 2014, older Americans experienced 29 million falls, resulting in 7 million injuries. Every 19 minutes, an older adult dies from a fall. 80% of falls happen in the bathroom.
When do you need all the things to minimize falls, before a fall. When do we normally make all the changes needed, after a fall or two or three. Unless someone is with your loved one 24/7 or they are bedridden, they should have some kind of fall alert. Most these days no longer requires a button to be push, it detects falls. Many people dealing with Dementia forgot to push the button, thank you technology. Make sure it is water proof, or else it is going to be left by the sink or in the bedroom when they fall in the shower. But that alert is for after a fall, it does not stop a fall from happening.
If you are caring for a loved one, or you have someone in your life over 65, put grab bars in their bathrooms, put grab bars all over the house, but start with the bathroom. Make sure their bathmats are all nonskid. In the elderly most falls happen on the way to or from using the toilet. Getting up to fast can cause them to become dizzy and lose their balance. A nice head rush is fun when you are younger but after a certain age not so good. A grab bar to hold on to until the dizziness passes can make a huge difference. Have a conversation about grab bars, there are a variety on the market, there are even sturdy suction cup type, but if you go that route make sure they have indicator lights that let you know if they are secure, they lose suction and need to be reapplied from time to time. Have crazy angles and can’t find anything on the market that fits your bathroom, make your own out of pipe from the hardware store. People don’t want them in their homes, they don’t look nice or they don’t want visitors to see them, or admit they need them, you need to get them past that way of thinking.
One fall can change everything. Even if you do everything possible, falls still happen. We can’t wrap them in bubble wrap, we can’t watch them 24/7. The last seven years of his life my Dad did not walk unless someone spotted him, caught him when he stumbled because one more fall and his doc was taking him off blood thinner. So do what you can in the house to minimize falls. Check out this article https://www.nytimes.com/2018/01/02/world/europe/netherlands-falling-elderly.html the Dutch are doing a much better job taking care of their elderly then we are, you can’t prevent all falls but you can teach them how to fall to minimize injuries.
If they begin to fall and you are right there and can get them into a chair, great, if not don’t try and hold them up if they can’t hold themselves up, gently lower them to the ground. There is a difference between losing your balance and falling and BP bottoming out and falling because you are passing out. See I told you I’d have more then one post on falling.
AFTER - Good Sign!
Today was one of those days that started out very productive. I was getting a lot of my work done (I will do a post soon about the business I started, but I think the “Year In-between” post needs to happen first and I am working on that one) and then around 3:00 I lost steam. Just had an energy drain and today I choose to give into it and stopped, yesterday I did not, yesterday I pushed through.
I am looking at this as a good sign. When I was taking care of my Dad, there was no stopping because I was tired or had a headache, there was no stopping when I accidentally sliced off the tips of two of my fingers, they eventually grew back with just little scars. Then after he died, for that “Year In-between” I was all about giving in, giving up.
Yesterday I had a headache all day, but I still got done what had to be done and built a workbench in the basement. I was still working on yesterday’s blog post and doing all the social media stuff associated with it, way past my bedtime. Today I stopped around 3 and watched Endgame for the, I have no idea how many times I’ve watched it, time.
I’m getting that knowledge of myself back, when to push me when to cut me some slack. That feels good.
Tomorrow I am going to a funeral, I don’t know if I will want to do a blog post tomorrow or not, but I do think that I will be able to tell if I need to push myself or watch Endgame.
CARE - Music
My Mom’s brain tumor caused abnormal build up of CSF (Cerebrospinal Fluid) in the ventricles of her brain. Within 12 hours she went from complaining of a headache to being catatonic. The tumor itself was inoperable, but they could preform surgery to put a pump in her brain that worked to drain the CSF. If the surgery was successful we would get our Mom back for a few months and with radiation to shrink the tumor, maybe she would have a year. She had a 50/50 chance of surviving the surgery. Without the surgery she would die in a few weeks if not sooner. We scheduled the surgery. Since she was catatonic, getting her to eat was a problem. By the time visiting hours began a tray had been placed in front of her, then removed untouched, the nurses explained they did not have enough personal to try and feed her and surgery was in just a few days and she was getting IV fluids. I asked if I could come in early and try to feed her.
I was there the next morning when the tray arrived but I could not get my Mom to respond to me, to open her mouth for any food. I had it in my head that her chances for a successful operation were decreased if she was weak from not getting any nutrition for a few days. She looked so sad, sitting in that hospital chair, head down, so lifeless, so not my Mom, not the woman who just a few years before had taken tap shoes with her on a trip to NYC, slipped them out of her bag and on to her feet to tap dance down the street, (to her sister’s mortification) so she could tell people she tapped on Broadway without actually lying. It was that memory that made me think to try music. Years before I had digitized my parents music collection for them and I had it all on my iPod (it was 2004) in my bag with headphones. I picked a song that I knew she loved, that was loud, a song she would want to dance to, Glenn Miller’s Pennsylvania 6-5000. I put the headphones on her, turned the volume way up and hit play. Her eyes opened, her feet started tapping and she looked up at me and I started shoveling food into her and she ate.
The surgery, pump and the radiation were successful, we had 15 more months with Mom. We used music everyday, to calm her when she became agitated, to relax her when she was in pain and to make her happy when grumpy.
Both my parents loved music and both could sing beautifully, but Dad’s stroke robbed him of his ability to carry a tune and his hearing loss made it harder for him to enjoy music. I kept trying to get him to listen to music again, but he would say, I can barely hear it and I can’t sing any more so why bother. I figured out how to fix the first problem, headphones with an amplifier attached and I finally convinced him that it did not matter how well he sang only if he enjoyed it. Since he was paralyzed on his left side he could not feel if the headphones where over his left ear, nor could he hear in that ear, he would always need a little help with them, and I would gladly help, after I stopped laughing and took a photo to share with my sister.
In 2014 I saw the documentary Alive Inside, it is available to stream and I highly recommend it, you can find the trailer and clips on YouTube. I started to read more about music therapy, the amazing results with Alzheimers and Parkinson’s patients (Google “music and parkinson's gait”). When parts of the brain are damaged by a tumor, stroke, disease or injury you lose abilities that were controlled in that location, memories that were stored there, but music unlike other memories or stimuli affects multiple areas of the brain and is stored in various places. It’s as if our brains create a back up of the soundtrack of our lives, so when some cells are damaged or die, we don’t lose our personal iTunes library.
The last 8 months of my Dad’s life required wound care three times a week, even with morphine the pain in his paralyzed foot was intense during the treatments. As soon as I put the headphones on him and turned his music on, his whole body would relax and he would sing.
Create playlists for your loved ones, get them singing their favorite songs, songs from when they were young. Instead of having the TV on as background noise, that we all do so much, play music. Do it for them, do it for your future self, expand that iTunes library in your head.
AFTER - Music
I love the songs my parents loved, we grew up singing along to Nat King Cole, my Mom’s favorite singer. Family road trips did not include car games, but sing alongs and not to the radio. Car rides were all about learning new songs (new to my sister and I) and singing our favorites. My Dad sang us to sleep with old Sinatra, Dean Martin and Bing Crosby songs. I sang along with both parents during music therapy and those final 8 months of my Dad’s life music played almost non-stop and I never got sick of it. The westerns movies and TV shows he watched, YES, the music never. After he died I could listen to music, but not “his” music. The music I loved my entire life I was afraid to listen too, I thought it would cause too much pain.
Turns out I was wrong, or maybe just enough time had pasted. A few months back a friend sent me several Amazon Echo’s, to fill the house with music. I had it playing different playlists, then one day I just said “play music” and it began to randomly play songs and I found myself singing along to the old songs, the songs of my parents youth.
I’ve gotten rid of cable TV, I just have a couple streaming services, mostly I watch Marvel Movies on a loop when I do watch TV. Music is filling the house again.
The Red Stapler
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 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
Introducing Me
I wrote the below intro a year ago, then spiraled into grief, pulled myself up, fell to my knees a few times and now I am ready, I think...
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!