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 - 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

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

And he makes the 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 - 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

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.

fullsizeoutput_27ed.jpg

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.

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