Saturday, March 26, 2022

Saturday, March 26, 2022

Tonight's picture was taken in March of 2008. Literally four months before Mattie was diagnosed with cancer. That day I went to Mattie's kindergarten class and did a presentation for the children about one of my travel experiences as a child. It involved being on a transatlantic voyage. After telling my story, the children had the opportunity to draw, color, use stickers, and other media to depict their own travel story. As you can see, Mattie drew the SS Mattie. The picture has a lot of luggage stickers and dolphins. I remember that day and I am so glad I made time for them classroom visits. 

Quote of the day: Rock bottom became the solid foundation in which I rebuilt my life. ~ J.K. Rowling

I am perplexed why my parents get up early in the morning, just to sleep right after breakfast. All three of us are struggling with a head cold. Though I think my issue is another sinus infection. No surprise as I am constantly working and under great stress. 

I did not have the energy to go to the grocery store today, so thankfully Peter took that on. When he got back, we did walk Sunny. It was freezing out and my head is congested, but it was good to get out and moving.

Peter and I took my parents out for a late lunch today. At lunch, my dad started again with his hand pain. Peter got to see what we went through yesterday and he got it right away as to why I called the cardiologist on Friday. Needless to say when I got home this evening, I got my dad's EKG test results (from Friday's ER visit) through the portal. The results left me with MANY questions, so I wrote the cardiologist. Honestly I don't know if I am coming or going on any given day. Meanwhile I am trying to develop the Foundation's Walk website and get a March newsletter out by MONDAY!

Friday, March 25, 2022

Friday, March 25, 2022

Tonight's picture was taken in March of 2008. I happen to love this photo and I can remember taking it. Mattie came home from school and we went outside into our commons area to fly his kite. It was in this space that Mattie learned to walk, ride a bike, fly a kite, and even drive his ride-on vehicle, Speedy Red. I will always remember this space fondly .

Quote of the day: Persistence and resilience only come from having been given the chance to work though difficult problems. ~ Gever Tulley

I snapped this photo of my dad yesterday. He spends the majority of his days sleeping. If you ask him why he is so tired, he will say because he is exercising SO MUCH. He has no memory of the fact that he isn't moving much less not exercising. 

This afternoon, we had a meeting with the executive director of Insight Memory Care Center. She is lovely and handled my dad very well. She asked him and us lots of questions and she gave us a tour of the facility. My number one observation was that all the patients there were pretty much in their own worlds. I saw very little interaction with each other. It just reinforces what I am feeling and experiencing with my dad. Basically the disease leaves you with a shell of a person. 

One observation I had was that this director understood my dad's level of cognitive decline MUCH better than his own physical and occupational therapists, as well as all the people we met in his two week hospital stay. In the hospital they classified him as having mild stage dementia. Whereas at Insight, she could see within minutes what I do and that is he has moderate dementia, which is rapidly spinning its way into late stage dementia. A person can have early dementia for 2-4 years, and moderate dementia for up to 10 years, before moving to the later stages which then requires constant support and help eating. I diagnosed my dad with dementia in 2015. His doctor finally caught on in 2019, after a lot of prodding. So in all reality, this has been a 7 year journey so far. 

The one bright spot was a received tulips today! These flowers are from my friend, Margy's sisters. Margy died on March 28, 2021, and they sent me Margy's favorite flower to mark the upcoming first anniversary of her death. I was very honored that they would think of me. 

After our tour of Insight, I took my parents out to lunch. At lunch, my dad was basically sitting at the table, sleeping. When his food came, he landed up chewing the meat and then spitting out each and every piece. This bothered my mom, who still can't process that many of the observations we make are dementia related. In any case, living with this situation around the clock is stressful and deeply depressing. 

While at lunch, my dad started moaning in pain. He said his left hand was bothering him and it was cramping. The pain was significant enough that I decided to call his cardiologist. When the doctor called back, he said I should take my dad to the ER.  

So back to the ER we went! Of course when my dad talks with the doctors, he says he is fine and has no pain. I have to explain to them that he can't remember what happened the previous minute. In any case, after five hours in the ER, we determined that his pain was NOT heart related. 

My mom and I were talking to each other in the ER room and my dad piped up saying that he doesn't know what we want from him. That clearly he is a burden and that we would prefer he die. I dealt with that head on, because that was his interpretation, not the reality. I explained to my dad that we want what is best for him and we are desperate to find the necessary stimulation he needs to engage his mind and give him a better quality of life. He listened. But because he has no memory or understanding of things, this impacts everything in his life.... because he can no longer participate in conversation, watch TV, read a book, and the list goes on. 

I am tired and not feeling well, with no end in sight. What I do know is that I am filling out the Insight Memory Care application and we will go through the intake next week, with the hopes that this program can offer my dad an outlet that we are unable to provide.

Thursday, March 24, 2022

Thursday, March 24, 2022

Tonight's picture was taken in March of 2009. I wasn't in the room with Mattie that day. Peter was, along with Mattie's nurse, Katie. Together they got on this wii board to do yoga positions. Despite Mattie's disabilities, he really wanted to try this and did quite a good job balancing and moving his body. He was proud of himself and I remember hearing about this the rest of the day. Of course anything that provided Mattie with positive feedback, I supported! 

Quote of the day: Courage is grace under pressure. ~ Ernest Hemingway

My mom has been getting up with my dad every two hours at night. Making it impossible for her to recover from her lung infection. I am concerned about all we are balancing and know it is taking a huge toll. I got my dad up, showered, and dressed. He had breakfast, we did brain games and then we waited for his physical therapist. My dad's therapist could see what I do.... my dad is exhausted and is weak. Of course we are afraid to push him because we did not know if this was cardiac related. Which is why I am THRILLED we saw the cardiologist today. 

The cardiologist was a breath of fresh air. A lovely and realistic person! Not to mention a good listener. He heard all of my concerns! He even allowed my mom in the room with us. As of today my dad no longer has to follow pacemaker precautions. This is outstanding news because we have been watching him like a hawk, afraid he was going to put pressure on his left arm. Now he can use the arm, lift it, carry things, and even use a cane to walk up the stairs. 

I asked the doctor why my dad's blood pressure has gotten out of control with the pacemaker. My dad went from needing one blood pressure med before the procedure and now he needs three. He explained that my dad's heart was not functioning properly and therefore was slow and not pushing blood around the body effectively. The pacemaker has changed this and therefore it is not unusual for pressure to become higher post-placement. In addition, I wanted to know about this diuretic he is on, because both of my parents have no quality of life if they wake up every two hours at night for bathroom trips. The doctor explained that it doesn't matter what time one takes a diuretic, that the body when lying down relaxes and this in combination with a diuretic can trigger one to make frequent bathroom trips. The good part of all of this is the doctor told me that the diuretic acts a bit like a sponge, once a good amount of fluid is released from the body, then things stabilize and my dad most likely won't have such frequent bathroom trips. I hope so because something has to give. 

The main guidance the doctor gave my dad is that his body is de-conditioned. He has gotten used to being a couch potato and has to fight that urge to constantly rest. He told my dad that he has to use it or lose it, and therefore he should comply with my walking and exercise routine. There is nothing medically holding him back from being active. He told him that if he doesn't start moving, he will be wheelchair bound and then that will provide a host of other problems. The doctor also told him that he has many patients like my dad yet most of them are not lucky enough to have me. He asked my dad if he knew how lucky he was. I am not sure my dad puts two and two together anymore, but I know what I do on any given day is not for everyone. It is time consuming, sucks the life out of you, and honestly can be very depressing.  

Wednesday, March 23, 2022

Wednesday, March 23, 2022

Tonight's picture was taken in March of 2009. Mattie was outside the child life playroom and interacting with Linda, his child life specialist. Linda captured this photo! Mattie was holding a pair of scissors (and acting goofy) because he was asked to cut the ribbon for the playroom's ribbon cutting ceremony. Mattie was very excited because this playroom provided us a haven of normalcy. 

Quote of the day: We don’t even know how strong we are until we are forced to bring that hidden strength forward. ~  Isabel Allende

This morning I couldn't get out of bed. The post nasal drip has slowed me down. By the time I got myself showered and dressed, it was 9am. I went to check on my dad and I found that my mom had showered him. That may sound great, but I was LESS than happy about this. Instead I landed up screaming. Screaming because my mom doesn't know his bathing routine, or the fact that he uses a shower chair in the shower. Typically after I shower my dad, I remove the chair from the shower to dry in the bathtub (which was where it was this morning). So my mom had my dad in the shower today without the chair. Which is not safe given his pacemaker precautions. In all reality, I have no idea why she got him washed and dressed because she has NO WAY of taking him down the stairs on her own, or knowing what he eats for breakfast. In addition, my dad spends the entire day sleeping. I am not exaggerating. He only rises for lunch and dinner. It is very depressing to watch. With that in mind, I am not sure what my mom's rush was to get him up this morning. 

The diuretic is causing my dad to wake up several times at night. Which means so does my mom. We are seeing the cardiologist tomorrow and I am hoping he can adjust my dad's meds, because this pace isn't sustainable for my mom at night. I certainly can't do nights, as I am on point all day long. 

I found that my dad has a cold today and my mom is still recovering from her lung infection. Her last dose of antibiotics is tomorrow and I can't say she sounds much better. This afternoon, while juggling all of this, I was busy trying to update the Walk website. I want it done by this weekend, so it can be launched next week. Thank goodness I designed this site from the ground up last year, because I do not have weeks (like last year) to devote to this work this year. In addition, I called Insight Memory Care Center. 

I will be touring Insight on Friday as I am looking for day time outlets for my dad because I realize we can not provide him the stimulation he needs. He is lost inside his head, has no interests, and I just can't manage his cognitive needs. I am not sure Insight can either, but it is worth an assessment and a try. Insight is the only comprehensive adult day care center in our are specializing in dementia care. 

Meanwhile if this isn't enough, my next door neighbor who bought her house around the time we did plans an extensive renovation on her house. I mean over the top..... with bump outs, bump ups, the creation of a pool, an external office, and the list goes on. The construction is planned to take a YEAR! Myself and the neighbor on the other side of this house are very upset. I know this will mean debris, dust, and non-stop banging and work. Not to mention construction vehicles everywhere. I escaped the city for peace and tranquility and instead the chaos has followed me and NOT at a good time. 

Tuesday, March 22, 2022

Tuesday, March 22, 2022 -- Mattie died 651 weeks ago today.

Tonight's picture was taken in March of 2009. Mattie was in the middle of the pediatric unit hallway and doing physical therapy! No session was without an entourage. In the photo was Anna (PT), Denise (social worker), and Linda (child life specialist). Next to Mattie, bent over and racing him was Meg (child life intern). We met Meg in the outpatient clinic one day. Mattie took to her right away, because Meg is bold, energetic, and witty. She could keep up with him and he liked the challenge. One day during a physical therapy session, Mattie wasn't interested in participating at all. Meg decided to egg Mattie on and started to compete with him to take steps. That was all Mattie needed and he was eager to race! In fact, Meg and Mattie created physical therapy Olympics on the 5th floor of the hospital. Yes it also included winning medals! 

Quote of the day: The human capacity for burden is like bamboo – far more flexible than you’d ever believe at first glance. ~ Jodi Picoult,

I had a horrible night of sleep. I believe I am coming down with another sinus infection. I am drowning in fluid and miserable. But I have no down time to heal. I dragged myself out of bed this morning and got myself together, made breakfast, and then dealt with my dad's routine. 

My dad had two visitors today, his occupational therapist and a new nurse. Fortunately the nurse I had last week isn't coming back. We were a bad match for each other. Yesterday and today I gave my dad Senokot. I learned from 2020, that my dad can get an impacted colon very easily, so if he doesn't have a bowel moment by day three, I am intervening. What I have noticed since my dad has gotten home from the hospital, is that he is now incontinent. I spent a good portion of today changing him almost on the hour. Of course being on a diuretic for his blood pressure and swelling is not helping. Fortunately we see the cardiologist on Thursday and I am hoping we can get some guidance. Naturally I can't determine if the incontinence is from living in the hospital for two weeks, where my dad's bathroom needs were not met immediately like I do, whether it is a reaction to being on a diuretic, or simply part of his dementia decline. 

My dad's in-home physical and occupational therapists, people who worked with him prior to hospitalization, have both commented on my dad's decline and weakness since they saw him last. They notice a big difference in him, so much so that the occupational therapist asked me today.... how long can you keep this up? She can see what I am balancing on any given day and believes (as I know) that my dad's situation is not going to be improving. In fact since he has moved to Virginia, he has been on a steep decline. Which is why the therapist mentioned that I may not have a choice, that my dad may need an institution to care for him. She knows that I am trying to avoid this, but seeing my daily dysfunction through someone else's eyes was interesting.  

Meanwhile, my mom isn't feeling well either. She is trying to recover from a lung infection flare up. Yet she can't get much sleep at night, because my dad is up and down running to the bathroom. Because he is incontinent, my mom has to also change his pads and meet his other demands. Specifically his back is still itching from the allergic reaction to the adhesives from pressure sore pads. Though his back is healing, it isn't 100% and the only thing that eases the itch is putting on this noxious cream the hospital gave us. I comply, but its smell is sickening to me. Needless to say, I had my mom relax today in another room on the first floor. Away from my dad and away from people coming in and out today for my dad. I realize my mom needs a lot of rest to recover and rest is not something anyone of us gets in our house.  

Monday, March 21, 2022

Monday, March 21, 2022

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom and creating something from a recipe. This wasn't something to eat, but instead something to play with like slime. That of course intrigued Mattie! As you can see Mattie was wearing a mask, something that many children with cancer are familiar with, as they are left immunocompromised from treatment. Therefore at times white blood cell counts drop very low making them susceptible to all sorts of infections. Mattie did not like wearing a mask both from a sensory standpoint as well as it made him feel DIFFERENT. Unless absolutely necessary, I made the decision for Mattie not to wear a mask, because psychologically Mattie needed the freedom to be a child and not be defined by his disease. 

Quote of the day: You have power over your mind – not outside events. Realize this, and you will find strength. ~ Marcus Aurelius

I got up at 6:30am so that I could get myself together, and then make breakfast, get my dad up, showered, dressed, downstairs, and eating breakfast. I even had time to do brain games and my dad's physical exercise routine. I had a dentist appointment at 11am in the city, and therefore had to leave the house by 10am. But I can't just get up and do what I have to do. I have to think about everyone else in the house first. 

When I got to the dentist office, I was expecting to see my hygienist. I only started working with her last year, after my long time hygienist left the practice to go back home to help her family. I greatly miss her as she was sensitive and competent. To my surprise, I was introduced to Annie (not my typical hygienist). Annie explained that my hygienist was still helping another patient, therefore so as to not keep me waiting, she would be doing my cleaning. 

I typically do not handle changes like this well, especially when the office hasn't prepared me. However, it turns out I LOVED Annie and have requested her as my new hygienist moving forward. Naturally she was competent and capable but that isn't why I loved her. Before starting with me, she went over some family history issues. She asked if anyone in my family has Alzheimer's. Well that was a loaded question, so I told her about my current caregiving situation. She was so taken aback by what I am enduring that she said.... well you need to be pampered. She lowered the lights in the room, put on spa music, and even gave me a cloth for my head with aromatherapy oils, now to mention a neck massage. Who does this? Apparently Annie! I found her care, concern, and compassion just what I needed today. 

Turns out that Annie cared for a parent and an in-law with Alzheimer's and understood the road I am walking. Now if I told the same story to the other hygienist, do I think I would have received the same compassionate response? I would say no! In fact, when the dentist came to examine my teeth and Annie told him what I was experiencing, he had very little to say. His response did not surprise me at all, this is what I am used to, as so many people do not understand the challenges, stresses, and debilitation from family caregiving. It was Annie's response that caught my attention, as I wasn't expecting it but wow what a difference a little kindness can produce. I told her she was my respite for today, rather funny that I would find respite in a dentist's chair, but there you have it. 

Sunday, March 20, 2022

Sunday, March 20, 2022

Tonight's picture was taken in March of 2009. I never really reflected on this but this clay piece Mattie was working on became a Mother's Day present for me. I am not sure why I never connected two and two together. But this piece was glazed a  beautiful bright red and then Mattie and his art therapists created tissue paper flowers, put them in the vase, and Mattie presented it to me on Mother's Day. To this day I still have this red vase. It sits in our family room and is a constant reminder of Mattie and the bond we will always share. 

Quote of the day: Be faithful in small things because it is in them that your strength lies. ~ Mother Teresa

When I got into my parents bedroom today, my mom looked more tired than usual. In fact most people tell me my mom looks sicker than my dad. It turns out my dad was up three times in the middle of the night having to use the bathroom. I made note of this because if this is what the diuretic will produce, this medication will have to stop. 

I got my dad up, washed, dressed, and downstairs for breakfast. I did his brain games with him and had him walk for five minutes. However, he is chronically exhausted and out of it. My parents wanted to go out for an early dinner, so Peter and I made this happen. 

This was my dad at dinner. Totally zoned out, not engaged with us or the world around him. It is a very sad sight. While eating our entrees, my mom stopped eating. I asked her what was going on and she proceeded to tell me that she hasn't been feeling well since last night. Why she waited to tell me at 4pm is beyond me, but then I had to mobilize and respond. It is my usual mode these days, I am constantly dealing with issues and crises. 

I called my mom's pulmonologist office and left a message for a call back from the after hours physician. I heard nothing back and after 45 minutes called Dopey, my parent's concierge doctor. Dopey responded and basically said he couldn't help. He told me to call back the pulmonology office until someone responded (as if I couldn't figure this out). Dopey lives up to his permanent dopey status. 

Thankfully the pulmonology office did call back. The doctor was wonderful and compassionate. He listened to all my concerns and he looked at her case notes. Since we just visited this week and completed a battery of tests, he was able to easily help us. He prescribed her antibiotics, steroids, and inhalers. But of course I live in the boonies, where the pharmacy closes at 6pm on a Sunday. Unlike my city pharmacy which was open 24 hours a day. In any case, I called CVS and spoke to the pharmacist. She was nice enough to process the four scripts and I told her I was on my way to pick them up before they closed their doors. 

Each day I hope for a smoother, calmer, and more manageable day. A day where I could do just 30 minutes of work for the Foundation! I haven't had a moment's peace yet and forget a minute for myself.