Tonight's picture was taken in July of 2009. Mattie was in the outpatient clinic with Anna, his physical therapist. Anna came into our lives very early in Mattie's treatment process. She was a God sent, as she built a great rapport with Mattie, was a creative thinker, and was committed to helping Mattie regain his strength and abilities. At that point in time, we thought Mattie had no evidence of disease and our goal was to help Mattie walk again so he could return to school in the Fall. The Fall never came, as Mattie died two months after this photo was taken.
Quote of the day: Hearts can break. Yes, hearts can break. Sometimes I think it would be better if we died when they did, but we don’t. ~ Stephen King
This morning my dad had a physical therapy session. I am glad that the session took place at home rather than at his memory care center, because it was important for the therapist to see what I am up against at home. Given my dad is taking pain meds, the byproduct is constipation. That may not sound like a big deal, but these moments are like hell on earth with someone who has Alzheimer's! It entails constantly running to the bathroom, to attempt to go, and yet frustration when nothing happens. The whole physical therapy session was like this (running back and forth), and thankfully his therapist is a kind and very patient soul. In the middle of the session, I gave my dad a laxative, because I had to get a jump on this issue. I will never forget being in the ER for 12 hours during COVID with my dad, who was suffering from an impacted colon. So when my dad faces constipation, I do not wait for it to resolve itself.
What I have deduced is there is a big difference between therapists who worked with my dad in the hospital versus therapists who know my dad over time and have worked with him extensively at home. Today I reviewed the methods taught to me in the hospital for my dad to get up the stairs as well as the strategy to get into the shower. I actually HATED both hospital strategies, mainly because they seem unsafe! What works in the hospital, in a controlled environment, actually looks quite different at home. Of course the biggest complaint I have is the therapists in the hospital never asked to see photos of our home, to understand the spaces I need to negotiate with my dad. Knowing the space, would have shown them that their strategies needed to be altered. Today's therapy session concurred with my perspective and we came up with ways to maneuver my dad safely around the house. To me this is frustrating because wouldn't it have made sense to have a family meeting in the hospital right from the beginning to discuss these logistical issues and hear my perspective? It is NOT how the system works, which is why the system truly is not family centered and ultimately not focused on the patient's best interest.
Though I did not want to leave my dad today, I had a scheduled doctor's appointment in the afternoon. This was an important appointment with a breast specialist, that I did not want to reschedule. After last year's assessment with her, I learned that I am classified as having a 40% chance of getting breast cancer, compared to other women my age (who have a (9% chance). I know when I heard this last year, I was very upset, especially when given three options of care: 1) being scanned and monitored every six months, 2) taking medication that can reduce the chances of getting cancer, but of course there are potential side effects, and 3) having mastectomies. It is like the ridiculous to the sublime. It is much harder facing these conversations and decisions without my husband.
The breast specialist was running late today. So I sat in the exam room waiting. I have been suffering with a terrible migraine all day and felt my stress level was over the top. When the doctor walked into the room, she apologized and told me it was a difficult day. I absorbed what she was saying, and then connected the dots. She deals with cancer and therefore, I knew immediately she had to have some tough conversations with patients. I remember those days all too well! As soon as I heard it was a tough day for her, I took several steps back in my mind. I became extremely patient and compassionate, because I knew several lives were altered and forever changed today after hearing their diagnosis! Knowing this, I had NO PROBLEM with the doctor running late!
My doctor works from 7am to 7pm every day! She doesn't complain about this, why? Because this is a person who truly LOVES her job! She believes in getting to know the whole patient, not just talking numbers! In fact, she was telling me about her daughter who recently had to go see a doctor. My doctor was coaching her as to what to ask the doctor! Her daughter basically told her that NO DOCTOR wants to hear about how she is emotionally doing and this caught my doctor by surprise. I then said to my doctor..... your daughter is absolutely correct! Most doctors don't want to hear about emotional issues, but yet if they did, they have NO IDEA what to do about them! So in essence medicine today cares for a patient in a silo, in a compartment, only seeing a small segment of the whole person. Any case, my doctor said to me.... who is going to take care of me when I should need it? My response to her..... I hope if and when you need medical support or guidance, you find a doctor just like you. A doctor with compassion. She literally grabbed my hand and held it! To me this showed me the human side of this doctor, which means a great deal to me.
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