Sunday, August 2, 2009

Sunday, August 2, 2009

Quote of the day: "Love is a condition in which the happiness of another person is essential to your own." ~ Robert Heinlein (Science Fiction writer)

Peter and I had to wake Mattie up this morning. He was so exhausted from the past couple of days, he couldn't get out of bed. When Mattie stood up and got out of bed, Peter and I were stunned. Mattie literally put his right foot flat on the ground and his knee looked a lot straighter. We are insisting that Mattie wear his leg brace to bed to stretch out his leg (which appears to be frozen at a 32 degree angle), and apparently it seems to be making a difference. Technically Mattie should wear this brace for a good chunk of the day as well, but Mattie has been absolutely opposed to this. Now you are probably saying to yourself, I don't get it. He is a child and you are his mom, I should be able to just get him to wear the brace. However, I can assure you, that would greatly underestimate Mattie's personality, stubbornness, and perseverance. When he has his mind made up, forget it. Now it is a matter of proving to him that it will work, and slowly he will rationalize for himself that in order to walk, he will need a straight leg, and to help get a straight leg, he has to wear his brace. Today was the first step into that pathway of logical reasoning. It was a memorable moment, and if I had my camera upstairs, I would have snapped a picture. It was that noteworthy! I can't wait to tell Anna on Monday.

Mattie was very excited that today was going to be a "boys" day. Mattie and Peter spent the whole day together, without me in the picture. Just like they would have done in the past, prior to Mattie getting sick, Peter and Mattie ran weekend chores. They went to Target and grocery shopping to name a few stops. Since I was cooking tonight, I sent Peter out to buy some things that I knew they both would want to eat if I had the energy to cook in the evening. They had a fun day of playing, building, goofing around, and even eating. I am so happy they can have these times together and even though I know Peter is tired, I have come to accept these breaks and not feel guilty for leaving.

This afternoon, I met up with Ann and visited with her parents. As many of you know, Ann's dad is temporarily in a rehabilitation facility trying to get his strength back from a recent hospital admission. Ann brought her mom over from a different assisted care facility to visit with her dad, and I am sure to some extent being separated from each other for this period of time is difficult since they have come to rely on each other for over 50 years. It is funny, I just met Mary and Sully (Ann's parents) this year, yet to some extent it seems like we have known each other for a much longer period of time. Perhaps it is because we are bound by cancer, since they lost their son to cancer two years ago, or the fact that we all have great respect for Ann. I am not sure, but visiting them on the weekend, makes me happy. It makes me happy for various reasons. First of which is I know the loneliness they experience and deeply feel as they live in an institutional setting. Having lived in a PICU for 11 months on and off, I feel this has opened my eyes to the feelings of isolation experienced by older adults who spend the majority of their days in hospitals, assisted living, and nursing facilities. The issues of older adults is not something new to me, this is my area of research and clinical interest, however, no amount of reading on the subject matter, or listening and counseling clients, could ever replace the insights I personally lived through this year. If I can spend a few hours with Mary and Sully, talking with them, hearing stories about old times, stimulate them cognitively, and make them feel connected to the outside world, then I consider this time well spent. I find it absolutely heart breaking that in our Country the older adult population for the most part is isolated and in many cases forgotten by the rest of society, as if we have to put this population into facilities, because seeing them, hearing about their pains and ailments, and interacting with them is too horrific for us. I can't help but say to myself, but there but for the grace of God go I. So I try to imagine how I would wish to be treated when I, God willing, get into my 80s and 90s.

I learned to be the kind of caregiver that I am from watching my mom care intensely for three years for my grandmother, who was a stroke survivor. I witnessed the profound effect that caregiving can have on a loved one, so much so that when I entered graduate school, I knew that caregiving was going to be my area of clinical specialty. My mom's experience with caregiving has given her great insights, which you can see she expresses well when she writes about the toll that Mattie's care is having on me. But for the first time today, and I have no idea why, I had a revelation. I have been visiting and supporting Mary and Sully, and yet not really acknowledging the amazing work Ann is doing for them each and every day. Caregiving means much more than an occasional visit, bringing a meal, providing flowers and clean laundry. Caregiving is a selfless job, and most likely if you talk with caregivers, they won't even acknowledge their intense roles. It is just a part of who they are, which is providing constant support, serving as a liaison with the medical community, being a full time cook, managing medications, finances, and living arrangements, but most profoundly it means seeing your loved one disengage from society, become more disabled, and in essence losing a piece of the person you know and love on a daily basis. Sometimes I wonder what is harder to deal with, losing an older adult immediately from a massive stroke or heart attack for example, or seeing them slowly and painfully suffer from the devastation of an illness or disease? Neither is easy, but having lived through watching someone I love suffer, it is a very hard picture to remove from your mind's eye. It stays with you forever, and at times it erases the happy times and memories, because it leaves you with a level of sadness that is indescribable. So I guess tonight I pause and thank God for all the family caregivers out there, who do their jobs quietly, diligently, and lovingly. I have no doubt God holds a special place in his heart for us. For without family caregivers our older adult population with illnesses would be at the mercy of a health care system and nursing facilities who neither have the time, patience, compassion, or commitment to stop and listen to the concerns and desires of their patients much less the family members caring for them.

While I was visiting Ann's parents, Peter kept sending me text messages. But this was very sweet because he was relaying messages to me from Mattie. Apparently Mattie missed me today, not in a way that I had to come home, but in a way that showed he appreciated me. It was very touching. When I arrived home, I got a big greeting (absence does make the heart grow fonder), and then I started putting dinner together. Another first, after I cooked dinner, Mattie wanted to join us outside on the deck to eat. I was excited at the notion that he was actually going to eat, and he led us in grace, but then after eating a few bits, he began to have his usual intense stomach pain. Despite the pain, he stayed with us at the table, and talked to us about his day. So in my assessment, though not a good eating meal, it was a moment for all of us to be together.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Vicki, I was so delighted to see that you got out on Saturday with Peter, even if most of the time was taken up running errands. I think it is good for Mattie to have some time away from the two of you when you can manage it and Mattie's emotional state will allow it. Trolls and "bug baking" must have made for an interesting morning. It is great that you all got to go out to the movie at the museum and that everyone, including Mattie had a good time. I hope to see more of those notes in the blog in the future. I understand what you are saying about trying to absorb everything around you, trying to gain as much as you can from every moment. It is an odd thing about us humans, we go through life quite unaware of much of what is going on around us until things are not going well and then we become very mindful of each moment. I am as always sorry that you and your family are going through this but grateful for the reminder to appreciate every one I care about and all the "gifts" I've been given. I hope this coming week brings some good advances for Mattie both physically and socially."