Posted 4-15-19
Happy Tax Day, all. I hope you caught my “sweet” tax day early post from a couple days ago. If not, here it is: Link.
I was involved (personally) in team sports the first 18 years of life in one way or another. I was probably brought in utero to sporting events that mom participated in until her third trimester. Suffice it to say that I am experienced in this realm. I have played baseball, basketball, football (one season until I got a brutal mouthpiece penalty that made me sad so I quit after the season), bowling, best ball golf, badminton, Tournament of Knowledge and a dozen other sports. While I have also played my share of individual sports (regular golf, tennis, etc…), my preferences is to gather up a ragtag team to defeat the foe.
In the mid-1980’s one of the crowning life achievements of my Al Bundy-esque sporting career came at the bowling lanes. My team was pathetic. We were a bunch of bowling noobs. Our averages were about the average daily temperature in February in the Ozarks… The opponent: My older Brother Steve’s much more polished team. They didn’t even drop the ball as we carried them like we did!!!…and probably averaged a good 60 points better than my little less-than-turkeys. There is an equalizer in bowling, though, called the handicap. If you are unaware, the handicap was designed to level the playing field a little by figuring both team average scores in a three- or four-game series then giving the lesser team enough bonus pins to make them both start at approximately the same level. This way whomever has a better day compared to their average wins. That way teams like ours who could just as likely miss the lane completely at least have a chance.
Providentially, in my personal “championship” series, we played my brother’s team. You need to know that I idolized my brother. (Still do in many ways). He was a karate ninja. He was popular. He was/is brilliant (although academically a tad lazy in later school years of our youth). He later drove a nice car. Then there was me. I was a frumpy, hyperactive, average-if-generously-scored intelligence kid. But the handicap leveled this playing field/lane for one battle royale/ steel cage match. Our little group of dweebs had the games of our lives (!!…probably shot in the 60’s or 70’s on a 40 average!!!) and beat my brother’s team handily and won the trophy… I won bragging rights for a day in my house.
Today I want to briefly talk about the importance of teamwork in caring for a loved one. It completely requires a team to care for a loved one with dementia. The ragtag members of this team:
Family– The more family you can involve directly or indirectly, the better. Some can directly help. Me and my sis are in life situations right now that allow time, so we visit pretty much daily. My brother visits every time he comes to Missouri and he prays for mom and for us, a key to mom (and us) making it through the day-to-day grind. (Note: Please don’t alienate nor get bitter if you have family who can’t or won’t visit as often as you prefer. Some simply cannot do it emotionally and others are not in the life situation that allows it. Instead of being a divided team, find ways that they can be involved where they are. There are always people to call, things to buy, ideas to bounce around, advise to be had/Googled for. Ease them into the situation…don’t get mad or bitter. Your loved one wouldn’t want that division caused my their plight to be a second tragedy.)
Medical team– Expect to meet regularly with your loved one’s medical team. If they must be in a nursing facility, find out schedules and contact info for the primary nursing staff, the lead nurse, the center administrator and the social worker. This team should know you quickly and see you often. Never assume one of these folks know the same info as the rest. Information, partially do to the huge workloads, partially due to HIPAA confusion, partially due to technology limitations and, frankly, partially due to the lack of a squeaky wheel, tends to pool up and silo and not get spread. Meet on a regular basis and in emergency meetings as needed.
On-site nurses/staff– Get to know and love the staff/nurses who care for your loved one, whether at your home in respite/home health situations or in the memory unit. Tell them what your loved one likes and doesn’t. Share with them your loved one’s history. Are they afraid of swimming like my mom? You bet your rear you tell them that to make shower time easier! Do they like their coffee a certain way? What is that strange face they are making? You know your loved one much better than they do. They need you to provide an informal user’s manual, for a lack of a better term. And, be aware…this will be constant because the staff will change a lot. 🙁
Medical-techs– The ladies or gentlemen that hold the meds closely will also be a critical part of your team. Does your loved one have trouble swallowing? Do they fight meds? Tell the med tech and they will get a plan. (Maybe, like mom, they will grind up the meds and put them in yogurt to hide them)
Church/support groups– You need respite help whether you think you do or not. Friends at church or in your circle of support can visit and advocate for you when you cannot. This lessens guilt, fatigue and stress. Church friends cal also pray with/for you and share passages that will sooth your soul. Support groups are another cog in this wheel. They give you an opportunity to vent, bounce ideas around and share.
Activities folks– Memory units often have activities directors/employees who are charged with providing meaningful activities to stimulate the minds and bodies of the patients. Work with these wonderful people to tailor a plan for your loved one. Music therapy is a great option that you can assist with. Help the leader find meaningful songs from your loved one’s 18-25 year old musical taste. These seem to be the most effectivein helping brighten spirits and enhance memory.
Bloggers and social media– Visit blogs and social media posts, in moderate amounts. Share your story and listen to others. You will soon see that you are not alone and you will gain some valuable tools to bring to the table. Dividing sorry and multiplying joy can really help you.
Service organizations– SeniorAge (or your local Area Agency on Aging) and the Alzheimer’s Association can help you keep your loved one stay at home as long as possible, can help understand placement in a facility if necessary, and can support you in many other ways. You truly need these two organizations…visit them early and often! Support them when you can too…please. 🙂 Speaking of SeniorAge, your local senior center can help in a host of ways too. Contact or visit one today.
Advocates– You need other advocates too. As mentioned before, garner the support of your social worker. Get advice from Ombudsmen.
Politicians– Get to know your legislature. They constantly vote on bills that can directly help you and your team. Missouri legislatures, right now (today or tomorrow!!!) will be voting on a bill the Senior Services Growth and Development (Links: Senate Bill 86/House Bill 337). Please research these bills, call SeniorAge at 417-862-0762 or your local senior center in Missouri to find out more details, then lovingly call your legislator and ask for his/her vote.
Others– If it takes a village to raise a child, it takes a metropolitan city to help a lived one with dementia/Alzheimer’s. You need help. Don’t go at it alone. Find your tribe and get to work. They are worth every second. 🙂
Note: Mom was pretty decent yesterday. Generally happy if tired. She has been having bra issues. Alzheimer’s patients tend to be fidgeters, especially in later term. Mom finds the strap on the corner of her shoulder (or a shirt button, or a sock or a shoestring, or a….) and messes with it, pulling it and moving it around. My sis is changing up her wardrobe in that area and we are redoubling our attempt to keep a fidget blanket or cuff available for her to mess with to keep her mind settled down and focused. These, toys and similar help more than you know. Thank you again to the senior centers that made those for me! 🙂
Last thought…a rehashing of my main points: Don’t go it alone. It is too hard for anyone and many can do better than one. And who knows…you may be called on later to join someone else’s tribe of support too. (oh, and have I mentioned it was nice to kick my brother’s bowling team’s butt nearly 40 years ago?? Yes. It was very nice. 🙂 For one day I was the cool one. )
#EndALZ
