“By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going.” –Hebrews 11:8
Mondays remind me of Groundhog’s Day. Sigh… the wonderful Bill Murray movie, not the actual day in February. In the movie, Bill Murray’s character Phil Conners is forced to relive Groundhog’s Day over and over perhaps until he learns his lesson. Mondays, too, seem to come around over and over and over and over… How do we redeem these days as caregivers?… or do they even need redemption? Maybe Bill Murray’s dialogue wordsmithing and/or some scene descriptions from this classic will point at a few things that can help us a little with Mondays and dementia caregiving to boot?:
- Phil : “What would you do if you were stuck in one place and every day was exactly the same, and nothing that you did mattered? Ralph (Phil’s drinking buddy) : That about sums it up for me.”————There are times that caregiving feels like this, but know that it may just be the sleep depravation talking. We simply don’t know what can be understood and what cannot be…so we should act as though there is a chance…and do our very best. Will there be days that feel like nothing you did mattered? Yup. But there will be days that did not feel that way too. If you need a break…and I feel confident you do…make a plan for a regular break. There are people that can help. If you do not have local friends and/or family that can schedule a regular respite time to help you fight burn out, start by contacting two places: The Alzheimer’s Association (1-800-272-3900, or Google Alheimer’s Assocation local office) and you local Area Agency on Aging (Search link here). Breaking up the monotony and the rut that you will find yourself into will help you be an even better caregiver. Take advantage of options and opportunities.
- Phil : “[talking to a sleeping Rita, his love interest in the film] “I think you’re the kindest, sweetest, prettiest person I’ve ever met in my life. I’ve never seen anyone that’s nicer to people than you are. The first time I saw you… something happened to me. I never told you but… I knew that I wanted to hold you as hard as I could. I don’t deserve someone like you. But if I ever could, I swear I would love you for the rest of my life. Rita : Did you say something? Phil : Good night.”———— There are so many things in life that we either never say or leave unsaid until the wrong time. One of the many advantages of early detection of dementia is being able to get prompted to tell your friends and family how you feel. Do you need to know early to do such? No…we can always do it. However, it may just be the prompting you and I need. Incidentially, that is why I am participating in a few clinical trials/studies from Trail Match. This, planning, and the necessity to know early if you want to take new dementia drugs are all three very compelling reasons to find out ASAP. Talk to your doctor if in doubt.
- Ned : “Phil? Phil : Ned?[Punches Ned in the face]” ———–Just a head’s up…some loved ones that are typically meek and sweet turn into punchers. Remember the (almost cliche) wisdom…”It is the disease…not the person!” I have seen the sweet turn sour, the sour turn sweet, the church mouse turn into a druken sailor and likewise. Remember the good of the old person and search for the remaining good…and give dumpsters of grace in between. It will be hard sometimes…but remember the great grace you have been extended as well.
- Phil : “This is one time where television really fails to capture the true excitement of a large squirrel predicting the weather.”———- Unless you have experienced the challenges of dementia, it is very hard to get your mind wrapped around. So much is either not as it appears or is simply wrong as you research and prepare. Tips: Visit patients. Help. Learn. Study. Grow. Pray. This is a marathon, not a sprint. Get involved in a support group not unlike the one I facilitate (or join my Zoom one…or in-person one if you are local). Others who are farther up the squirrel tree can help you tell critters apart….and can help a whole not.
- Rita : “Do you ever have déjà vu? Phil : Didn’t you just ask me that?”———One of the less-mentioned commonalities of dementia warning signs is repeating the same thing. Mom would seemingly save up many, many things she wanted to tell me…and then tell me three times. This is such a tragic aspect of the disease. PLEASE—fight the urge to tell them “you have already told me that”. It won’t help them remember to not repeat themselves…and it will make them sad/more anxious/hurt. Just put on your game face like a ruined suprise party guest of honor….and know that it was important each time…and love on them.
- Phil : “When Chekhov saw the long winter, he saw a winter bleak and dark and bereft of hope. Yet we know that winter is just another step in the cycle of life. But standing here among the people of Punxsutawney and basking in the warmth of their hearths and hearts, I couldn’t imagine a better fate than a long and lustrous winter.”——– There are few things more rewarding than caregiving. It may very well seem the opposite at the time, but trust me. Life ends. This disease, minus a cure that I yern for soon or something else beating it to the punch, will take 100% of the folks it strikes…but it will take time. Don’t lose hope. Keep fighting for a cure. Keep loving your loved one and do your best. Eat the meat and spit out the bones of the events that happen in this marathon. Is there a cycle of life? It seems like it… However, look longingly to the life in heaven that lies ahead and know that there will be no sadness or death there for all who believe.
- Phil : “You want a prediction about the weather, you’re asking the wrong Phil. I’ll give you a winter prediction: It’s gonna be cold, it’s gonna be grey, and it’s gonna last you for the rest of your life.”——-Bonus tip: Find positive people and positive media and other positive outlets and soak in them like Madge soaks your hand in dish soap. There is so much negativity in the world, you need positivity to try to tilt the mental health scale in the right direction. Oh…and if you can, be that for others too. Easier said than done? Probably…but your environment sure makes the mental exercise easier (or harder).
- Rita : “This day was perfect. You couldn’t have planned a day like this. Phil : Well, you can. It just takes an awful lot of work.”——Planning the perfect day with your loved one is hard and may go awry. Remember that many with dementia thrive on routine/sameness…so maybe keep the perfect day within as many of the parameters of the familiar that you can. Follow the routine…but break out a CD player and play some of his/her favorites. Follow the routine…but add some nice smells? Small things to brighten the routine may very well work out much better than a trip to his/her favorite destination if a trip would cause too much angst. Keep it simple. 🙂
- Phil : “I have been stabbed, shot, poisoned, frozen, hung, electrocuted, and burned. Rita : Oh, really? Phil : …and every morning I wake up without a scratch on me, not a dent in the fender… I am an immortal.”—–
- Phil : “Why are you here? Rita : You said stay so I stayed. Phil : I can’t even make a collie stay.”—-“Why?” is the beginning if many a fruitful/fruitless thought storm. Do we know why dementia happened? Unlikely. However, we can be in charge of making the most of it however we can and loving our loved ones through the trial. That is why I write too…to try to help you…and me…find the silver lining here. I hate dementia. Many, many folks who were (and are) wonderful and good folks get this disease. Researchers aren’t even 100% why it developed…we will likely never understand as much.
- Mrs. Lancaster (Owner of the B&B in which Phil stayed) : “[on the first day] Will you be checking out today, Mr. Connors? Phil : [snidely] Chance of departure today: one hundred percent!”–Dementia is the only natural cause of death in the top ten causes with no cure nor life-extending drugs. There are several drugs in the pipeline hoping to change this…We shall see. Until then, the mortality rate is the same.
- Rita : “You’re missin’ all the fun! These people are great! Some of them have been partyin’ all night long! They sing songs ’till they get too cold and then they go sit by the fire and they get warm, and then they come back and sing some more! Phil : Yeah, they’re hicks, Rita!”–I sure miss the days of mom playing the piano for the Sweet 17. Here are some links: Link Link Link Link Isn’t it funny how perspective changes? Phil changed in the movie…and we can too. Live in the moment. Love imperfec tion as perfectly as we can. It is worth the effort. What I would give for some more piano time with mom.
Gus (local resident and friend) : “You know, some guys would look at this glass and say – “You know, that glass is half empty; Other guys would say the glass is half full.” – I take you as a glass half empty kind of guy, am I right? Phil : What would you do, If you were stuck in one place, and every day was exactly the same, and nothing you could say, and nothing you could do, mattered?”- I am naturally a half-empty kind of guy too…but I am getting better. You can too. Don’t give up, friend. The cup is actually FULL…it just looks different in some parts than others. Fair enough? Keep your head up. You are not alone. We will get through this stuff together.
Well…the Mondays keep on coming. Not much we can do to rework the calendar, so we might as well learn to like them as best we can, eh? Off we go….see you again soon.
Update- No real update. Mom is still about the same. We have her next booster for Covid scheduled for December. We had to weigh whether it was a life-extending measure and therefore not allowed under her DNR order, but we decided it would be hard to keep her from pain with Covid. I hope and pray for a cure and for peace for mom, the Sweet 17, and for your loved one too. I can’t remember how much I told you, but I was able to see my uncle (mom’s older brother) last week too… He has end-stage cancer and mid-stage dementia. He is a wonderful man that I would love to share more about. Few people can light up a Wal-Mart like my uncle when he would shout across the building “There is my nephew Mark!” What a guy! I wish I could help him better too…
Last note: This movie is very funny and profound all at once. I love it and I hope my correlation does nothing to hinder you from watching this gem. 🙂 One of my very favs…