Hi all! Happy Thursday!
A couple weeks ago I got another rare opportunity (these days): I went fishing, this time with my daughter. She is an art major in college and I thought it would be a fun bonding time for us to find a fishin’ hole so I could fish and she could draw/paint/artist thing X the landscapes and environment there. It proved to be a very fun time, although the fishing was kind of rough.
Here are a few images of my fishing trips the last couple weeks that will help support what I will be talking about today:
In the spirit of finally fishing a couple times this summer, I offer you:
10+ Things You Can Learn About Dementia from Fishing (plus a bonus and a bonus bonus)
- Some days you win and some days you lose. Victory is found in the experience, not the “success”. Me and Lindsey fished in a 93 degree frying pan for about 2 hours. During that time I went through 18 nightcrawlers (chubby worms for the less fishing inclined). The only fish my “hole” apparently had available were too small to swallow my hook, but big enough to drag around my worm until relieving me of it. Nevertheless, it was still very fun!! Similarly, if you have had a rough day with a loved one, don’t fret. Tomorrow will be a new day. Play some period music. Sing a song or two with him/her. Bake a pie and share it, if that “brings back old memories”. Break out some old pictures and share them, not asking questions, but just “Hey, isn’t this cool? This is when you…..” Communicate however you do. 🙂 All you can do is do your best.
- Some days there will be rapids and other days it will be calm. Dementia is a crazy float trip ranging from floating your rubber ducky in your tub speed to floating the rapids of the Grand Canyon speed. Mom and the Sweet 17 were exceedingly challenging from October until about 2 months ago when mom got “bad enough” to be easier for staff/me to help. Things could still escalate…no doubt about that…but mom, unfortunately, is weakened enough by the late stage of this disease that I expect the next “rapid” to be her end of life season, unless we can find a cure soon. If you haven’t experienced this hot mess yet, please remember this. Ups and Downs. Bites and snags. Joy and pain.Expect it all…
- Enjoy the small victories too! I would have been satisfied with just enjoying the sounds and the battle involved with fishing, but I did catch one wee little Bluegill (Exhibit C above). I could dwell on the fact that this poor creature was bait-sized. I could lament the fact that he probably single-handedly stole $3.75 worth of worms. Instead I took a picture, enjoyed looking him over, then turned him loose to ravage someone else’s bait stash. He might as well have been a state record. Similarly, soak up the sweet words you may get sometimes. Did the bath goes well today? Celebrate! Look for joy among the tears and embrace it! Even the little stuff. It will help fill your emotional minnow bucket for later.
- Fishing, like dementia, is “all about perspective”. Exhibit D above is the monster I caught the first trip a few weeks ago. I held the camera really close to change the perspective. This little bass was really about 6″ long, but he looked massive. 🙂 Perspective, or point of view, makes this disease challenging the first time through. We didn’t notice mom had gotten worse and worse because our point of view, our perspective, was shaped by mostly talking to mom on the phone and short visits. She would repeat the same things and mix up stories, but it really didn’t sink in that it was much more until later. It is easier to just think of memory loss as being something we all experience as we age and just move on. I mean, heck, I forget where I park at Wal-Mart 2/3 of the times I go (although that MAY be caused by the duration….typically 6-12 hour…of our shopping trips at the big, blue shopping haven). Stay involved. Ask questions. Don’t let stigma or fear of the reality of the disease change your action.
- Teeth matter. Stinkin’ Bluegill are like little worm Piranha! They ravage the bait before you know what hit you. Teeth seems like a small topic in dementia, but it is huge, especially in late-stage time like mom is experiencing now. We need to be sure to take care of oral hygiene for a several reasons. Probably most importantly, in late-stage especially, is bad oral health hinders swallowing. Poor swallowing kills patients through choking on food and through aspiration pneumonia. Bad oral health can also lead to infection, toothaches (sadly, unreported oftentimes), mucus, sore gums, and damaged teeth. Here are some tips for helping keep his/her teeth clean. Mom, like many, has dentures. They must also be cleaned regularly and soaked often to keep them safe to wear. We have had mixed results in this area, but we are stepping up our efforts. Here are a couple more good links on this topic: Link Link
- Relax!!! Exhibit E above is me propping my feet up to fish. This reminds me of a critical need of caregivers: get respite help and take care of yourself! Contact the Alzheimer’s Association and/or the local Area Agency on Aging. They sometimes have the availability to have someone come to your home and give you a break. Fish, shop, take a bath, work in the garden, something. If it makes you feel guilty, think of it like this: If you don’t take care of you, you will get sick and become less helpful as a caregiver. It is really hard on caregivers physically, mentally, socially, and everything else-ally. Please take time to take care of yourself for your good and for your loved one’s good. 🙂
- When they ain’t biting, try something else. This is huge. If your loved one is having trouble taking meds, try crushing it and putting it in yogurt , pudding, or some other desirable food. Look back a few hundred entries ago…we had a terrible time with this. Keep trying! The same applies with finding foods that they will eat and drinks they will drink. Their tastes may change with time and with the ability to chew and/or smell. Talk to your medical team too. There are specialized therapists that can sometimes help with chewing/swallowing issues. Don’t give up!
- Sometimes there are big fish in the eddy! Always be watching. An eddy is a break between or next to faster moving water in a creek or river and may be small enough to be missed but can make for a super good fishin’ hole! Sometimes eddies have swirls that look like little whirlpools too and are really interesting. As mentioned before, there are slower waters and there are rapids in the journey you are on. Sometimes the hard times wear us out enough we could miss the swirls of joy that come quickly like little whirlpools, then vanish. Mom, in the midst of some really challenging times, has smiled or said something that I could cling to since I noticed it. Who knows how many I missed? It is so easy to focus on the hard and miss the joy. Here are a couple of my favorites:
9. Distractions are terrible in fishing, but great with dementia caregiving. On my last fishing trip, that I documented on Facebook, I was joined an hour in by a vegan who didn’t like what I was doing and played fetch in the water with his dog the whole time…thus distracting/scaring away my fish. In caring for a loved one, especially in early- and mid-stages, you need to learn the art of distraction. When they ask a question that you cannot answer without hurting them (How is my mom doing? Note: she passed away a generation ago), change the subject. When she wanted to come home, we had a good answer that she was still being checked out to be sure she was OK. I would love to make this easy emotionally, but I cannot. However, it gets easier and easier the more you do it and makes things easier for your loved one too. You will get better at bobbing and weaving and misdirecting.
10. There is strength in numbers! In the 1980s I used to fish in James River (in the Ozarks) quite a bit. We set limb-lines and fished with several people and many rods at once. We would catch over a hundred significant catfish per trip. It took planning, a variety of skill sets (one boat guy, another who set limb-lines, another who seined minnows from the river, etc…), and manpower, but we all went home with a cooler-full. The same can be said about caring for someone with this disease. Build a team!! You would benefit from a solid doctor, a neurologist, a psychiatrist, a social worker (if in a nursing home), hospice as soon as you can deploy them (and keeping in mind that they do much more than merely assist at the very end of life), an Area Agency on Aging staff member, an Alzheimer’s Association worker, respite helpers, support group friends, volunteers, family, church family, and others I am forgetting. It takes a team to fill up your caregiving cooler and you should never be ashamed to lean on them. If I tried to set a limb line on the James or if I tried to help mom with her bath (heaven forbid!), I would have failed at the task and just ended up wet. Experts help. Those who have traveled this journey are invaluable! Build a team and attack this disease with all you have.
Oh…yes, a promised bonus: Sigh. The weather and the moon, for some reason or another, dramatically effects caregiving and fishing. Fishing I guess I understand. Rain, pressure changes, etc…change the environment and spook the fish…or entice them to eat like crazy! (Hence, some of my best fishing times were just before or during a storm). In caregiving, a couple things come into play. Anything that causes deviation from routine and schedule changes how patients react. They sense anxiety and tension that weather can influence. This Friday is a full moon (Harvest moon). I have zero clue why, but the Sweet 17 always had challenges in a full moon and most nurses, especially those in an ER setting, will agree that it does something.
Oh, and a bonus, bonus. 😉 Color matters in fishing and caregiving. I live near the Bass Pro Shop headquarters, the mecca of fishing, hunting and outdoor things. They have every color of fishing lure in the spectrum because it matters. Dementia patients also notice and process colors. Mom and the Sweet 17 would all make comments (mostly positive) about one nurse’s pink hair. They loved colorful nursing clothing and gear and enjoy brightly adorned stuffed animals and fidget blankets. It must signify something special to these Damsels in Distress and Prince Charmings in peril. Whatever it is, be colorful…they often love it.
Don’t give up, friends! I know this is hard…I am living in it these days too. Keep your head up, your fishing line tight and expect better fishing ahead, if not now, for an eternity in heaven.
Update: Mom had another good day yesterday according to my stepdad. She is still lethargic and struggling, but all things considered, things are going swimmingly. I will see her tonight again. 🙂