As we near the three year mark of the official diagnosis of Art’s Lewy Body Dementia, I am conflicted by a desire to share with  you, our dear friends and family, what helps us, but also what hurts us in our daily struggle with Art’s devastating illness. It is my sincere hope that no one will take this personally, that I am not chastising or trying to cause offense, but rather, allowing you a glimpse into our lives and how we are affected by actions, or inactions on the part of well-meaning individuals. Many of you have asked how you can help-after much reflection, this is what I have concluded on that precise matter.

Helpful:

  • Do call us, send a note-email, text, or card. We feel your love, and know we are thought of and not forgotten. It is easy to get wrapped up in our busy, daily lives, but a simple note of encouragement is a great morale booster to both Art and I, and often touches us deeply to the point of tears (a good thing).
  • Are you a friend who spent time with Art, me, or both (as a couple) in the past? If you are, continue doing this…spend time with us-together, or individually. Yes, I recognize that the big guy thinks a great idea for a visit is to sit downstairs in his veritable man-cave, smoke cigars, watch old movies (spaghetti westerns and John Wayne), drink Pepsi and Mountain Dew.  On Art’s good days he enjoys a meal out-breakfast, lunch, or dinner will do!! If you plan a visit with us both, we will be upstairs in the smoke-free environment, I promise! One other note on visits-make them short (an hour), as he tires easily and may fall asleep (while we are all sitting) at the table, or he may become prickly and unpleasant to be around, also a side effect of his exhaustion. (Note: LBD sufferers have been known to throw the F-bomb around without a care, especially disturbing if they were not likely to do so prior to their diagnosis, which is the case with Art.  But take heart, he mostly tosses them in the direction of the doctors and nurses who are treating him. That being said, all bets are off, with no guarantees…)
  • Offer assistance when you are out with Art-carry his coffee, take his arm, get him a straw (even for coffee), pull out his chair, be watchful of his difficulty with steps and his lack of balance when walking, as these are often what cause him to fall. I am not saying you can always prevent a fall, just keep a close proximity to him, and be there to help if you can. A gentle assist with his arm is often comforting, and quite simply-a safeguard.
  • Don’t get offended or take it personally if he is not up for a visit-he hates to see friends when he is struggling with his LBD. There are days when he is able to be more social than others, unfortunately, we can’t predict when this will occur.

Hurtful:

  • Please do not exclude us from your invite because you assume we would not be able to make it. Maybe we won’t make it, but we would love and appreciate the opportunity to try!! Also, I may be able to enjoy a night out, while getting someone to stay with Art. It is more painful to realize we have been purposely excluded from an event invite due Art’s LBD (yes, it has happened). Do we embarrass you? It’s possible, but there is nothing I can do about that. As a caregiver 24/7 for my beloved, it is crucial for me to enjoy time away from my stressful life-a little fun goes a long way at making my life more bearable, as I achingly watch my husband decline and slip away a little more each day.
  • Although Art may seem cognitively “with it” on any given day, do not forget that simple, every day, mundane tasks have left his capabilities lacking. Do not chastise him for not knowing how to answer his phone, send a text, get his messages, send an email, run the DVD player, use the remotes…you get my drift here? What we all take for granted, he has lost on most days. He will remember that off-handed comment, the slight, the unpleasant, condescending tone that was aimed at him. You never know what he will recall, and he seems to feel the verbal shortness of others longer-his brain hangs onto these offenses and obsesses over them. So please, be patient and kind, he cannot help what he has lost, even though to you, all of these daily tasks are easily accomplished without a single thought.
  • Here is a tough one not to cause hurt feelings, but it must be said, for my own piece of mind and sanity. I ask that you read this and try to see my side of this scenario: please do not call and offer to go to the store for me-it may sound silly and ungrateful, but it actually makes me feel terrifyingly closed in, overwhelmed and trapped! For a caregiver, this is one of the worst feelings EVER!! I feel as though I am being banished to this house, which creates in me my own sense of anxiety, panic, and suffocation. Please don’t even bother to call and offer-I know your intent is pure and loving, but it leaves me feeling like I am drowning and can’t reach the surface. It is the one thing I can’t handle-so please, don’t do that to me!!! Getting my groceries is not a problem. I can run out (my short escape) and get milk. I need that release-I enjoy my liberating jaunts out alone-don’t deny me that! I draw immense pleasure from these commonplace missions. Instead, send me a note, plan a visit, pray for me/us. Give me hug when you see me-and Art. If you think offering to do errands for me is all you can do, you are wrong. Please don’t be aggrieved. Instead, reread the things above to honestly help-they are not difficult, and are just as much a gift of love.

As always, blessings to you all!