2021 LBD Summit Recorded Content & More!

He has been through the sleep assessments at Mayo. No sleep apnea, so no CPAP machine is necessary. He does take a Melatonin to help with his disorder. The difficult part is that when he dreams it is usually violent episodes and he tries to defend himself. At first, I would try to wake him, but he would then think I was the attacker. Without being able to wake him, I would receive the brunt of his "protecting himself." His neurologist at Mayo told me to not try to wake him, but to remove myself so that I would not be hurt. Sometimes, he hurts himself by hitting the headboard, or thrusting himself out of the bed. Though it isn't what we wanted, I can no longer sleep with him. I must protect myself so that I can continue to care for him. (Doctor's suggestion).

Hello @hbjuniperflat & @hopeful33250 - Thanks for inviting me to this conversation on LBD- I enjoyed the recent LBD Summit - and learned a lot of tips - one was to try different Melatonin supplements to see which one works best. I was ordering one on Amazon - and found a time-release one - and thought why not? and WOW! that has keep my father asleep for 6+ hours most nights. My parents do sleep in separate bedrooms now- so my mother can get some good rest each night- because my father was "active" in the night and would lash out. (his room is smaller and has only the minimum of furniture - and far away from the bed).

I also agree with the "don't wake 'em" and I am the queen of "agree & re-direct" with some of his stranger comments/ visualizations. I have a few "regular" subjects to discuss with him in those situations - the birds at the feeders, fishing & camping, and family vacations.

Joining online caregiving groups has also helped us to learn more about Alz and LBD and other peoples experiences - I am attending via zoom my local Alz group as well as a LBD group.

Other thoughts - Consider moving before you need to -This was the best decision my parents made at the beginning of 2020.

My parents moved to a retirement community in March 2020 - and even thought it was a lot of hard work and super disruptive for my father - my mother (and I) have enjoyed a lot of peace / relief that she is not "alone" at night with my father in their house - she can call on people if she needs help with anything etc ... She was super worried about him falling down the stairs at their home - how would she cope etc ... what would happen to him if she fell, got sick, had an accident, lost power in a storm etc ...

One of the social workers at our local hospital system recommended we look for places (assisted living / memory care / independent living) - before we "needed" a place for my parents to go - so that we did not have to make a decision in an rush due to an "emergency" situation. That turned out to be the best advise ever! My parents found a lovely apartment in a community they can "grow" into (as their care needs change).

My father gets turned around a lot in the new place - and has trouble remembering his bedroom is to the left not the right - but hey - he was doing that at their house too. It was hard for both of them to make a lot of decisions at once with all their stuff - so we have a storage unit - so we can re-visit at a later time - that brought my father a lot of peace that we were not tossing out all his camping stuff (in case he wanted to go again) but rather storing it for a future trip.

Hope this crazy morning ramble is helpful - sending you lots of positive vibes! Kristin

I'm so glad that you are taking care of yourself and keeping safe, @hbjuniperflat, that is important for all caregivers. I would encourage you to join one of Connect's caregivers' discussion groups. Here is the link to those discussions, https://connect.mayoclinic.org/group/caregivers-dementia/. If you look at the list of discussions you will that there are several groups who are discussing Lewy Body Dementia.

Where do you feel you need the most support right now?

Great ideas, @kristin816. I'm sure that @hbjuniperflat will appreciate all of your ideas. I really like how you proactively pursued the changes that you needed to make before a crisis came about!

Hello Everyone, I encountered a new problem with my husband during our Thanksgiving travel. His two strokes that occurred prior to his Parkinsonism/LBD diagnosis had an impact on his vision. The doctors identified "left side neglect" as one of his vision issues. With his LBD, he has hallucinations at times. I am never sure exactly what he is seeing. So, as we traveled home after Thanksgiving, I found myself driving through a heavy rainstorm on a very dark night. We were on a freeway that had "patches" of construction where the lane marking lines were hard to see. I was doing the best I could, and was staying in my lane, but my husband kept giving me directions to "help" me. His directions were not helpful, and in fact they were quite confusing. I tried to ignore him, while attempting to keep him calm. I reassured him the best that I could, while paying strict attention in the difficult driving conditions. I even tried to give him a "job" such as reading the road signs to me.

All of a sudden, it felt like my steering wheel was hung up on something. I couldn't easily turn the wheel to make the minor adjustments I needed to make as the puddles of water pulled at the car. Fortunately, I realized rather quickly that there was nothing wrong with our vehicle, but rather my sweet husband had decided to grab the steering wheel and turn it the way HE thought I should go. This was a new challenge to deal with. I got him to let go, but honestly, I was scared and a bit mad! I understand how frightened he must have felt to feel he had to help me steer the car. However, he has no ability to reason anymore and he doesn't understand how his action could have caused us to have an accident.

Some in his family have suggested that now he can only ride in the backseat like a child. However, I know he would be very unhappy if I insisted he ride there. I respect and love my husband, and I try to react to situations in a way that maintains his dignity. I am going to diligently try to avoid night driving, as that seems to be the most disturbing time for him... and me. Any suggestions as to other remedies for this situation? Surely, I am not the only one who has experienced this kind of behavior. Thank you.

There maybe times when avoiding night driving is not possible. Throughout our entire marriage, he has always done most of the driving, so it has been hard for him to hand over control to me, which he is doing more and more. We had one situation when it was dark, rainy, and we were on an unfamiliar interstate that was under construction when my husband yelled at me because he thought he saw something that wasn't there. He has not had many hallucinations, so I don't know if that was what happened, but at that moment it was all I could think of. I have decided that night driving will be kept to a minimum when possible. If we have to travel at night, it will only be in good weather conditions. We can get off the road and get a hotel, sit in a Walmart parking lot till the weather passes, go in a Cracker Barrel and enjoy a warm meal and calm down, etc. When I am driving, he seems more anxious because that is something he did very well, night driving adds to the anxiety, and bad weather ramps it right up. I will not do this to him - or to me. LBD is a daily journey, and while I wish it was not our journey, I have decided it is going to be the best it can possibly be. I try to limit any anxiety producing situations as much as possible- and then try to smooth over the ones that are unavoidable. Asking him to ride in the back seat may be something that will have to happen one day, but I hope to avoid that if possible. However, if that is the safest way for us to get somewhere, I will do it. Having an accident is something I would rather not look back on and wish I had done something different.
God bless...

Back seat may work for you. My mom has been very anxious as my passenger....she will release her seat belt and try to open the door. I have the door set on “child lock” . She now sits in the back and is calmer, does not release the belt and I still use the child lock. It is a roller coaster!

Oh my @hbjuniperflat that must have been distressing and scary for you. I hope you saw the helpful suggestions from @teacher502 and @providence1960.

I hope night time driving is relatively easy to avoid for you both.

Providence, I found it interesting that your mom actually found it to be a relief to be in the back seat as it relieved her of the pressure or stress of watching the road. Juniper, that might be worth a conversation with your husband about offering the backseat option. This may be best approached if you have others with you so that it's not banning him to the backseat alone.

I'm grasping at straws here, but I wonder if there is something else that you could use to occupy him while you're driving? Some of these things may not work depending on his state of mind at the time or the length of the drive, but here are some thoughts I had:
- Ask him to read the highway signs or street signs
- Play "I Spy"
- Read license plates
- Ask him to watch out for particular milestones or sights to "help" you navigate

What might help focus his mind on something other than co-driving?

I play Broadway soundtracks..my mom sings along and it helps her with driving stress...