OK, this is totally from my perspective. I am still a fairly high functioning LBD patient, that is, most days and only during the daylight hours. I have explained that nights are my worst enemy and that some days are not too good either.
I have also commented on the stress I see my wife and caregiver going through. I see her frustration and disappointment. I experience her anger and rage. She is going through Hell with no outlet. Yes, she has some Bible studies that she enjoys. But she comes home to the reality of my disease. I understand that is unrelenting and difficult, at best!
So, the question comes to mind, she is the right time to institutionalize a LBD patient? I just read a post on the LBDA.org Community Board about a child trying to help a parent with LBD. Their decision, based on the fact that their Mom was still fairly high mentally functioning, was to keep her in their home. My question is, what do you do when she has her bad times? Or when she gets worse? Is making a good decision when the patient can participate in the decision better than making a hasty decision when her condition get bad?
There are times that I think, at least for me, that I would be better in a facility that limited the outside interference in my life. A quiet place that would not agitate me. A place where I could close the door to my room and be alone.
Also, there is the issue of finding a facility when you are at the "Amen" moment of a parent you can no longer take care of. Where do you go then? You are at the mercy of the system. Rooms available, quality of care, tie to search for a facility, ll close in on you when you wait until the last moment. No, I want this decision made when I can participate in it!
A continuing Care Retirement Community meets this need. A facility with memory care and assisted living that are on site, with a reservation ready for you when you need it. Also, what about respite care? My wife may need a break from time to time. Maybe a trip to a family reunion. There should be a way to make life easier for her!
Now, the search for a CCRC that will take someone already diagnosed with LBD is a difficult one. Many will not take you if you already have a diagnosis. But there are some. And the time to look is when you still are early in the early stages.
We are on the waiting list of a local CCRC. But that list is not moving, so we are looking at others also. The key here is, look now!
I am ready to be in a facility that has the capability to meet all of my needs and my wife's needs. For instance, if she breaks a hip, who will care for her, and for me? I cannot do my own meds now! Well enough keep track of her meds. I can cook, but going out for food is a non starter because I am not supposed to drive alone! But, a CCRC would meet our needs for the convalescent period for her injury.
Obviously, I am firing on most cylinders mentally right now. However, a few days ago, I was not. You may remember I soiled my skivvies and had other issues related to LBD. And my short term memory is shot! I also have the issues of hallucinations, REM sleep disorder, and a little wandering. So you see, in my mind, a little assistance would be nice.
I am ready for the next phase of this disease and ready for the next level of care. WE just need to find the right place, in short order!