"In the end, it is not enough to think what we know. We must live it. For only by living it can Love show itself as the greatest principle." Wu Feng
When we move the person for whom we provide care into assisted living, the stresses do not go away; they are diminished and they change. Now, instead of minute by minute and day by day assisting him, cajoling him, doing for him; the facility does most of that. But, we still have our stresses. Lewy Bodies Dementia has as one characteristic extreme variations in lucidity, and we still deal with that. When Dwane moved into assisted living, we had a tender moment when we both cried and he said he knew that was the place he needed to be. When I saw him yesterday, he was resentful, full of a myriad of complaints and wanting to 'get out of here'. So, we still deal with the cajoling and the never knowing how the person will be when we go to visit.
And then there are the finances. We need to figure out how to pay for the services if we are not going to provide them ourselves. I have dramatically cut back on my living expenses. In one I was helped out by the phone company mistakenly disconnecting, rather than putting on 'vacation', our phone while we were house sitting in a home that was better suited to meet Dwane's increasing needs. So, I let that phone go. I also stopped all tv except for the local channels. In just these two actions I saved considerable money each month.
When we consider how to deliver the caregiving services that someone with dementia needs, we need to have very honest conversations with ourselves. Do we choose to deliver those services ourselves, thus saving money? Do we choose to have paid and/or volunteer services come in to give us respite? (That did not work well for us because of Dwane's extreme opposition to someone coming in.) Do we choose to have the person live in an assisted living facility; and, if so, how will we pay for it? It is a choice between our time and our money. Whichever you choose, I implore you to choose an option which gives you sufficient respite.
I think that the fluctuations of lucidity in Lewy Body Dementia is probably the hardest part.
ReplyDeleteEvery day is a new day, at times every hr was a new hr and outside care seems impossible here due to Hubby's extreme opposition to having a "babysitter" as he put it.
That's what makes Lewy Body so different from Alzheimer and sometimes, much harder to care for at home or a facility.