Struggling with Changes and Finding Support

Written by M of NY, a Caregiver to her Husband:

A topic I feel is very important is the loneliness of having a life veer off course from a newly diagnosed serious illness. You have already begun to notice things you don’t understand, and this can be confusing and unsettling.

Knowing you are part of a community of people and their partners who are living with this illness, that you have peers to talk with who know what you are talking about, and that everyone has language for this conversation, is valuable. Even once you have been given the name for the illness, the early stage of living with Lewy body dementia (LBD) is still an alarming place to be. You may have noticed unusual new behaviors over the course of several years and thought, or been told by doctors who were consulted, that there were separate causes for each.

It’s easy, I think, to mix up psychiatric and neurological troubles, as we are much more familiar with the former, e.g., anxiety and depression, and what to do about them and how and where to seek help. Something neurological doesn’t usually come to mind as the problem when a person starts to behave differently.

In LBD, you may notice things that don’t seem related (nightmares, yelling and talking and thrashing around in sleep;sleepiness all day, dozing off and on throughout the day without awareness of doing so, and acting out dreams then too; hoarseness, a very quiet voice, and thinking the other person has a hearing loss when they may be asked to speak louder; a runny nose; keeping the mouth open and having saliva issues at times; forgetting and losing things; andbalance and gait issues), until, that is, you are in group and find out they are in fact all aspects of this neurological illness.

And, you may notice that in social situations, the person with early-stage LBD might seem very much like their old self, for a few hours at least. As a result, perhaps, your friends and relatives might tell you that they are puzzled about what you have been talking with them about, as the person seems fine to them. But then at home, later, the person has relaxed and is again counting on their partner to handle things, and perhaps stops making the effort needed to hold on to their old level of functioning. This is called showtiming; people in the group are relieved to hear that this fluctuation in functioning in a single day has a name, and is common, and therefore not simply in the partner’s imagination.

Being able to share experiences and resources, to ask questions, and to help others, in an education/support group, is priceless. I cannot imagine living with this new reality without this support.