This blog is another chapter in Bob’s story that I want to share with our ‘DD’ community. As a family member of a person with late stage dementia I walk into that bedroom each morning looking for a smile from Dad. If I don’t get it, the radar goes up and I am searching for a ‘why not?’. Is something wrong?….Has there been a decline?…What has happened overnight?…..a thousand questions are triggered.
Over the last 6 months or so Dad has been laughing and smiling with us whenever we enter the room. He lights up…his eyes widen….he sits up in his chair, he gives out a giggle and he searches for your name. The name rarely comes these days and we often receive an enthusiastic “….Heyyyy!!!!!….(no name)”. This is what puts a smile on our dial and inspires us to stay positive.
Yesterday he was talking ‘dementianese’ (jibberish) and in the middle of his conversation he threw in a random ‘Brett’ which I have not heard for about 4-5 months. My head snapped around as I thought to myself “did he just say my name?”. These are the special ‘split second’ moments that make my day.
I have noticed a significant change in Bob’s morning patterns with him being very emotional and bursting into tears without warning. This does occur throughout the day but at erratic times. The most recent change has been that Dad will give his regular trademark giggle, I will respond with a return giggle and smile, and his next reaction is an outburst of sobbing and tears. It is so heartbreaking to watch when this happens.
I am using much more ‘touch’ with Bob now and I will hold his hand all the time and rub his shoulder blade to give him comfort. I tell him “everything will be ok”. When Dad is crying, I feel for him and I feel sad, but I personally believe the tears are not being triggered by an unmet need, depression or anything untoward. I think the area of his brain which controls his emotions is deteriorating and causing his emotions to come out in a way that may not actually match his mood. What I mean is he may be feeling happy, but it is being expressed as crying (which is confusing). This is really tough to deal with as you don’t want to laugh when someone is crying, but his switch from laughter to tears is so rapid….it just happens. You just end up going “Awwwwwww….it’ll be ok Dad”.
The way I deal with this situation is to accept that this is another phase in the disease. I tell myself that we are doing everything we can for Dad and there is nothing we are knowingly neglecting. I try and concentrate on keeping my tone of voice ‘warm’ and ‘upbeat’ to let him FEEL my mood and positive rhythm. I can only hope that he is interpreting my intentions in a positive manner and understands that as a family we are continuing the unwavering care…no matter what happens.
I want you all to know that I am ‘ok’ and am just digging deep today to express my raw thoughts on dad to hopefully teach, educate and create further understanding in our community. I am comfortable sharing these very private moments in public and hope many of you can draw from these experiences when you need to. My blogs switch from happy to sad in a heartbeat and reflect the volatile nature of what we are dealing with….This is dementia.