Stage 6 and 7

Babz - thank you for posting. We are in 6 with a couple of toes in 7. One thing I recall reading here soon after I joined years ago, is that if you've seen 1 person with dementia (PWD), you've seen 1 PWD.

That really resonated with me, how there are stages and symptom of the various dementias, but that every single individual person (and brain) is unique and their path will be different. Makes it hard to diagnose and also to anticipate what may lie ahead, and how soon (or not).

But I understand your point and it is a good one -- plus it is why we all are here, right? To compare notes and get an idea of what might happen, although it also might not...with the chance to help each other with ideas, suggestions, advice, cautions, recommendations, etc.

I feel very fortunate that right now, my DH is also pretty easy from a behavioral standpoint. And he is fairly strong and healthy, despite sudden dips to the danger zone (fainting, falling, serious respiratory distress, occasional utis). These are the things that have kept him on hospice for nearly 2 years, with exception of a couple of weeks. But after a raucous and riotous mid-stages experience it has been a relief to have him moving at a slower, more manageable pace, though still vulnerable. It sounds like your days, like ours, are fairly peaceful and that is a huge blessing. For us, it is in large part due to finding the right meds mix and schedule. And the luck of the draw I think.

Like your DH, my guy is compliant most of the time, but doesn't really know what's going on nor what I am asking him to do (pick up your foot, turn this way, stand up, etc. No clue, so dressing is an adventure, bathing is a no but he is used to his daily sponge baths as long as I'm quick, etc. It is not the life we worked, planned, and dreamed for -- but we are together, relatively safe and sound and I am trying to keep myself healthy as well. For whatever the future may hold.

I pray he does not have to ride this train all the way to the end of the line of Stage 7 though. Where is the good and compassion in that? I will not expedite his passing in any way, and will sacrifice anything I can, to ensure his comfort and peace as we wait. But if something takes him quickly beforehand, I know he would want that, and it would be a blessing in disguise.

Dear Babz,

I am in stage 8 since DH’s passing in April, but I thought I would backtrack and share some recollections from stages 6-7. Like you and ButterflyWings, I was fortunate that DH, during those stages, was fairly compliant, schedule oriented, “easy” to care for. He didn’t know me or any family members or friends, he didn’t seem to know or care where he was or who was with him at any given moment. He could do virtually nothing for, or by himself. I could take him places, but it became increasingly difficult due to declining mobility; I could leave him at home alone for short amounts of time; he would sit quietly as long as he had been fed, toileted, and the environment was calm and quiet. What I failed to recognize and what was brought to my attention by my kids (an “intervention “ of sorts) was the fact that ALL I did was care for him, 24/7, anticipating his every need to the detriment of my own health and well being.

A 30 day trial respite at a MCF morphed into permanent placement and we never looked back. He settled in immediately and I was able to visit as his wife, no longer his caregiver, although from day 1, he barely reacted to my presence. He resided at the MCF for 17 months before he passed; he was well cared for, content, well loved, and my stress level was lowered to next to nothing. Thankfully, his passing was quick; a sharp decline on a Monday; gone Friday evening. Shocking, sad, but a blessing in disguise.

I had hoped and planned to keep him at home with me forever; we were married for 54 years. As ButterflyWings noted, every PWD is different; every caregiver’s story will be different. I wish you well; stay strong.