Stages

jfkoc · July 18

I have personally never seen the benefit of knowing "what stage". Why? because every one of our loved ones is going down a road with a pretty clear ending.

While loved one is going to go through predictable changes the changes can not really be grouped. They overlap. Additionally not everyone has what is earmarked for a stage.

I think it is far, no vastly more important that a caregiver learn how to give care.

Being a caregiver goes beyond safety, food and hygiene. It takes an enormous amount of learning.

Fortunately there is google. There are books and there is this site where answers are to be had…solutions shared and the most updated medical information.

Help is at hand!!!

Stan2 · July 18

I mostly agree with you, however if you were to ask for assistance or advice it is helpful to have some sort of reference to refer to so that your correspondent will have an idea where your LO is on this journey.

dcare45 · July 18

jfkoc I agree with what you have said. As an in the trenches caregiver, knowing the stage has not helped me. Some of the stage 6 issues occurred for us years ago while some stage 3&4 are trickling in now.

The reason I did checkout the DBAT (stages) was so I could communicate to someone that is not intimate with my LO, as Stan2 stated. Just another tool in the box.

Quilting brings calm · July 18

I used the staging tools to help me 1) figure out what I should be concerned about next and 2) get an idea of the AVERAGE amount of time my mom might spend in that stage so that 3) I might be able to guess when she was going to need to move to different facility or 4) would have enough money for the expected life span. It didn’t work out that way. She stayed in Stage 4 longer than average, was only in stage 5 for a few months… and then went through six and seven in a matter of weeks.

terei · July 19

When discussing the disease with others who are knowledgeable about it, it can be a shorthand without having to describe a lot of behaviors to explain what you are dealing with.

AlekoW · July 19

Makes sense. OTOH, I'm keeping in mind the stages do overlap and slide around on the progression of the disease, I look at the stages as a heads-up. I need to know the terrain, the map & compass points so I don't freak out over stuff I don't need to—which is kinda what's happening because I'm trying to figure out where she is and the shorthand stages offer help keeping my eyes-up (especially when I'm getting official resistance to what I'm living with every dang day). I'm best when I can see or know the horizon, or at least the next ridge line and how to get around or over it. Old habits from decades of mountaineering, whitewater paddling, surfing & ocean swimming.

notequipped · July 19

I suppose it may be different with a spouse. I felt that I had to know what stage my Mom is in. She desperately wants to live at home (and drive but that’s a different story). At her stage, I don’t believe that to be safe. She is currently living with us but, for many reasons, that is not a long term solution. I need objective evidence/an objective professional opinion regarding what she is and isn’t capable of. I need validation that placing her in MC is appropriate at this point. I’m teetering on the edge of my breaking point. It’s all a bit of a guessing game but trying to balance out life expectancy based on the current stage and the cost associated with long term care, too.
Given my family history, I’m about as adamant as I can be that I do not want the responsibility for my full time care to fall to my husband or children should I receive the same diagnosis in the future. Once my Mom is situated, I will be taking necessary steps to ensure that never happens.

harshedbuzz · July 19

Like QBC, I found the stages very useful in our situation.

The PWD was my dad. While his progression was atypical in many respects; he remained verbal to the point of conversation until he died yet the same mouth and throat couldn't swallow. His verbal skills often fooled professionals and allowed my mom to remain in denial about the impact of his dementia. Having the DBAT with age equivalencies was useful in making the point around safety issues like being left at home without a caregiver.

Mom allowed this far longer than was safe as we discovered when she asked me to be available to the techs installing her new HVAC unit. The smoke detector when off after the techs warned us it would; dad sat there for 30 seconds before asking about the terrible noise. He processed that for another 30 seconds, forgetting the tech's warning and mom's appointment, and went down the hall to tell her. In a real emergency, he'd have died.

The reality was that my parents' nest egg was impacted by dad losing $360K day-trading in the middle stages of the disease. Mom had handled the household accounts for both their homes, while dad oversaw their investments. When we realized what had happened, it changed how we balanced respite and the timing of placement as we wanted to avoid dad's care burning through their resources at a nice MCF and mom having only the option of a Medicaid bed if she needed care because of one of her many progressive health issues.

As it worked out, he progressed through stages 6 and 7 more quickly than average which left mom in better shape financially should she need care. But because of her tendency to deny how impacted he was, she was blown out of the water by his death. She didn't have the support of hospice as a result and could have benefitted.

HB

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