Attribute behavioral symptoms to disease - one drawback

dancsfo

While I agree that it's best to attribute behavioral symptoms to AD [1], and makes it for both the caregiver and the PWD's well being, since you do not take it personally, and I sense one potential drawback.

By treating behavior solely as a disease symptom, one starts to lose seeing the PWD as a person you remember and lose some personal touch by being almost clinical.

There may be some inner desire or frustration that the PWD cannot convey, and manifests itself as anger or depression. At the extreme, a caregiver can just brush off any such behavior and think: "It's just the disease", become detached, respond in a routine way and lose some of the compassion one would normally have.

This probably doesn't happen too often, but one can believe that a professional caregiver may wear such an "armor" to distance themselves. But as a family member, I find that it's still desirable to try to view their LOs in a more personal way. I realize it differs per person and the stage of AD but finding the right balance is probably important to preserve the relationship as a LO, not as a patient. Perhaps a good professional caregiver may also try to seek such a balance.

[1] https://memory.ucsf.edu/caregiving-support/behavior-personality-changes

gampiano

that's an interesting point of view, but i can truly say, that as my husband's sole caregiver with very little outside help, i had to separate my roles, particularly after stage 6. I guess its different for every person, but the tasks involved, the physicality of managing a much larger person, and, ultimately, the breakdown of the relationship, all called for me to step back and preserve what was left of myself.

GothicGremlin

@dancsfo I agree very much with what you're saying. It's kind of what I've tried to do throughout this ordeal (I can only think of the progression of this disease as an "ordeal").

Trying to stand in Peggy's shoes and see the world from her point of view has always helped to maintain a good trust relationship between us. The Wendy Mitchell book drove the importance of that point home to me. Now that we're at the beginning of stage 7, that trust is paying off. I can usually get her to take her meds, where others often fail. I can usually get her to eat something, even if it's just a little bit. Somewhere inside she knows I'm looking out for her.

All of that said, and even though I have more help, what @gampiano said resonates with me too. The farther down the road we go, I see less and less of "Peggy", and more and more a person with late stage dementia. I certainly am more detached than I used to be, mostly because it's all so painful. Sometimes we all have to put on that armor.

dancsfo

@gampiano It must be so challenging and exhausting for you. I agree that self-preservation is ultimately the most important and I am glad you have made that realization. I think that being a sole caregiver is much worse than twice as hard as splitting responsibilities with someone else, say 50% and 50%, since you don't get the downtime to recharge (so it's relentless), having someone else to commiserate with will help relieve some tension, and the mental comfort in knowing that there is a backup, so you can avoid worrying as much.

I feel that @GothicGremlin has done a good job to preserve a bit of the relationship, but as you mentioned, it's going to be hard to keep that too, on the longer-term. We all do what we can.

Quilting brings calm

Some of the behaviors my mom and step-dad are exhibiting are solely due to the disease. Some are due to the fact that they don’t like not being able to live independently and express that. Others are their normal personality, with the flaws being magnified by the disease. Example: Mom’s always been anxious and depressed. The disease causes her to fixate on things that make her anxious because she doesn’t remember working through the anxiety 15 minutes ago. So she’s on a loop.

Regardless of the causes of their behaviors, the disease and the caregiving have pretty much wiped out any emotional connection I had left with them. That doesn’t negate the fact that they are human beings that I have responsibility for. Thankfully the AL is there to be the 24/7 on site caregiver. I handle the rest, and wonder if I’m doing it right.

CatsWithHandsAreTrouble

A good thing to remember, balancing between how much is the disease and how much of it is caused by something else, not just in outward behaviors but also other symptoms (eg how UTIs can manifest vs later stage progression).

I can only imagine how taxing caregiving can be for those of us who have close relationships with our PWD and how they have to compartmentalize their frustrations of the disease and their remaining relationship. If they separate it too much, I can see how that can impact their care. I'm not close to my mom so I've a different set, but similar, worries of balancing personalize and companionate care and objective care.

gampiano

hello, just an update ,

My husband died on October 14. Thankfully, stage 7 progressed rapidly--after so many years of incremental change, this was a surprising turn. We had wonderful at home hospice care, and some outside help , and boy, did we need it, as each day brought another crisis. Everything broke down at once.

Now, in stage 8, i am trying to regain some footing. So much time away from the aspects of every day life has altered things. The rhythm is off, the pace is wavy--spurts of energy mingled with inertia . It will take time, maybe a lot of time... so go with the flow and try to live in the moment. Feel what comes to you. Don't make too many decisions right away...

Have a peaceful holiday, you all deserve it, and so much more,

Maureen

dancsfo

@gampiano I am sorry for your loss, and I hope that you gradually get back to the everyday life that you desire. Have a peaceful holiday.