Caretaking decisions are so hard

Anonymousjpl123

in the past year I’ve made so many decisions. Placing my mom in AL (moving her out of state to be closer to me). Taking her to two different neurologists and primary care docs. Taking her to the ER. Placing her in memory care, while figuring out if her NPH is treatable.

I am not sure she’s ready for MC. She seems so much higher functioning than the other people here. That’s why, if her NPH is treatable, she can (if she wants) go back to AL. I know some staff question if she needs MC.

Others on the outside, who see her when she’s not in the facility, see how disoriented she is and truly felt she needed a higher level of care. It comes and goes - that’s the truth.

So much of these decisions are subjective. Am I sure I’ve made all the right ones? Absolutely not. I think that’s one of the hardest things about dementia. What is the right placement? What is the best decision? We have to decide things with so much grey area. My heart just goes out to everyone, including myself. We do the best we can.

Quilting brings calm

The rule of thumb explained to me us that you base decisions on their worst day. Because that’s what will keep them safest. For example, if their worst day means wandering, then an unlocked AL isn’t safe 24/7/365. On her worst day, your mom needs MC. Thats what will keep her safest. Once the NPH is treated, and if she has improved, you can consider AL.

The decision to move my parents to our home state and into an AL wasn’t hard for me - getting them to agree to the move was awful. When the time comes to go to MC, again, the decision won’t be hard on me. Getting them to go will be. The financial implications will be hard.

Right now, the hardest decisions for me are trying to determine if they actually have a medical issue or are just wanting attention.

JeriLynn66

I try to tell myself, at the end of every day, I’ve made the best decision I could to care for my PWD. The unknown and “what if(s)” are so daunting… being here with you all keeps me grounded.

Big hugs, JeriLynn

MN Chickadee

Yup, you never know if you are doing it right. The "what if" phase of grief come long before they pass away.

I would caution against making decisions based on her better moments. It sounds like she may have some mixed dementia right? Something in addition to the NPH is a possibility if I remember correctly? I would expect treating the NPH may help with things like gait, incontinence or short term memory but not sure it will make her more oriented to reality with the delusions and such. If it were me I would move her based on her worst days and be very pleasantly surprised if treatment causes her to suddenly be totally out of place in MC. Hard as the change to MC is, there is also something to be said for moving just once and placing our LO where they can coast until the end or close to it. In my mother's case, she was younger and healthier than the others and I also worried she was too high functioning. After a rough adjustment I found she did much better in that setting. The support and structure allowed her to let go of the anxiety from the stress of trying to get through "normal life" and use her brain power on visits and activities. I also remember you saying you were being stretched thin and concerned your employer would take exception to your job performance. If you place her back in AL you are nearly certainly going to be back to that situation where you need to be on deck all the time. While there is still caregiving and advocacy when they are in MC it does open up more space for you to have a life of your own and focus on your job. Be careful not to jeopardize your job based on wishful thinking. I know how hard this is, I lived it and it was so hard. Hang in there and keep in touch.

kamilawal

I understand how challenging and complex caregiving decisions can be. It's important to consider the overall well-being and needs of your loved one while also taking care of yourself. Stay strong and reach out for support when needed.

Anonymousjpl123

@Quilting brings calm thanks for the reminder of that rule of thumb: that she needs to be based on her worst day. Because it’s true. I get so caught up in worrying and second-guessing, especially if anyone even slightly implies that I could have made a different choice.

@JeriLynn66 I am literally right there with you. Like I literally do this every night.

@MN Chickadee that is literally what I feel! It seems crazy but she does seem less stressed out there. She of course complains that the food isn’t as good, she’s worried others are not as “with it” as she is, but she genuinely seems less stressed out. And yes, it is true, I am 💯 less stressed out with her there too. It seems selfish but she needed so much and was so anxious all the time in AL. We’ll see what this all brings. Of course I’m going to wait until the lumbar shunt (next week) and then potentially surgery. And then we’ll see. As you say, it has opened up mental space I simply didn’t have. I won’t keep her there at her expense. I’m genuinely trying to be open.

@kamilawal yes that’s sort of the challenge: each persons needs are going to be different. I guess if I’m making decisions based on what I truly think is the safest and most responsible place for her to be, it can’t be bad. I’m just going to try to breathe.

Thanks for your replies - you all are keeping me sane.