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My parents, 91 and 92, live in their own home, are fairly independent (Mom has what her neurologist calls White Matter Disease and Dad is doing most of the caregiving). We would like for mom to have some help besides our dad. He feels he can do it all.


They have recently finally "agreed" to have a helper come 3 days a week to provide comfort and care for Mom (give her a bath IF she will let her, help her get dressed IF she needs it, help her write birthday cards, do a little light housekeeping, make a lunch or dinner to leave with them, give Dad a break, etc.). Mom has good and bad days. We hear from Dad on the bad days. Naturally, the days are random so impossible of course to have a helper for the "bad days" only.


They are very reticent and do not understand the benefits of her yet (she has been coming on Saturdays only for a couple of months). We are trying to get them on a regular schedule and hopeful that they will finally look forward to her coming because they appreciate what she can provide. Or at least, if they don't look forward to her, settle into a routine that is not so stressful. Right now, Dad doesn't understand why she needs to be there when mom is resting (which is more and more often these days). We encourage Dad to go run his errands while she's there or get some things done in the house without worrying when "the other shoe is going to drop" with mom. But he doesn't trust anyone else to care for mom the way he does.


Almost immediately though, there are schedule conflicts...doctor appointments, hair appointments (Dad still drives) that they don't want/need her for, a funeral where Dad will go and Mom needs the helper to stay with her while he and my brother attend the funeral, but the hours are different than the "regularly scheduled" hours we are trying to establish so he asks us to schedule her during the funeral time, or visits from me and my brother who live out of state or any visitors for that matter that occur on the "regular schedule". When we visit, we invariably are going to be there on one of the helper days. (I put "regular schedule" in quotes because it's been anything but so far). They don't want her there then and it does seem a little redundant for her to be there when we are there.


Does anyone else have experience handling trying to start a routine with a private in-home helper and how you handled scheduling conflicts?


It's not just pay, we could maybe get agreement from my Dad to pay her for 4 hours, MWF, regardless of when she comes, but it's the re-scheduling that has to happen that becomes a stressor for my dad who calls us and we call the helper, and then we get back to my Dad (maybe one day, he could communicate with her directly, but so far, that's not happening and one day, Dad will not be able to keep that type of executive functioning up anyway. He's very stressed about Mom and is not sleeping well).


Plus, we don't feel we can expect the helper to be that flexible. Maybe she is fine with it and I plan to to discuss this subject with her to see if she has suggestions, but want to hear from you all first to see if you have experience with this issue. She has previous in-home caregiving experience but it's always been for one person (spouse died and the family didn't want the parent living alone), so that's different than having another person in the house (who is very protective and doesn't trust that anyone else can do "it right")

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Who plans all of their schedules at this point? Do you or your parents? Perhaps they have to allow you to do the entire schedule, then speak with their caregiver to see if it is feasible.
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SibInTheMiddle Jul 2021
It varies. Honestly there's not a lot that is not changing these days. They used to schedule everything. Mom usually schedules her next appointment for hair when she is with her hair stylist but even that is getting more complicated. Most recently, Dad couldn't understand the email from the hair stylist. She was letting them know that she would be out of town for Mom's 2 week appointment and offered several other options. My dad said he didn't understand what she was saying...and added that he shouldn't have to be making Mom's hair appointments (I think implying that is "women's business". I don't know really). So I offered to look at the email and contact her. He gladly welcomed that so I took care of scheduling several hair appointments out in the future. Dr. appointments are made when they are at the doctor and Dad writes down on his calendar when he gets home. Visits from family, he writes down when they call and let him know. Specialty or extra doctor appointments (like neurology), they didn't know how to go about figuring out who to see, so I got involved and scheduled. Same with in-home PT...they didn't know how to get it started, so I did all the research and set up. Then I was the contact they called every week to schedule the PT appointments. In the case of this home helper, they don't want her, so scheduling is definitely going to be done by my sister and I. I am really just wondering if anyone has experience with schedule changes when you hire private in-home help and whether they have had people who are flexible or they've had to have a caregiver at the house with nothing to do sometimes.
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It shouldn’t be a huge issue for a caregiver. When my mom was doing home health she would have doctor’s appointments. I did all of mom’s scheduling because she was so hard of hearing. I would notify her physical therapist/occupational therapist and explain that mom had an upcoming appointment and they rescheduled a new time.

Can you tell the caregiver that their schedule varies and they need a person to be understanding of this. Are you going to be using one or two caregivers? Two gives you some flexibility of alternating if needed.

How many hours will they be working? Full time?

Can emails from mom’s stylist and doctor appointments go to you? Do they have a portal set up? Can you set up a portal with their doctors? I do everything from my portal. If you have your parents permission, you can handle everything from a portal regarding their appointments.

Best wishes to you and your family.
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SibInTheMiddle Jul 2021
Thank you. It's good to hear that some caregivers can be flexible. I suspect she will be too but I wanted to find out if it is reasonable to expect that sometimes they may cancel last-minute, but that we'll let her know asap when we know of a schedule change, and that this is just to be expected. We have gotten off to a bit of a rocky start and have not actually completed a MWF 10:30-2:30 yet. She said she understands this is a transition period but hopefully we can get on a regular MWF in August. So, I will let her know what MWF I already know there is a conflict and that I suspect my parents will not want her there. Or they may want to modify her hours on any given day due to a conflict. Maybe we should offer to pay her for 4 hours whether she works 4 hours or not and pay her for a day that she is not even there?
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As far as doing all communicating with all doctors and hair stylist, etc., I'd actually rather not start doing all of that. They need to be able to do as much as they are able and my Mom has actually resented our scheduling things like her hair appointment. I do use a portal when a doctor is on such a system. That is very helpful. I use email for others and one doctor I can't seem to communicate with at all except for sending a secure fax! But that is the neurologist and hopefully there won't be any more neurologist appointments. Again, thank you for your input.
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Rather than take over scheduling their appointments (you indicate you'd like them to continue doing this while they are able), perhaps you could contact each doctor office and the hairdresser, hopefully one time only, and recommend they only schedule on Tuesday or Thursday. Of course there will still be conflicts here and there, but it might be easiest if those scheduling are aware these are the BEST two days to schedule appointments.

If something slips through and happens on M, W or F, either make sure she has plenty of warning if they cancel that day's visit OR have something she can do while they are at the appt (most aren't going to take the 4 hours), a little cleaning, meal prep, whatever needs doing (that's if they're okay with her remaining in the house alone - if not, perhaps she can run errands for them or herself, until they return?) If mom/dad need to cancel, hopefully the contract or arrangement is worked out prior to starting this schedule, so everyone is on board and in agreement (pay/not pay.)

The hard part for her is juggling - if she has set times for others, then it would be hard for her to change the day/time of the visit. I do think having a regular schedule, even if on occasion there has to be a cancellation, it would be best. Before moving mom to MC, I tried bringing in aides to try to let her stay in her own place longer. It was only 1hr/day, mainly a sanity check and med check, but the plan was to increase time and duty (I wasn't expecting them to do much of anything at this point) as needed. It was through an agency, but what irked me is the ever-changing time of day. It would have been best to have them in the morning, as too often she'd be napping when they'd show up in the afternoon! When dealing with cognitive declines, routines are good. We never got far with this plan - less than 2 months later she refused to let them in!

So, while it means a little extra effort for you, hopefully you can get all the docs, etc to understand WHY the appts should only be on Tues and Thurs and they will remember it so you don't need to chase them down again!

Might also be a good idea for her to be "helping" dad with other tasks, cleaning, food prep, laundry, etc, and only help him when he feels he could use another hand with mom? That way she's helping him so he can devote more time to mom. After she's been there a while, he might begin to rely on her more?
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My experience with scheduling conflicts is to align appointments up on the days the caregiver is present. I was fortunate enough to find a caregiver willing to work a split shift (9 am- 1 pm; 6 pm- 9 pm) six days per week but Tuesday was her long day (9 am- 6 pm). I scheduled appointments, ran errands, and rested on Tuesdays.* For unexpected or occasional events like funerals, birthday parties, etc., I would ask family members to cover. Your challenge is your parents do not want the caregiver there so they may not work with you. I feel your pain. My mom does not like her caregiver, but she knows that she needs her. For emergent situations (the caregiver cancels the night before or the morning on she is supposed to work), I always keep one or two people in mind who I can call to come by in case I need them.
*I write in past tense because this caregiver had to leave to care for her grandmother who is on hospice.
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