Cycling through caregivers…Elder Care Manager?

DianaNR

I would like to first thank everyone for their participation on this board – I have found it useful many times.

Here is our situation: Mom is 87 and was diagnosed with Vascular Dementia in February of last year.

My brother, who lives at home and did so prior to my mom’s diagnosis, has been caring for her. He was unemployed when she was diagnosed, and we pay him (W2 and all).

We do have a caregiver come in every day from 9-2 to give him a break and allow him to leave the house for various errands and such. The first caregiver lasted a while, maybe 5-6 months, but she received a diagnosis of stage 1 breast cancer and kind of fell apart. She kept crying in front of my mother, and we had to ask the agency for another caregiver.

We then cycled through a variety of people, and landed on the second longer-term caregiver; she lasted about five months as well, then quit when her brother was arrested. We cycled through a few more people; then last week changed agencies.

I spent a lot of time researching the new agency (I’m the DPOA and handle mom’s financials), and I think I found a great one. They subscribed to Teepa Snow and seem to know what they are doing.

After three days on the job, the agency called me and told me they were terminating our account as the environment with my brother was bad. I pressed for more details and was told that my brother still cares for my mom when the caregiver is there, which undermines the caregiver and doesn’t give them much to do. For example, my brother comes into the kitchen and asks my mom if she wants lunch. The caregiver says, “Hey, I’m here for that. I’m happy to make lunch for your mom,” to which my brother replies its ok, I’ll do it. Yesterday, my brother suggested that the caregiver take my mom for a walk, and she said, “why don’t you do it since you seem to do everything around here.” Then she left, and the agency terminated their contract with us.

My brother feels he did nothing wrong here, but I suggested that maybe he needs to let the caregivers work when they are there, that his “helpful” presence might make a competent caregiver feel somewhat useless. His answer is that he has had lots of caregivers, and they have worked with him in the past. Me: yeah, but none of them stayed.

His view is that for two days, everything was fine and that this woman just had issues. I think he is immature emotionally and just doesn’t get it. But I’m not willing to keep hiring agencies only to have this situation occur again. It’s draining. I know he cares for my mom well, and I’m thankful for that. It’s no small thing. But his inability to let go is going to burn him out and creates a challenging position for the incoming caregiver.

I’ve got middle and high schoolers at home and live 2 hours away, so while I’m there most Saturdays, I can’t be there to meet agencies or caregivers quickly during the week. I’m thinking of trying to find a senior care manager to manage the agencies. Has anyone found a service that does this?

Sorry this post is so long!

Diana

mommyandme (m&m)

We use caregivers too.  The caregivers should also be there for the family of the patient.  Our understanding has been that 20% of what they do is for me, her primary caregiver.  I think let that agency go, they have a problem with working with family.  The caregiver should have offered to make your brother and your mother lunch.  Even though I’m here a lot and able to do a lot, I still expect them to do some light housecleaning etc… If my brother is here visiting from out of state, he just hangs out with the caregiver and my mom.  

Maybe five hours a day isn’t necessary, maybe every other day or 8 hour days here and there.  Use longer shifts so he can really get away… a 10 hour day?   If he’s young and immature maybe he doesn’t want to always leave or go be alone. Maybe your brother should set up some guidelines and expectations on what helps him the most.  If my brother set up the schedule from a distance and it didn’t really meet my needs then that wouldn’t be helpful.  

Before my mom needed 24/7 we had care in the home split shifts, 3 hours in the morning and then again 3 hours in the evening to help with meds, meals and getting dressed.  Then it went to two 4 hours split shifts per day.  Right now if I could get a caregiver to get her up in the morning cleaned up and meds and fed, I would be happier.  I have yet to figure it all out.  The middle of the day is easy for us, getting her to bed not so much.  Right now I do that 6 nights a week and wish it was less but her physical needs are something I’m pretty expert at right now and the help can’t all handle it.  

I have help in the afternoons on mondays and fridays. Other days are a different schedule.  We’ve been running this for almost a year.  Maybe more flexibility in the times he gets help should be considered so he can get the real respite he needs. As you know, that’s imperative.  

So far we haven’t hired a care coordinator although I’m not opposed to the idea.  But again I have control over the schedule myself, if I need a little added time here or there then I request it with the company.  I shift times too but I talk directly with the caregivers to see what works for them since caregiver consistency is also detrimental, then a I call the company scheduler.  

I’m sorry for these difficulties.  Hate this mess we’re all in.  

dayn2nite2

I'll be blunt - your brother is the problem.

About him - was he retired prior to your mother becoming ill or has he always lived with her?  Did he have what one would consider a normal life, with employment, maybe a relationship or two?  Or has your mother always sheltered him and enabled him to be under- or unemployed the majority of his life?

Your brother isn't appreciating the break you're trying to provide, so I'd cut back on the caregivers to ONE day a week 9-2, he'd better get up and out of that house while the caregiver is there or stay in his room and not interfere.

I also don't subscribe to the caregiver doing anything for your brother.  No sandwiches, cleaning, nothing.  I'm assuming he pays no rent in addition to being paid for caring for your mother.

Cut the help down to 1 day, tell him if he causes another caregiver to leave then you will not be providing ANY help and you'll be looking for placement.  See how that grabs him.

​fesk

To me it sounds as if there may be an issue with both the caregivers and your brother interfering. Having used a lot of agencies over the years and seen the quality of some of the caregivers they send out at times, I am skeptical of them. The representatives at the agencies always talk a good game/say the right things, but it's rare that they send out a quality person/good fit. It does happen, but you may need to go through several people just as you are. Also, it's common that the hourly caregivers may not stay long term. I find it unprofessional that the agency terminated the contract based on their explanation. That sounds extreme.

I know the agency you're speaking of who follows Teepa Snow's methods. They sent a caregiver to my home without informing her of any of the expectations. These are all franchises and each office is run differently. The basic training most caregivers receive on Alzheimer's only goes so far. Also, each person with Alzheimer's is unique and a caregiver needs to know the basic training may not work in every situation and they need to think/adjust on the fly. 

I ended up speaking to many agencies over the years. While you want an agency that is reputable and accessible, it really comes down to the caregiver. That caregiver could come from any agency. Unfortunately, many people have to go through a lot of caregivers before finding the right fit. 

Some caregivers have strong opinions about what they will do outside of specifically caring for their client. Some will keep busy and clean around the house; others refuse to do any of that; and others may create more of a mess for you to deal with. Some caregivers are open to input and others are not. The best you can do is be very clear with the agency about the expectations and then go over them with the caregiver when he/she arrives because you cannot rely on the agency to communicate everything.

You can hire an elder care manager to coordinate this for you. They may also be able to handle other responsibilities but this will be an additional expense. The expense may be worth it though.

I have also found with the pandemic, many caregivers are now working privately and the agencies do not have the staff they did a few years ago to fill positions. You may want to hire privately but that is a lot of work.

I'd recommend trying to come to an agreement with your brother about what type of assistance he wants and how things will be handled when the caregiver is there. Then that should be made clear to the agency and they should inform any caregiver they send. If your brother is going to be more involved, then let the agency know and they need to find a caregiver that can deal with it. Problem is most agencies will send whoever is available.

There is the larger issue of your brother accepting help and avoiding burnout. I think until you and your brother come to an agreement about this, you will not be successful in hiring a caregiver, because you won't be able to figure out the caregiver's responsibilities. Some elder care managers help families resolve these types of issues. It may definitely help you to reach out and talk to one to see if it will help your situation.

Once you and your brother can get on the same page, you can then get an agency/caregiver who is willing to work with you.

I am sorry you are having such difficulty with this. I have spent an inordinate amount of time trying to get appropriate help. Please try to hang in there.

ST_niece

Hmm… I’ve been in situations similar to both yours and your brother’s.

I used agencies to provide caregivers for my LO in another city for years. Caregivers often got new jobs and quit after a few months. Many of them are studying, and quite reasonably want to move up in life. I’d say having one for 5 months is pretty good.

My LO now lives with me, and I have occasional paid caregivers in my home. It is challenging for one’s home to be someone else’s workplace. The caregivers might prefer to work alone with the client, but they should be able to accomodate family members who may also be home.

It doesn’t sound like your brother did anything wrong. 

Was the caregiver worried that allowing your brother to make lunch could make it look like she was shirking her duties? If she has to report to her supervisor what she did on her shift, she might be uncomfortable having to state that she did not make lunch. 

It might be helpful to talk in detail with the manager of any agency you use, to make sure caregivers understand that your brother might be home during shifts, and might help or make suggestions. 

ButterflyWings

ST_niece wrote:

It is challenging for one’s home to be someone else’s workplace. The caregivers might prefer to work alone with the client, but they should be able to accomodate family members who may also be home.

It doesn’t sound like your brother did anything wrong. 

I agree with ST_niece here. And what M&M said. Without knowing all the details and dynamics, it seems to me that no hired helper needs to be territorial with a family member. (Certainly not after only a couple of days onsite.) I personally would not want a HHA acting as if their preferences overrule mine, in terms of how our household will work. Maybe there are other concerns with dear brother, but if he is keeping her safe and comfortable, it is worth the pay, and is a blessing many families do not have. Kudos to you all for seeing that and also providing him time "off" from that role. If he prefers to be at home rather than leaving for other activities, you need an aide that is not threatened by that.

For example, my situation is this: I do know DH best but am not worried about someone else helping in my absence as long as they are trained and trustworthy, and can follow my basic house rules and expectations. I think that is part of what most agencies promise, so no issue.

But only I know what is best for me. And I have actually had to debate with people (well-meaning friend, an in-law with questionable motives, and a fellow caregiver who says they'd die if housebound like we have been lol). I've had to explain that I am definitely not going to be banished from my home for hours on end, to satisfy what others assume would be best for me. Perhaps they mean well, but what I really desire and need, is someone else to spend time with, watch (literally), and redirect my LO as/if needed while I take care of neglected tasks AT HOME

I am a homebody, and this should not be threatening to any helpers, or they are not helping me. And that really is their role. I may decide to nap one day, or soak in a bubble bath, or make lunch to enjoy with my DH without having to run out of the kitchen constantly to intercept him flushing something troublesome down the toilet, or rummaging and dressing to leave by a different door. The expectation that I want, or need to be invisible and/or offsite during all these hours is not helpful nor realistic. It will upend my life even further, and I'm not doing that.

Every PWD is different and every family member is different. Sure would be nice if agencies and aides could anticipate and respect that. Maybe they do. Time will tell, I have yet to receive the vaxxed, dementia-aware, any gender HHA we are hoping to find sometime soon. It sounds like the previous long term aides stayed 5-6 months until their own personal issues intervened. That doesn't suggest to me that brother did anything wrong. I personally would not have appreciated rude backtalk from an aide who considered any interaction I might choose to have with my LO as "interference". That's just me. But if the agency terminated the contract without even getting feedback from the family first, then maybe they did you a favor. That seems unprofessional and not fair to you as the organizer of matters from offsite - and possibly not to your brother.  Not a good sign.

Hmm...touched a nerve with me I guess lol. I hope we don't have this issue here in the future. Glad you found us but I'm sorry you needed to. I hope things get resolved for your family soon.

jfkoc

The jurney is not easy under the very best conditions. I agree with the "job description" point and working with your brother to hammer that out. They are there to assist him. You might try fewer hours for a start.

I had 24/7 home care for my husband. They were there to take care of my husband when I wanted...ie...I always had lunch and dinner with him. They stayed in the background.

Looking back I do not think anyone felt undermined. 

DianaNR

 Thank you all for your thoughts and different perspectives.  And for being kind, it goes a long way. In some ways, just knowing that there is a fairly large group of people out there going through the same thing is comforting.

We may cut back some on the caregiver hours (I didn't realize how involved my brother is with my mom's care when the caregiver is there)  Also, my brother will now be in charge of finding agencies, so the consequences of not working well with the caregiver will fall more on him.

I’m not blaming him totally for this situation (caregiver could have sat down and had a conversation like an adult, but chose not to), but he has to work with the caregivers as well.

Mommyandme: My brother has so far set the schedule and that seems to work for him, but now that I know he is co-caregiving with the caregiver I think we can cut the hours back at least a little. 

Dayn2nite2: There is a lot going on with my brother – you got a lot right in your post about him living at home and being under-employed for many years.

Fesk: I agree that the agency could have had more flexibility. Perhaps that quick termination will be a blessing in disguise. And I completely agree that clarity on expectations is important. I’ve stressed that point with my brother. Appreciate your insights.

ST_niece: Totally concur that having people work in the home while another adult is there can be challenging. We had au pairs for years, and our kids would never behave well when we were home. I think this caregiver felt undermined when my brother “did her job” and felt kind of useless. And my guess is that he missed the cues this woman was giving about her discomfort.

ButterflyWings: Thank your for your thoughtful reply. You make a some very valid points about what is right for my brother, and the fact that he gets to decide that, not me. We will course correct here and try and find someone that can caregive alongside my brother. We are very grateful for the care and love he does provide.

Again, thankful that this site exists and we can bounce information off one another. I’m feeling better about the situation now that my brother will handle the agencies. Only time will tell how this goes.

ButterflyWings

Diana I am glad you posted this. It helps me think through some other things that may make our future (hopefully imminent) home help go smoothly. Like alternating mornings and afternoons.

M&M mentioned the alternating schedule -- and I can see big advantages for that. For example, the 9a-2p window is DH's best time of day. Maybe for your mom as well? If so, that means brother could be missing out on some of the only remaining windows of time to enjoy just plain "son" time with her while a caregiver is also on hand to help out or take her for a walk, etc. 

Otherwise, he may only be getting the sundowning/poop patrol/sleep interruption shifts which can be a real drag. That on top of watching his/your dear mom declining daily is really soul-crushing most primary caregivers will tell you. Especially if they always have been close and have a good, working relationship these last many years regardless of why he is not working outside the home. Co-dependent or just a good balance for each others' needs? Regardless if it has worked out well for years for the most part, he has provided a huge service and great relief for your family it seems. That last aide maybe needed a bit more compassion versus seeing him as the competition.

Just a thought. 

*(Addition: your follow up sounds like a great plan. Engaging him in the search and hiring will likely bring more consistent success with the caregivers). Though we are hearing and experiencing that it is a tough time for agencies and families to keep good people - and even a shortage with the pandemic and all. Fingers crossed for your family and mine! The search continues...

King Boo

So - coming from the view where one branch of the family had the stay at home, never on their own or employed family member  -

while your brother's availability to do care for your mother may be a good option, it is important to truly examine things and evaluate whether he meets her clinical care needs.

Or hurts them.

An overinvolved, hyperfocused family member who doesn't get "The Gestalt" of things may do OK as a caregiver - up until a certain point.    The possibility certainly exists that his actions will not always be in her best interests.  They can even sabotage.

Keep your eye on this.

My sympathies for all you have to juggle.  Parenting time is sacred, and the demands of even monitering dementia caregiving soooo draining.

May flowers

DianaNR, I am in your brother’s spot at the moment in that I have a new caregiver but she is new to this role. She is a long time nurse but she is new to caregiving. The first few visits are a lot about getting to know him - his needs, abilities, what he likes, doesn’t like, and such. I have seen it as a give and take - when she has suggestions I listen, and she seems fine with me explaining things about him. The other day I stepped in and helped when he stood up - because it is a two person job, he is not stable and she is older as well. I offered to make them both lunch when I was getting myself something to eat, I didn’t feel I was overstepping my bounds, I felt I was being polite. It’s my way. I also offer water to the guys working on my roof, lol.

Even though a caregiver may be experienced, they are still new to your LO. We had a very experienced caregiver for my MIL who had cancer and she never acted put out when any of us helped out or explained things about her charge. But she did take offense at one family member who was just abrasive (we all do, lol) - so some of that is definitely personality.

I also took the opportunity to get some neglected yardwork done while she was here!

This next visit I will make sure to let her know that I don’t want to step on her toes and for her to please let me know if I do. All things medical, she is far beyond me so I value her input. She has also been a hospice charge nurse, so she already has had great input with how to navigate hospice. 

Anyway, having said that, I do not think it is unreasonable for the first several visits to be a “getting to know you” and for your brother to have a lot of input. As much time as he has spent with her, he probably knows her quirks and what she likes more than anyone. Over time, he has to accept he has done his job introducing them, and setting expectations, and let go and enjoy his free time. That is what I plan to do. After all, this agency works for you, not the other way around.