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My patient is being "cared" for by a family member. She lives in the household but works part-time. When she's at work, that's when I come in. Just some info... patient is 85 and recently diagnosed with stage 5 dementia and like all dementia patients, she has good and bad days. I'm in the household for 5 hours a day, 4 days a week sometimes more if the cousin isn't home. I've gotten the patient into a routine -- physically getting her up and going, feeding her lunch, meds, snacks and keeping her busy for the duration of my time with her. However, on the 3 consecutive days I am not in the house, the cousin will just let her sleep all day to (presumably) not have to deal with her. So when I return from my 3 days off, I find the patient's mental state more erratic than when I left her. I am really concerned about this... I would give the cousin specific instructions on how to get her up and going and she doesn't do it. It's very frustrating. I'm not really sure if there is an answer but wanted to voice my concern to a community who is willing to listen.

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It could be that the cousin does not get paid to be and you do. She may only be living in the house as a favor to the family because your client cannot be left alone.
It may very likely be that the cousin and the rest of the family consider it your job to entertain the 85 year old with stage 5 dementia and keep her busy because you're being paid to do it.
You work for her 20 hours a week (4 days X 5 hours). During your absence someone is feeding her, washing her, changing her, dressing her, and giving her medications.
I've been in elder homecare a long time and I'm going to do you a favor and give you the best advice you'll get in this.
Don't do anything. Do your job during the hours you work. If you create an instruction manual for the cousin who lives there the family will fire and replace you.
Never step on toes like that in a homecare situation when family is involved. Just do your job and work your hours. Otherwise you'll likely find yourself out of a job.
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Reply to BurntCaregiver
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Have you spoken to the cousin about what their routine is? You may unintentionally be the disrupter. Don’t assume you know what the primary caregiver is doing/not doing with the patient. Communication is essential. Is there anything you can do to ease the burden of the caregiver? Remember, you are there for 20 hours a week and have the rest of the week to recharge. The caregiver is on duty the rest of the week and doesn’t have those 20 hours you are caregiving to recharge, but is in fact, working.
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Reply to MaddieMae
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Coming at this as the sole family member of my mother who is in AL: when we were exploring care options, I would have been thrilled to find someone like you! It was easy to find caregivers who could sit with her and "keep her from getting dead" (as one candidate told me she saw her job), but to find one who wanted to keep her active and engaged would have been a dream come true.

That said, maybe her cousin/caregiver is someone like me. I would hope I would do better than what you describe, but being perfectly honest, I might not. I would have never chosen the role of family caregiver for myself. The skills required for that role don't come naturally for me yet here I am - the only living relative to my mom (other than two stepkids who live at a distance) - making care choices with her. What else can I do? Her best care really is in AL. Even so, I find most of my discretionary time is spent in some way working for her. Paying her bills, making appointments, managing her money, taking her to appointments, buying stuff she needs, and spending time with her. And during the time I spend with her, I find I spend a lot of it fixing things she has broken (i.e. cell phone settings), looking for things she has lost (her billfold for the 100th time this month), explaining to her what I just explained to her ten minutes earlier, listening to her tell me for the ???th time that they cook really good at her place, filling in words when she gets stumped, trying to guess what we are talking about. I would really love to give her a window into my life, let her see and know what's going on beyond her walls, but by the time we get to that sort of thing, she's pretty muddled. I love her, but I gotta say, I wish she were a napper!

If her cousin is like me, she would really like to know how to better support you in helping her aunt, and she may mean well, but there are many other things that fall to her that may not be a part of her expectations of you (i.e. cleaning house, paying bills, running errands). Hopefully she is seeing to the basic care of hygiene and health, but she may feel inadequate, ill-equipped, or out of time to do more.

Before my mother, I've never been close to a dementia patient. I had no idea, no idea - how relentless care can be. I know how overwhelmed I feel at times, so I can only imagine what it must be like to have the patient as a live-in member of my household.

Assuming your patient's care is not falling to the level of physical neglect, consider approaching the caregiver/cousin from a position of helping her help her cousin?
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Reply to mgmbaker
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I have a Home Health Care Aide 4 days a week for 3 hours. She seems to be able to get my husband who is in late stage Alzheimer's to eat more than I can, which is only about 12 oz. a day. His post-op therapists come in to see him during the week. He walks very slowly with assistance. A gait belt has to be used by them and by me when we get him up. By the time Saturday comes, my husband is worn out from all the work he has done during the week. I will clean him up -- with the aid of grandson or daughter because I cannot get him rolled over or up by myself -- speak with him, kiss him, cajole and try to get him up. He looks at me through heavy lidded eyes and goes right back to sleep. I repeat this several times during the day. No go. By Monday, so far, he is ready for his routine again. It may be that the person you are caring for is giving all she can give to do what she needs to do the days you are with her and is ready to rest a bit. My husband has lost so much weight and moved to the stage of rare full sentences or understandable words. When we can get him up, he likes to watch TV reruns. When he slow walks with assistance in morning and afternoon, we are carrying him to bed in the evening because he is so exhausted. The work you are doing is great, and you may be on target. But, there may be another side to the story. Loved ones are not always as willing with family caregivers. A few weeks ago when my husband had more energy, he tried to bite 2 family members as they assisted him in walking. That stage seems to have passed. I would repeat what I saw in an earlier post, are you seeing bedsores or red spots; does your patient seem extraordinarily hungry when you are feeding her? Is she clean?
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Reply to MrsPhred
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yakima: The routine that you've established is a good one. Perhaps you can speak to the cousin as perchance the cousin is unaware due to being overworked, exhausted and other things. Good luck.
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Reply to Llamalover47
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It must be frustrating and I think you're right that consistency in routine would benefit your client.

I'm not surprised that the working family member isn't up to it, though. And to be fair, if she followed the instructions you set down she would in fact end up working seven days a week.

Would the family consider hiring support - not five hours a day, necessarily, two or even one would help - for the days the family member is at home? Just to keep the routine on track and avoid this current four steps forward three steps back pattern.
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Reply to Countrymouse
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Even tho you are an Employee it seems reasonable to open a dialogue with the cousin, the family member/relative, to compare notes and make an agreed-upon game plan for your client so there is continuity that works for all 3 of you. The cousin may not have the skills to create a routine as you have, so may need some guidance there; and you will gain insight into what cousin's methods are, if any (and letting your client just sleep all the time may be due to cousin's fatigue from the outside job, etc.) That could be a starting point for a happier 'middle way'.
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Reply to Santalynn
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BurntCaregiver Jan 17, 2022
Santalynn,

It is not a good idea to open a dialogue with the cousin about how the care "team" of her and the homecare aide can optimize the quality of the elder's care.
What this will result in is the homecare aide being dismissed from her position with this family.
The poster doesn't know what the cousin's role is in the house or what arrangement she has worked out with the family. It could be that she's only there because the elderly person cannot be left alone.
The patient/client does not have to be entertained every moment of the day. On my last caregiver job which lasted for several years, my job was to bathe the client daily and wash her hair when needed, change her diaper of course but also do her daily would dressing changes, all the housekeeping, the errands, the medications, and manage the care. I fed her two meals a day that I prepared along with a homecooked supper meal every night for her to be fed later on. I brought in additional help when it became needed who were hand-picked by me from homecare CNA's I knew well and worked with in the past.
It was their job to entertain the invalid client who was pretty far gone with LBD and try to keep her engaged. I did not do this. I did everything else. The aide who followed my shift had to feed the client a meal that I left prepared, change the diaper, and basically play with the client because everything else was taken care of. The overnight aide only had to re-position and diaper change a couple of times.
It could very well be in the poster's case that this cousin takes care of everything else in the home and her job is some basic care and mostly companionship.
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I am curious how you know what happens in the 148 hours a week you aren't there.

To assume that the 20 hours a week you put in creates more of a routine then the 148 the cousin is carrying kinda baffles me.

Maybe what you are doing different is what causes the difficulties.

I think I would do my job and NOT criticize what the person handling the care 88% of time is doing. I would probably ask how and what they are doing so I didn't disrupt the routine.
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Reply to Isthisrealyreal
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First of all, you are to be commended for being a conscientious care giver. Your frustration is understandable and to a degree reasonable. It appears that routine and continuity of care is vital to the patient's mental and emotional state.

The cousin, may, perhaps, seem content to feel that whatever assistance she can give and the time she spends assisting her family member should be of some value to all concerned. Trying to adhere to your specific instructions (which, for a person without any medical background) might be over the top for her to be able recall and to execution in a technical way. Never presume or assume to know why the cousin, who spends time in the home helping (her family member/ your patient)- has not or does not follow your instructions on how to safely transfer... Does the cousin understand that your instructions help her to safeguard her own back? Proper body mechanics used to safely assist patient from point A to B is beneficial, that's a fact. Note, though, that it's not your place to judge the cousin's motives.
Commend the cousin for her time and willingness to assist.

As for the patient's erratic behavior, is it life-threatening? She will not die because of a change in the routine, will she? Reassure her, when you arrive, how good it is to see her again; how important she is to you; and your desire to assist and support while she is under your care.

In conclusion, don't take yourself too seriously. Find satisfaction in doing the best you can do to help your patient and to be at peace within yourself.
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Reply to Mazylyn
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You are a trained professional with experience. This “cousin” is a willing family member volunteer (?) caring for the elder. Perhaps she doesn’t know how to do the physical transfers or how to physically move this person safely. There is a lot to being a caregiver as you know. She is there, perhaps she needs some training, with you there, to become more confident in moving the elder. What you are doing isn’t easy. Stay strong!
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Reply to Carolisalone
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Don't let the perfect be the enemy of the 'good enough'. And that judgement of what is 'good enough' for an elder varies quite a bit.
When you return after 3 days off, can you tell if elder has had food to eat, had toileting hygiene, changed clothes, etc. If elder lethargic, or having red pressure areas on skin (on hips, shoulders, and tailbone - most likely areas if she is in bed for prolonged periods of time without repositioning). That would be neglect that causes risk of injury. and a reason to take action.
OP you are giving the very best care you can for this elder, and that is a great gift. Not everyone can give that kind of care, either for a patient or a family member. It would be a shame if you spoke up to cousin with good intentions,, and it cost you your job - as that would also be a sort of 'harm' to the elder.
Remember, elders can be much less cooperative for family members than for non family helpers who are caring and kind.
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Reply to Clairesmum
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BurntCaregiver Jan 17, 2022
Clairesmum,

You are mistaken about red areas and even pressure sores occurring being due to neglect and risk of injury.
My last client had a pressure sore on her tailbone area. She was immaculately kept. Bathed daily head-to-toe, clean clothes, exceptional skin care daily, never left in a wet or soiled diaper, and repositioned every 2 - 4 hours on a 24-hour care schedule. She even had a special air mattress on her bed that inflated and deflated to take pressure off different areas of the body. She still developed a pressure sore. The second I saw it starting I had at-home wound care come.
So you can't really tell if a pressure sore is proof of neglect. The wound care specialists who came for my client mentioned how exceptionally well kept she was.
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I understand completely your frustration and concern but there really is nothing you can do. It seems you are the real caretaker and your client is fortunate to have you there four days a week. The cousin chooses not to follow your routine, & has replaced your routine with one that serves her own schedule. Your hands are tied. You are so valuable, and may God bless you for the time you have with her and are making her feel loved and cared for. We are always here when you want to vent!
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Reply to NYCmama
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You could report cousin to the authorities Adult Protective Services if you feel abuse is involved - to the degree they would investigate.

* I certainly understand your frustration - and speaking as a person working with elders I PERSONALLY THANK YOU FOR CARING and all that you've done. This is quite an accomplishment. You are remarkable.

* I wonder if (and why) the cousin is 'caring' for this person?

Cousin may be depressed herself, un/disinterested in the elder - simply doesn't care, doesn't have the skills / intellect / willingness to do what is needed.
Who 'hired' or put the cousin in this role / responsibility?
Can someone else take her place (another a family member?

* Have you talked to the cousin?
told her how you work and what you've accomplished with your routine?
ask/ed her to model your behavior/routine?

* Are you through an agency or independent? Not sure if this makes a difference either way. How you respond to cousin, if you do, could / might jeopardize your working relationship.

* Sometimes we 'just' need to let go (and let God) and do the best we can. We cannot control another's behavior and esp when family is involved. We can only suggest / encourage / model healthy behavior for the elder. . . as you are doing.

Gena Galenski / Touch Matters
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Reply to TouchMatters
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ckrestaurant1 Jan 15, 2022
Sounds like the cousin is getting free room and board with the agreement to take care of the senior or her Aunt...if this is true..the most important is that this senior in her home deserves the best care but I see that liveins are hard to find...as well as its a job that is for the safety of the elder...no one wants to do it ,lets be honest here...the nurses are paid 35 dollars per hour,homecare is 15 dollars per hour....judgeing the caregivers quality of care is also suspect....u do not know if dementia patient is acting out or for real....whoever owns the home should be in charge and be providing the patient quality care its a 2 way street.
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If you feel your client's health or safety are in danger, you need to report this to the authorities, Your client may be experiencing abuse from family.
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Reply to Taarna
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OP surely doesn't mean uninterrupted sleep around the clock, just that the family carer doesn’t do the work required to keep the elder up and active, as does OP. It may be that in the week, family carer does get a decent night’s sleep, just because the elder has been up all day.

OP is concerned that the lack of weekend routine is not good for the elder, and OP may well be correct. However the current way to go may be the best that the family carer can manage for financial and personal reasons. It might help if OP tries to explain the issues to family carer, non-judgementally, without pushing for change, and accepting that this may be the best option available.
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Reply to MargaretMcKen
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I second garden.

you really have no authority to tell cousin how to do her part of it. You do have authority to go to whomever signs your paycheck to say that the mother is so much more stable when your routine is followed.
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Reply to PeggySue2020
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Who specifically hired you?    I would try to work out this situation with that person, as he/she would apparently be the person in charge.
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Reply to GardenArtist
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yahima wrote: "...on the 3 consecutive days I am not in the house, the cousin will just let her sleep all day to (presumably) not have to deal with her."

How is that possible? Do you mean the 85 y.o. patient was in bed for 3 days straight without food, water, diaper changes or bathroom breaks? If the patient was fed, given drinks and cleaned, then the cousin at least took care of the basics.

It would be ideal if the cousin could hire you or someone else to come the other 3 days. Perhaps, you could bring it up by telling them you would be available if they need/want. You are a good caregiver. I would hire you in a heartbeat.
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Reply to polarbear
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yakima, sounds like you are doing an excellent job as routine is THE best way to help a person who has dementia. It worked great for my Dad.

The family member who helps out pretty much the 2nd and 3rd shift, and the other 3 days around the clock, is probably so exhausted, plus her working part-time. She probably is so zoned out that any advice anyone gives it doesn't register with her. I wonder when was the last time she had slept through the night.

You could broach the subject to see if instead of 4 days, if you could work 5. If the family member says "no", then the subject is closed. There could be a budgeting problem. I hope the family member is using the client's funds to pay you, and not digging into her own pocket.
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