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He is mid-stage dementia, she has no dementia at all. He is very sweet, gentle, easy to please, cooperative, etc. She is very controlling and obsessive about routines and details. She has been verbally abusive towards her husband, and has bullied him when he didn't want to take his meds or go to bed on time (her time). Often she won't let him drink water if he hasn't waited his 20 min, eat until it is 'meal time' or go to bed early. She wakes him up in the morning, even though he is sleeping peacefully. I can barely be in their home with them any longer. Hospice has just come on-board this week, but of course they know nothing of her behavior towards him. Do I tell the hospice team? I am thinking of quitting because this stresses me out so much to stand by while she makes him anxious and scared!

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Say what you see. Do not use words like controlling and obsessive, but do document and report that, e.g. "Mr Smith reached for his glass of water and Mrs Smith took it away, telling him he had to wait a further 18 minutes." And don't forget to add, if it's true, that exactly 18 minutes later Mrs Smith stood over Mr Smith until he had drunk 150mls of water.

Do you know what she was like before she became his primary caregiver? It may be that this is her way of taking the best care of him that she knows how to take, now that he needs direction in his life.

We all have to bear in mind that this couple has been together for xty years, and we have known them for five minutes by comparison.
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If it were me and I was coming in darn straight you better tell me what I'm getting into! Also you can ask the hospice person if they want to know. You don't need to say "she does this she does that" say "I have observed this.... I have observed that..." I have been in this situation and been put on the spot. Let me know so I can be prepared for it!
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Cici22 Mar 2023
Good directions! Thanks!
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Cici22, that husband and wife relationship pretty much sounds like my parents [90+]. Dad was the bread winner and Mom's job was to take care of the house and me. Thus, when Dad retired he stepped into Mom's "place of employment" [the house] full time. It wasn't an easy transition, but eventually they worked it out.


When it came to health matters my Dad wouldn't have lived so long if it wasn't for my Mom nagging him to go to the doctor, take the meds, etc. Mom was right in the room when my Dad had physical therapy at home, but it made the therapist uncomfortable as she could feel Mom's eyes looking right through her. Mom never liked younger women around my Dad. Dad was easy going and never complained, in fact he probably viewed Mom's nagging as love.


Another thing to remember, the wife is scared. Hubby is on hospice so that means he could pass shortly. She's afraid that at her age, she will be left alone. Thus, she could also be venting.


How does the wife act toward you? I know my Mom was very resentful of having another woman in the house doing household work that my Mom felt that was her own job to do. Heaven forbid another woman cook a meal for my Dad. We had to let go of the caregivers after 3 days. Mom didn't even accept a male caregiver [both my parents were fall risks], so it more of a denial of Mom getting older.
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AlvaDeer Mar 2023
freqflyer:
Exactly. While she was GENTLE about it, long after my Dad just wanted to go for the "last long nap" as he called it, when he had a hard time getting up in the morning, when he was just so ready to go and could say so, MY MOM would have none of it. It was up. It was sit at the table. It was you WILL eat breakfast. It was get on the scale. And on you go. They were the greatest love story I know and she didn't want to lose him, even tho he was tired, and they were in their 90s. He kind of "snuck out" when they were sitting watching Larry King Live (Monica Lewinsky was on). Just took a deep breathe and was gone.
It is always hard to judge these marriages, and often they have followed the same script for many many years.
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It's always good to be transparent. If you enable wife's bad behavior, you become part of the problem.

When I've informed health care workers of issues or situations they might not have observed for themselves, they've been grateful.
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You are free to and should tell medical personnel what you observe as a caregiver, especially if what you are observing seems in any way abusive, or if the patient seems afraid.
You are in fact a mandated reporter, so reporting this to the RN or Social Worker in charge of this hospice case if required, whether your report is made to family, APS, medical caregivers or all three.

Do know that when you as a caregiver are speaking to others you are speaking of your own subjective observations, so it is better to simply describe (and not to diagnose) the activity , not your own feelings about it. For instance "His wife seems to want him to follow certain schedules for eating and sleeping while he seems to want only to rest." Adding in your own words like "bullying", "obsessive", doesn't help. This may have been their relationship and routine throughout a long marriage. What IS important is whether or not your PATIENT is expressing alarm or fear of his wife and your speaking with his medical team will alllow them to assess that which they are professionally trained to do.
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Cici22 Mar 2023
I hear what you are saying and agree regarding reporting the facts and observations versus my feelings. However I cannot think of neutral term that would work in place of bullying- as that was exactly what she was doing. Physically-aggressively intimidating him ( pushing him with her walker) while verbally abusing him. He pleaded with ME to make her stop.
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I would ask to meet (privately) with the nurse or care coordinator just because I think it is important that everyone on the care team is on the same page, IMO every agency should include the people already on the scene as part of that team. An authority figure - the hospice nurse or perhaps the doctor - may be able to get through to the wife in a way you as a paid employee can not. But I wouldn't count on it making a difference.
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Cici22 Mar 2023
Thanks- I spoke at length with the hospice social worker who promised confidentiality. She was very supportive and glad I shared these things about this situation.
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I have to agree, maybe this is how they have always been. Not going to change that now. But I would warn the nurse.

Dementia alone is not the reason Hospice was brought in. He has to have something else wrong with him that a doctor feels he may be gone within 6 months. If still living at that time, then the client will be reevaluated.
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97yroldmom Mar 2023
JoAnn
My DH aunt is on hospice long time now due to dementia. The dementia has made her bed-bound but she was on hospice before being bed-bound.
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I would say something to the hospice staff.

As Countrymouse has suggested, I would be very careful with how I worded my concerns. Otherwise, you are going to sound like a busybody who is interfering in the husband and wife’s personal relationship.

Watch your tone of voice. Express your observations very matter of factly. Then allow them to witness the behavior for themselves. You don’t want to appear as an alarmist.

The wife may not show this side of her personality to hospice at first but if this is her core personality, her actions will speak for themselves sooner or later and the hospice staff will see what is going on.

Finally, if you truly aren’t comfortable working there and you are thinking of quitting, do so. Don’t go to work at a job where you are miserable.

Do give the situation a chance to improve before quitting. Things aren’t always as they seem.

Plus, take into consideration that the wife may need more time to adjust to this situation and is dealing with her circumstances the best way that she knows how to.

Best wishes to you and this couple.
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