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He thinks he is just fine! This is far from reality!!! He is physically independent but his mind is deteriorating...


He does not cooperate with the lovely, competent Caregiver we have. He is quiet, withdrawn and does not want her help.


If I let her go, would my husband cooperate with the new one? Probably not, unless she leaves him alone. But, is that realistic?


His judgement is weakened by the progressive dementia. He cannot be left alone, even though he does not know that. What would you do?

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Wow! Your question could have been written by me. My husband also has aphasia-dementia and refused help from several caregivers (male and female) at the beginning. My husband was a medical doctor, so I told my husband a fib that these caregivers are medical doctors in their home countries and are here to further their medical training. It seems to work - he is ok with them most of the time, with bouts of anger here and there. I made sure the caregivers, their agencies, and our own doctors know of my lie so that everyone is on the same page.

I use two caregivers from two agencies because I want to have a larger pool of backups if needed. Sometimes, they serve as each other’s backup. That way, my husband sees the same people all the time. If you use just one and he/she is ill, you are up the creek w/o a paddle.
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Reply to Worriedspouse
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Godguidesme Mar 8, 2019
Dear Worriedspose,
As you said: “ wow” ! Our situation is sooooo similar!! Thank you for your response.
I have Long Term Care Insurance and I also decided , like you, to
have two Caregivers instead of one Live -in. It works well as sometimes one cannot come. I do not accept
substitutes because as you said, our spouse needs the comfort of familiar faces every day.
My husband was a Physics University Professor. He thinks he is still the same, except for his difficulty speaking. He does not
realize, and we do not tell him that
he has dementia and his mind is deteriorating... Painful to witness.
I do know that they are lucky for the fact that WE are searching for answers to help them
preserve their dignity and stay safe.
Sending you and ALL Caregivers a hug and a pat in the back for managing such a complicated, horrible disease.
PS Don’t forget to do something special FOR YOU today and every day. 🌹
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Don't let her go. What possible guarantee could there be that another person would do any better?

What does the caregiver feel about the daily routine with your husband?

My mother, similarly, could not be left alone (falls risk, plus vascular dementia) but resented intrusion. Our very experienced main caregiver would sit quietly in a chair and read, and then when mother went off on her travels would accompany her without commenting or intervening more than necessary. Mother would say "I'm fine, there's no need to follow me" and Liz would say, for example, "no no, I was going this way, never mind me" and continue to follow her to the bathroom.

So if there is something similar going on, perhaps you could reassure the caregiver that you're not expecting miracles from her, and she shouldn't bang her head against the wall trying to engage your husband more than he's willing to be engaged.

Discretion is the better part of caregiving :) Especially when you have a reluctant caree.
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Reply to Countrymouse
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Thank you Polar Bear, Cwillie, Sunnygirl and Country Mouse,
I appreciate you taking the time to respond. What a caring group we all are!! You are right. I need help too.
I decided to keep her since she is also wants to stay and assist us.
Thanks for your encouragement!
I found an article on this website
aging Care.com, called
Handling Dementia outburst, written by Marlo Sollitto. He explains the reasons for rejecting the Caregiver’s help ( desperate need to be independent again) and suggests redirecting the patient, keeping a positive demeanor when dealing with them and always showing them that you are “ on their side”
Most, eventually forget that they did not like someone...
I held my ground and I told my husband that the Caregiver is here to help me. To my surprise, accepted it.
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Reply to Godguidesme
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No, don't let her go - she is there for you as much as for him, and you need respite. But... perhaps ask around to see if there is a male caregiver you could try out too, maybe he would respond better to that.
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Reply to cwillie
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We have the same issue but it would be the same with anyone. Thankfully our care giver understands it is not personal and will not allow it to hurt his feelings. We learned early on to not tell him what to do. We suggest and wait - typically he will do it when sufficient time has passed and now it’s his idea. This is the toughest relationships to maintain and the caregiver if they have dealt with dementia in the past will understand that agreeing with the patient unless it is a medical necessity- is key to building the trust they need to influence behavior. Hang in there - God bless
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Reply to spoling01
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Godguidesme Mar 8, 2019
Dear Spoling01,
Your words are wise. Thank you for responding. We are growing in knowledge as the disease grows too...
My husband does give orders to the Caregivers to take him to the Mecanic, to the Bank etc and he does not want them to help him.
He cannot communicate...
I agree that their relationship must be maintained, so I spoke with them ( they both have experience with Aphasia) and told them that I need to know anything out of the daily routine so I may guide them.
I must monitor the situation closely.
I am doing “ damage control”.
I told them to avoid conflict and confrontation. To be GENTLE, yet
POWERFUL
God bless us all!
(5)
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Keep the caregiver. Stop assuming things about your husband and tell him the truth, calmly and firmly, then he may understand what's going on. Then repeat. Because of his dementia he'll not remember what you said. For your sanity's sake, keep the caregiver. Don't get a new one as it'll only confuse & upset your husband more.
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Reply to mmcmahon12000
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I too held my ground and said the caregivers were here to help me, early in the disease when my husband didn't need physical help, just supervision (and they DID help me--they ran around cleaning, cooking, shopping, whatever needed doing). As he gradually declined he became more and more accepting of them. One day he told me he knew one of them from college. Then it was from high school. Now I think he thinks we're all his kids, or that we work for him, maybe. A loving caregiver is worth their weight in gold.
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Reply to superstring
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Keep Her...my father was the same way, he swore at everyone who ever came to help him, but the next day, he smiled at them and was happy to see them. This is what happens....he may change his mind about her....just tell him that she is here to help him, perhaps if you are in the same room as she is with him, he may feel more comfortable, that's what my mother did.
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Reply to Chemoangel1967
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I would not change. Remember that you are the one thinking clearly here, not your husband. Good luck to you and try not to second guess yourself like I do. ;)
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Reply to Queenofmean725
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When I first hired a sitter/driver for my Alz. mother, it took almost 4 months for her to accept and get used to the lady. The first month, my mother was fine with the help, but then she adamantly refused it. Then a couple weeks passed by before I tried again, this time, she accepted and welcomed the lady. I was so glad that I persisted.

My suggestion is to let your father get used to the caregiver's presence. Don't insist on him accepting her help. She can step in when he really must have help. Gradually, he will be more accepting.

My mom now thinks that the lady I hired is her niece and is always so happy when she comes.
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