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My sister, lives with Mom who has ALZ. She is still ambulatory but forgetful and somewhat passive. Mom will often go back to bed because she is unsure what to do next. The problem I have is dealing with my sister who is very bossy when it comes for me to take care of Mom. My sister is insistent doing things her way. She is often condensing and talks down to me. We once had a great relationship but noticed that it is rapidly deteriorating. Any suggestions?

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Simon, from your post it sounds like you and your sister share in the care of your Mom, and that your Mom lives with your sister. How often do you go over to take care and how many hours?

Why I ask is that the caregiver who is around the person 24/7 has a better understanding of a person's Alzheimer's, thus certain things should be done a certain way to make it a routine for your Mom.

Your sister could be condescending because she is burning out from caring for your Mom, that is normal. Any way you could give her more time helping with Mom? Just a suggestion.
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Do you take care of Mom in your sister's house, or does Mom come to visit in your house? Does your sister hang around while you are doing the caregiving? How often and for how long does this occur?

If Sister hired a caregiver to help out she would feel responsible for telling her what to do, when, and how. You are not a hired caregiver, for heavens sakes, but the woman's daughter! Still, I can kind of understand Sister's "I'm in charge" attitude.

With a little more detail about the situation, I'm sure you will get more detailed responses.
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I have noticed that bossy kind of attitude with a few caregivers that I know. I think they get so focused and exhausted that they go into this kind of state. I don't think it's intentionally that way, but a result of having so much responsibility for long periods of time. I actually don't think it's healthy.

If she's too bossy while you are in her house, I'd just listen to her, smile and do it her way while she's looking. If it's in your home, I'd invite her to take some time off and take a drive, nap or shopping trip while you care for mom and do what I thought was best. I would keep in mind that she may have some helpful tips though. If she's telling you that mom can't chew certain foods well, I'd heed that info to avoid risk or if she's telling you that mom can't handle the cat, believe her and keep the cat away. If it's a safety or health issue, I'd try to see it her way.
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The most essential thing about caregivers is adhering to a very strict routine. Routines with bath schedules, eating, medication, exercise and the same is done day in, day out...this ensures all of the needs are taken care of. Any deviation from the schedule can result in clashes because caregivers have to live this way in a very regimented way. However, the caregiver should also see your visit as a golden opportunity to shift some of the responsibility on YOU -- YOU do the baby sitting. If you are not willing to help then don't even bother visiting. Caregiving is done around-the-clock, 24 hours a day, seven days a week-- and not just sometimes. In fact, the stress does not even end at night--the person with Alzheimer's can start wandering in the middle of the night and they are at their most dangerous to themselves when they start wandering.
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You sister HAS to do it her way because she has her own system that works for you and deviation from a very set schedule can be very upsetting because the person with Alzheimer's will not have some need met. The very moment the caregiver wakes up it all starts up again. Meal schedule, meds schedule, brushing teeth schedule, toileting schedule, bathing schedule, exercise schedule..you get the idea? Around the clock it is regimented because it HAS to be. You can help your sister by offering to help. Offer to babysit. Offer to help with the daily care. Listen to her and obey everything she says adhering to the schedule--because unless you care for someone around-the-clock seven days a week you will never understand our world. The stress and responsibility is around the clock and it does not end at night. Offer to help. If you don't want to do any of the work then do not visit you are just a nuisance.
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I took care of mom at home for 10 yrs. She's now in Hospice.
One thing about dementia/ Alzheimer's is routine. They can thrive very nicely in their very small world but not well at all when disruption. We want to treat them to lunch, or have a nice birthday party or a big family holiday party for them.. But it's really for family.
Anything that is changed is a huge deal from them. Throwing them a big birthday party is not fun for them . They are usually at an unfamiliar place with people they know they should know but can't remember who they are . This will also include family they don't see regularly. The caregiver can use a night away but it's not fun for someone to come in all happy and loud and talkative. To mom it was just a beehive of words that don't make sense, then they get really agitated and this agitatatiin lasts for days. The can't still do the things they could like working a puzzle, playing cards asking do you remember when questions. The don't and it just upsets them - for days.... the visit with 4-5 people with 2. Small children becomes ( after 3 or 4 days of trying desperately to figure out who you are , who all the others were and who the kids were and where you were) a " horrible crowd of people with at least 20 kids running around screaming and it was just aweful. So then the caregiver try's to tell them it was just your daughter and her kids and she tells her she's crazy so one little get together turns into a week long nightmare for the caregiver.
Best book ever Planet Alzheimer's . Get it.
You loved one has moved there. If you want to be with them you have to go there.. the caregiver lives there and let me tell you if you don't live there you are lucky. Listen to them if you are gonna be around because if you don't live there you have no clue. Cut her some slack cause the rules on that planet are not the same. ask what you can do for her and don't criticize any thing . Do it her way because she knows what's best for mom. Or you move to planet Alzheimer's for a few years and let her escape. There is no excepting for your mom.
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I agree. Maybe you could just try to help her and do things her way. And try not to take it personally, and as long as your mother is being taken care of, that's all that matters. And don't fight in front of your Mom, it would upset her.
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Make sure you have all your mother's legal documents reviewed. Find out who is the POA and Health Advocate. Get good legal advice about who is in control. With this information you can decide what course to take.
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I don't think it is a matter of doing things your sister's way as much as it is doing it the best way for your mom. If sis is the primary caregiver then she knows what works and what doesn't. i would put mom to bed and sis would come when she was almost asleep and lay beside her and talk about her day. Next morning i would hear mom was up all night, wonder why? Tried to explain that once mom is almost asleep just to lay there quietly, was told to stop telling her what to do and that she would do it her way. Holiday gatherings were a nightmare. Too loud and too many people. I suggested a different family come over 3 days, NOPE, no one would do it. Finally my mom just couldn't take it anymore and asked me to take her to bed. Every holiday after about an hour with all there, I would take mom to bed, if not, she would be so out of sorts for about 3 days that I felt it was just not worth it. I can't impress upon you enough how important a schedule and routine are for the alzeheimers patient. Please try to swallow your pride on this one and do it your sister"s way. Good luck
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All good answers above. Any change of routine is a catastrophic event for an Alz person.Very said.You can try being Cheerful and Stupid with your sister as the late Dr. Joy Browne suggested.Not trying to make a joke because this is a serious situation.
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meant very sad not said
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If your sister is the primary caregiver of your mom, then both are used to doing things a certain way and they have a routine. You come in, and want to do things a different way, and it will upset both your mom and your sister. Rather, ASK first how something is done, then take your lead from your sister and you will find both the relationship between you and her will improve, and your mother will be less stressed (having you two fighting over her care). This situation is not going to last forever, so make the best of a bad situation and don't let your "macho" man feelings get in the way of what is best for your mom.
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Excellent answers to this question! I am mom's caregiver and my brother says the same thing to me. Since he is not dealing with any of mom's care I just tell him I'm doing my best and if it isn't to his liking he can take over. (No chance there) He hasn't called me since and has reduced his calls to my mom who waits by the phone every night for his 1 to 8 minute call.
Keep reading these suggestions for they are on point for you.
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First thank your sister for everything and often. She should respond in kind to you as well. This journey is so very very hard. It sounds like your mom is living with your sister. She has the very heavy load of primary caregiver. There is an old saying "Too many cooks in the kitchen." First it is your sister's house that has been invaded. Second this is NO walk through the park! This is HARD!!! It totally sounds like your bossy sister has reached critical mass. All of her boundaries have been violated. She is living, breathing, and thinking at warp speed. It is one thing to come into someone's house and help and be able to leave and get away from the work and the constant flight or fight response that your sister is living in every second of everyday. While your mom has ALZ these dieases progress every second of everyday. It is rentless. Your sister is on automatic. ALZ and the 26 other dementias and Parkensons are long term conditions. They are progressive. It is hard for people to understand that everyday they get worse and need more. A person becomes unable to do anything but react in a constant five alarm fire mode. She really needs an extended break. A cup of coffee with independent conversation. A movie with friends. She needs her life back. No offense is intended here but I can tell you from my experience I forgot how to live because all I did was work, work, and work. I reacted. I was so overwhelmed I could not even think anymore. These dieases are not anything like the TV commercials. These dieases take the person we knew and loved and cherished and leave the worse behind. Suffers of these dieases are hostile and ferral. They are not gentile seniors who just simply put on the mismatched pair of socks. I see so many posts about family members complaining about getting their patents or grandparents check because they are living in their homes and relatives think they are living it up. Please come take your sick relatives home with you and thier check because the price the primary caregiver is paying is too much. I did this all by myself and listened to my husband's family gaslight me. When they finally got him in their home because I had a stroke and hospitalised for exhaustion, they chemically resyrained him, shoved a catheter and escopy bag on him and kept him zoned out on morphine and ativan. And told everyone he was getting excellent care. They even had surgery done on him for bone spurs on his feet which for years he would not do. Yet he was bedridden when they had the surgery done. Somehow the care for our loved ones with these illnesses needs to be addressed and quickly. I was never able to find a workable solution. My husband passed in January 2016 and his cousin listed his marital status as divorced. We were still married. It is still a big mess. All I can say is talk to your sister and your sister needs to talk to you. Dementia patients need a controlled environment and routine. It is so hard to see your loved one that looks loved one but they are not there anymore. Their life is so compromised and the family members are taken hostage because we know them and love them and it makes no logical sense. The family members without these dieases are suffering perhaps even more but who really knows. Take a breath. Be still. Talk to each other and find the time to hold each other and cry. This diease has the family too. No one sees the caregivers. Only the illness. Please be progressive in speaking out for change for assistance with our seniors. One day we will be in the same place. Caregivers God Bless them...Have A Right To Life. As for me. I would never do this again. If I was diagnosed with Parkensons or dementia I would opt for voluntary euthanization rather than involuntary euthanization which is how most of these things end under the guise of Hospice. I believe in quality of life not quanity of life. And it should be the person's choice. I will keep all of you caregivers in my prayers. Change is so needed. I did learn how to live again but the costs to my health can not be paid. The damage is done. Grace and Peace.
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I was the caregiver...when grands, etc would visit they would give me a hard time...like once with cane at 98 my daughter came and took us to a nice hotel for a break her heart was in the right place but when a kind of high ramp led to restaurant and I said we needed to go to side not far flat door...she said jeese mom let G on have a life....well G mom had a bad heart...duh....so eventually I was less hurt as I learned that when they come once in a while and feel guilty and want to feel they did something to help...they try to help in the wrong ways....not to say that is you...what is great is the support I see on here in answers for the main caregiver which I never had....so please try in your mind to trade places and maybe drop in motions at the door....God bless!
...
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Sorry that should have said drop emotions at the door...cannot figure out how to change it
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Simon, I am a little confused - you say that your mom lives with your sister but you describe her as "bossy" with you. Is it "bossy" or criticisms of you in general?
RosePetal
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I understand this situation--Mother lives with my brother and his family. He is VERY "in control" and in our situation, mother can make her own decisions--or used to. Now she always says "well, I'll have to ask R if that is OK". And she plans EVERYTHING around his work schedule. He helicopters around anyone who comes to visit--except me, I guess I should be grateful. I think he is gaining somewhat, financially, from mother living there. It is really time to be thinking about an ALF, mother and I spoke about it yesterday as she is getting much less able to do for herself--she said "R" would NEVER allow it, although one of her best friends is heading to one soon, and she would LOVE to be close to this friend. We all are aware of brother's "bossiness" and just roll with it. He has her care 24/7 and the little we are able to do to help is not very much. So we just do things his way. Mother is content enough. "R" is VERY critical of the other sibs, when I see him, I am sure he is critical of me.
Perhaps the "bossiness" is simply exhaustion--I can see how upsetting mother's normal routine is to her, if that happened more than once a week, it would really be difficult.
Maybe try talking to sis, I've found that a lot of what I have believed about situations about Mother are quickly cleared up with a face to face conversations. (This is NOT a time to text--you need to TALK!)
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I'm not quite sure what it is that you're asking. Is the problem that your mother goes back to bed? When you take care of her, do you bring her to your home or do you take care of her in your sister's home? And what, precisely, is she bossy about? Keeping a routine with someone with Alzheimer's is important---disruption in that routine can really throw them off kilter. Your sister probably has a very good reason for telling you what & how to do things with your mother----if you mess up the schedule, she will go back to your sister's house with a totally disrupted schedule & getting your mother back onto the schedule will be quite difficult. Instead of becoming defensive, ask your sister what she does, when she does them & how she does them for your mother to keep your mother on a schedule & continuing with her routine. Just because you think the way you do things is fine, it may not be fine for your mother's routine. Working together toward a common goal is far more productive than blocking each other's actions. Take care of your mother TOGETHER.
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Why doesn't ur sister take the time ur there to do something for herself. Always being in control can be tiring. One good reason Mom iss in AL. I still tend to control and I could give that up if they didn't have a recent turn over so I have to leave notes all over again. Each aide does here own thing which makes more work for me since I do Moms laundry.
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Simon: Suggestion-tell your sister "when you can talk in a civil manner to me and less acrimonious, I will respond. Otherwise, I will not."
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Simon the last thing an Alzheimer's Sufferer should witness is friction, or tension
or feel You and Your Sister is not getting on. That's what We mean when We say here on this Age / Action Site, I PUT MY HAPPY FACE ON. An Alzheimer's Patient must always feel Love, and Calm and happiness.
It seems to My Your Sister is stressed, and probably suffering from sleep deprivation....so.....give Your Sister plenty help and support Caring for You Mom as believe Me this journey is cruel but it will be over sooner than You can imagine, and as Ferris1 said ASK YOUR SISTER HOW SOME THING IS DONE, THEN TAKE YOUR LEAD FROM YOUR SISTER. You will find You and Your Sister will become closer again, and once Your dear Mom feels the calm atmosphere in the home She will not want to go back into bed again. Simon You are a good decent Man, and I must say I admire You greatly, since far too many Men leave all the Caring to Their Sisters, and that's so unfair. You have shown just how much You Love Your Mom and Sister.
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All excellent answers on this post. Your profile says you take care of your mom but the question implies that your mom lives with your sister. So, as the primary caregiver and my mom lives with me, the routine is what it is as I adjusted and pivoted as the disease changed my mom and her needs. No one but me can understand mom's needs. However, even as much as I explain the routine to paid aides and family, I guess it's human nature to think you have a better way. Then mom pays the price and I pay the price. Routine is so very critical to the person living with dementia. Do not under mind the routine. A person living with dementia knows when they have had a good or bad experience in their day. The behavior of the person changes with the experience. Whether it's good or bad the behavior can last hours, days, weeks, and I have witnessed months. If your sister is the one living with your mom then you need to have respect for her and what she is doing. As long as what is going on is safe for your mom, then it just needs to be left alone. As hard as that is, it is in your mom's best interest, as well as your sisters. Good luck and try to find a new level of understanding and compassion for your sister. It's the dementia changing everyone in it's path. Take care of yourself and help your sister take care of herself.
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DonnaF that's a wonderful post You have sent to Simon22, and yes it is all about routine, and keeping Mom safe, and feeling secure. And You are so right, NO ONE KNOWS THE NEEDS OF THOSE BEING CARED FOR, as well as the Primary Caregiver. Believe Me All Care givers when I say this, I'm very sure We have All wondered WILL I EVER GET MY LIFE BACK AGAIN, such is the cruelty of this awful illness...and the answer is YES WAY TOO SOON. While You may think the journey will never end, it does when You least expect it, as death comes like a thief in the night. While Our Journey came to an end, Mothers and Mine on June 21 2016, it hast thought Me that only truly special People can accept this challenge of being a Care giver, and I think You are All truly amazing and wonderful People. God Bless You All, and Your Love One's Who You Care. John Joe.
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