Our mother has Lewy Body Syndrome, the condition that’s similar to Alzheimer's but features hallucinations, even hearing voices. I try to ignore them, but my sister encourages whatever Mom thinks she sees or hears. I've told my sister countless times, "What if Mom thinks there really is a taxi on the corner and wanders into the street?" She says going along with her delusions is better than arguing with her all the time.
She treats Mom’s illness like it's a game, and that infuriates me! Other aspects of her "caregiving" drive me nuts, too. But since she's with our mom all day and I help out at night, on weekends, and holidays, I feel like I have less of a say-so.
Shouldn’t we try to be in agreement about caregiving decisions?
Yes, ideally, family caregiving decisions should be agreed upon. Honestly, though? That rarely happens. It’s really okay if the two of you have vastly different caregiving styles. There’s no one way to do this.
I wonder: Is this really about your mom, or is this a power struggle between two sisters?
I know you’re concerned about your mom’s safety, and rightly so. But arguing with your sister isn’t going to change her mind. She’s probably going to have to get a scare before she realizes how serious this can be. Meanwhile, do all you can to eliminate wandering dangers. My mom had Alzheimer’s and was constantly trying to escape -- we nicknamed our house Alcatraz for awhile.
Here's one way to cut the irritation you're feeling that might surprise you: Start a gratitude list. Notice one thing every day that your sister does right and jot it down. Look for things like the way she makes you and your mom laugh, how clean and coiffed your mom is, the way she catches little things you miss, and how well she handles the doctors. Value her for who she is and what she gives. Without even trying, you’ll start feeling different about her.
Start referring to what you two are doing as co-caregiving. Act as if you’re already a team. Judge her less. If she doesn't see you as a threat, she might begin to realize that her approaches to certain aspects of care aren’t working. It's harder for her to budge while the two of you are acting like you’re in the Wild West, with guns drawn.
Maybe she embraces your mom’s fantasies because it’s far easier than facing the truth: that her mother is in so many ways, gone. Allow her to experience the grief and loss that comes with caregiving.
Our siblings bring out the worst in us (sometimes!) but they have much to teach us. It’s a bond as strong and as easily tangled as fishing line. Remember you can’t control everything. Find ways to celebrate what you have today -- your dysfunctional, chaotic, frustrating-to-no-end, and caring family. With dogged determination, this caregiving experience that seems to be tearing you apart can, ironically, bring you all closer -- if you let it.
oh, sorry, PS, mom's caregiver, i once had to look after an elder with dementia who'd be given a colostomy bag. because of her dementia, of course she didn't remember or understand the nature of the bag. she pulled it off all the time, because it felt strange or uncomfortable to her. i'll just leave you to imagine how that was. remember, people with dementia can't medically co-operate
this is for Mom's Caregiver. i'd certainly go with as much comfort as possible for your Mom and not the constant torture of invasive procedures. what is that doctor trying to save your Mom for -- better Alzheimer's?! it's the nature of surgeons to want to cut -- that's what they do. and that's great, when it's great. when other major issues are going on already, maybe it's not always great. don't be bullied into what the surgeon wants. be very clear about what all of your family want for your Mom. that's much more relevent in this case than any medical outsider's view. why don't you ask for a Hospice assessment for your Mom? If they think she's ready for Hospice, that tells you a great deal. In my experience Hospice never lies -- why would they? Death is never rare, they don't need the customers. If Hospice experts think your Mom is at a place where Hospice care is relevant, then they will ensure that she and you and all your caring family will be comfortable, helped, supported. A surgeon doesn't do that. don't be caught up in medical procedure pressure. it's not always about the patient. it's too often about conquest. elders already well on the pathway towards death might not be appropriate for invasive difficult procedures. trust your own wishes and judgment. and help your family members get real -- there comes a point where nothing holds back death. be some things hold back peace. go for family peace and comfort.
I am very thankful my whole family is in agreement with me on the decision to take my mom off chemo. She is 77 and has late moderate stage alzheimers/dementia. She had colon cancer last August found in her transverse colon at Stage 3B and 1 of 14 removed lymph nodes were affected too. The primary tumor also was determined to be aggressive. The doctor was pretty confident they got it all after surgery so we chose not to do chemo. He did go over with us the different types of chemo treatments and the chances of a recurrence within a year. Her check ups after that were cancer free until a PET scan in August this year showed new activity in 2 lymph nodes in the stomach near the liver. A colonoscopy had been done too but was clear. We chose to do chemo this time because of the active cancer and so she started on Sept.2nd once a week til Nov. 4th. On the 9th another pet scan showed one of the 2 tumors had shrunk til almost gone, but the other stayed the same and new activity showed back in the colon where surgery was and that's in the area where the tumor that's unchanged is at. The doctor wants another colonoscopy but we are all afraid of the risks that it could perforate her colon. Doc says it's a very low risk and so does the colonscopy doc, but we're still scared. What if it does or if something happens and she winds up on a colostomy bag? In her condition there's no way that would work with her. Her dementia has gotten alot worse since the chemo unless it's a coincidence that she's naturally declining. She's finally feeling the side effects of being tired and weak. She's off balance some so gotta really watch her. She bought a cane and enjoys that. Anyways, I have discussed with everyone that we need to stop chemo cause her dementia is getting much worse. The doc feels like there's a 1%chance or less it's cancer, but needs to know what's going on, what exactly is that new activity. I want to know too but afraid of the colonsocopy risks. Mom hates the prep for that and was upset he wanted it again. So..after hearing my concerns about everything the doc and I agreed we would stop for a month and see how she is after that. But,we all feel no matter what we'll stop because even if she beats the cancer she will still only decline from the dementia and from what I've heard and read, it's horrible too. I wouldn't want her to go through all the end of life stage that is so horrible. I'm making these decisions cause she doesn't understand most of it. She knows she's sick but doesn't really understand what it's all about.It's not a choice I thought I would ever have to make on how my mom should leave this world, but since I have to choose I feel very comfortable choosing to stop chemo and leave this in God's hands. I know too that she would say the same if she could fully understand. Today she couldn't get some words out and kept getting tongue tied trying to say what she meant then said to just forget it and why couldn't she just die. I've seen on the internet too that maybe he could tell what's going on in the colon with a CT scan or ultra sound. I will call him tomorrow and ask if that's possible. If it's cancer we will still stop chemo choosing quality of life. I strongly believe this is what she would want,too. Good night everyone and have a wonderful Thanksgiving!!
The idea of the gratitude journal was great!! I'm going to suggest that to many and use it myself when I need it. Terrific.
There are many different ways to handle dementia and your sister is practicing her own way. I dont understand why you think your way is better. There are doctors that say live in their world (dementia reconsidered the person first.) There are doctors that say keep them rooted in reality. I have seen people think that there are snakes all over their wheel chair. The aid not only beat off the snakes for the person but switched wheel chairs for a little while so that the resident could relax and get over that point. This worked better than the other aid that was trying to convince her that the snakes were not there. Nothing you can say will convince someone -- unless they are in the very beginning of dementia and can logic it out----that the snakes are not there. If you mother is going to wander away she will wander no matter what you say. First of all they might forget what you said 2 seconds ago and second if they are in the wandering stage the truth will not prevent them from wandering. I know one lady at my moms day care that tries to escape all day long. She must put on about 3 miles a day. The aids are forever telling her that her daughter will be back for her later. That does not stop her from moving at all times. I really dont think it makes any difference whether you try to keep her in focus or if you go along with her fantasy. She is in her own world anyway.
i can't believe so many people want to undertake the unattainable goal of arguing away someone else's experiences. no wonder caregivers get to so tired! they're holding back the ocean. acknowledging someone else's reality is NOT going along with it. it's just decent caring communication. and Lewy Body is not Alzheimer's. Lewy Body hallucinations are often agreeable and interesting and, unusually, the person even knows at the same time that they are not real and yet they see them. which is a huge difference from most hallucinatory experience. by the way, those dead people who come to visit, why not just give up judging. the old and dying in every culture in the world have visits from dead family members. it's a normal part of normal people's endstage experiences. be glad they come -- whether it's dreaming, or wishing, or actual or hallucinatory -- they come with comfort and reassurance. the hardest part of caregiving is when a caregiver tries to argue with someone else's experiences and reality. heck,-a-poody, folks, don't we caregivers have enough to do without trying to become Thought Masters too -- i know i do. give yourselves a rest, folks. blessings upon us all.
Sorry, one more thought. It is wonderful to do your best to redirect their thoughts. By ALL means, if you can accomplish that, it is definitely the first technique to initiate. However, it doesn’t always work. The mind of a person suffering with dementia can be tenacious and no matter what you try, they are on a mission that is extremely important in their mind and no amount of redirecting will work. Other than physical or medical restrain, you are helpless at times. The harder you try to calm them down, the more agitated they can become because what their mind is telling them is so real. It is at that point you need to speak with a professional about pharmaceutical intervention. My mother is in a dream state when she is sleeping and an agitated, dream like state when she is awake. I fought the idea of giving my mother drugs for a long, long time. Then I discovered it is kinder to give her something to help her mind relax, than to hopelessly continue trying to redirect her when she won't be redirected. They can become highly agitated and totally beyond all scope of reason. Do whatever you find works best for your loved one. Often it takes a lot of trial, error and what works one day won't the next. Make that what works one minute, won't the next. Most importantly, hang in there and take good care of yourself!! As time goes by and the slope of Dementia Mountain becomes more and more challenging, be sure and take respite time for YOU!!! Get out of the house, smell the roses and visit the world of normalcy. It is the only way you will be able to maintain sanity for yourself and continue to give quality, loving care to your mother. YOU are extremely important too!!! Don’t EVER let either guilt or love make you forget that!!!
I agree with all the above suggestions. We cared for my mother-in-law who had a form of dementia called CAA (cerebral amyloid angiopathy with leukoencephalopathy) for six years in our home until her death. I have been caring for my 95 year old mother for 7 years as she has slowly slipped down Dementia Mountain. She has been living with us for over a year now. Initially, I followed the theory that all hospital staff advises to keep them oriented to person, place and time. However, as I have watched the disease progress in two family members, (also have 85 year old father-in-law with us starting down the slope), I have come to the realization that there is a point where it only causes frustration for you and your loved one. The world they move into is very real to them and when you try to bring them back into yours, all you are doing is creating conflict for everyone. My mother has different visitors each time I come and go from the room, her mother, father, siblings and others who passed away years ago visit her every day, she needs to take the car somewhere, children or others need her attention, she has to get to work, or a myriad of other scenarios that are very, very real to her. Trying to bring her back to our reality only causes conflict, distress and resistance. It has reached the point the only way ~ other than physical restraints ~ I can safely deal with her unrest is with medications. Don’t be afraid to consult with your doctor about medications to make your loved one more comfortable. They too are suffering in their world of confusion. I used to try and keep her orientated to reality, but after a time, you begin to realize it is only more and more frustrating for both of you and creates way too much agitation for your loved one who is truly living in another reality. They can’t help where they are and neither can you. It is alright to let go, even though it breaks your heart and tears at your soul. As difficult as it is to watch a loved one digress to this point, you have to realize they are no longer in this world, but one that the disease process has created in their minds. All we can do is make them as happy, stress free, and comfortable as humanly possible, while maintaining a safe environment. If that means living in their world most of the time, then so be it. My daily prayer is that God will be merciful and not let my mother suffer with this insidious disease too much longer. Every now and again, I get a miniscule glimpse of the mother I knew, but, most days, I am simply caring for the shell that once housed my mother. Don’t feel bad or beat yourself up. Most of the time when I leave the room, I return as a different person. Sometimes she recognizes me as her daughter, but most of the time I am someone working at this resort where she is living. For a long time, I dealt with her feelings of not wanting to be a burden and she couldn’t understand why she couldn’t live alone in her own home. In her mind, her body is strong and she in invincible, even though she can barely stand and walk, let alone reason. It is so difficult when they are in the stage of not here, but not really gone yet either. They are cognizant enough to know the pain of dementia and it’s two edged sword. You are constantly fighting within yourself, do you try to keep them here when their mind is taking them somewhere else or do you enjoy their world with them? I found the kindest gift I can give my loved one is to enjoy the moments when they are here, then enjoy their other world with them while slowly letting go and saying good-by. Nancy Reagan’s book is so appropriately titled, The Long Good-bye. Each one of us has to walk the path at the pace that is best for us and our loved one. Allow yourself, your sister, your family and your mother to live in the best scenario for their situation. If you can reorient her without conflict, then by all means do so, but if you only find it becoming an exercise in futility, then join your mother in her world and make it as happy as possible. I wish you and your family many blessings. My thoughts, prayers and understanding are with you as you traverse down the mountain. May your journey still be filled with many happy and beautiful memories for all of you.
Aurora528's response is key in my opinion (and experience). Even when my father with Alzheimer's hallucinated--sometimes, so realistically that he had my husband and I searching the entire house for the "neighborhood kids who were visiting and playing somewhere in the house." When we returned and told my father we couldn't find them, he replied. "Uh...Oh, they may have left when you came." Validating, as noted in Naomi Feil's book, is important to maintaining a connection with your loved one and then being able to redirect his/her attention elsewhere. This builds trust despite your mom's LBD--an important ingredient in caregiving. And no, even though you are caregiving nights, weekends, and holidays...this doesn't mean your opinion counts less--especially, if you have a key suggestion. In this case, it's your sister's and your different approaches. I think if you continue your approach you may find it a little more stressful. Please reread Aurora's comment above. Also, consider Carol's comment re: the issue maybe being more about two sisters. Go along with your mom's beliefs and then gradually work to redirect her. Her brain does not have the ability to process reality as you and I see it--then again, who says, the way you and I see reality is really real? My best to you. Since your
As a support group leader for a Lewy Body support group I want to address the hallucinations and hearing voices. I have to side with your sister in regards to going with the hallucination. The best thing you can do is validate your what your mother is hearing or seeing. Then try to redirect the behavior i.e. change the subject, talking about what it is she sees for hears, etc. Your agreeing with your mother will only upset her because she can no longer understand the difference between the hallucination or reality. I would recommend you read a book called "Living with Lewy" by Cando Books LLC To Purchase The Book: Send the following information and $24.95 (Check or Money Order Only, No Cash, includes shipping) (Regular Price $26.95) to: Cando Books LLC P.O. Box 9 Boyne City, MI 49712 Email us at: cando.books@yahoo.com Copyright © 2009 Amy J. Throop & Gerald S Throop Another good book is called "Validation Breakthrough" by Naomi Feil. This would help you when she is having the hallucinations. I can imagination how difficult this is for both you and your sister. I would recommend you looking for a support group in your area. If you look up www.lbda.org it will give you the Lewy Body support groups in your area. I hope this helps.
It's just really good, solid thoughts. The gratitude list is the best - I do that every night - finding 5 things in my day, unrelated to someone's 'doing', for which to be grateful....and my attitude towards life and the caregiving of my demented mother has truly shifted. My sibling chose not to be a part of mom's care so I don't have the arguments - but I don't have the help, either. Hard to say which way is 'better'.
Hi, My mom also has Lewy Body Dementia (end stages) and when she was still able to talk I went along with her hallucinations. Mom would look so worried and cry if someone pointed out how wrong her thinking was. I hated to see that so I met her wherever she was in her thinking and we had fantastic conversations. As far as your mom is concerned, what she is seeing/hearing is very real to her. Fighting with her on this is a losing battle. Better to go along and try to re-direct your mom's thinking. For instance, if you mom thinks that a taxi is waiting outside for her tell her that it won't be here for another hour. In an hours time she will probably forget about the taxi all together. You can then introduce another topic of conversation. Being a caregiver is very hard. Work with the tide, not against it. Sending strength to you, your sister and mother.