How much to tell someone with dementia

carter129

Over the last two years, my sister began to get confused and forgetful, and it became progressively worse to the point where she could no longer live by herself. She was resistant to being evaluated medically, and we didn’t press her. 

She went first to live with her son and daughter-in-law, where her behavior began to get increasingly strange and unpredictable. They were very willing to care for her but limited by the fact that they both work full time. Leaving her alone in the house even for a brief time proved to be potentially dangerous, so she next went to stay with her granddaughter and husband who work from home. 

That fell apart fairly quickly, as her behavior became unmanageable for them. She thinks people are plotting to steal things from her, but actually she has hidden or destroyed them herself. She hides things all over the house, puts garbage between the mattress and spring of her bed, wanders in the middle of the night and tries to get outside. Granddaughter was baffled and would ask her why she hid things, and she would deny it and claim it was “someone else”. She does these things furtively but they escalated to the point where the kids were finding little collections of wrapped-up trash, odds and ends, and her feces, tucked into drawers, laundry closets, washing machine, etc. 

She went next to her other son, who had planned to be her permanent caregiver, and who felt that his situation enabled him to manage her better than the other relatives. His business is on the same property as his home, so he can be in and out of the house to keep an eye on her, but he quickly found her strange behaviors increasing to the point where he’s reluctantly considering long-term care in a facility. She’s very disruptive in the house and will get into drawers and closets, taking everything out, casting it around the room, and being generally destructive. When asked why she did these things, she blames the cat. She won’t bathe, walks naked around the house claiming she has no clothes, and doesn’t want anyone to help her.

We recently insisted on a medical evaluation and she’s been diagnosed as having dementia and vascular disease. We’ve accepted that, from here on, it’s only going to get worse. 

I know many of you have dealt with all these things, and with making the decision for permanent care. My sister can carry on what seems like a reasonable conversation, and certainly knows where she is and who we are. She just doesn’t know what she herself is doing much of the time, and believes that our attempts at controlling or heading off her behavior are evidence that we hate her and are terrible people. This has been painful for all of us. 

At some point, we now know that we’re going to be taking her to a facility and leaving her there, which is hard for us to contemplate. How have the rest of you dealt with this situation? Do you tell the loved one the truth? If not, what do you say?

My nephews think we should tell her that she has been diagnosed with dementia and that she’s doing things that have made it impossible to safely leave her alone, but that we love her and want to do what’s best for her. What other options do we have? This would at least give her an explanation for what’s going to happen. It seems the only other possibility is to tell her a lie, as if she’s being dropped off for the day at the Senior Center (where she used to spend some time) and then just leaving it to the attendants there to tell her, after we’ve gone, that she’s not leaving. We all think this would be a terrible betrayal, and we’re very much aware that she would understand we’d abandoned her but would not know why. She is very afraid of being taken into long term care, and has expressed this often. We're heartsick at the idea we may have to do this and that it would be very much against her wishes, but are running out of options.

Is there any better way to handle this? Does she not have a right to know what her condition is, even if she can’t fully understand? The son she’s living with has, so far, just let the subject drop when she claims that her feces on the kitchen floor belong to the cat. That hasn’t made the situation better in any way, so he now suggests to us that he’d like to say “there is no one here but you and I, and this was done by you - not by me or by the cat. You’re doing these things because you have an illness called dementia. It’s not your fault, and we all want to help you, but it’s best if you know the truth so that we can deal with this honestly.” 

I don’t think this will produce at all the result he’s hoping for but I also understand that he feels we’re all colluding in a web of lies and, as he says, “lying is never ok.” Some suggestions as to how the rest of you have handled these situations would be most welcome. We’re at our wits’ end.

terei

You are right. Being reasonable + logical with her is useless. She is living in her own reality. A memory care facility has dealt with all these behaviors + finding one now is what you need to do.

This is the new format, so I dont know if you can read the many posts about just this issue.

Find an appropriate facility + start the ball rolling. By no means should you tell her what your plans are. The common way of handling this is to work with the facility + the family to set up a room for her + one day, at lunch time(tell her you are going out to lunch) Have lunch at the facility + tell her ‘the doctor’ says she is staying at this rehab place temporarily for (medical issue) til she is improved. Tell her you will talk to/see her soon + leave. Take the advice of the staff about when to visit again. They may say to give it a week or even two, depending. The facility will try to keep her busy with activities, introductions, meals, snacks, etc etc

When she demands to be returned home, ‘the doctor is in charge of this + we are not going against his advice til he says different’. “We know you are displeased about this + we are sympathetic, but the doctor says…etc etc etc”

Finally, yes, lying is sometimes ok if you are trying to keep a PWD safe, calm + content with her existence. The son can keep trying to reason with her + will likely cause her to become agitated, angry, frustrated + possibly violent. The right words to her are the ones that allow her to have a calm + safe. Son needs to do a lot of research re: Alzheimer’s instead of what works when dealing with someone with an undamaged brain.

2parents/brain change

https://alzconnected.org/discussion/comment/167824#Comment_167824

The right words are ones that keep her calm and safe! Well said!!

carter129

Thanks for responding. We have never had anything like this in our family before, and have no experience in dealing with it. It's hard for her children to realize and understand what's happening, because you can have a conversation with her where she appears to understand everything you've said and responds appropriately. Yet at some point you become aware that her memories of the past and present have a large element of fantasy and are mixed in with books she's read, tv programs, etc. She thinks I was present for events that occurred long before I was born, and her chronology is way off.

Everyone in my family has been inculcated with the idea that lying is an entirely bad and reprehensible thing, so this is tough for us. Are people who have been diagnosed with dementia ever told of their diagnosis, and is that decision based on how far along they are or on other factors? Since this is a family matter and her children and grandchildren have a say, they will ultimately make the decisions. I want them to have the best advice possible, and to be satisfied that they've done what's right. Although they'll be deciding in the end, I'm the one who is gathering information because (yet another problem!) everyone in the family has heavy work responsibilities and they just aren't in a position to do a lot of internet research.

towhee

You mentioned you were looking for resources. This is one of the best, short but really gives you some insight into the disease. It will help your family members. Smashwords – Understanding the Dementia Experience – a book by Jennifer Ghent-Fuller You can read it online or download it. This is a short you tube video on lying from a channel often viewed by members. Lying To Someone With Dementia - YouTube. Another you tube channel is Teepa Snow. She mixes roleplaying into her lectures and can really give you a feel for the disease, she has a deep knowledge base, but can sometimes jump around and some people find the roleplaying offensive. Her long lectures have been cut and spliced into various short ones and there is also a podcast etc, but I feel the occasional confusion is worth it. This a short video on defusing situations. https://www.youtube.com/watch?v=KKejCymVS2Q&t=10s This is another good one. Common Issues With Dementia - YouTube

carter129

Thanks for the recommendations. I'll definitely check these out. I think my family is struggling with the realization that the person they could always have a reasonable conversation with is just not available any more. The whole experience is actually harder for them than it is for my sister, who doesn't understand that anything is wrong. They're still mostly stuck in the "we can fix this if we figure out the right words or the right actions" stage.

Jo C.

Towhee has given some excellent information with the links. It would be a good idea to send the links to family members; especially the "Understanding The Dementia Experience," and the video regarding "Lying To Someone With Dementia" are highly valuable. It does sound as though it is no longer safe for your sister to be alone in her house any part of the 24 hour continuum due to the advancing of her dementia which makes her unreliable to format her own plan of care or to cooperate with others telling her what to do or what needs to be done.

Admitting a Loved One (LO) to a care facility can be one of most difficult things to do and is also often an emotionally laden experience. I would suggest rather than thinking of our feelings as, "guilt," it is best to think of the necessity of placement as more a feeling of, "regret" instead.

The lying issue is no longer one of "lying." It s an issue of kindness for a person whose brain is "broken." The brain has been badly damaged, your sister is no longer living in real world reality; she is living in her own damaged reality and it is as real to her as the chair you are sitting on.

She has lost her ability to process, to understand in reality, her judgment, reasoning and logic centers are irretrievably damaged and cannot be fixed or modified. To tell her she has dementia will not be kind nor will it resonate or process and may cause her to become even more contrary. To tell her she is not going home again and is being admitted to a "nursing home" would not be a kindness but would have the possibility of being cruel. The person insisting on telling bold truth is not thinking of or quite understanding the person with a badly broken brain; they are thinking of themselves and what their beliefs have always been about lying, but that is for people whose brains are not broken by dementia.

The best one can do is to use, "therapeutic fibs," this is a kindness and prevents meltdowns as well as getting a LO to comply with a need that would ordinarily be rejected.

One of the most important things when caring for a person with dementia is that the environment be one of routine and structure on a daily basis. Not to have this will cause far more upset and acting out. Loud noise, (even from music or TV), or too much stimulation from others around them can cause an increase in behavioral issues. The house should be neat and uncluttered and as said, the days being days of routine.

At this point in time, the home environment may possibly not be the best environment for her and she has had many changes with moves due to her behaviors which are not well managed. It is often surprising that our LOs, after they adapt to their new setting in a care facility actually thrive and become much more calm. This is because they have that routine and structure with a care team that understands and knows how to manage behavioral issues and are available 24/7. There is also an opportunity to increase socialization as much as the person may wish as well as activities to observe or take part in as they wish. Meals and snacks are scheduled and part of that routine. Elimination problem issues are addressed. Care facility staff is very experienced at managing patient and family issues at the time of admission.

My own mother who had significant behavioral issues came to a point at which placement was necessary. As said, the hardest thing for me to do. No way could I have told her what we were doing, she would have had a major meltdown lasting for days. Everyone is different, but this is how our experience went and it went far better than I ever thought it would. We blamed it on the doctor who "prescribed" having care in the "rehab center."

First; I had all her clothing and other personal supplies put in the closet and drawers in the care facility prior to her arrival so she did not have a lot of hustle and bustle bothering her at admission which would have been upsetting as she did not tolerate a lot of activity around herself. I also had put a few recognizable things in her room to feel more comfy - a favorite bedspread, a favorite afghan, a few pictures, etc. We did not tell her the true facts for obvious reasons. We did use therapeutic fibs saying that the doctor wanted her to get "rehab" for awhile in the rehab center . . . . she was not happy but she bought that. If we had needed, the doctor said he would be okay in telling her that.

There will be a period of adaptation not only for the person with dementia, but also for the loving family members; they too will have a period of adaptation.

NOTE: Sometimes, when our LO has had increased agitation and negative behaviors, it is best to have them checked for a "silent" urinary tract infection. These UTIs are called "silent," because there will be no physical symptoms, but increased behavioral issues with irritability and agitation are often present. That being said, treatment of a UTI will not "cure" or change the damage to the brain that has already occurred and that will continue to decline, it is just a note of something often not realized.

You are being a very good advocate for your Loved One as well as a very loving sister and so hope you will be able to provide information to the family members that will enable them to be proactive rather than reactive. It is truly difficult but will become more calm once a move has been made and your sister will be safe and secure on a 24 hour basis. She is not being abandoned, she will be getting to a care setting that can provide what she so badly needs and she will still have her loving family to be a presence in her life. Perhaps the relatives can begin to understand that something is not being done to her, instead, something is being done for her.

Let us know how it is going, we will be thinking of you and I send best wishes your way,

J.

towhee

This is another good resource. Common Issues With Dementia - YouTube Also, a longer series for more in depth knowledge Teepa Snow - Making Visits Valuable Part 1 - Breathe - YouTube.

I am sorry your family is going through the bowel incontinence. The "playing with feces" does sometimes occur in the later stages of the disease, they just no longer understand what feces are or they no longer know what to do with them. Unfortunately, since normal chit chat is one of the last things lost, caregivers often do not realize how far into brain failure a PWD is.

Others will be along with more advice and resources.

(I edited this post because much of it was a duplicate, still getting used to the new board)

carter129

I can't thank each of you enough for your helpful, thoughtful answers, and for spending the time to provide them.

Part of the difficulties in getting family on board stem from the fact that my sister's husband also had dementia for the last two years of his life. He was very difficult, was twice her size and weight, was angry, accusatory, and argumentative. Still - she took care of him at home until the day before he died, when he became unable to breathe without being on a respirator. We were all astonished at the personal sacrifices she made so that he could have his wish, which was to die in his own home. It's very hard to consider the possibility that we may do less for her than she did for him.

I know that, with each move from one household to another, she's experienced an immediate decline. We all realize she has no longer has the ability to adapt to change. The original idea was that we would move her around from family member to family member as each one reached a certain level of stress, so that no one would be burdened beyond what they could tolerate. But it's obvious now that she doesn't have the resilience to endure this kind of life, even though each of the family members has provided a room of her own with all her pictures and personal items in it. It's not home, and she knows it.

M1

Hi Carter. two more things to throw into the mix: first, I don't think you mentioned whether someone already has power of attorney for her? You will need that in order to place her in a hospital or facility against her will. Second, realize that many facilities will be reluctant to consider her unless the behaviors you are describing--including the walking around naked--are controllable. she may need medication to accomplish that, and you may need to consider a hospitalization in a geriatric psychiatry ward to get her stabiiized. the downside will be that you hate to do that, but the upside would be that she can be stabilized, and then transferred to a memory care facility from the hospital.

carter129

Thanks again, you are all a great help and comfort. To answer the question above, yes - her son has power of attorney so that, at least, is one hurdle we've got behind us. I'm following up on all the links sent and will share with family members. This particularly struck me:

"Unfortunately, since normal chit chat is one of the last things lost, caregivers often do not realize how far into brain failure a PWD is."

It's difficult to know how to fathom the fact that someone with whom you can have a reasonable and pretty normal conversation is - at other times, out of sight - wrapping their feces in socks and paper towels, and hiding the little bundles around the house. It's this perfectly reasonable attitude while having a conversation that has baffled the kids and made it so difficult for them to understand her behavior at other times. They've frequently asked me how it is that someone who can understand everything you say, and respond appropriately, can do such bizarre things - a question for which I haven't had an answer.

eaglemom

I frankly am amazed at how many in your family have stepped up and taken turns, if you will, with your sister. That is pretty remarkable.

What everyone needs to understand is that you can not make a person with dementia understand / accept certain things. Period. Therefore, you have to enter their world of dementia. You will never argue them into understanding, therefore don't even attempt to do so. Just agree. That is so very difficult, but it is easier on your LO and easier on you.

Have you contacted your local ALZ Chapter? Please do so. They might possibly have some support groups your sister & others would benefit from attending. Some will be in person & some are still on Zoom. Do your research. Become familiar with her diagnosis. But also realize, each person is different when it comes to dementia.

Hopefully you can get information and idea's to help your sister and to keep her safe. That I know is a priority. Look at different facilities, ask questions, gain as much knowledge as you can so you can make the best decision for your sister.

eagle

carter129

Thanks, Eagle! I'm fortunate that my family members have a great love for each other and are very determined to give my sister the best life she can possibly have. I know that if it were just a question of cleaning up after her, every one of them would do so indefinitely and without complaint. We haven't yet given up on the idea of keeping her at home - or at least, doing so as long as it's humanly possible - and want to explore every option. While she was still living in her own home, the kids all chipped in to have a housekeeper come in five days a week to be with her and keep the house in order, but it just wasn't enough. My sister's granddaughter is recently married, and granddaughter's husband's mother has been picking up my sister three times a week, taking her to her own home, and bathing her. For reasons unknown to us, my sister doesn't resist this as she does being bathed at home. As I said, we're blessed in our relatives, even the very new ones!

I'm truly grateful for all the suggestions and information here, and we'll be taking advantage of every bit. Still - the thought of not having her at home with one of us is causing a lot of grief. I understand now the toll that's taken on caregivers. My sister doesn't understand the situation any longer, so she's spared that at least. But the rest of the family cries themselves to sleep at night and is consumed with worry and sorrow.