How do you treat the demented?

[beckms]

My grandmother has been on a slow cognitive decline for about 10-15 years now. She now lives in a very nice assisted living home, but requires almost 24-hour care by an absolutely amazing woman who is practically a member of our family now.

She knows who we are, but her conversations are very circular; she fixates on one topic and asks the same question over ands over and over and over like a broken record, even if she just asked the exact same question 30 second before. She also has been found frequently early in the morning at the entrances, packed and ready to go visit her parents (who, obviously, are dead). It's really frustrating.

She also denies everything...she tells people that she's just visiting this "hotel", or that she's on vacation there, or her car is in the shop, etc...

Very occasionally, though, she seems to have somewhat lucid moments, and it's during these moments that I have to check myself and try not to talk to her like a baby or retarded person.

But most of the time, she's totally out of it. Everyone just smiles at her and humors her, but I find this kind of insulting. I try to thik about how I want to be treated if that ever happens to me, and I can't decide if it's better for people to be open with her about her condition (evenj though she denies it) or if it's best to just go with the flow.

I should add that even when she was healthy, she came from a generation that was very evasive and didn't talk about things (like dementia) that were "unattractive", so it's hard to know how much of that defense mechanism is kicking in and how much of it is really true dementia.

It's hard to say things right in a format like this...I'm just curious as to what others think about this issue, since I know there are many going through it.

[Laura]

When my mom suffered from dementia, early on I tried to correct her on things. That seemed only to make her more upset, and at some point, she just didn't seem to grasp much of what I was telling her. As her conditioned worsened, I simply was there to love her; if that meant having the same conversation over and over, then that is what we did. It is different from every person. My mom hated the thought of growing old and suffering from dementia was very difficult on her. Allowing her to direct the conversation was a way to for to have control over something, at a time when she had control over very little. It is a difficult time for all. my prayers are with you and your family.

[LonghornGal]

We're going through the early stages of Alsheimers and dementia with gramps. In fact we moved him on Dec 24th (at the last minute!) to a more "supervisory" nursing home because he was going to get booted out of the retirement community. Gramps has seen his already poor social skills decline - petty theft, pushing and shoving in line, and (the worst!) messing up the ladies' hair after they get done at the beauty parlor. Gramps denies any problem and is a pretty good conversational faker. But it shows - he called me Mildred at Christmas - my grandma's older sister (now 90! - perhaps it was the darn christmas sweater vest from my other grandma making me look old). He also is forgetful on details such as how many children he has (or he's revealing unknown indiscretions!) And he confuses my dad and his brother. He doesn't talk much but answers questions well. Gramps denies any problems - he even denies that he was eer in the hospital last year for pneumonia ("I don't remember going there" - that's cuz you were 80% dead and on oxygen in an ambulance!)

But to your question, I think politeness and patience and kindness is key. With gramps he likes to tell his "war stories" so we get him rolling on those - and sometimes we hear something new. We also use pictures to trigger conversations. TV shows and movies go too fast for him, and books are hard to read, so it's up to us to come up with entertainment for him.

Watching him (and my late granny) mom and dad and I realize that with your brain, it's use it or lose it. My great-granny was coherent up until she died at 98 - she quilted and socialized and had a grand old time. So we've resolved to stay active and engaged to avoid losing mental capacity!

[clairea]

I think it really depends on what she seems comfortable with. If, as with Laura's mother, correcting her or talking about her condition upsets her, then I really can't see any benefit to it. However, if she seems to appreciate being talked to in a more "adult" manner then obviously continue doing that. IMO, you really just have to get a feeling for what works for that particular person, and even that may vary from time to time. I'm just thinking of my DH who has fairly significant short-term (and some degree of long-term) memory loss -- most of the time he and I just accept the situation and can even joke about it, but there are times when I can tell it is better just to try to protect him from finding out about his memory lapses.

(((((Rebecca)))))

Claire

[DmOrtega]

Originally posted by beckms
...
Very occasionally, though, she seems to have somewhat lucid moments, and it's during these moments that I have to check myself and try not to talk to her like a baby or retarded person.

But most of the time, she's totally out of it. Everyone just smiles at her and humors her, but I find this kind of insulting. I try to thik about how I want to be treated if that ever happens to me, and I can't decide if it's better for people to be open with her about her condition (evenj though she denies it) or if it's best to just go with the flow.

...

This must be very hard for everyone, including your grandmother. I can only imagine in those moment that she is lucid, she may very well know what is happeing and therefore afraid to discuss it. Talking about it makes it real. There is nothing that anyone can do to change the course. If it was me, I'd really like my family and freinds to just be there with me. It would be scarrier to be alone.
If she evers wants to talk about it, she will. Just be there to listen and hold her hand.

[Beth]

I wish I had better answers for you, but we went through Alzheimer's with my MIL and you were never sure what was happening. We went through some similar times before my grandmother died from brain cancer. We all asked similar questions of ourselves and just did the best we could. You can't battle them when their mind is somewhere else.

We often would say something and try to correct, redirect or clarify, but if she didn't follow we didn't press the issue. The hardest thing for me was when she just seemed to be in a fog. As long as she was talking with us, we had some idea of where she was. I think the most important thing is that you still spend time with them at any level you can.

[jmarie]

My FIL tried to rationalize with his MIL. It only made matters worse, because whereever she was in her mind, that is where she was and wanted to be.

We finally would answer her questions with lies. We would try to go where she was when we talked to her. Then when she was lucid, we would pretend the other had not happened and she never mentioned it. She eventually got to the point where she was there all of the time and then she went so far into herself that we were never able to visit her there. It was really sad.:(

It is so difficult to watch this progression. My heart goes out to you as you deal with this because this is difficult at it's very best. I am so sorry that you are having to go through this.

Joyce

[Gail]

I'm sure that on some level your grandmother is aware what's happened to her. I can't imagine that being reminded of one's deteriorating condition would possibly be of any benefit to her.

I've watched several of my relatives go through this, and yes, it's a terrible thing. There are those moments where they'll keep repeating and repeating, completely unaware they've said the same things only moments before. I can only advise you to be patient and answer again as though it's the first time something's been said, even if you've already answered the question twenty five times in the past 30 minutes. Yes, it's frustrating, but imagine how it must be in your grandmother's head, being told she's said something before when she obviously has no clue it's happened. The same may be said of correcting her; pointing out that she's called your brother by her father's name only points out to her that her mind is slipping. Correcting her won't make her stop. This is something beyond her control and correcting her or pointing out the obvious may only serve to make her feel even more helpless.

Mind you, I'm not accusing you of doing any of these things. But I HAVE seen others do them, and I've seen the reactions on the faces on the infirm when it happens. They look lost; prisoners in their own heads.

You will find there are some things which seem to spark fond memories and serve to jolt them back into reality. Cherish those moments; more and more they become fleeting.

It is a terribly sad thing watching loved ones grow old and sick. The only thing we can do sometimes is to hold their hands, be there for them and live for those brief moments when she's her old self.

Hang on in there. You'll be glad that you did.

[Beth]

Whether, if and how you say something that might redirect a person with dementia or a failing memory really depends on where they are or where you think they may be. In part, it may be a check to see how deep they are into there own world. It might be as subtle as one person mentioning another's correct name and seeing if there is a recognition. That's all I was talking about. As it progresses, you will see that there is no point to it. My MIL referred to me as her father once, and I just nodded and let her talk on.

We're now going down the same road with my mother and wondering if my father is merely showing signs of stress and age or heading there as well. It tears me up, and having been there once doesn't help a thing. It's very hard, and I wish you patience and strength.

[Gail]

Originally posted by Beth
Whether, if and how you say something that might redirect a person with dementia or a failing memory really depends on where they are or where you think they may be. In part, it may be a check to see how deep they are into there own world. It might be as subtle as one person mentioning another's correct name and seeing if there is a recognition. That's all I was talking about. As it progresses, you will see that there is no point to it. My MIL referred to me as her father once, and I just nodded and let her talk on.

We're now going down the same road with my mother and wondering if my father is merely showing signs of stress and age or heading there as well. It tears me up, and having been there once doesn't help a thing. It's very hard, and I wish you patience and strength.

Hey Beth, I hope you're not clarifying because of my post.

I wasn't directing my comments to anyone here, simply referencing something I've seen people in my family do.

[Beth]

Maybe a bit. I know what you're talking about and that's not waht I was saying we did -- and "often" is probably overstating too, especially once you know you're heading down that road. Guess I'm a little gun shy too. ;)

[Blissful_in_TX]

My grandmother is going through the same thing, and sometimes we correct her, sometimes we don’t. For example, she often thinks that I am my mom. So if she asks me a question as though I’m my mom, I’ll tell her who I am, then it clicks with her and she’ll ask me a question about my DH or DS. (She remembers an amazingly lot about my DH and DS for having only seen them a few times.)

But at the same time she thinks my grandfather is still alive, but we’re never honest with her about that. Once my aunt told her the truth and she had a bad breakdown. So if she asks what my grandpa was doing when I visited with him, I’ll make up something and move on.

But then some days she is so out of it, that I don’t even think she could comprehend the truth, and there really wouldn’t be a point to being upfront anyway. She has some really good days and some really bad days, so we just go with the flow.

[eas11]

Rebecca, below is what my friend/collegue says about situations like this. She is our Director of MH and specializes in elder MH issues.
I am glad you posted this- it affects many of us at one point in our lives as those we care about age. It gave me a chance to have an in depth conversation about this topic with my friend.

She says, "Basically, the Validation Approach is most useful for people with dementia. There is no point in confronting them (this is dementia, not denial despite what they may have been like in earlier years). When a person wants to visit dead parents for example, rather than confront her with experiencing the loss over and over again, you acknowledge that she misses her parents and ask questions about them and then try to distract her with saying something like, “let’s have a cup of tea and then we’ll see about visiting them.” By the time the tea is over, she will likely have forgotten where she wanted to go! It is very much about being in the moment and creating a positive emotional space. Activities like looking at old family photos can make a visit easier."
Friend is going to give me some articles and book recommendations. If you or anyone else is interested, I will list them here.

[kima]

I am going through this with my Mum. Just spent an exhausting day with her in her care facility.
I would be very interested in anything you can share Ellyn.

My heart goes out to those of you dealing with this same issue. It is emotionally difficult.:(

[Peggy]

This is a very timely thread for me. My Dad is suffering from moderate dementia and it is very hard to deal with. He started mentally slipping last spring and, looking back, I think he knew something was happening to his mind and he was very frightened. He would pull me and DH aside and ask clarifying questions like, "What house am I at today? The one story or two story one?" (NOTE: I should add at this point that he is also blind which made it even harder for him to know where he was.) I would answer these questions truthfully and he would nod, but I could tell he wasn't convinced. We were in Europe for 4 months this summer/fall. When we returned in December, his memory and state of mind had slipped noticibly. He still knows who I am but much of the time he is living in a fantasy world. He is living at home with my mom but we now have 24/7 caregivers there taking care of him. I was just there last weekend for Christmas and he would talk lots of nonsense much of the time. I have found that the best way to handle this is to not correct or rationalize with him. This frustrates him and makes him angry. I just go along with the conversation and he stays in good spirits. For instance, out of the blue he asked me, "So how many times a day do you eat that?" (Eat what???!!!! We hadn't been talking about anything food related). I answered, "Oh it depends. I'd say once or twice a day". He was satisfied and said, "That sounds good. I'll try that too". :confused: Whatever... We did have some coherent conversations over our three day visit, but a lot of the time I just played along and he was happy.

It is so heartbreaking to watch this and my heart goes out to all of you in similar situations. :( However, he is living at home with my mom and his cat, and the caregivers are giving him excellent, loving and dignified care. I guess there is not much more we can hope for with his condition.

Peggy

[Peggy]

Originally posted by eas11
Friend is going to give me some articles and book recommendations. If you or anyone else is interested, I will list them here.

I would be very interested in recommendations or advise on this topic. Thanks so much!

Peggy

[stefania4]

I'd like some supplemental reading too, please!

My grandmother fades in and out of lucidity, and my other grandmother's husband is now moving more deefinitively into dementia. It's so difficult to watch.

I remember seeing a documentary about 15 years ago about a senior citizens center that was trying a then-revolutionary approach. They decided to put a 1930's/40's decor in the community room - big band music, pictures of Sinatra and movie posters of the era, etc. Why? They said, "They're just plain happier when they think it's 1937, and it's not hurting anything." I think that second part is the key - there's no harm done if Grandma thinks I'm my mother, so I just roll with it.

My grandmother's husband is trickier. He's in his mid-seventies and gets extremely adamant that X has to be done THIS WAY, RIGHT NOW. They're preparing to move into a retirement community (amen!) and I went up to help them pack; it was quite an experience.

[ajowen]

I think I posted this recommendation before. The book called <i> The 36 hour day </b> was really helpful for my family when we first had to deal with my Grandpa's diagnosis of dementia. It addresses some of the issues being talked about on this thread, plus many other practical problems (living wills, financial planning for the person and their caregiver, explaining this to kids, etc).

[Peggy]

I've heard that the book The 36 Hour Day is very good and have put in a request at the library for it. Apparently there is a waiting list for it! I may just ahve to go buy a copy and then I can pass it around the family.

Peggy

[eas11]

My friend also endorses The 36 Hour Day. She gave me a copy of THIS (http://www.amazon.com/exec/obidos/tg/detail/-/1878812815/qid=1104342529/sr=8-1/ref=sr_8_xs_ap_i1_xgl14/002-8031154-8746428?v=glance&s=books&n=507846) book. Although a bit dated, she said it is/was groundbreaking and contributes successfully to what professionals recommend to families. She also gave me a Patient and Family Fact Sheet It is 4 pages and gives explanations and good tips on dealing with the most common features of the disease. If anyone wants a copy, PM me with your email and I'll scan and send a copy.

[Kay Henderson]

These are wonderful suggestions which I also appreciate as my mother has some degree of dementia as well. Here are some things I have noticed.

Visual problems can contribute to confusion. Between my mom's hallucinations and macular degeneration, she cannot trust what she sees. (How frustrating that must be!) When she asks me or someone else to clarify what she is seeing, we are honest with her. (My mom visited me over Christmas and one day last week she asked about the woman sweeping snow in the backyard. We agreed that the core of what she was seeing was a statue and that her mind interpreted it as a woman sweeping snow. The distinction between what she sees and how her mind interprets it seems to comfort her.)

I agree that it can be enjoyable and fun to ask about things in the past that interest the person, particularly when a picture or other item can help to trigger thoughts.

Just because there is confusion in some aspects of a person's mind doesn't mean that all aspects are affected. For example, my mother remains very shrewd and skeptical when it comes to financial matters.

If a person has difficulty remembering who they are talking to or where they are, repetition is helpful. For example, my nephew and his wife are visiting and staying over with my mother tonight. I advised that if he and his wife could use each other's names frequently, that would help.

Bless you for your concern for your grandmother. You are also making the lives of your parents and aunts and uncles easier by your caring and sensitivity.

Kay

Editing to add a couple more thoughts: As you know, people's needs change over time. For example, Sunday evening we all went over to my in-laws for dinner. Although she was gracious in her conversations, when we returned, my mom complained that no one introduced her to anyone. After talking it through, I realized that she recognized my in-laws, sort of know my brother- and sister-in law and their young daughter (who had been guests at Christmas dinner the day before), and was clueless as to my BIL's adult daughter and son, whom she hadn't seen for several years. I concluded that on future occasions like this, I will not only say ahead of time who is going to be at the party repeatedly (which I did), but make sure I use everyone's names at the event itself. ("Mom, you remember Dan's son, Alex. Alex is living in New York now.")

Sometimes various types of procedural knowledge are still intact. My mother can still peel an apple more neatly than anybody I ever met. She was an excellent cook, and during this visit, I was able to find a number of things that she could do seated (she has severe mobility problems) to genuinely help with meals.

K.

[lhall]

Blissful in Tx,

The approach I use is the same as yours. My grandmother has dementia. She knows we are family, but doesn't remember everyone's names. She doesn't remember my DH or my kids and she thinks my younger brother's wife is her granddaughter and my brother married into the family. She also thinks my aunt is my mother. My aunt always corrects her, and she's not polite about it either. It makes me mad to listen to my aunt do this. The only family member that we tell her is dead is her husband. He passed away over 20 years ago and she does carry his obituary around in her purse. At least my aunt isn't so mean when she tells my grandmother about my grandfather.

When she askes me about my mother I just say she's fine or she couldn't make it. I know she's thinking of my aunt and I really don't see the point in reminding her that her daughter is dead. My mother's illness & death was very hard on my grandmother. If she confuses me with my aunt or cousins I'll remind her who I am and tell about my DH and girls.

I try to talk to her in a normal voice. I never remind her that I've already told her something or answered a particular question. Again, I don't see the point in correcting her and making her feel bad. If she says "I'm Sorry" about getting my name wrong or not remembering my DH I just tell her that's ok and shrug it off hoping that if she sees that it doesn't bother me she'll feel better. She is aware that her memory is slipping.

Leigh

[ellielk]

I think my mother is headed in this direction as well. She'll be 91 at the end of January and until August she was fine and sharp as a tack. Starting in August, she began to have this recurring infection that has had her in the hospital 3 time since. Doctors can't seem to put their fingers on why it keeps recurring.

In any case, her mental abilities have been slipping and it's quite worrisome since she lives in FL and I'm in OH and my sister is in MA. Mother lives in an apartment in a community that offers assisted living but doesn't want to move to the assisted living building because the assisted living apartment is too small. My sister is going to try to trick mother into believing that her current apartment needs work and she should move to the assisted living area for the time being.

She cannot seem to stay focused or organized and my sister has taken over paying her bills which annoys mother because she thinks she has no money.

The belief that she has no money has led her to refuse delivery of prescriptions she must take and she wouldn't charge them because she thinks she's been told she can't afford to.

I've also noticed that she doesn't know whether it's AM or PM and will get confused about when her medical appointments are. For example, she got a reminder phone call from the woman who would be driving her to an appointment the night before the appointment. She went to her lobby to wait for the woman to show up that same night and was very annoyed that she never showed.

Mom doesn't want to move to either Boston or Columbus (too cold and she has a boyfriend :D) so we're trying to orchestrate taking care of her from a distance.

It's extremely stressful.

[jmarie]

Starting in August, she began to have this recurring infection that has had her in the hospital 3 time since. Doctors can't seem to put their fingers on why it keeps recurring.

I can't really comment on the other aspects of your post, except to say that we went through this exact situation with my mother. This infection kept reocurring through the course of a year and she was hospitalized 4 times. SHE WAS SICK! When she chilled with a fever, she would shake her bed all over the floor. They ran her through a gamut of tests, each time, to no avail. Then as suddenly as these infections appeared, they ended and she has not has another episode, since. This was about 3 years ago.

At that point, she started experiencing dementia and started shaking like she had Parkinson's. I took her to a geriatric clinic at Bowman Gray Medical Center and they adjusted her medicines. It gradually disappeared and she is fine now.

It turned out that some medicines were reacting against each other. When I look at how she was then...we actually started preparing for the worst, and how she is now, I just feel so blessed. She, at 81, still has a lot of life left in her. She is a breast cancer survivor and polio survivor. She is quite a lady!

Yes, I am TRULY blessed. If there is a geriatric clinic nearby, you might want to take her down and let them take a look at her....I hope that things improve for your mom.
God bless,
Joyce

[mbrogier]

My grandmother had dementia after my grandfather died. She had wrapped herself up in taking care of his overwhelming physical needs that when he died, she snapped. It was a weird almost instantaneous you don't use it, you lose it brain activity. She would ask the same questions over and over, and her conversations were very circular. I was a teen, but I didn't see any point in correcting her and making her feel bad. I just answered her questions over and over. I did figure out that sometimes if I answered questions a differerent way instead of the same answer over and over that she would move on to a new thought process. This did not always work, but it did sometimes. She didn't have severe dementia and lived at home alone until she was diagnosed with pancreatic cancer 5 years later. Her house was covered in hand written notes reminding her to do things.

My other grandmother had alzheimers. We just answered her questions and talked to her about whatever she wanted to. Alzheimers is a bit different because at stages they can't understand anymore. We just tried to make sure Granny was comfortable, safe and as happy as we could make her. We also visited her often when she showed no signs of recognizing us--how do we know that she does know what is going on to a certain extent and just can't respond? I would hate to be a prisoner in my own body and be abandoned.