Find Senior Care (City or Zip)
Join Now Log In
S
skinonna Asked August 2013

What stage of dementia do you think this is?

We go to my MIL each weekend. Told her we would be later than usual. Door was locked. Got our key and rang the bell. There's a long entry to the inner door and MIL answers it trying to pull on her robe, but in Full Monty. This is a woman who really cared about having her looks all put together if someone would see her. Asked what she had been doing. Had all her jewelry on the bed going through it. Ok who stands in their room stark naked reviewing their jewelry?
What stage of dementia is this? This was a new behavior.

Angelove Sep 2013
Take her to the doctors. Express your concern to the doctor about this. If she gets in accident where someone is injured and the doctor never told you to take the keys away from her there could be liability somewhere on the doctors end...

CarolLynn Sep 2013
I agree with Chi. You can TRY to label a patient, but the dynamic changes up and down in different categories will fool you every time. In a way, it's similar to wanting to know what KIND of dementia a patient has. At the end of the day (or the week, the month or the year - haha), folks with memory loss are all going to be different than they were before and are going to have to be dealt with in whichever way they must be based on how the condition is presenting at any given hour. So while it may be INTERESTING to know what kind of dementia a person has or what stage of Alzheimer's they're in, it's generally not very helpful in the day to day caretaking. I think we all want to try to find those things out, however, thinking or believing that knowing it may help us try to FIX them or REVERSE or LESSEN the disease pricess or the anguish and deterioration of our loved ones. Sadly, after my own personal experience with 4 direct dementia patients, 2 indirect dementia patients and one ALS (Lou Gehrig's disease) patient, I have never found that to be the case. Research is ongoing and we can only hope for a breakthrough in the future.

ADVERTISEMENT


skinonna Sep 2013
Update: Dr. said by winter she can no longer live alone. My daughter went with my husband and sneakily got her in the car and drove her to our home. She did not know who I was. She's supposed to be going back home tomorrow, but it scares me to death. She has been mostly pleasant which is not her natural state. Maybe the drugs have something to do about it.

chimonger Sep 2013
It seems a crapshoot, trying to box/label stages of dementias. Signs and symptoms can be worse some days, better on others....nothing completely reliable as a signal, unless that might be once a person pretty much takes to their beds 24/7.
As long as they are up wandering about, ablities can wax and wane, or, steadily get worse.
Uncle systematically, gradually removed excess clothes, jewelry, furniture, dishes, etc., from Gmas apartment, making her living space simpler to deal with.
Her confusion seemed to grow commensurately with how many things were removed--or maybe it was the other way around--kind of "what came first, the chicken or the egg".
It seemed her dementia kept fairly steady pace towards it's finality, with less vacillations, once he started gradually removing things.
Perhaps that was due to fewer things for her mind to connect to, to maintain it's construct of connection to this world--it became easier for her to let go, as things disappeared.
Fewer things to clean or deal with later, less for her to fall over.
Her things got disbursed ahead of schedule, likely not as she'd have liked.
It made her final trip to the hospital less traumatic to all involved--her apartment had little to remove by then, and, she no longer felt tied to it.
It was traumatic for her to let go of some things--like her driver's licence.
Earlier on, she noticed some things disappearing, but Uncle shrugged and played dumb...so did others who helped--or they said it was in storage, all locked up safe [that only works if you know the person will NOT demand to go see it or fetch things back!].
Maybe that helped her give up on life sooner, shortening her time with dementia.
She had some quality of life that was easier to handle, for the time left, and, her life was not artificially dragged on too long in poor quality of life.
It worked for all my grandmas, sorta like that.
Maybe it could work for others...dunno.
Whether that might work for an elder who's a mega-hoarder who regularly goes thru their heaps of stuff--but maybe it might.

Stuff and priveledges need removed at first clear signs that the elder cannot handle those--EVEN IF they later have spells of remembering or renewed abilities...
...once they start having lapses or impairments, it's time to curtal their scope of operations--even if it's only a little at a time--it will go in small steps and large ones, depending on the person.

NotHisFault Aug 2013
skinonna - I agree that Dementia can affect people differently for sure, so that stages are hard to predict - but it helped me to understand what to expect as this horrible disease progresses. The link below was helpful as it made me realize my husband has entered stage 6. I'm certainly not a doctor - but, in my opinion, the behavior you describe for your MIL appears to be a clear sign she needs help and should not be living alone. Hopefully, the info in the following link is somewhat helpful.

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

geedeeooo Aug 2013
The jewelry and nakedness are definitely familiar. All the advice about driving is very good and necessary. The point about Urinary Tract Infections (UTI) is a great point. I just want to add one thing. My mom started losing her physical abilities very early. The physical therapists tried to get her to use a walker. She just wouldn't/couldn't. They said that once someone gets into the dementia it is hard/impossible to learn anything new. So I'm thinking that if you could get someone in the house with her now it might be easier than waiting till later. That would solve the driving problem, eating/cooking, and general safety. As the disease progresses problems could possibly be prevented rather than waiting until something bad happens. If your mom is still able to make some decisions now would be a good time to set up Power of Attorney (POA), a will, and let her plan in advance for her medical preferences. I hope it doesn't become too difficult for you because she is really lucky to have someone in her corner for this fight!

golden23 Aug 2013
It is very difficult for family when docs are content to leave things be until the senior gets worse - really worse. I know it is worrying. We am in that position with mother whose judgement is off. She is physically well, but showing some "risky" behaviour like at 101 trying to fly across the country alone without an address to go to, or asking her cab driver if she can live with him, The docs still consider her competent! We are waiting for the next "episode" and hope there will be no major harm. I agree about the driving - follow that up however you can for her protection and the protection of others. Really I have no new suggestions, but a lot of sympathy for you. (((((((((((hugs)))))))))))))

skinonna Aug 2013
I understand that staging dementia is usually not very useful. I think what I want to know if there is some way to know what to expect next? This week she told my 36 year old daughter that she was getting big and how old is she now ? My daughter (who is a healthcare worker and is quite knowledgeable about dementia) asked her how old she thought she is now and the answer was 13?(It was via Skype, so not in person) Very confused. Just wants to dig in the dirt and sweep her garage. Could not understand what her mail was, even though she still can read quite well. My opinion to my husband was she should not be living along. His response is that she is only happy when she is outside digging in the dirt at her house, so let her be. Her doctor's opinion is let her do as she pleases until something bad happens. Ugh! We try to keep her from hurting herself.

Labs4me Aug 2013
The Massachusetts Resistry of Motor vehicles has Free Elder Driver Workshops
The RMV offers free, one-hour safe driving workshops across the state. massrmv For more information contact the phone number listed on the schedule. There is also a page for family caregivers on this site at massrmv

Norlund568 Aug 2013
You may want to have her checked for a UTI. My grandmother behaves strangely when there is something else going on. My grand mother is in the later stages of ALZ, and doesn't communicate, but her decline overall has been gradual. Anytime there is a drastic change, we have to find the cause. Usually a UTI due to incontinence. Antibiotics and we return to baseline.

terry Aug 2013
Getting the car away is difficult. you say she does not eat much and is losing weight. my mother was the same and we did not realize until she passed out right before getting in the car. My brother called 911 and they took her to hospital and checked heart etc. turned out she was dehydrated and apparently was forgetting to eat and drink. We let her believe she had a mild heart attack and could no longer drive. Immediately took her car to my brothers and lived with the nasty remarks from her. As my brother constantly told her: " i could not live with myself if you hurt someone while driving".
My mother is at the stage of accusing everyone of stealing from her. she is 95 and livves in AL. the last couple of weeks it is a man who sits on her bed eating peanuts and takes papers(old useless ones) now she hides her wallet and accusing someone of stealing and then I have to go thru all her stuff to find it. I am at a loss as to what to say to her. any suggestions, amy finding it hard to not just react.

ryanharris Aug 2013
As said by many experts here, it is hard to tell the stage of dementia. My dad is 73, he was diagnosed at 66. Currently he is living at Luvida Care Solutions, it has been 7 years since the diagnosis and he is doing fine.

CarolLynn Aug 2013
1) someone here mentioned doctors are not proactive and taking away the drivers license. Sadly, true. As caregivers, we can't wait for that. The car itself and the keys must be removed. Taking the license doesn't stop them from driving if the car is available. Having the license or not makes no difference to them.

2) what stage of dementia patient is in is not really an important marker other than for a medical evaluation at that moment. You will find that the diseases dynamic: one day you'd say somebody is a 3, the next day or even two hours later, you said they were 6. Once you know it's dementia, it's memory altering to the point where decisions have to be made for the patient because no matter whether you can reason with them right now or have them angry or paranoid 2 hours later, they are unable to make safe, sanitary or healthy decisions for themselves on a regular basis.

D2 Aug 2013
Getting license revoked is more difficult than one might initially imagine. Check to see what the state says about it and maybe talk to her doctor to see if you can get him on your side. This did not work for me however. When I brought it up with the doctor in front of my father I was taken aback and disappointed when the doctor said "Well, if he thinks he can still drive he probably can". This is the same doctor who refused to see my father after my father insisted on continuing to live by himself and continued falling. What I finally did was keep his keys when he left the hospital after falling and clearly unable to drive for awhile then refused to give them back. He was mad but eventually gave it up. Unfortunately, this was a source of his independence which he lost once he couldn't drive and that was sad as well. Good luck. Again, check into the resources available that support taking away her license.

anonymous158299 Aug 2013
my mom went thru about 4 years of rummaging and inventorying, then eventually everyone was stealing. later i, her primary carer was trying to kill her and an imposter.
skinona, your mom sounds like # 3 or 4 on a toaster dial that goes to 7..

akdaughter Aug 2013
I agree with the others about the driving issue. In addition to the possibility of an accident and legal troubles, there is the potential for her to become disoriented behind the wheel, make a wrong turn and become lost, even when making a familiar trip. I have read many newspaper reports of dementia sufferers being found hundred miles from home and sometimes the outcome is tragic.

Caregivercenter Aug 2013
I agree with others about the driving. My dad got into an accident and I did not know until about 6 months later, was served with legal papers for arbitration. Luckily, the insurance company represented him and I was able to keep that information away from the other attorney. It was such a minor fender bender, we never noticed the damage on his car. The other person was suing for "being unable to continue with relations with his wife", A bunch of baloney, but they are legally within their rights to put that as part of their claim. We settled out of court for a small amount that the insurance covered. Very lucky. GET THOSE KEYS AWARE FROM HER!

Lori1943 Aug 2013
This behavior is sometimes called "rummaging," and is fairly common, definitely a dementia symptom. My mother started more or less taking occasional inventory of all her possessions. She would dig stuff out of drawers or storage boxes in the closet and spread it all out, and then often claim either that something was missing or that she had never seen any of that stuff before, and somebody must be coming in and leaving it there behind her back. Part of this inventory-taking / rummaging was that she was getting more and more paranoid about people stealing stuff from her, which is also common. I really don't think it's that helpful to try to assign a "stage" to any of this behavior, because it's so often in and out. When my mother was in the middle of doing this stuff she would be acting and talking like a complete dingbat, and then the next day or later in the same day she would be fine again. It's just a matter of being watchful. If she can otherwise manage herself fairly well, you probably don't need to take specific action based on this one incident, but do keep your eyes open.

sunflo2 Aug 2013
Find with my mom, it's up and down. Some days she's with it and great, other days drifting. It happens even in the same day. One minute she's talking, engaged, later, she is hallucinating or talking to dead sibling. Periods of paranoia come and go, but understand accusations, paranoia, afraid of losing possessions, etc become increasingly frequent. My mom constantly checks and rechecks her mail, her money (stashed in drawers ), jewelry, keys, etc. if she can't find, she accuses someone of stealing. The more forgetful they become, the more these behaviors are pronounced.

I wouldn't panic just yet...I've been there, panicked, worried about moving her to memory care, etc. and the more I educated myself, and calmed down, I realize she manages day to day and can basically take care of herself. As long as she is happy and healthy and not bothered by the episodes I let her be while keeping a close eye on her finances and her overall well being.

My advice is to keep monitoring, document your observations, time of day, etc and bring up to doctor at next visit. He can do tests if you want and may have her further evaluated by neurologist specializing in geriatrics.

pamstegma Aug 2013
Get her off the road NOW before she kills someone and you get sued for not turning her in. Notify the local police department or Mass DOT office.

NotHisFault Aug 2013
I wanted to make a quick comment about driving with Alzheimer's/Dementia. A neuropsychologist explained it this way: If the person with AD was ever in an accident - even if they were completely without fault - once the other party or the other party's attorney or insurance company found out they had been diagnosed or treated for AD, the accident would be determined to be their fault - only because they shouldn't have been on the road in the first place. They would also be able to sue the AD person on a personal level as well. For me, it was extremely difficult to get my husband to stop driving two years ago, but I sleep better at night knowing he will never be involved in an auto accident - or possibly hurting someone else or himself - because I went through the effort to have him not drive any more. Removing someone's independence is horrible, but much needed if they have AD.

IsntEasy Aug 2013
I agree with the others, it's hard to determine a definitive stage and it doesn't really matter. What's important is a person's ability to manage their 'activities of daily living'. Though dementia behaviors can run the gamut from maddening to amusing, the ones to look out for are those that are dangerous to the person or to others.

Stripping down and organizing the jewelry isn't dangerous, but wandering the neighborhood that way is. Check in with her neighbors and friends the next time you visit. Ask if they've 'noticed anything'. It could be that she hasn't had much contact with them. That's a sign, too.

I'd search for a community near you now, so that you don't have to find something in a hurry during a crisis. Maybe there's one where someone you know lives already? You can start to prepare your MIL for the idea by taking her there for lunch or an activity when she's visiting you.

Driving should be addressed. It's been my experience that the doctor won't proactively address it. You have to. Send him/her a letter, expressing your concerns and asking that your letter remain confidential.

Lucyboo Aug 2013
Very bizarre illness, one thing for sure is no one with alzheimers should hold a drivers liscense.
As hard as this may be you must take steps to stop her driving, i'm surprised the doctor hasn't already

Lucyboo Aug 2013
Sorry, so many typos as I'm on my phone, also reading back I hope my answer doesn't come off as rude :)
I guess what I'm trying to say is, it's easy to assume that because they do something abnormal that this means they are automatically into a "next" stage.
I have made this mistake before and my example is this: mom always wore a watch but could no longer read it correctly, this really upset me especially when she would announce outloud that it was already five to ten when it would be something way off like half past two!
I took the watch off her because I told myself she could no longer read a clock.
Months later we were in the supermarket when she said " come on it's twenty past five already let's get going"
I imeadiately thought " mmmm whatever" only to look up at the somewhat small supermarket wall click to see it read 5.20pm. She could read a clock.
She wears her watch now and some days can read it fine and other days had trouble.

skinonna Aug 2013
She was diagnosed over 3 years ago. In some ways she seems better than 6 months ago. Taking better care of her personal hygiene. We have taken over all her financial and legal responsibilities, so she has less to "worry" about. She is a worrier. She goes out in the yard and weeds daily, sweeps the garage, digs little ditches. Doesn't cook. Has lost the sense of hunger and is losing weight, but sowly. Often anemic. She is physically active. Sometimes doesn't know the month, almost never the day or date. Perseverates over anything pending. Is usually mad about something we did. Has always been manipulative. Never happy and has used that to manipulate anyone who cares about her to do her bidding. Now that doesn't work (and it never worked with me)and she is very angry about it. Insists she will NEVER leave her house which is 2 1/2 hours away. We've decided to leave her there until the doctor has her license suspended. She still drives. Seems to remember mechanical things the best. This is such a bizarre illness. Seems to have no pattern. I just don't know what will happen next.

Lucyboo Aug 2013
Hi Skinonna,
I agree you can't me black & white with all stages/behaviors, however my mother has early onset alzheimers and this is something she would have done and she too us an elegant lady always dressed beautifully and very reserved.
She has good days and bad. Rummaging through things ( especially jewelry ) or things important to them can become obsessive and she could have easily Ben getting undressed whilst seeing her jewelry- getting sidetracked - deciding she must sort it now... Naked or not.
My mum constantly gets her jewelry out, sorts it, moves it etc
I would say my mom had moderate dementia, I fo care for her full time.. Although she was also doing these sorts if things 3 years ago when she was living on her own with dementia and coping quite well.
What I have learnt over the past 4 years is there are SO many quirky / unexpected things they do but we need to accept them and not make huge reactions of them. My motto is so long as she is not harming herself or anybody else then I take a breath and accept these things.
It's so hard and unforgiving this disease but
personally I feel boxing people into a stage is somewhat damaging. Each person is an individual and their journey is fairly different , so please don't write her off to a stage because of something that is new and confronting to you :)

Catjohn22 Aug 2013
Actually I should have said her "inability to .. ."

Catjohn22 Aug 2013
I agree with Virtualhorizon that an assessment cannot begin to be made by the behavior you've described. Consider the things she did right: 1) knew to answer the door, and where that was 2) knew to cover herself and pull on a robe and where that was 3) knew where to find her jewelry, regardless of the apparent lack of reason for going through it all on her bed. Actually, her behavior could be considered more eccentric than indicative of dementia. What became more apparent as my MIL slipped into mid and late stages was her ability to remember things like anyone's name and relationship to her, how to do even basic things like clean herself up after using the toilet, how to prepare food for herself, ability to feed herself, sundowning from mid-afternoon through the late evening when she finally would succumb to sleep, increased night wakefulness, progressively worse loss of physical things like balance, eye-hand coordination, holding utensils and getting food to her mouth, loss of energy . . . There is just so much and the sequence can be unpredictable, including sometimes seeming to go back to previous stages for periods of time. There is so much helpful information available, and various assessment resources. I would suggest that you consult it so that you can have a more reasonable idea of what to expect. It's a long and winding road and she needs you to understand as much as possible.

virtualhorizon Aug 2013
skinonna...its really difficult to put a label on the different stages, even though they're set out in print for us to look at at. Stages can overlap. What one person develops in, say, stage 5, another individual might develop in an earlier or later stage. It also depends upon how slowly or quickly the disease progresses from person to person. Taking items out of a drawer or closet (such as your MIL did with her jewelry) and going through it is common in AD patients. Forgetting to put on clothes or taking their clothes off is also common. My Dad sometimes takes all of his clothes off just to go to the bathroom, and then wanders out into the hall looking for my Mom to help him put it back on again. People's personal habits, such as how they care for themselves, can also change drastically. To pinpoint which stage a person might be in you really need to look at other behaviors which go along with these you've mentioned, as well as how long its been since she's been diagnosed, and even that might not give you an exact stage.

ADVERTISEMENT

Ask a Question

Subscribe to
Our Newsletter