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Question for people whose parents have had dementia

April

Veteran

What were the early signs?

My mother-in-law died a few years back after a couple of years with a particularly nasty form of dementia, but hers was not the more typical Alzheimers. Hers was very geographical at first. She couldn't find familiar places while driving her car, then she couldn't find rooms in her own house -- that sort of thing. My father in law hid it from the rest of us for a long time.

My own mother has recently had a string of experiences that are making me wonder if she's in the early stages of dementia (her father had it). She's in her late 70s.

Anyone have any words of wisdom, things I should watch for? My dad is living and healthy. They live 2000 miles away from me, but they might be amenable to moving close by if they needed help.

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33 replies

Latest reply was from Elle

SandyG

Veteran

My auntie would repeat the same things multiple times during our phone conversation and not realize we'd already talked about that subject. Then she had trouble figuring out her bills and financial stuff. Go see them in person to check out your instincts, and good luck.

annagybe

(website)

Veteran

Paranoia

chewyspaghetti

Veteran

For my dad, it started with just typical forgetfulness. He'd tell me the same thing multiple times, forget appointments, etc. Then he started forgetting whole conversations, getting confused where he was while driving and having trouble recognizing faces. There are all different types of dementia, Alzheimer's is just one type.

Eliza

Veteran

It seems to often start with loss of short term memory, with longer term memory more intact. With the loss of short term memory, one can appear confused: where are my car keys? did I have lunch yet? kind of things. There are different types of dementia and some feature visual/perceptual challenges (why does she have x on her plate and I don't, when it is actually right there). Others, like my father, involve a very slow progression of memory loss, starting with short term memory and moving over decades to impact long term memory.

Changes in personality may be part of it, but not always. There can be an uptick in anxiety when person is in the "gray" zone of knowing they aren't completely with it.You might see a lack of understanding of routine things and a lot of questioning or anger about them. Additionally, in the early phases, people can be defensive and attempt to hide or minimize the symptoms. In my observations, unless you are frequently with someone, there can be a lot of subtlety to the early warning signs.

All the best, April.

viva

Veteran

April, I'm sorry to hear this about your mom.

My mother has dementia and has been living with it for about 10 years; she is 84. It's been quite progressive. It's so hard to remember back to the beginning, but there are some real similarities between my experience with my mom and what you are hearing from others above. I think with my mom it was mostly (1) repetition of stories/conversations within the same day, (2) repetition of comments/details within the same conversation, (3) a feeling she was being left out (we heard her say constantly to my dad, "you never told me that!"), (4) real difficulty remembering the names of grandchildren (and which kids belonged to which of her daughters), and (4) difficulty driving (forgetting how to get to familiar places). On one occasion, her regular "walk" took her all the way across town (my sister just happened to drive by her, and realized she had lost her way and just kept on walking). These things happened slowly and were easy to chalk up to age, but the walk situation was probably the biggest red flag that turned us very directly to dementia, which has now strongly taken hold of her.

I know this is a very frightening time. From what I know, dementia can be experienced in so many different ways. We have been lucky that mom is a very happy person these days, even though she cannot sustain a new memory for more than a few minutes, and no longer sees us as her daughters (although she always welcomes me as an old friend, so there is a depth of feeling there). She is always up for any adventure or field trip. She loves the grocery store. We have fun together.

I will tell you that from my experience, it has really been okay. Initially it was very difficult to lose the mother I knew; we were extremely close. But I had as many conversations with the original her for as long as I could, and I soaked up as much of that her as possible. And as she drifted away, I just adapted because I had to. She still lives with my dad, for now, and with a sister of mine. She gets good medical care which is key, including seeing a geriatric psychiatrist who has expertise in dementia and helps medically with her mood. (She struggled with depression in her adult life and without some medication I imagine this could be very bleak for her.) She spends some days at an adult day care center with other dementia patients, which helps give my dad and sister respite, which is so important (she resisted this until she was more advanced; now it works well for everyone). She will be visiting this weekend and I can't wait to have her with me.

Prepare to adapt. That's the best advice I have.

JAileen

Veteran

I'm so sorry you're experiencing this. Although my father died of cancer, I believe he was starting to exhibit signs of dementia the last couple years of his life, in his late 70s. My siblings didn't notice anything, but I think that was because when we saw him, it over a weekend, and they would come by for a few hours.

1. Couldn't remember where he parked the car.
2. Repeated the same questions, minutes apart.
3. A normally very mellow person, his temper became volatile at times. It was aimed at my mother.

MsMaven

Veteran

On a visit home I took Mom and Dad out to dinner. We had salads and Mom kept exclaiming how huge the "olives" were. My Dad laughed, we giggled because the "olives" were really radishes. I wish I had known more about dementia at that point and had taken this incident seriously. Later I learned she was subscribing to all kinds of magazines--People, stuff like that she didn't ordinarily read. Also, my Dad later said that she would put frozen pot pies in the oven but forget to turn it on. She would get angry if he pointed it out.

When he was 90 my Dad fell and broke his hip and needed surgery. He kept telling me their bills weren't paid. My Mom said some goofy stuff about how she had her bank account and my Dad had his and the amounts she claimed she had were unrealistic. I went through her checkbook. This was July, and I found the last time she'd written a check was February. Dad had Parkinson's and couldn't write much. Also, she had more than $30,000 in her checking account. I'd say at that point she was in the middle stages. I quickly moved most of the money to their savings account. (When he was 87 my Dad agreed to put me on their bank accounts. I was executor/trustee, but he was slow to share information.)

Mom said that she was going to get a lot of money from some Nigerian--this was pretty frightening, but nothing bad had happened to that point. Now we were reading up on Alzheimers. Mom next went through an aggressive phase.

My Dad hid a lot of his problems from his children because he wanted to remain independent. We tried to talk them into moving to California, where all their children lived. He only agreed when it was clear they were both incapacitated--he physically but sharp mentally, my Mom the opposite.

Anonymous

I was the first to spot dementia in my mom while all others said that I was wrong. Since I did not live nearby I phoned my mom everyday. It was just things that she said to me that did not seem right. She was sure that the people on TV were speaking or waving directly to/at her. She was around 80 years old. My mother was also on a lot of different medications for hyperthyroidism and rheumatoid arthritis and never ate right. I speculated it was probably due to medications, vitamin deficiencies, or possibly even mini strokes.Doctors were no help. She became angry at one doctor because I asked him to conduct a test to see if she was suffering from dementia. The dementia did not seem to progress very much until about 8 years later when she took a fall (did not injure herself) but a couple of days later did not remember where she was, who I or my brother were. She thought she was around 20 years old, wondered why her parents abandoned her. She could not remember being married and for a while thought my brother was her husband. After telling her that we were her children and that she had grandkids she was elated that she was not alone. She said she did not want to know what happened to her parents because that would make her very sad. My mom passed away about 9 months after that fall at age 90 1/2. She was very happy up to the end and that made me feel better knowing that she was happy (bleeding on the brain - she was on blood thinner after developing DVT 6 months earlier).

My father passed away at age 87 from COPD and was sharp as a tack even at the end. That made me sad because he knew what was coming and did not want to talk or see anyone at the end.

Banoffi

Veteran

I'm sorry to hear about your mom.

My dad had Alzheimer's, and my mom tried to hide it from family and friends for a number of years, but everyone knew something wasn't right with my dad. He became forgetful, was confused by dates and time, and had difficulty completing tasks at home that he'd done for year. My mom started doing all the driving, which was also a sign something was wrong. My dad told me stories in great detail about his childhood (the first time I'd heard many of them), but couldn't remember what he'd done earlier in the day. Things got progressively worse over the years (much worse) and my dad died about a decade after first showing signs of dementia. He was 85, and it was a week before my parents would have celebrated their 60th wedding anniversary.

catgirl

Veteran

There are many different types of dementia with very different meds and symptoms so it's important to know which it is or if it's some other cause, like dehydration or an infection.

Barbara Diane

Veteran

My dad has dementia. It started with repeating himself, and also asking questions that he had recently been told the answers to.

One day he couldn't do the taxes anymore. (Prepare the info. for the accountant.)

He goes to the neurologist every 3 months and at some point the neurologist restricted him to only driving with my mother, and then later took away his license. The fact that it was done gradually, with reason, and by the doctor, really helped. The doctor explained that even if he was hit, an insurance company could tell he couldn't remember everything and blame it on him, so he shouldn't drive. That was a good reason, as it was not related to his physical ability to drive, which was still in tact, I think.

More recently, after my mother fell, she drove my dad to the bank but stayed in the car because getting in and out was hard for her. He had a two part task for him to do in the bank. He did not do it right.
Also, she dropped him for a very long dentist appointment. He did not wait for her where he was supposed to. Eventually she found him.
It seems like she figures out what he can't do once something doesn't go well. I'd like it to be before.

Now sometimes my dad doesn't remember where to put something back, or where something is. They have lived in that house 50+ years.

One problem with the neurologist is that he asked my dad about the election and he could answer, so the doctor didn't see a difference. But there is a difference. So I told my mother to make a list before each appointment of the changes she notices. And to bring the one from the previous time and her up to date notes to the appointment so she and the doctor can look at the changes.

Isolation has been a problem for my mother. She really misses intelligent conversation. Most of their friends have died. On the other hand, she craves time in the house without my father.

Gradually she has found a few things that work. She has her good days and her rough days. I'm trying to get her to contact an agency so she will have someone who already knows them, to call if something goes wrong and they can't manage for a while.

My brother is visiting them now, so I will get a report soon.

I'm an 8 hour drive away. Luckily, they have a nice neighbor next door, who can help in an emergency.

Luckily, my dad is pretty happy and actually seems less stressed now. It was hard for him when he first got the diagnosis. However, he get very anxious in certain situations.

Signs with my grandmother. She blew up the microwave when she put metal in it.
They got someone to live with her after she waited outside to be picked up wearing everything including dark pantyhose but no pants. Once she needed constant watching she went into a small family run care facility in a house a mile from my parents. Some more signs-she became very anxious, would 'hide" her purse, and then couldn't find it.
Would eat a huge amount, forgot she ate, and then eat some more.

For my friend's mother, first she almost never left her house. She didn't go to her granddaughter's wedding, even with a ride. That would have been a big sign for me.
Then she kept flunking her driving test. She had her license taken away and got an I.D. card. The woman who was helping her a bit called my friend and said the mother thought she could drive with the I.D. card. The friend moved her mother to his house fairly quickly after that. And gave the car to his kid.

My mom had a cancer scare and that's when my brother and I started realizing if something happened to her, my dad couldn't spend even a night alone.

Hope this helps, and good luck.

April

Veteran

Thank you to everyone for sharing your stories and advice! I will keep an eye on things and will encourage my dad not to do what my father-in-law did and cover everything up if it seems likely that this is what's happening. We lost several precious years of quality time with my mother-in-law due to their pretending everything was fine and it's a major regret of my husband's, now that she's gone.

Lyn D.

Veteran

This has been very interesting to read, so I thank you for starting the thread!
You sound like a very caring daughter.

Isabel

Veteran

I am sorry to hear this. There are cognitive tests that can be done at their doctors ' office. Though some doctors don't think it is worth it. My mom started showing signs years ago. It turned out she was in congestive heart failure and wasn't getting enough oxygen to her brain. It is very well co trolled now and things cleared up for her . Pain can also cause this. Very often the early signs are determined retroactively, unfortunately.

Classically Casual

Veteran

A clue we missed with the in laws, was what was really in their cupboards/cabinets. On the surface of their home, everything appeared normal for a long time. But later as we helped them move, there were duplicates of EVERTHING scattered throughout, not just in the appropriate room. It's difficult to describe how many packages of saltine crackers they'd brought home and stuffed away, and that's just one item of many.

We realized in retrospect, their decline had begun long before we were aware.

gradfashionista

(website)

Veteran

From what I've seen in family and working in a geriatric ward, the sense of time is one of the early symptoms. For instance, people might think that past events (memorable occasions, fights, trips) are far recent, or that they did certain things at incorrect ages, or that they haven't eaten that day when they in fact have, etc.

Nebraskim

Veteran

My father did not die of dementia and never exhibited that. I want to comment on a statement someone made about their parent having $30K in a checking account. My father had nearly that much when died. It was a joint account of which I was a partner/POD so it was my account, too. That account turned out to be a wonderful thing after he died because I could write checks for things like the funeral, painting and cleaning the house prior to putting it on the market, trust attorney fees, paying the utilities bill, paying the HOA fees, etc. etc. before the estate cleared and was closed. That way I wasn't having to borrow from myself. If you can possibly manage having a good bit of cash in a joint account with a parent, it is one small blessing after they die to have access to cash to cover expenses.

Barbara Diane

Veteran

Nebraskim, that's very interesting and useful information. Thanks.

I guess if they weren't mentally sharp, I'd be worried about someone talking them into "giving" them the money. Or some other type of fraud.

rachylou

Veteran

Paranoia is definitely one. My auntie has progressed from mild to moderate dementia and my uncle is moving them to an assisted living place. She is not aware of her cognitive difficulties and I note they can't be pointed out to her - it's not helpful to try. I used to volunteer at a senior home. Trying to get folks to 'see reality', arguing and reasoning, can devolve fast into agitation and upset. You see family members trying to do that. I think if you see conversations going that way- that's a sign in and of itself.

Anyways...It's good they are going together. One thing that happens, when people move alone and into a single room, they can get isolated, which can make things so much the worse.

There's a lady, Teepa Snow, who trains caregivers. She has a nice website.

viva

Veteran

Agree with Rachylou.

We got to a point where we realized it was not only pointless but harmful to try to correct mom. So we no longer tell her "the truth." She is obsessed about her parents (who died long ago); we tell her they are on a trip. She does not believe she is married; she sees my dad as her special friend. That works for us. She is surrounded by pictures of her wedding and of all of her children, and she can name everyone in them, but she cannot make the next connection which is the one between those people and the ones in front of her. It's interesting. Anyway, following her lead, playing in her reality, is easier on her.

And secondly, a friend whose mother has advanced dementia also recommended Teepa Snow.

I think, April, encouraging your dad to be open about any events and signs is really important. You will want whatever time you can have, and he will need more help and support than he knows. My dad went through a period where he struggled with his feelings about the changes. It's very hard for the spouse.

Best wishes and feel free to reach out.

Suz

(website)

Veteran

April, I'm so sorry you are going through this.

I do not have direct experience. My mother became a little foggy in the last few months of her life, but only in the most minor ways. She'd sometimes forget she had told me something already or forget small details about a situation and insist she was right in her (non) recollection. My brother and I speculate that she may have had some mini-strokes. One of those strokes may also have contributed to the fall that ultimately killed her.

My dad died cognitively intact. My grandmother did have Alzheimers but I didn't live with her.

To Rachy's and Viva's points about speaking to people with dementia in their own language and starting from where they are in order to relate to them well, I know of a good book: The Long Hello.
http://www.simonandschuster.ca.....1476792514

Wishing you courage and hope and resilience through this complicated passage. And hoping your dad will not try to hide the situation too much. It can become difficult in families when different members see different things. That did happen with my grandmother. There were 7 children, some of whom lived in her city and some of whom did not. Among her children, there was much dissension about whether she "really" had dementia, and then later, whether she 'really" needed to go into a home (which they jointly paid for, as she did not have the resources). Some siblings still blame the one sibling who had moved in to care for her before she went into the home, for "making her worse" by coddling her!! There was much misunderstanding.

Anonymous

I'm sorry to hear about your mum, April. It's good that you are preparing like this. I agree with Viva's wise advice: It's all about adapting. There's so much wisdom here, the best of which is that the way that dementia manifests is unique to the individual.

My mum's dementia started to show up in her late 70s. She was always a stickler for detail, and the first signs were her forgetting those details, like not turning on the oven after putting in food. Like your mum, she has a family history, so we were on the watch and tried to stay ahead of the game. The path Mum's dementia took sounds very similar to Viva's situation.

When Dad died, we helped Mum move to a retirement community. We suggested this while she was still aware enough to know what was going on and able to develop a sense of belonging. It's a small, privately run place near my brothers and fits Mum's needs perfectly--she is fiercely independent and did not want to live with her children, which felt like defeat.

This leads me to the best piece of advice that I received on dementia from a psychologist colleague and friend: Help your loved one feel accomplished and purposeful. Older people have lived lives full of achievement, and a basic tenet of self-determination theory is feeling a sense of accomplishment. As Mum lost some aspects of independence, like driving, there were opportunities to take on others: For example, her community runs a gardening program where members grow food that the chef uses in his dishes, allowing residents to see the direct result of their work and feel pride in their contribution. Mum was never interested in gardening, but she's thrown herself into it (learning a new skill, another emotional health principle!). I strongly believe that, in Mum's particular case, feeling accomplished and engaged has helped her stay positive. Given her personality, I was worried she'd become angry and aggressive, which hasn't yet happened.

Another thing I learned is not to assume statements that seem off base come from a place of dementia. From time to time, Mum will say something that sounds a bit crackpot and I'll discover it's right on the mark. I add this because--like the Nigerian money comment MsMaven made--not believing could have a darker side. A friend's mother in an Alzheimer care facility endured unimaginable hurt because people thought she was being paranoid about a situation.

None of this is easy on adult children. For my family, it's an ongoing struggle. Mum needs more care than she will accept, leaving us feeling like spies and traitors as we figure out the balancing act of keeping her safe yet independent. But there are upsides as Mum remembers family history details and we get a peek into the quirky, childlike aspects of her nature that she suppressed in her years as a responsible mother.

Laurinda

Veteran

Keep an eye out for 'sundowning' -- losing some mental clarity in late afternoon early evening.

My FIL kept it together very well to outside appearances. Yet it was clear he was having difficulty when his physician asked him who the US president was, or to draw a wall clock on a piece of paper.

Sending you virtual **hugs**, it is a difficult situation, and many of us have been there.

Joy

Veteran

My father had some undiagnosed form of memory loss but I don't think it was Alzheimer's. I suspect mini strokes. He went backwards in time gradually and could not learn anything new. Activities with several skills like getting dressed or bathing were extremely difficult. If something was out of sight, it was as if it didn't exist. Food had to be in clear containers in the cupboards or refrigerator. Bills were not paid. Falls and not being able to account for periods of time became common.

April

Veteran

My mother-in-law had Lewy Body Dementia. She was furious, physically aggressive, and also had terrifying hallucinations and paranoid delusions. She thought my father-in-law (in his 80s) was having affairs with the young aides he hired to help care for her on the dementia floor of their senior-living residence. (He was so devoted to her, you can't imagine anything less likely, but she would go on and on about it.)

At some point she stopped talking altogether, and then she forgot things like how to sit down on a chair. It would take ten minutes for us to physically bend her legs to get her to sit down, and in five seconds she'd pop back up again. Two people had to walk with her at all times, one holding each arm, so she wouldn't fall.

We couldn't buckle her into a wheelchair because New York law considers the wheelchair seatbelt a restraint (illegal) and if we didn't fasten the seatbelt, she'd hurl herself out of the chair and break her nose.

If that sounds exhausting, trust me, it was. And that was in a 24/7 care facility with help from extra round-the-clock aides.

My own grandfather's dementia was nothing like that. He wandered and was confused. He thought the tropical landscaping at my parents' house (in Scottsdale, AZ) meant he was at a resort, and he thought I was waiting tables or working as a maid at the resort. "You went to college, didn't you?" he'd ask. "Couldn't you get a better job than this?" He forgot how to use the telephone. That sort of thing.

I really appreciate everything you've all shared, above. I read a lot about how to interact with dementia patients when my mother-in-law became ill and the shared wisdom of the people who work with that population was absolutely invaluable.

We learned that trying to set her straight on facts was rarely wise and that "fibbing along" to enter her reality was usually the kindest thing. Because she had visual hallucinations, she would ask things like, "Can you see that [blood flowing down the wall; little girl hiding behind the chair; bug walking on my arm]?" I would just say something like, "Gee, I can't see it without my other glasses, but it seems like it's scaring you. Do you want to sit somewhere else?"

SandyG

Veteran

April, regarding your mother, please search your family tree. As I understand it, the maternal line has more to do with dementia/ Alzheimer's on a genetic level. Your MIL's experience is extreme and I don't want it to color your views going forward. Look into your mom's medications, which may interact in ways that affect memory, and also see how 'flexible' she is in managing changes, little and big. Thinking of you

Aziraphale

Veteran

Oh, April, I'm sorry to hear this. I've been down this road.

I'm afraid the list of "things to look out for" is long and not totally accurate, because a lot of these things are things that ordinary people do from time to time! Also, there are many different kinds of dementia and the early signs vary widely. My mum's, for example, began with muscle tremors and a mild "dopiness". It was hard to pinpoint exactly what was wrong with her; she just seemed a bit dense.

Dementia has been a hot topic among my friends and family lately -- too many people we know have succumbed -- and from what I gather from asking around, the earliest sign that something is wrong is when the person is exhibiting signs of a lower IQ. It's particularly noticeable if the person was sharp to begin with. There may or may not be disorientation, short-term memory loss, physical symptoms like tremors, or absent-minded behaviours like putting the car keys in the freezer. All these seem to show up in due course, but they're not always the first sign. I have a second cousin, for example, who had frontal-temporal lobe dementia; her short-term memory was excellent for years, while her judgment quickly deteriorated.

The best answer I can give is to focus on behaviour that strikes you as less intelligent than what it used to be. I know that's vague, but it's the only sure-fire red flag I know of.

ETA my mum had Lewy Body dementia as well, and all the things you said about your MIL applied to my mum -- right down to accusing my (highly devoted) father of having extramarital affairs. One particularly heartbreaking time was when she forgot who I was and accused ME of being his mistress.

April

Veteran

Oh, goodness, Aziraphale. Yes, Lewy Body is particularly cruel, isn't it? My poor FIL went through so much in those last couple of years.

Before MIL moved to the dementia-care floor in their assisted living residence, FIL had to stop bringing her to the dining room because she would do things such as announcing (loudly) that the people at the next table had killed someone and stashed the body beneath their table. She wasn't moving until someone called 911 so she could make a report.

SandyG -- my mom is a "I want things my way at all times" sort of person and she's not particularly fond of me, so if there are any changes to be broached, my dad will have to present them in a way that suggests they were her idea in the first place. If she thinks they were my idea, even her well self would be likely to dig her heels in.

I don't know that she has dementia. I'm just noticing some signs that have made me wonder and in case she does, I'd like to work with my dad to make a plan for her care before things get too far along. (I have three siblings but for various reasons, none of them is likely to be involved.)

Anonymous

I remember my parents getting upset when their memories first started fading. It began with minor short-term things and escalated from there. I always tried my best not to argue with them or point out their mistakes, but it was hard. They were lucky that when they were still of sound mind, they hired an attorney to have my oldest sister as their health care surrogate. They also gave one of my brothers Power of Attorney to handle their finances. That made things so much easier when they were no longer able to make decisions for themselves. Our family did everything humanly possible to honor their wishes. I will be praying for you as you go through this. It is very difficult.

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