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Do you have experience with a parent with Alzheimer's/Dementia?

Last night, close to midnight, my mom called out of the blue. She seemed a little disoriented. Definitely not the mom I know. She said she hadn't heard from me in a very long time (I talked to her on the phone about a week ago and I visited there about two weeks ago). I asked if my aunties had flown home. She was surprised I knew the aunties even visited. I told her I was there for the anniversary party and they were there too. She couldn't remember that I was there two weeks ago.

She said she opened up a book and found my number, called it, but it was my old number when I lived in the city. She then found my current number and called it. She kept asking me if I lived in Edmonton, and I said well not really, I had moved outside of the city. She seemed surprised. She wanted to know if I liked it out here and what's the town close by. Well, I moved out here almost 8 years ago and she had mailed me packages and letters to my mailbox in town in the past.

I felt like I was talking to a stranger. How long before she doesn't remember who I am? I told her these memory problems are not good and she needs to talk to her doctor to do some tests next time she goes to see him. At least she sort of said yes she would do that. I kept repeating it. She said she remembers a lot of things; she just doesn't remember things that aren't important. She didn't remember I visited them for their anniversary party. Was my visit not important? I know she doesn't know what she actually doesn't remember and that was her best explanation. I told her she doesn't want that to get worse and the doctor can help her.

I think everyone else around her talks about this around her and not to her. I might be the first person to directly advice her to talk to her doctor about it and ask for tests. My dad told me he talked to her doctor and the doctor said to wait and see. I think this deterioration is going rapidly and treatment can't wait. I've seen my friend's father going through this and my friend's tough journey dealing with it. Now my mother is going through this when my dad isn't well either to take care of her.

What has been your experience in this kind of situation? I am not close to my parents both in terms of relationship and physical location. I told my mom to call me whenever she doesn't feel ok or just need to talk about something. If I need to I pass on info to my brothers and sister in law so they can arrange something to help her. I feel a little guilty for being far away and not having to deal with this issue day to day myself.

graceylou 8 June 30
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0

Even if she had a minor stroke, its time that you and your siblings not leave your parents alone and start looking into home health, nursing home, medicare, insurance, long term insurance, www.alzheimer.com, elderly services offered by your county, city, medical power of attorney, financial power of attorney, DNR, will, trust etc. Its a tedious process. My own experience, my father was diagnosed in his 50's . In his late 40's he would get into anger temper, cursing, getting violent, that led to him being incontinent, etc. Me and my siblings where quite young to recognize, that he was loosing his memory. My mom was always handicap and had lot of health problem but her mind was very sharp. So once we realized we start keeping our father in our homes away from mom, because one she couldn't take care of him and second they both would get into fights. We all took turn. My mother is much younger than my dad. In 2011, she broke her femur, titanium rod, replace twice, and in few year she had mild stroke. That led to few other strokes. But in a years she lost her memory, and with in a month the last stroke, forceful treatment from the hospital, with intubation, life support, all that took her away in 2013. In her last month she would just cry and sleep. One of my brother never left home because he wouldn't wanted mom alone. He did go to work and wasn't very comfortable changing diapers for mom. My dad is in vegetable state now, but he is still around. I had changed my dad's diaper for 4 years. One of my brother said my wife is not going to take care of my parents, but now she have him. My youngest sister in law took care of my dad too. she was actually mad at her husband for leaving to work and not worry about my dad. My brother have to travel for work, he have to pay the bills. Even thought I asked them to put dad in nursing home, my brothers are to scared to lose him. I was never closed to my parents either, but when time came you have to roll your sleeves. The first day i brought dad to my home, i had a nervous breakdown and end up in a emergency room. Even the flight to bring dad to Texas was not easy, because he would try to eat everything and then cough it all out. I was lucky that we didn't get kicked out of the plane. I didn't learn my lesson and took him to the beach one time. He dropped his pants in a gazebo and start peeing. He was almost getting arrested but luckily the cops believed me that he is not well. He would not keep his pull up diaper on and I had to fight him to put his diapers. He would constantly throw up, eat whatever he wants and then toss it all out. Not to worry not all alzheimer patient, react that way. Some just talk, and ask questions, and think you are there mom and dad. Eventually they are supposed forget how to eat, and then breath. My father did came to point where he would think I am his mom. He would fight with me that he needs to go home, and scream for his mom, dad, aunt, siblings to came get him. He have tried taking my car but then he will forget where he was going and then came back inside and start eating or drinking or start socializing with me. Its nothing personal, there brain is became a mesh. Just play along, what ever your mom say, the whole ordeal became quite comical after a while. Classical music, or what ever music she liked in her younger year will help her sooth her. Good luck to you as this is really a lot of work, and sooner you start and get organized, your life would be much better. Medical equipment, such as bed pan, gait belt, medical bed, toilet seats, shower chair etc are also thing you want to look in too.

Arshi Level 5 July 1, 2018

My sister in law is looking into getting Social Services to make an assessment of living conditions. On the medical side I'm trying to get my Dad to press her doctor for tests. My older brother lives in the house with them but isn't a very good caretaker. Basically he lives there because my Mom wants to keep babying him. He wouldn't even change light bulbs or batteries; I did those when I visited recently, took only a few minutes. Between me and my younger brother and his wife, we are compiling information and observations to see which is the best direction to follow. My parents and my older brother don't like outsiders meddling in so it would be tough to get them to cooperate. Forcing things could backfire on us who are really trying to help.

@graceylou I am sorry, its a tough route, I have been there. There are support groups for family members which should be linked under Alzheimer website. You are eligible to join even if you are not a direct care takers. There are lot of good stuff happening to help the family members. Most and all are free to caregiver, family members. Until unless you are trying to get CE credits and you work in the same field and you need to get continue education credit to renew your license. Otherwise public are invited. Most universities, hospitals, drug companies, are doing lot of educational seminars. You don't have to live in the same state of your parents to attend them. At my first visit to the doctor with my dad, the doctor turned around and told me I am the one who need help. She told me to find support groups and join them. Yu can do all this on your own with the help of the internet. Its a nice place to discuss your issues, assimilate with others who are in the same boat as yours. Most of the CE, events I went to had a very nice feel, with appetizer, vendors, goodie bags, gifts etc. You get to talk to MD, lawyers, nurses, agencies etc. Visiting physicians worked for my dad. It took me 2 years but I was able to find a visiting physician in my area. They came home, did all the test, brought all the machines, etc. In the end everything was much smoother than what I started out with. You did the right thing to reach out to this group here, and sounds like you are organizing yourself for the turmoil. You are a good daughter, I wish you lot of luck.

@Arshi Since we are in Canada, the processes might be a little different. With socialized health care, while we have most services covered by the government, we are also at the mercy of the health care system. We almost have no say in how care is to be given and when. My Mom's exams and tests will all be free of charge, including visits to specialists, and I believe medications are also covered to a certain amount in their province (health care is provincial). But at the same time, they also have long wait times for care and services. Whatever we try to do will be a slow process. At this point in time, we need to figure out what is really going on with my mom. Her doctor doesn't seem to think it's an urgent matter. And my mom thinks she's just forgetful. My brother and sister in law are probably in the best position to figure out what we should do since they live in the area and know the health care system there better.

@graceylou, I am so silly I didn't even bother to check you are in Canada. have a good one.

1

My mother used to call and say she lost the kids and can't find them. I lived 75 miles away so I had to console her. I told her the kids were fine and they were with their mother. She would be alright. Finally she could not live alone and we found a nice place where she could make friends and have people to talk too. Now I am going through the same thing with my oldest sister, that's life.

2

If this happened recently and is drastically different than when you last talked to her (if it was recent) I would have her checked by the doctor. It could ne UTI. I am a social worker who worms with elderly and disabled and assess them often
I had one lady who ended up at our ofgive t0 miles grom her house driving. She made no sense and I called the police in town she lived to find out if family. It was a monday. I got ahold of her son and he daid she seemed off the weekend bit has always neen sharp as a tack. Turned out she had brain bleed and with medication 1 week later was ok.
It could ne dementia but if shocking and symptoms happened quickly I would tske her right away. Just realized you are far. If the doctor said to wait she just may have some short tet memory loss
You remember how to do things you have done forever but may not recall what you ate or the anniversary party. It is like not storing new things but having access to files in head stored before.
Try not to worry and it is best not to repeat often about her being forgetful as it can be upsetting to her. Good luck. Message if need to talk.

1

My mother died with dememtia. If there is anything I would change about the decisions I made during that time it's that I would have gone to much greater lengths to protect my mother from living alone. I wanted to move her in with my wife and me but my wife refused, saying living with my mother would be hell for us and likely destroy our marriage. Living alone likely accelerated the rate at which my mother lost her facilities. I know for sure living alone was difficult for her. Two years later my marriage broke up anyway.

0

Experts say that cannabis could cure Alzheimer's if lawmakers would chill out and legalize it.

[forbes.com]

Studies have found that cannabinoids can reduce neuroinflammation and promote neuroprotection. Even more exciting, prolonged administration of cannabinoids continued to reduce inflammation in Alzheimer's patients. These results were again reported in a follow-up study.
CBD oil can even generate new neurons in the hippocampus region.

[solcbd.com]

Since I live in Canada, Cannabis will be legal nationwide for medicinal and recreational use in October. I’m not sure how physicians are going to incorporate it into their practice.

@graceylou You don't need a doctor..you can buy CBD oil anywhere and I take cannabis oil for cancer on my own..nothing to do with doctors.

1

My favorite uncle ended up with Alzheimer's. As it progressed further and further the thing that seemed to work best was focusing on earlier times in his life as his memory deteriorated. My very last visit he totally didn't recognize me, although he was still able to remember everything that happened from his early twenties. I covered up my sadness and just showed him joy at going over his old stories. If there's anything you really need to talk to her about, sooner would be better.

1

My mother was diagnosed with dementia. She started falling first. She also had to have major emergency surgery and from then on her mind went downhill. She didn’t remember my name in the end but always had a big smile when she saw me.

Sometimes when people have to go to the hospital it can exacerbate symptoms
We file memories in categories
.
Like rooms. It is why we leave one and get in other room and can't recall. Then start back or go back to shere we started we remember. Some states have in home services when spouse can not care for other

0

I don't think these have been wide spread in either side of my family, ive heard of a few people that may have had it long time ago before they passed , in the last few years, my mom had a friend that just died this January from Complications from both of this brain diseases. I would say that her doctor needs to take your moms case seriously. What you are describing sounds like symptoms that go with these type of diseases , both are awful i know

0

My mother was deeply demented before she turned seventy. She was such a flake that many did not notice. Within a few short years she knew neither my sister nor me.

My mom was in control of household things most of our lives. She still tries but things are getting out of control. The house is going into disrepair. I'm pretty sure she won't even know who I am soon.

1

The first thing to suspect is medication and/or medication interaction, ( even things she has been on for years), dietary insufficiency, (like B12 degeciecy),plaque buildup in arteries, particularly caratoids, diabetes onset infections like bladder infections, etcetc NO dementia!

Dementia is the diagnosis when all else has been thoroughly checked out.

That is why I want her checked out. We don't know for sure it's dementia. But my dad having been a doctor and my aunties who are also retired medical professionals all suspected dementia. Apparently, her doctor has done her bloodwork and didn't say anything. I am suspecting her overuse of random dietary supplements may be interacting with her medication. I don't think she tells her doctor she is taking all these supplements. The onset of this issue seems to coincide with the overuse of supplements. I had told her to check with her doctor a couple of years ago before taking them. She said her doctor didn't need to know. My dad had warned her about the supplements but she said he just didn't want her to be healthy.

@graceylou it may be time for assisted living? One of the Huge perks is medication dispensing/supervision.

0

It's heartbreaking,for those family members,watching loved ones fail,minds that made dinner,drove to appointments,could recite poems from their childhood,slowly fading away.....

Definitely. It's hard for family members. I can't imagine being them in this confusing world.

@graceylou Maybe someday there will be advanced therapies and drugs to combat this scourge of the elderly(and those not yet in that catagory). Autism is another mysterious brain disorder,why at a certain age do they quit talking and shut down?

1

Get power of attorney. Depending on the amount of personal assets, they need protecting so that they can best be used for her care, and also to be able to have a say in her place for whatever options will come next.

1

Sadly, I do have experience with this, both personally and professionally. The thing with someone who has dementia is do not argue with them or attempt to reorient them. Play along. If they tell you they are worried about who is going to feed their horse, and they haven't had a horse since they were a teenager, tell them it's all fine, and that you will make sure the horse gets fed. Hours later, they may not remember that they even ever had a horse or asked you about it. Dementia/Alzheimer's does not follow a predictable timeline. Sometimes, someone has mild signs for years, and then cognitively goes off a cliff in a matter of weeks or months, but usually the onset is gradual and they develop coping mechanisms that keep even those closest to them from realizing what is happening until at some point, it becomes impossible to ignore. Focus on making sure her environment is safe, that there are people around her who can keep her safe, and that the home is set up (while she's still living at home) to make sure if she starts wandering she can't get outside without activating an alarm. It's a horrible horrible thing to have to stand by and watch happen to a loved one. You mourn them twice--first you mourn the loss of the personality and then later you mourn the death of their body. That is how it was with my mother. It took her about four years of decline before my father finally came to the conclusion he could not manage her at home and keep her safe. She went to a nice Memory Care living center and she actually seemed to do a bit better there for the last few months of her life, but then had a cerebral hemorrhage and was gone quite quickly. By that point, we all agreed it was a good thing as she was more and more no longer in the present.

We are trying to figure out how to make arrangements for better care at home and to have better care from the doctors. At this point I don't think it's helpful to go along with her thinking and she can be corrected. At some point, we will just have to go with it. I don't think it's fair with my mom right now to not tell her the truth instead of just going along. But I can see later on it would not convince her at all no matter what we say.

@graceylou Early on, yes, but do it gently. The degree of denial is usually pretty high and someone with disordered thought processes is generally not going to be able to be objective about their own situation. It would be good if during her more lucid moments you can ask her to participate in decisions about her wishes. We did that with my mom, but in the end, some of her wishes were trumped by the very real difficulties keeping her safe and uninjured. However, I feel that it does show respect and letting them keep their agency with small things is good. For example, if you ask someone if they want something to drink, they might say "I'm fine" (not eating or drinking enough fluid becomes a significant problem as the disease progresses), but if you ask them if they would prefer iced tea or some juice and give them the chance to make a decision, they'll choose one and drink it. That sort of thing.

@graceylou Doctors seem a bit torn on how effective some of this medication that is supposed to slow down the progress of the disease is. I know my mother's doctor didn't want to prescribe anything for her, either. It was a source of frustration to me, but you know, they'd been going to him for decades and refused to get a second opinion. Sigh.

@seaspot_run Yeah, totally understand. I don't know my parents' doctor at all. But he doesn't seem to be a good one. I asked my mom if she had her bloodwork done recently and she said of course. I asked what did the doctor say. She said he didn't say anything. I don't know if she lied or he really didn't go over it with her. I can't imagine she has no issues since she's on several meds. Seriously, now the policy is you can make a doctor's appointment for one concern/ailment only (say a rash). If you have more than one concern (say a rash and an arthritic wrist), you will have to make two appointments. Older people will have multiple concerns, so this means they will have to go to numerous appointments just to have their issues addressed. It's hard for them to get around as it is. My mom's solution is to just not bother to go. While I was there, I took a call from the referring clinic for an osteoarthritis specialist and since my mom was in the shower to took down the phone number and made sure it was correct. My mom then called the number and the specialist clinic did not have her name down for anything. My mom just said ok, hung up, and said it doesn't matter anyway. I would have fought that receptionist until she found her name but it wasn't my business.

0

It is more than sad to watch the once keen minds slowly fail,forgetting conversations,where things are, and to get lost in their own homes. Is that our fears? To one day be like them?

I am certainly going to do all I can to avoid going into that path. My mom was an avid cook and baker. Now she can barely get herself together to do any of that.

0

Is it heredity,environment,food,water,and maybe air,or has the disease been around for a long time and given the term "Senile" and that was good enough? Many years ago,it was thought preparing food in Aluminum cookware caused the problems.

It seems there's been a lot that's proposed as a cause, even dietary fats that clog arteries in the brain. I don't recall anyone else in the family with the disease. Her brother had died early. Her sister as far as I know is doing pretty well. Their parents died relatively young by today's standards. Yeah, what part of it is just aging and what part a neurological disorder, who knows.

1

Read up so you understand dementia. You don't mention how old your mom is. It is considered Early Onset if she is in her 50s, and that is not a good sign. Many people with Alzheimer's tend to do better early in the day, and the night time brings on the dementia, otherwise known as sundowning which sounds like may be going on with your mom. Dementia is one cruel ass disease, it robs the victim of their personality and leaves only the shell.

I've read of a severe case of a Man in his 30's with extremely early onset. I suppose it can strike at any age.

Yes, I know a bit about dementia and alzheimer's Definitely not thorough enough. It's not early onset. My mom is 74 and this just started the last year or so. I'm not sure if there's a pattern with her since I'm not close by to observe.

Agree this sounds like sundowning which can be a huge problem for the caregiver. Try to keep them from sleeping during the day. The caregiver needs to sleep and they can't if the person they are caring for is up wandering all night.

2

I haven't personally, but two of my close friends have recently gone through this with their mothers both of whom l knew. We had many conversations about this. The frustration for everyone is exhausting. It is an insidious disease. At times they turn into people you don't know. I am truly sorry this is happening to you and your family.

Thanks, yeah. I'm a little miffed that others are talking around her and not to her about this. That's my feeling at least anyway. While she still has part of her mind intact, I want her to understand what is happening and pursue her own care in this matter. I knew how rough it was for my friend with her dad. I knew him well too, for years and years. He doesn't recall who I am at all, when it used to be, Hey there Grace, how is everything going? What are you girls up to (with the Irish accent).

4

My mom was diagnosed with Dementia a few years ago. We have a home health worker come to her home 3 days a week, and my sister and I share the responsibility of making her dinner and getting her to dr.’s appointments. She’s not allowed to drive anywhere. The amount of time I spend taking care of my mom may have been a factor in the breakup of my marriage. I don’t know if this gives you any insight, but your mom is probably going to require a lot more attention.

Hermit Level 7 June 30, 2018

That is a big issue. My dad has a problem with his eyesight and cannot drive obviously; he can barely walk around. My older brother is designated as a live in caregiver but he does very little in the way of care giving. Trying to get an outside caregiver in would be a challenge because my parents have refused outside help, especially strangers. We have been trying to get them to sell their house (worth close to $ 1 million) and move to a smaller more manageable space, but that has gone nowhere. My older brother lives with them and my dad worries about him, where he would go and how he would do on his own!!! I live a 14 hour drive away and obviously cannot simply visit anytime.

this is the kind of post I wish we had something other than a "like" button on this site. 😟 It's true that caregiver stress is often a factor in fracturing marriages. We are sandwich generation often torn between our own children who are still to some extent needing our support and financial help and our parents who may have Alzheimers/Dementia. Delayed childbearing is only going to make this more common where people who are still in their 40's are caring for children and also their parents who are now in their 70's and early 80's and having cognitive decline. Hugs.

3

I took care of my dad how had alzheimer's. It's not easy, best thing is make sure they are on the drugs that help slow the disease and there doctor can help with that of course, it was the hardest thing ever had to do. My father was a person with a super ass high IQ, American History Teacher (high school). It was hard to see such a smart man loose everything he knew. Also if you are going to be taking care of them, the doctors help you with stuff to on how to deal with it. Also its hard but you have to learn to laugh at the stuff they will do as it gets worse to. Just remember, they can't help it.

At this point, I'm not sure I can laugh at the stuff she does. To me they are scary. My dad told me she woke up one night and asked where my younger brother was. Well, he's been living with his wife in their apartment for 15 years but my mom was worried that he hadn't come home yet. I saw her plug in an electric kettle to boil water. About 10 minutes later, she asked me and my aunts, Who boiled the water?. We had to tell her that she did. She didn't recall at all that she did. Luckily it's the kind that turns itself off when it's done boiling. I told her I worry she might turn on the stove and forget about it. She said she wouldn't and doesn't do that although my dad said that she had done that.

@graceylou As the disease progresses,your mom may want to find her Parents,and wander off,locking the doors with a key may be one way to stop her from doing this. I was reading something about an inventor who made socks with sensors that would trigger an alarm,when the patient go up from bed. There's many items now, that help deal with this disease.

@graceylou yeah its hard to deal with alzheimer's. My dad had what they call sundowners, and he would wonder in the middle of the night, one time he took off in the snow, naked and barefoot. that scared the shit out of us, some how in the snow storm he made it to the eagles, about 3 miles away. we never figured out how he did that. He said, i just wanted a beer man. but we got him home safe and sound. atleast he didn't turn stoves on, but he would take frozen goods out of the freezer and take them back to bed with himself and naw on them though. mostly steak so it wouldn't make him sick or anything. but still. all you can do is keep an eye on them, when they bad enough, retirement home is a good idea, cuz they keep track of them on every move, doing that though, one should always visit every day, i would visit my dad when we put him in a home we would visit him (me and mom) 3 to 5 times a day. its hard though, this disease is truly evil on all levels. Just before my father passed away, he couldn't even feed himself walk or anything.

@Louise1920 I've heard about the wanderings. My friend's dad sometimes took the car keys and drove somewhere and then not know where he was. He's at a care facility now, but he escaped twice from the supposedly secure residence. He was found once by the police wandering outside in mid-winter in just his pajamas and slippers. I really want the doctors to start dealing with this issue as soon as possible and not wait.

@graceylou My dad took the took the car keys (280 bucks for a new one!) and lost them, and we never foudn them, we sold the house when mom and dad both passed away, we never found the keys any where. no clue what ever happened to them. go figure. just glad he never tried to drive, that would have been super bad.

@cobra3282000 Yup. My friend's dad used to wake up early in the morning and roused my friend because he was late for work. He has been retired for a long time. Nothing could convince him so she had to load him up in the car and drive him to his old work place and the workers there kinda played along then she'd drive him home and all would be ok, until the next morning. Once he went into her room in the middle of the night and asked her who that old woman was in the room with him upstairs. She said that's his wife, and he said no that's not and that my friend was his wife. My friend had to lock her bedroom after that.

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