Hi, i'm new here. I've been browsing around and I learned alot from all these posts and I would like to first thank you for your help.

My father was diagonosed with Dementia about 3 - 4 years ago. After he lost his job (I believe it was cause of his memory loss) he just started going downhill. We brought him to the doctors and they said he was in the early stages of Alzheimer's. Currently, they said he is now in the 6th stage. He cannot go to the washroom without making a mess, he thinks people are yelling at him, he cannot remember alot of things (except for bad things in the past), he cannot focus on things and he loses his temper alot. When we try to take him out, he tries his hardest to walk away and he thinks that every little kid around him is his grandchildren. He has many more symptoms but I guess it would take alot of space. Anyhow, the only thing about this is that he's only now 59 and turning 60 in November. His younger sister has something wrong with her too, i'm not too sure what it is but they just told me she went crazy.

Is he too young to have it? When I tell people he does, they don't believe me because of his age. I'm afraid that it's not Alzheimer's. Alot of times he talks to himself or someone in filipino and when i try to talk to him, he only talks filipino which i do not understand. Anyhow, any advice would help me.

Oh and he also will not let any doctor do any tests on him. When i took him to get an EEG he got so mad and kept walking out.

Thank you again...

Gigi

Gigi (what a pretty name!) it sounds like he does have Alzheimers or another type of dementia. It is not too early since it happens sometimes in younger people. I am so sorry you have to go through all this. This site can be very helpful just for moral support and also for advice. It is a horrible disease. I am hoping that research will continue to make it easier to treat and someday even to prevent. This is my advice to the new young people "on board": don't worry about your own future. By then there may be an easy way of preventing it. When I was a child polio was raging, my own sister got it, and we were all scared to death of dying of it ... now it is virtually wiped out. That seems like a long long time ago but it was in the 40s and 50s, and I am now still a 'young' 66.

If we try to do our best with the person we are helping to care for, we will learn how to cope with this horrible disease. My Mom has it and she is 96. We are lucky she was normal until around age 91.

It is the world's hardest job to be the caregiver of a person who rages at you, doesn't appreciate you, is annoyed by the necessary restrictions, forgets what you said or even that she just saw you. etc. I did it for 5 years and my brother then took over.

Do the best you can, but have a life of your own outside of care giving since it can consume you if you let it.

Most caregivers have siblings who do not help as much as they should. You need to get their attention and demand help.

I pray for everyone on the Board every day, and you are now included.

love to all.

Martha

Hi Gigi,

Has your father been going to a neurologist. Maybe he can give him some medicine to calm him down - or his family dr.. Also, some alzheimers patients do not do well (the further along they are) outside of there well know areas. They get very confused and react in different ways. 6 is pretty far along. I think my father is a 6 also. He is just the milder type ad patient, so far!

I hope you can get your father to go to the drs. offices. My dad love dr. offices, I think he likes the attention!

I agree with Martha on the caregiving issues. All we can do is try to help them, and have patience. That is the hardest part of all for me. My dad does not understand, why we try to "rush" him. He just goes slower everyday. Have much, much patience and understanding and love!!! Good luck to us all. And take care of yourself.

Wannabe

Hi Gigi! Welcome!

59 is very young to have this awful disease. But there have been rare instances of people in their 30's getting it. I wish there were a definite way to diagnose this but there isn't. Unfortunately, the only way they can diagnose AD with 100% certainty is by autopsy.

There are drugs out there that can slow the progression. And an antidepressant worked well to stop the angry outbursts in my dad. If your dad isn't on an antidepressant already, it is very much worth a discussion with his doctor. My dad hasn't had any violent outbursts since being on Zoloft.

I'm so sorry that your dad, you and your family have to go through this. It's not easy for anyone. But we're here, like Martha said, for suggestions on what has worked for us and moral support. Many of us don't get even the moral support from family. It helps all of us to know there's someone out there who understands.

Again, welcome!

Love, Barb

Thank you so much for all the support. I feel as if no one understands what my family and I are going through. Sometimes when I tell people about my dad, then give me this blank stare as if they dont know nothing about it.

My mom feels that when we give my dad medications that's when it gets worse. You know the days when the temper goes up and the hallucinations start. But I dont' know what else to do. We plan on putting him in the day programs for him to have some company since my maternity leave is going to be up next week and no one will be with him.

I feel so helpless sometimes because my father doesn't know me or gets mad at me for trying to help but i'm happy to find support here, making me know that I am not the only one who's going thorugh this.

Thank you again...


Gigi

I was surprised at how little the average American knows about this disease, when I would tell people my grandma had it, they'd just assume that she was just "getting forgetful", like "she has a touch of the alzheimer's" is just a common expression you label every old person who gets confused. I don't think they knew it was actually a disease. Even more mind-boggling since Ronald Reagan increased public awareness for this disease a thousand fold, and other celebrities like Charton Heston have come forward. Anyway, any age is too young to get this disease. So-called "early onset" is diagnosed in people in their 40's and 50's, and it's rare, and especially devastating since it affects people in the prime of their lives, often working adults with families and kids to care for.

I think many people still don't understand the scope of this disease. People still think the worst part of it is the patient loses his/her memory. I wish that's all there was to it. People die from it and most people still don't get that. I think if people saw what really happened to President Reagan, they'd understand a little more.

People don't realize that AD patients could lose their ability to walk, speak, use the rest room and even in extreme cases lose ability to breathe without assistance. That's where we can educate our relatives and friends on the seriousness of the illness. If they accept it or not is up to them.

Love, Barb

My pet peeve is JOKES made at the expense of AD patients. The average person thinks Alzheimers is in some ways 'silly' - like a baby learning to talk or a child asking multiple questions Funny. Amusing.

Ha ha ha your mother threw out a perfectly good brand new Roast Beef? Ha ha ha!

Ho ho ho, she puts the keys in the refrigerator? har har har.

NOT FUNNY TO THE ONE WHO LIVES WITH IT!

Second pet peeve are TV ads for AD drugs where you see a lucid intelligent middle aged lady telling how scary it was before she began taking (you name it) but NOW she has her old life back!

Yeah, right!

That would be GREAT!! Too bad the drug being touted doesn't have that effect. Read the small print. At best it MIGHT prolong the good days by 5 to 18 months .. might slow down the progression od the disease. NO CURE has yet been found.

I cringe when I hear the jokes, but I boil when I see those ads. LIARS, all of them!!

ARGHGHGHG!

Well - we 've got to be allowed to scream somewhere, and this is it!

love

Martha

I agree with the jokes. I don't understand why people would laugh at such things. My good friend worked with AD patients and she was saying how cute it was that this lady couldn't remember whatever or how they acted. I didn't know what to say and since it wasn't good, i didn't say anything at all.

I hate that I can't go out with my dad anymore. I hate that he wasn't able to walk me down the aisle at my wedding properly or dance the father daughter dance. I hate that he can't know how beautiful his grandchildren are.

All these feelings are in me and it's so hard to express it to people who don't really know what it's really about.

But i know i need to cherish the time that i have with him left.

Thanks again for listening...

Gigi

Oh yes, I HATE that commercial too! What ever happened to Truth in Advertising???? :mad:

And the people who make the jokes are just plan insensitive (among other things!).

Fortunately, I haven't had anyone really make jokes about dad's AD. What gets to me is when people think he's still the same person the once knew. He can still be so convincing (esp. over the pkone). And he perks up when people visit. He acts more like the person he used to be. But he's still different. Dad is visiting my sister in Alabama now and she finally acknowledges his decline. He was diagnosed last year with AD but I estimate that he's had it for about 5 years, maybe 6.

Gigi, I know you miss your dad very much. No one understands that like we do. I once told a friend I missed my dad. Her reply? "At least he's still alive." Yes, he is alive. But he, the dad he was, is gone forever.

Through my experience with all the people who had/have AD in my family (but especially my father), I have come to realize that the grief of losing my dad to the SYMPTOMS of AD is, to me, as bad as putting my dad in a casket. The only difference is the grief is prolonged.

Do you remember the movie Back to the Future? Remember the photograph? As Michael J. Fox's character was looking at the photograph, the person in the photograph was fading away. I guess that's how it feels to dad to lose his memory. But that's how it feels to me too. As dad's disease progresses, his personality and everything that made him HIM is fading away from me.

I'll always remember the good things about him. The good things are what keep me going.

Enjoy your dad however you can. Go with the flow. If you can't take your dad out to eat, order something and bring it to him. Go out in the yard and eat, just the two of you.

I truely believe that there are things AD patients understand and just can't communicate. Talk to your dad on his level, whatever level he happens to be at that day. Try not to correct him if he says something that's not right. When I fisrt moved back home with dad to take care of him, I corrected him quite a bit. Correcting him made him very angry. Now I understand that every time I corrected him, I solidified the fact that he was forgetting things he should have remembered. This hurt his feelings deeply.

I'm so happy you came to the boards.

Take care!

Love, Barb

Hi Gigi,

Please let me know how the adult day care goes. We are thinking of trying to get our mom to let our dad (alzheimers and parkinsons) go there for maybe 2 days a week? Just to start. There is one that is 5-10 min. from their house. Have yall applied there yet. If I understand correctly, you have to fill out forms to be admitted (some by a dr.) - this is Texas, I do not know about where you live.

Do you think your dad will fight going to day care? I know my dad does not want to go now, but maybe in some months time?! We also have to wait til my mom (they still live alone - 1 hr. away), gets good and tired and fed up and needs some respite!

Martha - I agree about the ads in print and on tv. They are just a con! They do sometimes help a little, but that is about it. I think it should be called false advertising, but of course there is the fine print!

Yall take care. Wannabe

So true Barb! It is a long drawn our mourning. I mourn for my Mom as she once was. Now that I don't live with her I am remembering more and more of the happy times and less of her deterioration.

And yes, criticizing or correcting her was always bad .. it took me a year to get that right ... she was angry, annoyed at me, and loudly denied having made the 'mistake' whatever it was, even to the point of saying "I didn't do it" when poo was found on the floor (we had no pets!)

It is a long hard road.

Love,

Martha

Hi ToBeFreeToRoam Wannabe

I will let you know how the adult daycare goes. We are still trying to find a good one that we might think he will like. A month ago we took him to a nursing home, just to see how it is. We never told my dad what it was and inside it's like he kind of knew what we were doing. He was freaking out when we were there and when we got home, he kept saying "i'm sorry, i'll be good" to my mom in filipino. I'm in Ontario, Canada. Through my sisters work, there's a place were we receveid a package about what we can do about AD. That is where we found out about the daycare. Anyhow, when i get further details, I'll let you know.


Gigi

Hi Gigi,

That is so sad about your dad getting upset at the NH. I guess that is how it is most of the time. What level is your dad? I think mine is a 5-6. Is not 7 the top? I cannot remember. I have not even taken my mom to any place I have looked at and I have not told her yet, that we (my sister and I) have looked at places to have my dad stay. Either day care or full time.

One more thing: When I visited 2 places that had Day Care, there were people there for the day. They seemed very happy or ok with it. But they may have been going for a while. And I am sure it depends on what level they are. One man was dropped off every morning and picked up every evening - 5 days a week - while his daughter worked. I guess you do what you have to do! That man had friends there, that were there as permanent residents.

Let me here your details when it happens. Take care. Wannabe

Gigi:
In most instances, the meds can actually slow-but certainly not stop or retract-the effects of the disease. As for the drugs for the paranoia, hallucinations, etc., these are to keep him comfortable and more on an even keel. It has been documented that AD patients who are not on or are taken off meds progress much more rapidly.
I felt guilty when I would have to give him an extra med for agitation, one that I crushed and put in pudding. A wise nurse put it to me this way: "When you are upset about something, you know how you yourself feel torn up inside; imagine what He goes through when he starts to feel agitated or hallucinate or have delusions; he must feel confused, and awfully twisted inside to. When you medicate him, you are helping to resore peace to his body, to ease the suffering of his upset." Those words from that special nurse really helped me.
I know just what you mean-people that have had no previous involvement with AD cannot possibly understand what you are gong throuh! For me, I had guilt over "sneaking" him meds (because he would not take them) lying to him about the childproof knob covers on the door, a major source of agitation, having a video camera on him at night, etc. All these things I did for his health, safety and well being, and it tore me up, especially the day when I had to sell his beloved car behind his back but people dont understand. Unless they've been there, they don't know! And what's more? We can't expect them to...we know what a living hell this disease can be...we are educated. We can only keep trying to make them aware.
Love,
imwarbaby

Gigi,
My dad was behaving a lot like yours. He was admitted to a special hospital unit (by a Neurologist) and after spending a week there his medications were adjusted. He was like a different person. Instead of the anger he was very soft spoken and sweet. He didn't have as many hallucinations. You may have to find a way to get him to a neurologist without his being aware of where he is going. I know it breaks your heart but he does need to be seen again. If he is getting worse with the medications then it isn't the right med for him. There is something that will help calm him. Call your local Alzheimer's Association. They have people who will talk to you by phone and and help you find a way to get him the help he needs. He doesn't have to be this miserable. Please make the call. I'm not sure a day program will be right for him until his anger is dealt with. I'm so sorry. I do remember those days so clearly. hugs.

Hello,

Thank you everyone for the advice. I will definitely be in touch with my AD local organization. I think i need as much help as I can. My dad is in stage 6 now and we are going to visit the day cares. They said it was for moderate to severe stages. Do you think there's a way I can have someone come to the house to do tests? Or anything that I can do so they can run them. It's so hard to put my dad in the car, I have to actually carry his legs over to get it inside. Also, he doesnt want to be tested at all. I'm so confused.

We put him on his first medication he was on, Aricept. The one that was making him more angry and making him see stuff was Razadyne. Someone told me that it was a new drug though and still in testing, but i don't know.

The one thing that makes me sad the most was the fact that I didn't have a good relationship with my dad. To make a long story short, he never was home, he cheated on my mom and had a kid with the other women. I hated him for that. I did eventually forgive him when he was first diagnosed but it's like i'm losing him twice now.

Anyhow, I will take all of your advice and i'll try my best to do the best for my dad.

Gigi

(We never told my dad that we were going to put him in a home. My BIL was suppose to stay home with him but couldn't and my dad was crying, so my sister and I had to take him. And even though we never told him and he couldn't really focus on much, he still knew)

Hi GiGi -

I wrote an earlier post and thought I clicked the "quick reply" button in time to beat a brief power outage we had, but see it's not here.

You have my sympathies, too. All you can do is to get the best information you can, make the best decision you can, then don't kick yourself because you cannot fix it so it's all okay again. Come here for ideas, suggestions, to help others, or for an understanding and listening ear when you need that.

My little mother benefitted from a mild anti-depressant (she was crying all the time and irritated she could not stop crying) and a mild sleeping pill (up all night). Maybe your father would benefit from those type meds. too.

Be good to yourself, too. You're important and deserve gentle care, enough sleep, and time to breathe.

Wishing you well - Barbara

Gigi, Barbara is so right!

I think now - looking back - that I could have coped better if only I had been able to sleep through the nights.

BUT - I was only 1 out of 3 decision makers and my brother and sister both felt Mom was already taking enough drugs. So not even a mild sleeping pill was added. I was also afraid that sleeping deeper might cause her to wet her bed and she always flatly refused to wear depends... (she said she wore them when visiting my sister, and I bought two packages in 2 different sizes, but she never wore them for me ...) She got up several times a night, and I was always awakened too ....

Since I had to leave at 6 to go to work, I found myself getting maybe 4 hours of sleep, maybe 5 ..interrupted by Mom walking around in both of our bedrooms, often with a flashlight, looking for something, or out in the kitchen reorganizing things (messing up any 'order' that I had achieved...)

So do remember to do whatever can be done to make sure you still get enough sleep!

However I am really glad things turned out the way they have: Mom is with my brother and SIL and it all seems to be going well. It is now just over 2 months since she moved in with them and a couple of days until I have been here 2 months!! My grandson starts Kindergarten on Wednesday, and for the first time in many years a school year is beginning and I am not teaching ..

No, I don't feel sorry about that - I chose not to apply for jobs or even look into it ..thinking, if I can manage financially without a job I will continue to be 'retired' .. and maybe do a little tutoring on the side ... I have a lot of experience teaching English to people from other countries, and might be able to put that to use here ..but for now I can't believe how happy and content I am in a new place, not working, just enjoying an amazing freedom "post AD care" .

Love,

Martha

Hi gi2cmaf,

Are you going to take your dad to visit the day cares? I would have to take my mom by herself 1st, or she would pitch a fit! She may not let him go yet, anyway. My sister and I think that we will just have to wait until she is so tired, so fed up, and really needs to get out and get away from him!

I do think, if you look real hard, that someone will come out and test him for alzheimers and other small health things. Probably some really nice dr. or nurse. My dad has the best GP/family dr. He even drs. to the patients/boarders at the assisted living/alzheimers place/day care where my dad might go for day care, maybe 2 times a week. That is when we can talk my mom into it.

I think I will take my sister to the 4 places that I have visited next time she comes down. Then we can talk to our mother. Who knows when we can get that to happen - getting my mother to go to such a place and check it out for dad!

I know what you mean about moving your dads legs over. My dad is the same way almost. He can get in the car, but has trouble moving his legs in and over and putting on the seat belt and shutting the door. We have just started doing these things for him. Also the same getting into the bed. Can sit down and lay down, but has a hard time getting the legs over and up. He sometimes sleeps sort of sideways on the bed, unless my mother moves him!

Good Luck to you and let us hear back. Take care of yourself. Wannabe

Hi Martha,

I am so glad you are taking the time for yourself. You deserve it. And I would too, if I were you - not work unless I had too. There is always part-time work and volunteering later, if you get bored!

It sounds so exciting. Moving to a totally different town, different home, different life! You can just take them time to explore your area. See what you want to do and what makes you happy. And you have your daughter and grandchildren, right there!

Take time and smell the flowers! I am very happy for you. Wannabe