New to this page and new to dementia care. Any advice?

Join a support group by contacting alzheimers.org.

I know the wait for a diagnosis is frustrating. Went through a month or so of tests with my husband, different meds trials...hang in there. Keep posting and praying.

Oh My Gosh ! Thanks for all the replies and words of encouragement.
Took Mom back to the neuro two days ago and he backed off on wanting to issue meds ( this confused me ). He says the EEG for left side scored a 7 and he prefers to wait until it is in the 3-5 range before. The reight side data was too corrupted due to the stroke to be reliable( ????). So now he wants to do a second cat scan in July as he thinks this will give him two data points to draw from.
Sooooo, the you have dementia talk i gave mom was counter acted by the doctors wait and see approach.(mom says she was cured by a miracle over night... too funny)

Now I'll try to answer some of your inquiries.
Why did i tell her about the diagnosis? - because i thought it was the right thing to do. If it was me I'd want to know.
Moms diet? - it sucks... she is a carb and sugar junkie and drinks hot tea all day (caffine)
Ignoring the nasty comments - I've had decades of practice. I swear mom is a border line paranoid/ schizophrenic. New people who meet her think she is wonderful and so loving, once they see both side of her they distance themselves from her. The mom blames that on me or my sister because we supposedly gossiped about her. The the nastiness begins.... sad actually. Mom sees herself in competition for attention with the entire world.

Networking / support - my sister helps some but is undependable. I get overwhelmed. My wife is my rock! ( or a bitch whore if you listen to mom).

Thanks for all of your answers. I will post back here later. its a bad night already, my phone has been exploding the entire time I have been typing. MOM again...

My mother has been declining for a long time, but when my sister suddenly died a year ago she went down hill fast and was finally diagnosed with “severe dementia”. My mother's friend had a husband with dementia and we knew how upset it made my mother to hear that word. So we chose to acknowledge her difficulties as her "memory or thinking" problem and that seems to be working very well. Personally I would want to know, but I totally believe it depends on the person.
With dementia the description "long goodbye" is unfortunately very true. We grieve a little every time we are with my mom. As to how to cope, try to get good support. My sister and I share everything and my husband is a compassionate listener. This has helped greatly.
People with dementia become like children except that they know fear. And it is very frightening what they are going through! So try to understand why she may be doing things, like calling you often. Comfort your mom and make her feel secure.
But, also, don’t let the diagnosis take over your life (although that is hard to do). Don’t obsess with trying to maintain things exactly as before (her eating, cleaning habits, etc). Things are going to change. Don’t sweat the small stuff, which there will be plenty of. Get help for the home/health care issues and try not to do it all yourself.
That brings me to my most important advice: Spend as much time as you can "enjoying" your mom. Spend time together. Reminisce, play music she enjoys, do little projects together, let her help you do chores (even if you have to redo anything she did later). Make her feel normal and secure. Just enjoy your precious time together.

Aloha,

First thing is you will find a ton of information right on this web site. You may want to contact the Alzheimer's association in your area for information. Telling her she has dementia would probably lead to more distress. I have been the caregiver for my wife for the last six years. She would be classified about stage 5-6 on a scale of seven. Eventually your mother will have to have more assistance. The longer you can keep her mobile the longer you will delay the final stages of the disease. As the disease progresses, do not take anything personally if she insults you or upsets you in any way. That is the disease speaking. If you become her caregiver, make sure you have a support system in place before you begin. You will need respite care for yourself. Not know much more about your situation I can't say too much more except join a caregiver's support group if there is one in your area.

Good Luck!!!

Patience is a key word here. It does no good to argue or correct, as for telling her, she will just forget anyway so it doesn't really matter. I'm glad to see someone else, miJmitoo, talking about the virtues of coconut oil & dark chocolate. Although it may be too late for my mom, I have changed my diet to prevent some of these things from happening to me. Fortunately I have good genes, my 98 year old mom was still working out at the gym a year ago!

I'll put in my 2 cents. You say your Mother has "always been a handful." She may not believe you if you tell her she may have dementia, but if you tell her she had a stroke, that is more "measurable." If you tell her the truth, she is going to develop manipulative "coping skills"-- I would forget it and you just pay attention to the change in her abilities. Yes, I am merciless and cynical.
Please set the rules of engagement yourself. She cannot do it and it would be all about HER and to hell with you. Doesn't hurt to be proactive.
Gather all assistance you can, from family, government, caregivers, etc.
Do the best you can to see to her care--but that does not mean doing it all by yourself until you can't remember who you are or what your life was like.
Listen to your instinct/ intuition and do not deny your ability to reason and stick to your guns about your boundaries.
Get plenty of sleep, water, exercise, venting, personal time that is not encroached upon by mother. Try not to get resentful or sarcastic with siblings who don't get it. Some do and some never will. Every dog has his day. Mark my words.
It can be healing and a good lesson for your growth, if you believe in that aspect.
If your situation turns out to be even 10% more positive than this warning: Congratulations!
God Bless you, and your family. Take care;) xo

I'm sorry..it's definitely a hard place to be. I was there not long ago with my mom. Her diagnoses came in July....however, I too noticed that things were just not quite right with her. Same thing here she started talking about people coming into her apartment, making messes, and bugs crawling up and down the walls,ants on her table. It was the beginning of the wildest ride of my life. However...the ride came to an end for me and mom in January. The only thing I can recommend...is check into all the resources that you have available to you. Especially ones that will be paid by the state if she qualifies. There are tons...and with those you may receive supplies, equipment and caregivers that will come into the home and bath, or sit with her.
This website is also a great asset to you. You will learn a lot from these wonderful people who know exactly what you are going through...you are not alone. But please add to the conversations...because it's therapy ...and you will need it. Plus someone else might be able to use your experience to their benefit. I know...benefit you say? Wow..sorry there is not benefits from your loved one with dementia...but the more you understand this horrible disease the better equipped you will be. If you have the time..I encourage all of you to google "Teepa Snow" she is an experience nurse in this field and gave me much needed insite to the whole journey of dementia/alz.. Coping, managing, and respite...take care of yourself..because you will need it. Find help where you can. I wish there was a magic wand that can make all this disappear....but there isn't..do what you can. That's all you can do...God Bless you for being there for them. Good luck.

Totally agree with getting all the help you can muster, for your mum and you! Seriously: community, city, private. Call utilities for eligibility for discounts as your bills are going to sky rocket. Money burdens can ad to the stress.
My MIL knows about her illness but we try to always tell and show her that we are here to help. A regular structure, routine eases the fear on their part. Things do trigger, so watch for those and try to minimize. I watched the Teepa Snow videos to really know how to be a better caregiver. That was probably my biggest mistake the first 6months. I didn't understand her issues enough to know how to respond.
The doctors do a wonderful job, however, be proactive with your mother's medication. Monitor and know what she's taking. It doesn't always help.
Keep talking with us, it helps. We know what you're journey is about to be. It's hard but you have ears here.

My husband of 46 years suffered a massive stroke, seemed to be recovering through rehab (regaining his mobility) but is personal memory was gone, didn't know who he was, or that we were married, had trouble with aphasia - when the words he wanted to say became garbled. We worked hard in rehab as in- and out patient, and like a miracle he seemed to be recovering bits and pieces - until suddenly it went backwards. His neurologist diagnosed him with vascular dementia - right in front of him. I thought the bottom had just dropped away from under me, and when I looked at my husbands face I realized he understood what the diagnosis meant for him. And that day the roller coaster ride began for both of us. We had good days, bad days and everything inbetween. Take it day by day, hour by hour, enjoy the funny things that will happen and laugh and hold on to that and remember it, when you feel like screaming, when there are days when nothing seems to go right. I kept telling him that he will be always my bright and shining penny, no matter what the doctor says. And most of all, I started and ended the day by telling him I will always love him. I had no one else to help me - no family, and since he had become fearful of strangers, friends could not help out.
I wish, my husband had not heard the diagnosis, because from that day on he quit trying to regain what he lost - he gave up. No matter how hard I tried to convince him, that doctors don't know everything and he had beaten the odds with his heart problems, it did not work. If I could turn back the clock, I would make sure my husband was out of earshot when the doctor told us.
I wish you the best, will keep you and your Mom in my prayers. As others have said, come to this site often. It will help you to cope and you can vent - we all have been there and understand.

All wonderful posts - good thoughts/advice. There are other great books to read on Alz. /dementia: "10,000 Days, 10,000 Nights"; "Your Name is Hughes Hannibal Shanks"; if you google books on Alz. or dementia you will get lots of choices, but along with "The 36 Hour Day", I've read these all. I would start with Hughes Hannibal Shanks, as it is written by him and his wife, back in the 80's - she was a pioneer in the Alz. department. You will learn much. By now you've had the neuro tests; Dr. will suggest a medication such as Aricept - be sure you're aware of all the side effects of any meds prescribed. Not one single Alz./Dementia patient is alike - so it is hard to put everything/everyone into one category. The best thing is for you to continue to watch her, document the changes, love and support her in any way she needs you. The all hour phone calls, you'll have to decide when you want to answer them with caller ID. Please don't let the calls control your life; as time goes on you may even remove the phone from her access. Get the Health Care POA and Durable POA business taken care of, especially if you're not an only child. As you continue to read posts here you will read about the troubles with such legalities, many nightmare situations out there.
Along with Alz., my husband also has a Meningioma so we are with Hospice now. No diagnostic biopsy, chemo or surgery, as none of those will enhance his quality of life at his age - 86. It is so difficult to watch a loved one to lose their abilities to shave, get undressed and dressed, wanting to see his parents, wonders who I am sometimes, can't let me out of his sight, walks with a shuffle and many times needs a chair ride instead of walking. Basically can not do anything for himself except feeding and his continence, and for that I Praise The Lord!!! every time he needs to go. Has never had any accidents, we use the mens pullup Depends underwear if we're going out for a period of time also at bedtime if he seems more confused, and he has accepted that willingly. This season in our life is not an easy one, but we will take it "one day at a time" and let the Lord take care us and be grateful for every day we have together. We both lost our first spouses to health problems - I was 31 with 4 young children; he was 43 with 2 teenage boys and now we have the "blended family" with "our" son who lives with us to help me with his Dad. Along with Hospice who comes to bath him 3 times a week, a couple of volunteers who come twice a week and Meals on Wheels for him, we feel blessed to also have our children who are supportive in so many other ways. Know you are not facing this alone with your Mom; my prayers are with you and your family as you go forward on this new adventure - it is an adventure you know, because you'll never know to expect or what will happen next. Loves and Hugs.

The hardest part about having to tell them they have dementia ...is having to tell them again and again and again........It's always ground hog day.
I only "remind" Mom when it comes to a safety issue. Good luck and God Bless. My BEST advise would be to save this site and come here as often as you can. It is a life saver....literally. The support, knowledge, experiences and laughter these wonderful ppl share every day has kept me from blowing my brains out.

Great advice above, all of it. Use this site, utilize it to the fullest.

God bless you in your upcoming journey. Know that you are not alone, and try to see the small blessings with your mom even on the worst of days.

Dear Dh40
This site is fantastic to vent fears and terrors. Is good. My wife was diagnosed Alz this last feb. we had a preliminar diagnose of cognitive syndrome moderate about 3 y.a. and I began to observe her vey carefully. Steadelly she was having gaps of memory, soft. socially most of the times was not noticeable.Since during the last 6-8 months it began to be noticeable. Some family members very carefully mentioned it. As to warn me of something maybe wrong,
At the end of the year I was decided to define the condition, and in february it was confirmed as Alz. both clinically and neuro-psychological. Definitive.
Even if I had a strong indication, it was a shock, for weeks and weeks I cried and studied alone. And began taking care of us.
We are sort of alone, we live in a country diferent from mine, hers. That was an arrangemente we decided at marrying almost 40 years ago. She has a sister, living in the same building, that has opted for not being very close. I supuse is out of fear, fear of haqving the same, fear of having to have unwanted responsabilities. Anyhow, I feel alone.
The first thing I did was to select our closest friends and family and tell them via Net, of the situation. Some had disapiered others had being marvelous and are giving us support. But... there is a great but... for how long? They I am sure won´t be close for years, most will disapear. I believe we have to develop new circles, more appropiate.
Another topic debated is about tell them or not. In Alz, is useless, they will forget almost inmediatly, my wife when reading something about asks and gets anguished. For a shorto period. What is the use of having had them several moments os anguish. I have opted for the angle way, to deviate the topic, or mentioning somethig else. And she changes. For my wife works better. In this site I am reading some letters from a med. who has a diagnosed moderate Alz. he understand and comprehends. Is his profesion. Is diferent from my wife. I won´t tell her more.
Information: There are many authors, among them I would recomend Dr Kübler-Ross, at least some of her proposals are dsequate, but they are more to a situation of grieving and death. In another author. Dr, Pauline Boss, I founded very solid bases for our sad situation, she proposes an ambiguous grieve. More suitable to our problem in which the mind is going and going, but the body is here. Present. The person is present, but the mind is desapearing, and is not the person anymore.
Hope this servs you and send you my moral support and prayers

I would not tell her she has dementia. It tends to bring on depression in some people. I talked with my mothers physician about this and she was able to give me some great advice. Her mother has dementia and she is taking her to an elder care psychiatrist. It has helped her tremendously, not that I would do this for my mother. Her mom knows she is having difficulty and she explained it to her mother as this: that the doctor is going to help you to think more clearly. She did not tell her she was seeing a psychiatrist, there really is no need. It does depress them when they realize they are losing control of their mind, their thought process. I would not say anything to her about this.

My MIL was diagnosed with senile dementia, probable Alzheimers. She had all the tests and was found to have suffered "mini strokes." Everyone's journey is different, but in our case her dr. did tell her the diagnosis and she seemed to understand at the time, which was 2 yrs. ago, and the conversation was helpful to her finally agreeing to enter a continuing care community. She is in assisted living now, in a special memory support group. Physically, she is healthy, and we're glad she's in AL since she's engaged in so many activities, and gets excellent care. I have found the following book very helpful, esp. if you've received a recent diagnosis: "THE ALZHEIMER'S ACTION PLAN--the experts' guide to the best diagnosis and treatment for memory problems" by P. Murali Doraiswamy, M.D. and Lisa P. Gwyther, M.S.W. It was published in 2008 by St. Martin' Press, NYC. I refer to it often, and it has received wonderful reviews. You and others may find it helpful, and it is comforting to know we're all in this together. God Bless.

I, too, am in the early stages of dealing with dementia is my husband who is 17 years older than I am. It is the challenging, difficult job I have ever faced. there are days when I am so stressed, I do nothing but watch TV...can't face anything. From all I've learned on this site, the Alzheimer's Assoc site, the Lewy Body Dementia site, there were signs of my husband's problem 5+/- yrs ago. However, because of his strong personality, no one noticed...now I realize it was the beginning of the "showtime" events that take place in people with AD and LDB. It's real and frustrating because the patient shows a whole different side to "outsiders", but to the caregiver they are more natural...and that can be anything from docile and quiet to belligerent and nasty...and at times some of each. Take the advice here...get help now, don't wait. This disease will suck the life out of you more quickly than it does the patient. My husband had all the tests, tried different meds...none can stop it, none can cure it...they can slow it down, maybe and perhaps makes your life more bearable, but don't look for any relief. It will only get worse. In the short time I've been dealing since a major, sudden and drastic decline about 5 months ago, I feel like my life has ended. Nothing to do but keep on keeping on...doing what I have to do, when I have to do it. If I don't detach myself from the reality of this disease, I will be in the psych ward. I keep trying to find a way to cope, but nothing has helped me. So I just tune out, know that I am doing all that I can to keep him safe, and just try to hold out until one of us is gone.

Now that I have read all the other comments, I want to say I disagree about not telling her, when my mother was diagnosed the doctor told her, yes it is upsetting but also a releif as i always remind my mom when she says I am sorry i was so nasty today and I tell her I know it is just the disease and I love you more than ever, you are now the mother and she is the child, hang in there, hugs

My mother has had dementia now for 5 years, she lives with me, your mom should not be living alone. As the dementia gets worse and I know this from experience, they become agressive, arugumentive, and can't remember alot of things, I am sorry to tell you that even with medication, this disease does not get better, the medicine may slow it down, but it will eventually get much worse, it may get to the point that she does not even know you, my heart goes out to you, when she is agressive or says nasty things to you, remember it is not her, it is the disease, she has no control over this what so ever. all you can do is love her through this but i strongly suggest that she be living with someone, if she can afford it which most can't assisted living, my mom can not afford this, so I am her 24 hour caregiver, my mom also has many other diseases and can't even walk without help. so be patience and loving and lets any negative remarks roll off your back. this is an aweful disease and all we can do is love them through it, hold her let her know you will always be there not matter what, my mom is at the stage now where she can't remember what was said 5 minutes ago, as the disease progresses, that will ask the same question over and over again, look for some respite care to give your self a break or walk outside and breathe, will keep you and your mom in my prayers. God Bless

Seek out all the services you can through elder services and utilize them to the fullest. Make sure you TAKE CARE OF YOU!!!

Hi DAH4048, My Mom was diagnosed with AD around 2007. She was worried she had it because she was forgetting some things and her Mom had it and Mom was terrified she would get it. They did a scan and found the plaque on her brain that indicates AD. She was devastated.

Fast forward 6 years and they now say she does not have AD but she did have a brain stem stroke. Over the last , I would say, 5 years she has steadily declined physically but her memory was good up until just this year. ( have just started noticing some memory issues but not too bad). She cannot write anymore- that was one of the first things to go and she cannot read very well now. As of , um, 2 years ,maybe. Her eyes are OK - it is the message the brain is getting, I think, that is messed up. She is wheel chair bound now but can walk just a bit with extreme support. Balance was one of her first issues. She has trouble talking- whispers and she chokes on liquids- in the last year. The doctor just told her yesterday that she will regress more rapidly than a typical person her age because of the damage to her brain stem. She is often dizzy and says she feels drunk. She is on blood thinners and cholesterol meds for the stroke.
I don't think her personality has changed all that much. Not like a person with AD. I think she is still very much her natural self just fractured.
I am not a full time caregiver to her. My Dad is but I try and give him breaks. He is not a natural caregiver and loses patience with her. And she is OCD- but always has been just worse now that she is not active. It can be very frustrating. So my husband says (I have it too ;0)
No,really, my Mom gets things in her head that "have to be done' and will not let up until it is done. She also seems to have an absolute desire to keep my Dad from sitting down. I have been there and he will have finished a task she wanted done (feed the dog, say) and his butt is an inch from the recliner and she starts up again.--"feed the cat" and he will yell-'WHY DIDN'T YOU SAY THAT WHEN I WAS UP???" it is a circus! I swear she does it on purpose!!

So that is my Mom's story.
Blessings to you and your Mom!! Come back and keep us updated or just to say help or vent.

The doctors who evaluated my MIL in a geriatric psych unit did tell her. She forgot. We have never reminded her. We do supportive conversation and don't correct her. Could be tricky in the old days when she would be lucid one sentence and not lucid in her next sentence. The subject changes so quickly!

We were surprised most that she could be so different from one day to the next. She would do entirely different things - all the time.

For my husband the biggest struggle was learning to not try rationalizing with her. He would explain stuff to her a lot, like how to work her cell phone. He learned when she went off on a tangent that distracting works best. Some people can't be distracted - yikes- I feel for their families.

Best of luck, we found out in January of 2012. Hard to know what to do at first. My MIL just enjoys my chattering. Any topic will do, she seems to enjoy the energy.

I've often read that mini-strokes (almost undetectable) can lead to dementia (and other maladies). If the diagnosis is early, possibly a few habits can change in your Mom (does she smoke, drink, eat unhealthily, is she sedentary?). Careful changes (but definitely removing smoking, drinking, and bad food) and moderate exercise daily should hopefully help. Most of all remember and love; try through struggles to make the right decisions (it's hard I know). And definitely keep kindness and humour alive (take essential breaks and keep friends (maybe family) close). And although our Mom's only been 2 years with dementia, and often screaming all day long, we've relied on coconut oil (organic) chocolates, and thankfully we've seen gradual calming and lucidity (not a cure, but a nice relief). Hope this helps DAH4048. Good luck.

May God bless and protect you in this new adventure and may you remain aware of the everlasting peace within you.

A QUESTION: What purpose is served in telling your mother about the
diagnosis?

I've never had that conversation with my mother and don't intend to. Why upset her and yourself? When Mom expresses concern about her memory failing, I just reassure her it's all right, no harm done, and besides that's what she keeps me around for, to fill in the gaps. This always makes her smile and by that time her mind has moved on to something else.

Good luck!

My husband has dementia but realize everyone is different. Here are things I see. Noticed in 07 a start, forgetting words, misplacing and saying someone stole. Well now he wants to always know where I am and that I'm with him. I believe he is fearful like lost and I'm his security. This could be the reasons for all the calls you get. I now have to see that his pills are taken & not just prompted. Same w/brushing teeth and showers. He forgets why he went into bathrm. He can still play cards but when he asks questions he knew when we started its time to end the game. At that point doesn't realize we're ending it early. He now sleeps till 12 may or may not eat his breakfast then and goes back to sleep till 2 or 3. When we have appts. I wake him and he goes as he won"t let me go alone. He has left water running when he suddenly has to hit the pot and then back to sleep. Always when eating out says he wants same as I have. Asks about cost but means nothing to him. Has no problems w/numbers. Walks slower and shuffles more. I am just now starting to make arrangements for couple hrs out alone. Hope this helps. He has no idea what dementia is but knows he can't remember so have no reason to tell him as he could get frustrated then shout. His brain is like a loose light bulb. I find less said less frustration on their part. 36 Hour Day is good book plus this site is fantastic.

mother was diagnosed with dementia 3 years ago...it was mild but one night she had a complete mental breakdown..one day she knew most everything, the next day...hardly anything...no stroke...this was due to her 66 years of marriage and her taking care of my dad during his long sickness...
The days ahead can be very blessed...but it is also heartbreaking to see them struggle with the day to day life needs....being very real...you will cry a lot..you will laugh a lot...emotions will be like a long roller coaster ride that never ends...the family will find reasons not to help...(or so goes mine).... I keep a journal that helps me vent, keep up with things and remember all the blessings mom still brings even now...it is not easy..but with lots of prayer, patience and love you will get through will great grace....try to enjoy the journey...as much as you can...will say a prayer for you....blessings to your Mother and you.