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

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!

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

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.

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

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.

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.

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.

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.

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 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.