All the doctor told us was that my mom was diagnosed with dementia. What do we do now?

PStern1966, I think every caregiver for someone with dementia wishes that! One challenge is that there are about 50 distinct kinds of dementia and they do not all progress in the same way. Another is that even persons with the same kind of dementia vary greatly in how the disease progresses.

About 60% (more or less, depending on which study you look at) of dementia cases are Alzheimer's. That has been studied enough to establish recognized "stages" and searching for Alzheimer stages online will give you some charts for that. Keep in mind that there really is no way to say how long each stage will last, and that is one thing most caregivers would like to know.

My husband had Lewy Body Dementia, which does not progress in recognizable stages. It was still useful for me to research the symptoms of this kind of dementia and kind-of-sort-of have a general idea of what to expect.

I wish there was a table that shows the progressive effects of dementia over time, so then one would have a better idea of what to expect.

My mother is 66 and in last stage of Dementia. I have been here with her for the last 2 years and some. From what I gathered from her PCP her condition started around the time my father passed about 6 yrs ago. But everyone that knew mom thought this change was the stress and grief of lossing a husband of 43 yrs, so it was brushed off.A little over two years ago (2009) she was commited to a psych ward by her friends who thought she was having a nervous breakdown. But after tests were confirmed it was Dementia at the mild/moderate stage. I have never been able to get a more precise diagnosis. Like what type? I am constantly told its just Dementia. My concern is that since both mom and her father had early onset is this hereditary? I would like to know? But there is never no answer to that.

I have done hours and hours of research online to better understand. I have taken mom to many doctors. Looking back over the last 2yrs. moms progression even with Namenda/Aricept has declined in 3-4 month intervals. Everyone with Dementia progress' differently. Example a church friend of my mothers who was diagnosed with early onset about 12yrs ago or so is holding strong in the moderate stage and she has never took medicine.

Mom might be last stage but she still knows me by name as well as my husband. I believe she has lost the concept that I am her daughter within the last 4 months. But she still calls me Jamie which I know there is still a face and name recongition. Believe it or not she has learned the hospice nurse's name and once in a while she will call the nurse by name!!!
I strongly believe mom is still "in there" but this Dementia is like cloud covering the sun. You know the sun is there but just can't see it thru the clouds. But once in a while the sun will fight its way thru the clouds, if only for a minute and shine brightly. But the cloud will soon again ingulf the sun. Thinking of this like that has helped me. I have always and continue to speak to mom as a person. My sentences has gotten simplier. But I have taken pride in giving my mother the dignity, respect and the best quality of life that I can provide. By allowing her to live at home till the end and dedicating myself to her, I have no regrets. I believe my father would have wanted this. God and my dad has given me the strength to handle each day when I thought I can't do this anymore.

You have found a great site to get the answers you need. There is alot of us that can help you get through this. Just be patient with her. Don't be surprized if her personality changes. Mom went from being a harsh woman, to a very loving lady. Just try to laugh as much as you can. It will help you get through the stress.
If your mom has unfinished legal things;POA, will, living will. Now will be the time to set it in motion and get it finished. Have her do "can you name that" game. I used to have mom name things in the house daily. Just try to keep your moms mind working with past and present things. Keep her involved with hobbies shes likes. My mom loved to look at photograph albums. I used to have her try to explain the story behind the photo or I would start with the story and she would finish. That was our bonding time. Your mother will become very dependent on you. Especially, if your the only caregiver. If you are going to be the caregiver, get a game plan for yourself when you can get a break.And stick to it. You are still a person who needs a life of their own outside of the chaos.

You will learn that some of the best answers your going to get is to research on your own. Don't put your trust soley in just one doctor. Always ask tons of questions. This is a learning experience, its almost like trial and error. What will work for one might not work for your mom. Just be open minded and follow your heart.

So sorry to hear about your Mom's dementia. My father is 91 and started having symptoms about 65. One of the best sources for info and help is the Alzheimer's Assn. Their website is www.alz.org. At her age she needs to keep her mind active.
You should make sure her personal affairs are in order. Most counties have a home day care service where someone comes in for a few hours a day and can take care of the personal needs while giving you a chance to get away for a while.
We went through Passport which was through the Cleveland area Council on Aging.But first had to be on Medicare or Medicaid (not sure which) and then they pay for the home health aid. The aid will also be a companion for your Mom. My Dad went to an Alz facilty when he was 90 and the put him on the Excelon patch and that helps somewhat , but he is in the advanced stage. They had to move him to the Nursing home section. The kids had a trust set up that transferred all of my Mom and Dad's assets to the trust so that the state wouldn't take it. But the trust needs to be in effect for a certain length of time. We consulted and elder care attorney early on, while both parents were of sound mind to make the decision to sing over to the trust. And though it was expensive, it paid off in the long run because the nursing home only gets about $50 a month. Please start research all the great sites and agencies that can help you. I wish you the best of luck and don't ever feel guilty for getting upset with your Mom because it will only stress you out.

I took my 83 year old mom out of an assisted living facility a year ago this week. I am blessed with 3 wonderful ladies and one terrific husband who help me care for my mom in our home. She spent 3.5 years in assisted living with dementia, and for 4700.00 a month, I guess I expected more. This time last year she was very confused and twice walked right out of the facility and a care giver found her wandering in the parking lot!!! Come on...what am I paying you to do? So, I put in a walk-in bath tub, handicapped toilet, found some wonderful helpers and brought her home. No regrets!!!!

Hi Kelly B try your state agency on aging. Also check out the alheimers website alz.org the book 36 hour day is great. All the advice here is great but you also need to recognize each person progresses in a different way. Each family and individual also react in a different way so to a certain extent you'll be finding your own way as what works for one doesn't necessarily work for another. Here you will find support and people who are willing to listen and give suggestions when able. Good luck!

The dept.of health and human serviceshas a large collection of books on Alzheimer's & caregiving. Some are free. I sent away for some. They are very informative. Just go to their website. Good luck.

I agree READ the 36 Hour Day......I read it after the fact and then it all made perfect sense. Wish I had read it "before". We all get a little Dementia as we age. I would consider getting a Durable Power Of Attorney and also consider becoming an Authorized Representative. good luck.

n1k2r3 - its more than possible.

According to the Mayo Clinic: Of all the people who have Alzheimer's disease, only about 5 percent develop symptoms before age 65. So if 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease. Early-onset Alzheimer's has been known to develop between ages 30 and 40, but that's very uncommon. It's more common to see someone in his or her 50s who has the disease.

And these numbers don't include dementia causes other than Alzheimer's.

Kelly B. Now you know what you have to do. There is a wealth of information out there on Dementia. Good luck in your pursuit of this debilitating illness. Age 60 is very young to have the symptoms of dementia, however I suppose it is possible. You have a long way to go with your mother. Best wishes to you and to her .

Kelly, first of all 60 years old?? Oh my gosh that's hitting really close to home with myself I can tell ya. I would think that getting her on Aricept or Namenda would be what her doctor would suggest to start with. Most people with dementia are much older so I have no idea if dementia is the same across age differences or not to tell the truth. My mother-in-law's doctor told me that just because she had dementia it didn't automatically mean she'll get Alzheimer's, so that's good news for you. Also he told me that the stages of dementia can either be slow or fast depending on the person. So your mom could be like she is for years or not, who knows? Either way gotta get her started on meds to stave it off. I've also seen online that there are many clinical trials going on across the country for dementia/alz people. I thought about that for my mil but I think it's too late for her, but maybe not your mom.

My mom has some kind of dementia and she will be 92 in December. It seems to me that this probably started much sooner than when we actually started noticing it. She recognizes people, but often has trouble remembering from where. She has no problem with people she sees regularly, including immediate family, but I'm sure she would be confused with some relatives she hasn't seen in a while.

I'm lucky that my dad is 5 years younger and is still able to care for both of them. They are in a retirement community now and I live nearby. At first we were noticing every little thing my mom did that seemed to confirm her dementia, but in her case, she seems to have plateaued for awhile now. Dad has gotten her into a day program called "Helping Hands." She goes twice a week and they have movies, various activities and lunch. She's friendly, but has never been outgoing and yet seems to enjoy this.

No matter what, it's difficult to see your parent this way. And, it's scary because you worry that it will happen to you. Every time I forget something I worry! But my mom is actually quite happy and pleasant to be around. We've gone thru times when she's gotten dreams confused with reality and been upset. I quit trying to convince her and instead redirected her. For instance, she told me my brother's wife was upset with her about something. We all knew it wasn't true, but Mom insisted it was. So I finally said it must have been a misunderstanding because Angela always tells us how wonderful she thinks Mom is. That worked and Mom was happy again.

Sorry this is so long. I guess my point is try not to feel like you or your mom are doomed. Everyone is different and she might surprise you. It can be frustrating, but there can also be some truly good times still. Good luck to you and your family.

Kellyb, my mother-in-law had mild dementia. I received excellent advice, wish I had gotten it sooner. I would get so frustrated and angry with her and try to explain why she should not do certain things that were unsafe for her. Or be angry with her because she complained SO MUCH it drove me nuts. The advice I received was do not try to reason/argue with her. She will not understand or agree with you no matter how much you try to explain things to her. If you are in the car with her and she makes you really angry, pull over, park and get out and walk around till you cool off. Having a caregiver come a few days a week for a few hours a day helped me get a break from being around such a negative, frustrating person she had become.

No one mentioned the roller coaster ride it will be. Just do not beat your brains out trying to understand why one day she will seem almost fine and the next she will be a total mess. You just never know, literally, one minute to the next how she will be. EVERYTHING , personality, demeanor, reasoning, will be changed. The mother you knew will be fading, and will be replaced by this unknown person that some days you will not recognize who she is. It is very sad. My mom was diagnosed about 6 months ago and everyday is a challenge and every day is different. But in the end, thru all the chaos, she is still mom. On the bad days, remember, she didn't bargin for this either.

There is a lot of good information in these answers. Take time and use them! And, don't anticipate anything. All are different.

Confirm the diagnosis and know the type of dementia. This means see a gerontologist or neurologist that SPECIALIZES IN DEMENTIAS. Then, inform close family members to ask for their understanding and support. Next, find and join a support group! YOU ARE NOT ALONE!! Stay positive - you can do this!

Kelly b, I have been caring for my Mom for 5 years she is 87 now and still slowly progressing in her dementia. I have lots of experience in working directly with dementia. I was a recreation director for long term care facilities for over 30 years. It is tough to see your own loved one going though this but I keep my chin up and smile a lot at my Mom. I know my love for her will help me though whatever is to come next. I agree with everyone and the advice they give. I think that the professionals are the ones who can help you with what to expect and what to do for your situation like meds. etc. but the caregivers are just as important because it is reality everyday for them. There is help and there is hope you will have to be proactive in caring for yourself and your Mom, I believe you have a son also. The major thing for me is to make sure I get a break, it could be several hours, a day, or maybe even a week. And then I rest, or do something just for me...And for your Mom try to keep her active sometimes its easier for us do something like set the table, fold the clothes etc. but if you give it to Mom it will benifit her, also taking walks, looking at photo albums, magazines, We like to watch game shows and guess the answers. I am looking in to an Assisted LIving that has a Day Care for Adults at less than $10.00 per hour with meals included. The socialization is important.Even at church Mom seems to brighten up saying hello to people, Keep the faith you are a blessing to your Mom. God Bless the Caregivers..

It seems to me every person who gets really old gets some degree of dementia. In my mom, it is forgetfulness of more recent events and sharp remembrance of stuff from 20+ years ago. That is pretty standard. She repeats things because she doesn't realize she just said them. But she doesn't have the kind of dementia where she thinks the oven is the dishwasher and puts all the dirty dishes and soap into it, e g.

There is a book called 36 Hour Day by Nancy Mace it is a very good book and will help you understand more about the illness , also go to you county and ask about the elderly services they have for her, that helped me a lot with adult day care and showers. You will find answers for some of your questions. Hope I helped a little.

I apologize that the doctor did not sit and talk with you through hearing the diagnosis of dementia. Could you tell me a bit more about your loved one who was recently diagnosed as well as a summary of the situation? Plus if you could give me an idea of your goals if any as well as some questions you would like answered that would be great. Thanks in advance. Wishing you strength, courage and happiness with those in their days gone by.
Deanna

sorry about your loved ones diagnoses. my husband has had AlZ since 07. the doctors say he has little time but some days I wonder. He has not known any one for a year or more now not even who he is. he talks to the Man in the mirror. he walks constantly through the house but will not go outside. he eats and eats but is losing weight fast. does not sleep well at night and does not nap at all. He has had fits of rage, has been on every med for AlZ and nothing helped. he is not in pain but gets lost in the house. Has worn depends for a year and poops and pees in them. I am the caregiver at home for him. I hope and pray everyday God will have mercy on us and take one of us! I hope you can find something that will work for your mom. sorry for the gloom and doom but I have really had it. get help if you can you will need it. God Bless

What kind of health care provider diagnosed her? My husband's internist said, "so sorry. He has dementia. Here's a prescription for a walker so Medicare will pay for it. Good luck." When we saw a behavioral nuerologist he told us the specific kind of dementia hubby probably has, gave us tons of literature on what to expect, started him on a drug, told us there were many other drugs to treat other symptoms but we had to start them very carefully, one at a time. A doctor who treats dementia everyday can give you some guidance. It may not be what you want to hear, but it is very worthwhile. Especially for someone as young as your mother, it is sad when doctors say "It's dementia," throw up their hands, and wish you good luck. So that is my first soapbox. Take Mom to see a specialist.

There is a whole long catalog of syptoms that may be part of dementia. Every dementia victim has some of the symptoms. No dementia victim has all of them. You just have to take them one by one, as they come up, hopefully with an understanding and knowledgeable doctor behind you. Sometimes having a better idea of the kind of dementia can help you know what to expect a little better, but it is always a crapshoot until the symptoms appear. People with Lewy Body Dementia or Parkinson's with Dementia are likely to continue to recognize loved ones until the end -- but that is not 100%. People with AZ are likely to have trouble with that in later stages, but not all of them do.

There is a good general dementia web site by the National Institute on Aging, called Dementia Care Central. It has information about each type of dementia and listings of lots more resources. That might be a good place for you to start.

kellyb - I am so sorry re your Mom's dementia. When my Mom was diagnosed 6 yrs ago they gave us no specifics either and we learned on our own. I oud think it would be helpful to start to know the indicated cause of her dementia, as there are severla different kinds. All the info is contained within this site no doubt (I am reltively new here) but also by googling 'causes of dementia' and 'stages of dementia'. Re the stages: you can fairly well determine the stage she is in by her behaviors. Also remember there are no specific times attached to each stage. Some progress very quickly - others, like my Mom, has been in 'the final stage' for a very long time, and may continue there for some time to come. I believe a lot depends on the state of their general health - and my moms is very good.

Do arm yourself with information. Thre is so much to know. I posted earlier that the September 2011 Readers Digest (US edition) on pg 168 has a caregivers survival guide with info especially useful to someone new to caregiving.

Good luck and many hugs to you.